Menopause Matters Forum
Menopause Discussion => Alternative Therapies => Topic started by: Mary G on March 01, 2020, 02:47:39 PM
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Is this the right place to talk about compounded hormones aka bespoke hormones?
I'm not a regular in this section (which I know was very hard fought) and I don't want to introduce a thread which is unsuitable for the Alternatives board.
There has been much debate about compounded hormones on westie's thread in the All things menopause section but it is not a conventional form of HRT and it is not available on the NHS so I thought perhaps it might fit in here?
Your thoughts would be appreciated.
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We should be able to discuss anything associated with peri/menopause here. As long as we aren't advertising items for sale there shouldn't be a problem.
Go on, you start ;)
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Yes, absolutely! Not so long ago taking HRT transdermally was viewed askance by HCP - actually my breast nurse at the clinic had no idea you could get oestrogen in gel form, and that was last month!
Same with using Utrogestan vaginally - viewed like witchcraft by many GPs. As for testosterone for women.....
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Mary G I do hope desperately that you can discuss this here. I have not introduced myself , but have been following this forum daily for the past two years as I have and am having the menopause from hell.
I am currently 3 weeks into the Jaydess and feel awful, but it was a last attempt at trying progesterone before a hysterectomy.
My family and friends think I'm mad for persevering and do not understand my reluctance to have a hysterectomy when I'm suffering so badly. Not sure I even know why ,but I think if I was in a better place I could think rationally.
I had the Mirena for years and had no problems until 2 years ago but now cannot tolerate any progesterone. Utostegan the worst.
I need the oestrogen as my natural levels are only 48pmo/l and get really depressed .
I have digressed . Sorry. But I feel like I might have another option to explore with the bespoke progesterone. I just do not know where to start.
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Hi KBallenger :welcomemm:
So sorry to hear you are really struggling. Like you, I was a lurker for a good while before joining & learnt much from the wonderful women here. No time to say more just now, but you are so not alone with this. As Stellajane says please keep posting & let us know a bit more about you if you are comfortable with that, so we can see whether we can help.
Wx
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Hi KBallinger
I see you joined and posted back in October but as I didn't welcome you then :welcomemm:
Sorry to hear about your menopause and HRT woes. Can you tell us a bit more about yourself - how old you are, how long you've been on your current HRT regime - what oestrogen you are taking, whether it is dealing with your symptoms? If you have had a premature menopause and are well below the average age of natural menopause then you will be needing to take a consistently high level of oestrogen to protect your bones and heart.
I'm afraid bespoke/compounded progesterone regimes are not recommended by any of the academic menopause societies including the British Menopause Society, nor the medical profession nor leading gynaecologists. I really appreciate your struggles with progesterone but you would be advised to use a proprietary regulated product obtained from reputable sources in order to properly protect your womb in the long term.
I can point you to lots of statements and blogs about this - what is known as BHRT.
In addition the British Menopause Society has produced a consensus statement here:
https://thebms.org.uk/publications/consensus-statements/bioidentical-hrt/
On their "Find a Specialist" page they also say this:
"In particular, the BMS does not endorse the use of compounded bioidentical treatments
For an explanation of the differences between regulated and compounded bioidentical treatments, please see the BMS Consensus Statement on Bioidentical HRT."
Tell us what else you have tried in terms of progesterone regimes including individualised ones? Do you think your oestrogen levels are high enough? Maybe you need more which will somehow drown out the negative effect of the progestogen being given out from the Jaydess? The fact that you tolerated the Mirena for years is a good sign! Don't forget that the initial few weeks of progesotgen level will be the highest and it will gradually reduce so maybe the side effects will subside?
Do think a bit more about increasing oestrogen and in the meantime here is a thread about BHRT started by forum admin Emma a few years ago, when another member (Dana) quoted a large number of articles which might be of interest. It became a buit controversial but there is someuseful info on there! I think the statemnets on there (from the menopause societies etc) still stand even though a few years old now.
https://www.menopausematters.co.uk/forum/index.php/topic,37209.15.html
Of course you will want to decide for yourself but hopefully the official view from the medical profession on this will help you make an informed decision.
Let us know if we can help further :)
Hurdity x
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BHRT stands 4 what exactly?
Also - why isn't compounded progesterone regime recommended? When did the British Menopause Society become the voice piece for what should/not be prescribed?
An official view may not be enough for many patients .......... unless patients are prepared to try medication 'outside' what is deemed acceptable, the regimes would be stuck in the Ice Age >:( - we wouldn't have transplant surgery etc.. Someone has to go off piste in order for evolution to occur ...........
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Google it CLKD - it has been mentioned many times over the past few years. Read the thread I linked to or the statement by BMS if you want to know why it's not recommended.
If you object to the BMS (why on earth would you want to disregard the opinion of our academic menopause society along with the others?) then here is a very simple version on NHS which really does not say very much but basically summaries why not:
Bioidentical or "natural" hormones
Bioidentical hormones are hormone preparations made from plant sources that are promoted as being similar or identical to human hormones.
Practitioners claim these hormones are a "natural" and safer alternative to standard HRT medicines.
However, bioidentical preparations are not recommended because:
they are not regulated and it's not clear how safe they are ? there's no good evidence to suggest they're safer than standard HRT
it's not known how effective they are in reducing menopausal symptoms
the balance of hormones used in bioidentical preparations is usually based on the hormone levels in your saliva, but there's no evidence that these levels are related to your symptoms
Many standard HRT hormones are made from natural sources, but unlike bioidentical hormones, they're closely regulated and have been well researched to ensure they're as effective and safe as possible.
https://www.nhs.uk/conditions/hormone-replacement-therapy-hrt/alternatives/
I think that was also linked to in the forum thread I linked to as well.
Hurdity x
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I won't use GOOGLE Hurdity - it's up to the Member to make sure that every one is completely aware about what is being discussed.
Tnx though. It's about time then that more Research was done to bring biogenetical hormones in line with other treatments as ladies do find this type of treatment of use.
'natural' - well digitalis is natural ::) ;D. I also know that some are sensitive to the fillers and/or packaging that chemical HRT is delivered in. Even though the BMS recommends so called 'naturally sourced hormones' if someone finds benefit from other preparations and is thoroughly supervised; in the same way as that dreadful weed cannabis can, in some forms, save Lives - what's not to like? We are all adults after all.
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Hello KBallinger and welcome.
I totally sympathise with how much hormones can cloud our decision making process. I remember feeling unable to even decide which foot to put a sock on first, I felt that foggy and overwhelmed. Making a decision about major surgery would have seemed insurmountable.
I have to say it, but progesterone is a bitch! I am severely intolerant like you, and on some of the HRT in pill form, U became so depressed on the progesterone tablets that I was suicidal. I'm not exaggerating, sadly.
I saw Prof Studd and he explained that women can suddenly develope an extreme reaction to progesterone, when they'd previously been okayish. My sensitivity to progesterone basically fell off a cliff when I reached 43.
It's definitely worth trying every available variation of progesterone even if it's a compounded one (obviously don't buy it off the Internet) because at least then you will have the peace of mind of knowing you tried everything possible before having surgery (if you need it).
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The Menopause Society do sterling work. But Prof Studd was their chairman for years and yet he is still seen as something of a Menopause Maverick by most of the medical profession.
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Hi girls,
Excellent thread. I have some very interesting material on this subject and will be glad to share it as soon as I can, still gathering some important evidence.
BeaR.
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Thanks everybody.
I want to start by saying that compounded hormones aka BHRT or bespoke hormones are not available on the NHS and are not mainstream HRT. To that end, they are only suitable for a minority of women who are post menopause, have tried conventional HRT and/or progesterone intolerant and need a bespoke progesterone dose. So compounded hormones should not be your first port of call and should only be considered as a last resort ie if you are facing having to have a hysterectomy to combat progesterone issues or you are having to ditch HRT altogether because you have not been able to find a suitable form of conventional progesterone.
I am probably an unusual case because I can't tolerate any form of synthetic progesterone including the Mirena coil or Utrogestan at any dose or in any combination. Like GRL, I had been successfully using the low dose 100mg 7 day Utrogestan regime for a number of years but I got to the stage where I literally could never take Utrogestan again because it unbalanced my hormones to the extent I was having continuous silent migraines. I was staring down the barrel of a hysterectomy.
I decided to have one last attempt to find an alternative before opting for a hysterectomy when I came across bespoke progesterone. I decided to consult my migraine specialist again and she said I had to stop having a cycle and needed a balance of body identical progesterone, oestrogen and testosterone every day without any fluctuations. We delved further into my migraine history and she concluded that my migraines started in peri menopause because of the lack of progesterone which, during my reproductive years, had acted like a protectorate and prevented my having migraines because it was balancing out the oestrogen (preventing spikes) hence no migraines until my progesterone levels dropped dramatically. This also explains why I was able to take the contraceptive pill and have a Mirena coil without migraines pre menopause. It is possible that a hysterectomy would not have worked in my case.
Armed with this information and on the back of a recommendation, I found a clinic in London who specialised in bespoke hormones. The dcotor (who also works at an NHS menopause clinic in London) read the report from the migraine specialist, went through my endless pages of blood tests results and agreed that I desperately needed hormone stability and prescribed 50mg progesterone every day alongside 1 pump of Oestrogel and testosterone. I was horrified, not least because of my problems with Utrogestan but also I had to stop using the Lenzetto oestrogen spray which I loved - she said it is a good product but not stable enough for migraine sufferers. She assured me that my experience with the progesterone lozenge would be nothing like vaginal Utrogestan. I was not convinced and told her I didn't think it would work and that I would only agree to it as long as I could use 2 pumps of Oestrogel every day. We had a deal. I went away thinking I would give it a try but I was not confident. I am pleased to say I was completely wrong!
That was over 18 months ago and it has been brilliant with no side effects, no bleeding (consistent womb lining of 3.3mm) no breast pain (something I have always experienced with all types of progesterone) no PMS symptoms or any side effects at all. I feel as good as I did on the oestrogen only part of the cyclical regime.
I was using a split dose of Oestrogel, 1 pump in the morning and 1 pump in the evening and I had a migraine during the afternoon so I have since reduced to 1 pump of gel in the evening which rectified the problem and didn't notice the difference. The migraine specialist said that the migraine was caused by the extra pump of gel in the morning which threw my hormones out of balance - my migraines are caused by oestrogen spikes.
To pick up on your point Stellajane, these clinics are very closely self regulated and you have to jump through hoops to get a prescription. At the initial consultation, I had to take all my blood tests results, latest transvaginal uterine scan results and I took a copy of my latest breast ultrasound scan. For the follow up consultation a year later, I had to produce a new set of blood test results, new uterine and breast scan results and I gave them my DEXA scan results. I would not have been able to get a repeat prescription without providing these test results. So it is not possible to cheat the system and pretend to be toeing the line because you have to provide proof and they need to see that the regime is working properly.
I should point out that this regime would not have worked for me 10 years ago. My oestrogen levels are consistently about 270-300 pmol which would not have been anything like enough for me before and I would have been constantly sweating buckets. I imagine the body changes over time and perhaps it is possible to be symptom free on a lower dose of oestrogen. Who knows.
Of course this regime will not work for everyone, there is no such thing as an HRT regime that works for everyone. However, for women who are having extreme difficulties with progesterone or perhaps those who have stopped using HRT and struggling to cope with the symptom or even those who don't want to bleed for the rest of their lives and can't stand Utrogestan, this is definitely worth considering.
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Such an informative post MaryG. To be honest it sounds like you're far more closely monitored now, than I have ever been under the NHS. Even under Prof Studd he had quite a laisez faire attitude to regular uterine scans! I have had 2 in 2 years, both showing my lining was nice and thin. But I sorted them out myself. And he was Chairman of the British Menopause Society!
I am so pleased you have finally found what works.
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StellaJane, my Mum used Revlon eyeshadow and mascara for 20 years. Then one day, she woke up with two very puffy and sore eyes. By a process of elimination she discovered she had become allergic to her eye make up! Her GP said it often happened especially to ladies of a certain age...interesting my Mum's allergy happened at the same time her periods went erratic in her late 30s.
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Thanks GRL. I am monitored far more rigorously than I would be with the NHS. As far as I can make out, the NHS do not monitor women on HRT with uterine scans etc and there is no guarantee women are sticking to the prescription and many probably cheat and take far less progesterone that prescribed - I should know, I have done it myself due to migraines.
These private clinics have their reputation to protect and if they were putting womens' lives at risk in any way then believe me, a rag like the Daily Mail would be all over it.
BeaR, that sounds very interesting, I look forward to reading your material.
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Very interesting post MaryG you tackle perhaps the most frequently asked question on this forum, that of progesterone intolerance.
Like you I know that bespoke options are not 'signed off? so to speak by the powers that be, but that is because it is so hard to regulate and not because the particular regime that you have discovered does not work. And of course as you so rightly point out you are being closely monitored.
I myself am currently investigating a bespoke regime regarding progesterone, after trying and failing with everything currently available on the nhs.
Surely the bigger question - and I've said it on here many times before - is when are we going to have more viable prog options for this very real problem. Then and only then we won't have to go outside the box/pay to feel well x
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Thank you stellaJane and Wrensong for your kind words.
Thank you Hurdity I will post more about myself in the private Lives section as I'm not sure there are too many kballinger's in the world and would hate some of the details to be seen by work colleagues and friends family I have not shared such info with.
X
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GypsyRoseLee I can totally relate to how much you have suffered due to progesterone. I would not wish it on my worst enemy. Sorry you had to go through that. X
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Glad Hurdity's been along to meet you, KBallinger. Do post again.
Wx
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It is a shame that the British Menopause Society have taken such an extreme stance against compounded products, they also mention saliva testing which is nothing to do with UK BHRT clinics so I'm not sure where theyre getting their info from? Maybe the US.
NICE do not hold such strong views against BHRT, they just say that practitioners should make it clear to patients that BHRT is not regulated, they do not state that it should not be prescribed.
The BMS is not a government organisation, simply a society that menopause practitioners (not just docs) can choose to pay to join for advertising their services, industry updates and access to seminars etc. They are supported by the practitioner fees and seminars but they also receive occasional funding from the regulated HRT manufacturers (like Besins) so there could be financial conflict of interests at play.
Im sure that Prof Studd would like to be able to offer the 50mg progesterone but then he couldn't be promoted by the BMS as, although you can be a member for the other benefits, you can't be on the practitioners list if you prescribe BHRT.
Im not saying that the BMS should promote online products (although they do promote Sylk and YES) but they could be open to products made in specialist compounded pharmacies via GMC registered UK doctors, for example.
Fortunately, on an open forum we can learn from each other and not be restricted by corporate vested interests.
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:thankyou: dangermouse - that's the best bit of info I've read today :foryou:
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Yes, puts it all into perspective Dangermouse x
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I heard from elsewhere the other day that Professor Studd has retired. Anyway I digress. I find it a bit weird that utrogestan is "micronized" progesterone and supposed to be as close to the type the body can produce. Surely the issue (regulation aside) is the doses that it is manufactured in. A 25mg utrogestan pill or a 50mg Utro pill would likely beneficial to some women.
MaryG or someone (one of you clever pharma ladies :)) can you tell me what these bio identical lozenges contain? Is it something different from "micronized progesterone" which I understand to be very different from synthetic progesterone which is different again?
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Fabulous post dangermouse. I think it behoves us all to remember that enormous sectors of the NHS are very much money orientated, and we are all subject to the post code lottery when it comes to the availability of treatment and medications, sadly.
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Great thread. I'm wondering where the E implant I'm now on comes into this picture.
I had thought in regards to estradiol only that all the patches and gels available on NHS were BHRT. And that it was only tablets like premarin that wasnt.
Very interesting posts ladies. X
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Excellent post dangermouse but the cynical side of me is not surprised. It explains an awful lot doesn't it.
Ladybt28, it is body identical progesterone but my experience with this product does not resemble my experience with vaginal Utrogestan in any way, shape or form. This is partly due to the dose (50mg) and the buccal (between top lip and gum) delivery system. Some women who need a higher dose of progesterone take 50mg every 12 hours.
After day 3 of Utrogestan, I used to feel myself gradually slipping away and it was seriously scary stuff. I used 100mg vaginally but it hardly made any difference to the side effects, the worse of which were silent migraines.
I wonder why so many women react so badly to Utrogestan? Is it because the dose is way too high? Obviously not everyone has a problem with it but it's the most frequent problem on MM.
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The progesterone lozenges that I have seen are micronized progesterone in a wax-like substance but I think there are other presentations. The main thing is that progesterone needs to be suspended in something like Vitamin E for sublingual absorption and then that needs to be coated for however it is being absorbed. The Ultrogestan is in a dissolving capsule for the stomach and I guess the acid in the vagina is enough to melt it too.
Transdermal creams can also be sufficient for womb protection if they use decent carriers and if the individual patient absorbs it well. I had read that transdermal did not suit progesterone but then tried a compounded one and my levels went very high.
At London Hormone Clinic I was offered 25mg progesterone lozenge (once it had built up in system) versus a 25mg oestrogen patch, if I had wanted to take HRT. Then if any womb build up they would obviously go higher with the prog.
I think the main difference with private BHRT clinics, as many have said here, is that they give you a lot of time and see you frequently at the beginning which is all embedded in the cost. This means they can give you the smallest dose of HRT to control your symptoms, rather than how the NHS have to use higher doses of progesterone to over-protect the womb because there are not enough resources to keep an eye on any womb build up, so it may be more for keeping testing costs down than them not bothering to try to source a lower dose.
Its a bit like how cheaper clothes are made in one size only, for some it can work but for others they need to have the specific size to look ok and so choose to pay more.
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KBallinger, I'm sorry, I forgot to say that it sounds like you are in the last chance saloon progesterone wise so bespoke progesterone might be worth considering before opting for surgery.
It's interesting that like me, you could tolerate the Mirena coil pre menopause. It could be that we have a similar problem.
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:thankyou: dangermouse
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I can really relate to this and am cheating really badly with my Utrogestan, using 100mg prob every 10 weeks or so, due a scan soon so am hoping it will look ok, I only take 1 pump of gel but that box of tablets sits on my bedside dresser and I make a different excuse every night not to start them. Started my 12 day course last night and already feeling jittery so would love an alternate option. ::)
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Another great post dangermouse.
I remember Professor Studd saying that 200mg Utrogestan for 12 days a month was bollocks! Joking aside, he makes a good point and most women don't need anything that amount of Utrogestan.
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I'm currently trialling 50mg natural progesterone (not synthetic) in capsule form. I take it at bedtime and have a lovely nights sleep and wake up in a good mood. it's nothing short of a miracle to me that I'm managing a continuous regime, as previously I couldn't get beyond 7 days on utrogestan. I also don't have any of the other negative effects of prog like bloating or quashed libido, but it's the stable mood I'm happiest with.
I see a practising nhs GP who has a special interest in menopause, she practices privately 1 day a week. She has said it may not work (although she's had lots of good results) and I won't know until I have a scan, but that's fine by me I was doing that anyway, I take full responsibility for my health x
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Great perin :)
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No Stellajane it's different (larger), I do know it's slow release x
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Progesterone intolerance is a weird beast. As you all know I am incredibly allergic to progesterone, even my own. And yet when I take 100mg of Utrogestan orally for 7 days a month I don't even notice it!
Funny that Prof Studd told you that 200mg of Utro x 12 days was 'bollocks'. He said exactly the same to me except he used the phrase 'absolute crap'. He is definitely a colourful character!
On a serious note, it's tragic that the NHS blanket prescribe far too high doses of progesterone for too long because they don't have the resources to properly monitor with scans etc. Especially when, I bet, so many women constantly rock up at their GP surgery because of all the nasty side effects that too much progesterone brings. That must tie-up so many NHS resources.
But it's just like DM says, it's the difference between buying an off-the-peg dress from M&S - and buying haute couture from Chanel...
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It is a shame that the British Menopause Society have taken such an extreme stance against compounded products, they also mention saliva testing which is nothing to do with UK BHRT clinics so I'm not sure where theyre getting their info from? Maybe the US.
NICE do not hold such strong views against BHRT, they just say that practitioners should make it clear to patients that BHRT is not regulated, they do not state that it should not be prescribed.
The BMS is not a government organisation, simply a society that menopause practitioners (not just docs) can choose to pay to join for advertising their services, industry updates and access to seminars etc. They are supported by the practitioner fees and seminars but they also receive occasional funding from the regulated HRT manufacturers (like Besins) so there could be financial conflict of interests at play.
Im sure that Prof Studd would like to be able to offer the 50mg progesterone but then he couldn't be promoted by the BMS as, although you can be a member for the other benefits, you can't be on the practitioners list if you prescribe BHRT.
Im not saying that the BMS should promote online products (although they do promote Sylk and YES) but they could be open to products made in specialist compounded pharmacies via GMC registered UK doctors, for example.
Fortunately, on an open forum we can learn from each other and not be restricted by corporate vested interests.
Gosh you're going for the BMS now?
Extreme stance?! I am sure the BMS would find that laughable that they are considered by some as an extremist organisation! I must say at this point that these "extreme" views are also shared (In addition to MM and NHS) internationally by the American FDA, North American Menopause Society (NAMS), the Australasian Menopause Society and probably the International Menopause Society and the European one too so it's pretty universal. In my first post in this thread I linked to the thread started by Forum Admin Emma in 2017 in response to controversies back then. If you look at this thread and in particular the long post by Dana you will see the statements of some of these organisations: https://www.menopausematters.co.uk/forum/index.php/topic,37209.0.html
Not sure where you got all that information about them dangermouse but it is important to put the record straight re BMS especially as your post has been highly praised.
Here is what BMS stands for (from their website):
https://thebms.org.uk/
"The British Menopause Society (BMS), established in 1989, educates, informs and guides healthcare professionals in all aspects of post reproductive health.
This is achieved through an annual programme of lectures, conferences, meetings, exhibitions and our interactive website. We offer a range of publications including our quarterly journal Post Reproductive Health and the definitive handbook Management of the Menopause."
"...simply a society that menopause practitioners (not just docs) can choose to pay to join for advertising their services, industry updates and access to seminars etc. They are supported by the practitioner fees and seminars but they also receive occasional funding from the regulated HRT manufacturers (like Besins) so there could be financial conflict of interests at play."
Please read a bit more about what they do! They are the main menopause organisation in UK. You can see what they do - I don't think any of it is "simply" anything. For those who aren't aware they are the professional academic society concerned with post-reproductive health and as such publish a quarterly peer-reviewed scientific journal of the same name (formerly Maturitas). Not just a little club for interested people to join. There exist such learned academic societies across the scientific world most of which publish the journals of research into whatever their discipline is. To refer to them in such dismissive terms is to do them a great disservice.
As for the funding - although it sounds like some members will obtain some funding through pharma etc for research, they do have a policy on declaration of interests which you can read here: https://thebms.org.uk/wp-content/uploads/2017/08/BMS-Declaration-of-Interests-01.pdf . They are also a charity so are governed by the rules of charities.
Where on earth did you get the idea that practitioners join to advertise their services? Yes this is one place you can find an recognised Menopause Specialist but far from being a negative service this is one way you can be assured that you're not visiting some sort of self-made quack! https://thebms.org.uk/menopause-specialists/overview/.
The find a specialist page on this very website - menopause matters links with the BMS find a specialist page. I am a bit puzzled dangermouse because if you don't agree with any of that - why are you here? I don't mean that impolitely in any way whatsoever, I am genuinely curious because all of the above forms the basis of current recognised menopause management, education and advice.
I've got a lot more to say on other posts but this one I will keep to the one topic ::)
Hurdity x
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Prof John Studd was the Chairman of the British Menopause Society for many years - and yet he is still considered an extremist maverick by much of the NHS.
I honestly don't think DM is 'going for anyone' here, that's a rather dramatic description. She is correct in saying that practitioners do have to pay an annual membership fee in order to access all of the BMS's resources etc. She isn't saying the BMS is a bunch of charlatans either because clearly they absolutely are not.
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Why the Lecture :-\ ........ we are adults. Quiet capable of reading what we need to read ....... and sharing experiences :-\. A simple 'do refer to the Link' should be enough to encourage Members to read/not - if they are really interested.
I do wonder why the BMS doesn't send every Surgery details which can be passed on to all the women in each Surgery? Educating both practitioners and patients at the same time? I would like to see the BMS state on their web-site exactly who they are targeting in order to get their message across ............ are they prominent in the daily press for example?
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I agree StellaJane. No one is forcing anyone to have treatment - we're just laying ALL the cards on the table and leaving it up to personal choice. This forum is one of the few places where all the cards can be laid out on the table, thank goodness.
Plenty of women use Utro vaginally despite it not being licensed for that in the UK. Plenty of women go long cycle which isn't how HRT is officially licensed to be used. Plenty of women use testosterone despite there no longer being a feminine dose available, so have to 'wing it' using the very scientific dose of a 'pea sized blob' ::)
I'm all for information being presented clearly in black & white. But there is also room for carefully researched, carefully monitored grey information, too.
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Why the Lecture :-\ ........ we are adults. Quiet capable of reading what we need to read ....... and sharing experiences :-\. A simple 'do refer to the Link' should be enough to encourage Members to read/not - if they are really interested.
I do wonder why the BMS doesn't send every Surgery details which can be passed on to all the women in each Surgery? Educating both practitioners and patients at the same time? I would like to see the BMS state on their web-site exactly who they are targeting in order to get their message across ............ are they prominent in the daily press for example?
CLKD - you were telling me yesterday to write everything out in full so that you didn't have to look anything up!!! There was a lot of misunderstanding about the role of BMS so I wanted to clarify it because I use their resources a lot and we couldn't do without them!
Hurdity x
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No-one is forcing anyone to do anything, but anything that is said may be challenged! It's interesting!
Prof Studd was Chair of BMS for two years the max term for all Chairs. He was pioneering in his treatment for depression using high doses of oestrogen and did masses of research into the effects of different doses and regimes of progesterone on the endometrium, and also amongst others made widespread in the UK the use of estradiol and progesterone for menopause in UK from what I gather (already widespread in France and continental Europe). I think the treatment of depression with oestrogen was the controversial treatment? More recently he has been prescribing the 7 day prog regime but I think actually (unless he has retired) more recently increased that to 10 days per month in view of the incidence of endometrial hyperplasia (this is anecdotal from reports on here!!).
GypsyRoseLee - the thing about vag prog is that there is a lot fo research into it and it is licesned elsewehre in Europe as well as licensed for fertility in UK, testosterone alos has been studies in women and the prescrption of it for women is using a regulated product (albeit developed for men) but at leats you know how much T is in it! Long cycles have also been studied. This is the whole point there are so many ways of individualising the HRT regime using existing products - we just need docs to be more (specialised?) educated and prepared to prescribe them!!
Hurdity x
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As stated in my original post, I just wanted to put this option out there for the minority of women who may be interested. Some will be interested, some won't, it's as simple as that.
Out of interest, what is the BMS solution for (the minority of) women like me who can't take any form of synthetic progesterone including the Mirena coil and can never take Utrogestan ever again? A hysterectomy paid for by the NHS perhaps?
Perinowpost, thanks for your post, I'm so pleased your new regime is going well for you. Long may it continue!
Stellajane, yes, that is about the size of it.
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I didn't ask for a Lecture though!
Well said stellajane :tulips2:
What happens if a GP won't listen even after advice has been sought, privately or otherwise?
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I certainly wasn't going after the BMS. I was merely stating that they may have rules to adhere to in what they can promote as they receive funding grants for research from companies that manufacture regulated hormones. Its nothing dodgy as they declare this in their public minutes.
Having worked in the health sector, these type of societies are common and a good idea to join, to be on their ?find a practitioner? page and to have closed professional forums, access to seminars etc. This isn't belittling them but just giving perspective that they aren't a government run operation.
The societies? strengths are in their members and most will be doctors and some will be people who set up a business to go and speak to menopausal women in work etc. I actually met one recently at one of my places of work and she was great but she did say she wasn't allowed to talk about compounded products which is what made me dig deeper in case there was a valid reason not to use them. Which, of course, I didn't find.
I think we should just be careful not to use any organisations or individual doctors? opinions of validity for anything.
DISCLAIMER ;D
Just to add that I am a member of the British Society of Clinical Hypnosis and could only stay a full member if I had studied the subject to post grad level and retained my Continual Professional Development (CPD) each year by attending seminars, working with a minimum number of patients and having insurance. Some members are doctors and some are, like me, merely practitioners. So I'm all for these types of organisation but recognise the restrictions also.
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So, in a nutshell, for anyone new who's getting completely confused.
You can get bioidentical HRT on the NHS from your GP or via a referral to an NHS menopause clinic.
You can get bioidentical HRT from a private clinic (you may be offered extra tests such as blood tests for hormone levels, endometrial scans etc). The doctor can write to your GP for him/her to prescribe the recommended regime on the NHS. Or you can pay for prescriptions privately.
You can get compounded (bespoke) HRT from a private compounded BHRT clinic where you'll have to pay privately for your prescriptions which are made up in a specialist pharmacy. You should have regular reviews and at least annual follow up tests such as endometrial scanning.
Please feel free to correct if I've got anything wrong!
Just one thing, if a private doctor prescribes oestrogen patches or gel plus bespoke progesterone, they will also write to your GP for you to get the available meds on an NHS prescription (so cheaper) and the bespoke meds you get sent separately. They will also prescribe Utrogestan to save you money if you prefer it.
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Wonder where all this info suddenly springs from ............ :-\ :: do people really have acres of files in order to copy and paste ......... :-\ or ?
Except that some ladies have found that their GP simply won't prescribe if someone goes privately ......... even when written to by the Consultant. What then?
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I didn't ask for a Lecture though!
CLKD that's uncalled for - especially twice - and going too far.
Wonder where all this info suddenly springs from ............ :-\ :: do people really have acres of files in order to copy and paste ......... :-\ or ?
Not sure what you mean here - the BMS publish loads of information - it's readily available - and yes of course it's kept as files... :-\
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Ladies. I have found all the information and experiences very interesting.
The Progesterone issue is very important to me as I also felt suicidal on utrogestan. I tried conti, cycling,, taking vaginally, the lot. I can never take it again I cant risk it.
On high dose eastrogen I was offered only one alternative under NHS and that was mirena. I didnt want it. For various reasons But I felt it was constantly being pushed on me. In the end I had to agree to it or I wouldnt have got the implant pellet.
I had it fitted nearly 5 weeks ago. After 2 weeks all the same side effects seemed to hit me as with utrogestan including very sudden onset of black dog depression
I was terrified.
It seemed to pass and the past week has been better which I did not expect because with utro the only thing that helped was stopping the tablets.
But my point is I was so frightened of going downhill fast that I wanted it out of me there and then. And that's not possible to do. I felt trapped. The implant cant be removed so I must take progesterone for at least the next 6 months. But if I have to have mirena removed which there is no question i will if i get like i did on utro with it, then I didn't think there was anywhere else to go.
So it is great to see these discussions and that there are other options.
Xx
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Consultants are keen to do hysterectomy, many still think 'whip it out' without knowing how this major surgery affects ladies. It shouldn't be viewed as an easy option to get women out of the Consultant Rooms!
It used to be the very last resort ...........
It also amazes me how some Members respond to certain threads but don't interact in others where their advice might be appropriate ....... :-\
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Oh TC I do sympathise. Whatever the progesterone is in Femostan 1/10 made me feel suicidal. It was horrific. I vividly remember standing at the top of Mallen Cove thinking 'if I jump now all this will stop'.
To be honest I would happily drink radioactive rat pee if it stopped those thoughts. BHRT seems like drinking pure ambrosia in comparison!
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Tc, if I remember rightly, you went to the C&W in London so I'm very surprised they didn't offer you the low dose Jaydess coil. I realise you have a high dose oestrogen implant but you are being monitored.
I completely understand how you feel, there are so few choices for women who can't tolerate progesterone and you might want to consider taking the bespoke progesterone route at some point. It's an extreme measure I know but I wonder if the C&W might suggest a hysterectomy if the Mirena coil does not work out. Obviously it's still early days and you might find the Mirena settles down after a while.
night_owl on here was also under the C&W. She had the same problem as me with migraines that started at menopause. She also reached the end of the road with progesterone but sadly, she has had to give up on HRT altogether.
You and I have Gilbert's syndrome in common too. It runs in my family but only surfaced at menopause in my case.
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Jaydess coil??? I have never heard of this! You see, this is why we MUST encourage open debate and discussion as much as possible.
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Mary thank you. the jaydess was never mentioned to me. The doctor said it would be "unethical" of her to not ensure I had a "reliable" source of progesterone before implant. Basically when she realised I was progesterone intolerant (her words) she didnt trust me to take enough oral progesterone regularly to cover me.
I wont have a hysterectomy. Ovaries removal has had a terrible effect on me. So I cant see myself agreeing to it.
Gilbert's yes. You saw my post on the other thread. Menopause is thought to trigger symptoms.
Xxxx
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My gynaecologist who has seen me over the past few years refused me the Jaydess as he believed I would react the same as I did with Mirena - maybe he was right! I suggested coming of Oestrogen but he believed without it I would become too depressed and I need protection for my bones as I already have osteopenia. Hence the suggestion for hysterectomy.
I went to a female gynaecologist who works privately as well as the C&W hospital to get a female perspective and second opinion. Her advice was that hysterectomy was not a bad option but as I'm in no state to proceed or make a decision she would be willing to try the Jaydess as she has had some success. I would need 3 monthly scans. My lining was measured on day 7 of Utrogestan and it was 3.8mm . She would like me to try 6 weeks to see if it settles. Today I'm struggling and am not sure I can but I will take each day as it comes.
I realise I am fortunate that I have been able to go private. Don't know where I would be if I wasn't.
Mary I know you are unwilling to say who you saw for your bespoke progesterone. Are you willing to say yes or no if it was someone at the Marion Gluck clinic? This seems to be the one that keeps coming up on google. X
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Posted a comment about what the lozenges contain (comes up around page 3) and Mary G answered and Stellajane I think - coming back to this, it has moved on somewhat (sorry ladies otherwise seriously occupied but miss my daily menopause matters visit :) Ref why BHRT lozenges might be better, it appears to me that it is the combo of dose but possibly the other ingredients and the delivery method. MaryG mentions some ladies need 1 x 50 mg lozenge every 12 hours which would be the equivalent of 100mg but all at once?? Just my thoughts on that bit.
Ref reactions - at the beginning I had side effects and the depressive reaction but it lessened considerably at 7 months and last 3 cycles (I'm now at 20 months) I have had only a very slight depressive reaction. in other words just a tiny bit lower than when I am on the oestrogen part only. The thing about that is that most people can't/don't hang on that long. As you all know there is no choice for me giving up would be an even more dangerous option xx
Even at my worst no one ever suggested a hsyterectomy to me nor if they had would I have considered one. It does appear from what has been posted and what i have read that women on lozenges and BHRT regimes do appear to get better monitoring. No one is monitoring me despite repeated requests for a womb lining scan. I have had none since starting hrt. Apparently they say "you dont need it as you are having no problems and no intermitent spotting. Come back to us if you do we will consider it then). The list of monitoring and bloods and other investigations and tests which MaryG lists is most comprehensive despite it being "unregulated". To be honest it is better "regulated" than I am at the moment >:(
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Re the Jaydess and my much publicised failed attempt to have one fitted (on here), I was told it may not work also. I wouldn't have known until I had tried it.
Re hysterectomy as an option, surely part of why it's not offered is because of the cost.
Re scans I have always had to pay for mine.
Summary if you?re at all progesterone intolerant/sensitive it's all such a lottery - which is precisely why we?re having this debate x
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Many Surgeons offer hysterectomy because it gets the woman out of his Clinic! and because they don't have much of a clue of the long-term after effects. My friend had 'enough wind to fly a kite' for weeks after :-\. Some of course really benefit from the operation. But as with many things, they won't know until it's gone.
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KBallinger, I would love to be able to reveal the identity of my clinic but believe me, it would be more than my membership is worth! Send me a PM and I will give you all the details.
There are quite a few clinics in London that offer bespoke hormones and plenty of others around the UK. I should mention cost. Most clinics charge ?300 for the initial consultation and about ?140 for the annual follow up. I have a yearly prescription and the actual lozenges work out at ?1.00 per day.
You should be able to have your annual blood tests via the NHS but the uterine scan will probably cost about ?100. Even when you add up the overall cost per year (roughly ?600) it's still less than some people spend on holidays each year.
Not ideal I know but the great unanswered question has to be - apart from a hysterectomy - what is the alternative for women who (like me) categorically cannot tolerate any form of progesterone offered by the NHS?
I'm still waiting for an answer.
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MaryG and Lady - same her. Virtually zero monitoring in my 3 years ping ponging between GPs and Menopause Clinics.
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Gypsy. I missed that you had replied to me. Thank you.
Mary and stella.
I've had answers and they all amounted to the same unhelpful thing.
"You dont "fit into the box" "most women are "fine on utrogestan," and worst of all maybe I should "give up HRT if it doesnt suit you".
The language comes over as blaming.. One doc said "your uterus is the problem you should've had it removed when they took your ovaries out". Another said "why did they not whip your uterus out while they were at it". The reason they didnt was because it was perfectly healthy. !!!
rather than blaming the patient who doesnt "fit into it" maybe they should be looking at the "gold standard" approach and whether its the best way to deal with something as complicated and individualised as hormone balance.
If it wasnt for this forum I would be left feeling I'm unusual, thinking "what is wrong with me that my body is reacting in this way" and I might have done as suggestrd and "given up". Under the impression that I'm a hopeless case and would have to cope with surgical meno without any replacement as I still have a womb.
Xxxx
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It shows how little consultants are aware of how HRT affects ladies! One size does not fit all :-\
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Haven't managed to read all the back posts on here since was last on the forum but a couple caught my eye...
Jaydess coil??? I have never heard of this! You see, this is why we MUST encourage open debate and discussion as much as possible.
Hi GypsyRoseLee - this has been discussed several times before and there are threads on it if you do a search - not on this board though as it is not an alternative treatment to HRT - you wont have seen the threads because ( I am pleased to say on your behalf?) that you haven't been here - because you have been - I imagine feeling well?! That is meant as a positive thing!!
Oh yes of course we must encourage open debate and discussion - but a lot of discussion on this particular thread perhpas more properly belongs on the main menopause board where it would be seen by more members - eg all the different types of proprietary progesterone there are, progesterone intolerance, all the different regimes that are possible using existing products, all the different off-licence combos that have been tried via some of the specialist menopause gynaecologists. I could post for hours about all of these - but not on this thread though - as it is very niche (the cBHRT), and I say again not regulated nor recommended so of limited applicability to women in general.
It shows how little consultants are aware of how HRT affects ladies! One size does not fit all :-\
We all agree there CLKD and that is oft quoted. Fortunately there are so many different regimes and regulated products available that it can be possible to have individualised treatments with suitable expertise and monitoring.
We must fight for what is our right wherever we can! One long-standing member used to have these lyrics at the bottom of her post and I have Take to twitter and more. Sign those petitions, write to those MPs....
Hurdity x
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So if not recommended to women in general, this room is exactly the correct place? :-\ and if people are really interested, like most visitors, they will browse round and join in?
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CLKD I was referring to the general discussion of progesterone intolerance and all the other very important and widely applicable stuff about regimes using current products, Jaydess etc - they are not alternatives to HRT.
Hurdity x
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There has been a lot of discussion and excitement about the prospect of being able to buy a bespoke 50 mg progesterone lozenge as part of cBHRT (ref stellajane's post giving the acronyms and what they stand for).
However not all progesterones are created equal and in particular each formulation will be absorbed in its own particular way to give a different systemic level and time-curve of absorption. It is just not possible to say that such a 50 mg progesterone (that you are using Mary G) is necessarily what we?re looking for because there is nothing to compare it with.
Just to emphasise ? just because it contains 50 mg of progesterone does not mean it will be equivalent to half the dose of Utrogestan given vaginal or orally (each of which behaves differently). It is all extremely complex.
So ? if we were being offered a 50 mg capsule of Utrogestan (or similar micronized progesterone in soft capsule) then we'd be talking. ::). We would all know ( and of course there would be trials to measure its effects) that we should experience fewer side effects with this than with the 100 mg version and be able to guage the effects (backed up by the trials).
When this was brought up on westie's thread on the other board, I pointed out that actually, even though the liver first pass effect is avoided through buccal or vaginal dosing (ie progesterone is absorbed straight into the bloodstream), I imagine buccal delivery is still less effective at a given dose for example than vaginal delivery ( but better than oral ingestion) because systemic concentrations must still be high enough for sufficient to reach the endometrium. With vaginal delivery (in my view the best option currently available) the progesterone is transported and absorbed directly through the cervix to the uterine tissues. One paper I read suggested it was held there for longer than any other method. Buccal delivery also produces a rapid rise in serum concentration within about 80 mins (according to paper I read) and has metabolised quickly in the body which might be unacceptable for some women even if taken twice a day and even though the dose is lower ? due to greater fluctuations.
Even so unless a commercically available preparation of 50 mcg buccal lozenge is being used ( eg possibly from another country?) we still can't even compare one (lozenge) with another produced at a different clinic - as that is the whole point. They make their own, with whatever ingredients they decide, will be absorbed in their own way, and only trial and error will determine efficacy ( in endometrial protection which is the aim).
In addition I read that systemic levels of progesterone were actually more stable when taken vaginally ? for the reasons given above even sometimes over 48 hours. Everything I've read says to me that vaginal delivery is the best and most effective way of getting progesterone to the uterus and maintaining stable levels in the body, and therefore reducing side effects.
In any case - a 50 mg dose even used vaginally would only be beneficial for women on low doses of oestrogen due to the need for endometrial protection. Studies show that even the current licensed doses work best at low and medium oestrogen doses - and tend to cause more bleeding at higher oestrogen doses (can't recall the papers that looked at higher doses).
In my view what we need ? is not expensive unregulated compounded hormones, but more evidence based information disseminated from the menopause specialists as to how current regulated products can be used to tweak the different regimes to suit many more of us. This is of course only with respect to the endometrium ? the breast cancer and progesterone is a whole separate issue.
Hurdity x
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Reflecting on hurditys comment about high dose E with 50mg lozenge. , hiya hurdity.
whilst waiting for mirena C and W wanted me on utro conti. They were not happy with 12 days as they said they could not be confident it would cover the high dose E I was taking and would be getting with the implant.
The doc even said it would be negligent of her to agree to anything that would not protect me whilst giving an off license dose of E.
It may be cautionary rather than evidence based advice because as you say , there has been little research on how much is enough to restrict proliferation with high dose E. So I have to trust them on that as I just dont have the evidence to take the responsibility for myself and go against their advice.
I personally would be willing to try the lozenge if I cant tolerate mirena. (Regular scans of course) . Because the only alternative would be giving up.altogether. but given what I've said above , 50mg might not be enough or me I fear.
Xxx
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Tc, the only thing you can do is try the Mirena coil for an long as possible and then make a decision as to whether or not you want to continue with it.
You are being monitored at the C&W so you have a margin of flexibility and not all women need high levels of progesterone to keep the womb lining thin (I certainly don't) but the thing to do is find out via scans and not try to guess how much you need. You may be pleasantly surprised or you may be disappointed but the thing to do is to find out.
From what you have said, the C&W would tell me they have no solution for me and I would be forced to ditch HRT.
We can only work with what is currently available and at the moment and in my case, it's bespoke progesterone or bust. There is nothing else. My regime is working extremely well and I'm getting good uterine scan results (better than some women on here who use conventional HRT) so I would be mad to even think about changing it, particularly as it's taken me years to get here.
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Its all very simple for me. Bearing in mind the extensive monitoring of "unregulated" hrt which seems to exist I would have no issues around it. I would be worried if there was "unregulated" hrt available without any monitoring. The key factor is the range of options available to women. The "unregulated" stuff doesn't have to have equivalency because quite frankly we all react so differently. Trying to match "like for like" makes no odds to us "difficult ladies", it's all about what works!
If I had known about it fully at the start of my disasterous journey, I am pretty sure it would have been on my list of things to try although the cost might have posed a serious problem. But then again, when I was truly at the end of my tether I would have probably considered taking out a loan to resolve the situation!!! But I didn't know. To be honest I would have just added it as a solution to the list of things I could try and put it down as a last resort when I had exhausted everything. Luckily (although I'm not sure luck had much to do with it..just heaps and heaps of research and downright stubborn persistence) I got sorted towards the end of the list of "conventional" hrt treatment and found something which is working.
I do have it in my head that what I am doing may not continue to work long term and I know I would be happy to consider any "unregulated" hrt if I needed.
But the wider questions are - (1) why is it still unregulated, its not new and (2) why to compound all our issues with meno, are GP's such "ar** ol*s!
Hurdity - surely Jaydass is in the hrt armoury even if it is not a specific treatment as hormone replacement?
Anything as an alternative to a mirina surely has to be on a list of possibles? xxx
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It's a pity that along with your various treatments, that a Research Study hasn't been arranged. With each one of you a Student could have a good 3 years Research ahead of them! Maybe it's a lack of monies? Companies not interested in funding a Degree perhaps?
Missed opportunities?
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Hope you don't mind me posting here, but I just wanted to clarify--the problem is the term "bio identical" which means different things to different people. There are genuine concerns about the use of compounded bio identical hormones, which are not recommended by myself, British Menopause Society, NICE nor International Menopause Society, but we do have preparations available on the NHS which closely mimic our own hormones and can be prescribed. An article which I wrote previously may be helpful-- https://www.menopausematters.co.uk/pdf/article%20Bio%20identicals%202017.pdf
In addition, a statement from the BMS can be seen at https://thebms.org.uk/publications/consensus-statements/bioidentical-hrt/
I hope that this is helpful.
Best wishes, Heather
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Thank you Dr Heather. Very pleased to see you here and thank you for the links.
Ladies, A couple of things I feel I should clarify about my own situation In the interest of giving an accurate portrayal of my experience.
Mary g.
"From what you have said, the C&W would tell me they have no solution for me and I would be forced to ditch HRT.".
The "ditch HRT " advice was given to me before c and w.
I cant speak for c and w. Only my own experience which is based on my need for high levels of eastrogen but particularly the implant. So I cant speak to what might be available from them in terms of P to those ladies on moderate or low levels of E dose. On their website I see that it is negotiable with individual patients. And they do take progesterone intolerant patients. Upon looking at their site I also see they offer jaydess.
I should also have added as it may have influenced the advice I've been given by them that although my blood E was 149pmol my TV scan on the same day showed 4.2mm thickness. I know this varies but the radiographer told me it was fine and could go up to 8 and only if it reached 11 would they investigate. But my GP considered it "borderline" and c and w said "we dont want it any thicker than that".
It would also be remiss of me for anyone reading my experience not to add that c and w has ruled out oral eastrogen for me due to an increased risk for me personally of stroke/thrombosis. So certain factors have narrowed my options which might not apply to others and I think it's important for me to say that.
.Mary G thank you for your thoughts on my situation. For your situation and to ladybt, . I personally dont think there is any room for "judgement" on this issue. We are not talking here about ladies who find an HRT that works for them "out of the gate" or women who find "a bit of tinkering" helps. . We are women who dont "fit the box" maybe we are difficult cases but we have tried what was offered and still suffering So. ... If you have found a regime that works for you after trying everything offered to you and like me have got worse in the process then you shouldnt feel you have to constantly justify the fact that you have found relief and a much improved quality of life elsewhere. IMO. Much love. Xxx
Xxx
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As it stands, BHRT is pretty much The Last Chance Saloon for the few unfortunate women who have slogged down every other path, to only reach dead ends.
If BHRT works for you, then it works - and you are monitored far more closely than if you're within the NHS menopause system. As I said upthread, I was so desperate to feel better that I would have quaffed radioactive rat pee, if it worked.
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Dr Heather.
I have read what you linked. Thank you. But I realy hope you see this reply as I wonder how much of what is offered under the NHS gets through to doctors.
For example.
I didnt start with GP. I started with gynae at my local hospital who was vocally anti HRT and offered very little in the way of options and having been instrumental in removing my ovaries for a cyst she didnt think I should even need HRT at 53. She prescribed me 100mg ulipristal daily as a post meno progesterone. Thankfully the pharmacist refused to fill the prescription.
The second gynae (i hadnt asked to see a different one but we often have no choice on who we see in these NHS clinics. ) was in same dept but was slightly more knowledgeable and changed E delivery and dose but not P. Despite me saying how bad utrogestan made me feel. Then when that didnt work told me maybe I should give up.
I persevered and after 9 months post BSO asked if they had a gynae with HRT interest. She turned out to be in the same dept two doors down. She was far more clued up and suggested variations on utrogestan including 12 days; 7 days and vaginal. And also o.k d me having nightly ovestin for VA when her first colleague who diagnosed VA had told me the systemic HRT would solve it and the second who agreed with the diagnosis after examining me said that once a week estriol was as much as she would prescribe on top of systemic ( in her words it was a "cancer risk".) and wouldnt even write up enough for me to have the loading dose. Yet the doc two doors down had no problem with prescribing me as often as I needed to control VA. All gynaes. All in same dept.
My trials and tribulations are well documented on here but what I'm saying now is that its inconsistent. Even within one gynae dept in one hospital. I know I'm not alone in this experience.
When I returned to this third gynae in a terrible state with low E 150pmol on 2 x 100 estradot patches and couldnt even take 7 days utro. She said she wished she could offer me more choice , that she was looking to set up a meno clinic in the health trust so she she could offer optiins such as implants and alternatives for P intolerance but, in her words it was going to be" a long time coming" due to funding. . So she referred me the nearest NHS meno clinic which was C and W . Not near atcall but not as far as some ladies have to travel.
She was my saving grace. But my point is all those 3 docs were in the same clinic at my NHS hospital. Pot luck on who you happen upon first. And only too often as in my case endurance to challenge and advocate for yourself at the very time in your life you feel least able to do either than you ever have.
How can women make a decision on whether they have exhausted all the options available on NHS when even our doctors seem unaware of what is available or unwilling to find out.
So whilst I thank you for those links dr Heather about the variety of what is available on the NHS. I still find in my experience that it doesnt translate to reality unless you are lucky enough to find a doc who also knows and understands this.
Xxx
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Bravo TC!
I echo every word in your post, because I had exactly the same experience. I was shunted between 3 GPs at my doctors' surgery, and then 3 'specialist' doctors and one gynaecologist at 2 different menopause clinics. Not one of them sang from the same hymn sheet.
One refused to believe my symptoms could be meno related because I 'was only 43' and because I wasn't having hot flushes. Another didn't even know HRT was available in a gel form.
I am currently having treatment for breast cancer, luckily caught very early, and neither of my breast nurses knew you could get transdermal HRT. My surgeon was amazed I had been prescribed testosterone. These are people treating dozens of middle aged women, day in and day out.
The only consistency in knowledge, regarding HRT, I have encountered is within the private sector - from personal consultations with Dr Annie Evans and Prof John Studd to correspondence with Diane Danzebrink and Dr Louise Newson - they ALL sing from the same hymn sheet.
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https://www.besins-healthcare.com/products/ - Progestogel
has anyone seen this product made by Besins ? i believe it's available in Belgium.
Not sure if iy would work for HRT x
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Thanks Dotty yes it has been mentioned before. It's for breast pain but not licensed/available in UK and also as far as I know therefore not studies for its role as part of HRT. There is a gel that is though - Crinone - but discussion about all of these proprietary products is better in the main board as they are not alternatives!
Ladybt "Hurdity - surely Jaydass is in the hrt armoury even if it is not a specific treatment as hormone replacement?
Anything as an alternative to a mirina surely has to be on a list of possibles?"
Absolutely - exactly!! What I was saying was that all of these different regulated products ie the different progestogens, doses and regimes should be discussed on the main board as above - they are not alternatives. ie there are a huge number of possibilites even using existing rpdoucts and off-licence without having to resort to cBHRT (as per BMS definition).
Hurdity x
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Thank you for taking the time to post on this contentious thread Dr Currie.
That members of this forum wish all other women the very best of health and especially leading up to and following menopause, including HRT treatment if necessary that enables her to have the best quality of life ? is an absolute given.
That at the moment treatment provision can be patchy and inconsistent even among the expert menopause specialists both NHS and private is also true and extremely frustrating for us all. So pleased to read the consistency amongst some of the well-known advisers and specialists GypsyRoseLee.
That we all would like to see a wider range of progesterone preparations, doses, delivery methods has also been said many many times on here.
However this overall does not mean that anything goes and that we should promote absolutely anything to achieve this purpose. What I'm really concerned about reading some of the responses is that the treatment that is being promoted on here is tempting women at their most vulnerable to look upon this as their only remaining choice, to follow a very expensive and unregulated path and in any case in addition as I (and Mary G herself) points out is only actually suitable for those on low doses of oestrogen otherwise the progesterone dose would be inadequate.
In addition the issue of monitoring has been pointed out several times ? but this is not a justification for going down the route of cBHRT! Firstly if you pay for any private treatment - you will be monitored ? so if you are going to pay (and are in the very fortunate position to be able to afford it) for private treatment far better to go to a recognised BMS approved menopause specialist where you can be prescribed an individualised regime using regulated bio-identical hormones (?rBHRT? in the BMS statement) so you will also have (and of course pay for) the same monitoring.
That's the thing ? several issues are being conflated here ? private vs NHS and regulated hormones vs compounded. Because of inadequacies in the NHS this is being used as justification for using compounded hormones.
As for the cost ? please do not be misled by the figures put out on here. I have looked up one VERY WELL KNOWN clinic that prescribed this sort of stuff and the costs are CONSIDERABLE and ONGOING:
Initial consultation ?300
Follow-up consultations (if within two years of first) ?140
Blood tests ? ?295 required by every new patient, and thereafter every 6-12 months and maybe more frequently in the early stages
Pelvic Ultrasound scan ( TVS) ?320 required by every new patient, and thereafter annually
+ cost of prescriptions
+ travel costs to London
So if at the very minimum you have 2 sets of blood tests in the first year, with your initial scan with an initial and follow-up consultation then at the very least this will cost ?1350 but it sounds like you might need additional scans or blood tests on top, + the cost of your actual prescription, which at the place Mary G goes to she says is ?1 per day so another ?360 on top of that so comes to at least ?1760 ? a long way from a possibly affordable ?200 or so that some women pay for a private consultation followed up by a letter to their GP to enable them to get their future prescriptions on NHS.
Please don't get me wrong ? I sincerely wish you all well and have every sympathy for your situations. This is not about private vs NHS, it's about choosing to go down this very expensive route of unregulated hormones. Of course it's a free choice in a free world ? for the privileged few that is ? and we have to make up our own minds but I feel so strongly about this (did you guess?! ::)) that I feel I have to continue to speak up and I make no apology for doing so.
Have a good day everyone :)
Hurdity x
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Thank you Dr Currie, I'm hoping you can answer my great unanswered question.
As stated above, I cannot tolerate any form of synthetic progesterone (including the Mirena coil) and I can never take Utrogestan again at any dose or in any combination. My migraine specialist completely ruled out a cycle because I must have hormonal stability.
Fortunately I have found my own solution that has finally given me the hormonal stability I need but I would like to know what the NHS solution would be for a woman in my situation who has exhausted all NHS progesterone options. A hysterectomy perhaps?
Thank you in advance.
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For the love of God, Hurdity. If some women have exhausted every NHS avenue, are at the end of their tethers, and can afford to try BHRT from a reputable clinic...
Then. They. Have. Every. Right. To. Do. So.
There comes a point, where you feel so utterly drained and despondent that you stop caring about percentages, and citations, and references and studies. It all becomes meaningless. And you just want something that might work. Personally I wouldn't have given a shit if I paid John Studd ?600 for blood tests + a placebo...
If. It . Worked.
Trying BHRT ain't going to kill you. I totally agree that it might not work. I totally agree that it is very expensive. I totally agree that ideally it should be more regulated. I might not even agree with the women who choose to try it.
But I would defend to the death their right to make that choice.
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I am very resentful of the phrase 'priviledged few' too. No one knows what people are prepared to do or sacrifice in order to access the correct health care for them. They might easily afford it, or have taken on more work, or borrowed from family or forgone a holiday that year. We just don't know.
Not so much privileged, as at their absolute wits end very often.
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Thank you GRL and thank you sparkle, this is becoming grindingly tedious and dogmatic.
I couldn't give a flying **** as to whether or not my progesterone is regulated. Regulated Utrogestan made me blind and unable to function for 30 minutes at a time so I'll take unregulated progesterone that works all day long.
A major point is being missed here. Bespoke progesterone doesn't have to suit everyone or be compared to other types of progesterone, it only has to work for the individual concerned, it is a personalised treatment. I'm not suggesting bespoke progesterone is rolled out nationwide via the NHS, I've made it very clear that it is a life line for a minority of desperate women who have exhausted all other progesterone options and are facing a hysterectomy. It is a last resort.
The ultimate test for any progesterone product is endometrial protection and my progesterone gives me a womb lining measurement of 3.3mm but more importantly it gives me hormonal stability and prevents my migraines.
I did not say that 50mg progesterone is only suitable for a low dose of oestrogen. I was originally using two pumps of Oestrogel with 50mg progesterone every day and my oestrogen blood levels were in the late 500-600s which is not low. I reduced to one pump of gel because of hormone balance and migraines, not womb lining build up, I could easily have continued with two pumps of gel and 50mg progesterone every day.
I have not named the clinic I attend for my progesterone and they do not force expensive tests upon people. I would never pay anything like that amount of money for blood tests or a uterine scan. I have these tests at a clinic elsewhere.
I wonder when my big question will be answered?
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Stellajane, it is a pity my well intentioned thread has supposedly become contentious, there in no reason for this to be the case.
I was in two minds about starting this thread for obvious reasons but was persuaded to do so by others. I have been mentioning my regime on here from time to time in various posts and I have received numerous PMs from desperate women who are now trying bespoke progesterone (most using different clinics throughout the UK) but they feel uncomfortable about going public with it in here. I think that is tragic.
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I haven't posted on here for years as fortunately I am feeling well and settled now after a horrendous time with trying to find a hrt solution that suited me but I really feel that I couldn't not post about the privileged few comment. I decided I had no option but to seek private advice and take great offence at that comment . I'm far from privileged, I choose to not buy clothes, make up, have odd meals out etc.and put my health first! At the time I would and will take/use whatever gave me a reasonable quality of life. We should enable people to make their own choices without fear of retribution on this forum about their decisions. This after all is a support group . We all know that in an ideal world we shouldn't have to pay but then we don't live in an ideal world do we.
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Hi girls,
I think this thread is fascinating! Mary G, you have started a thread 'to discuss compounded hormones' and I think that's exactly what is happening, so I wouldn't say it's 'contentious' (yet, lol).
I have a lot of things to say, not just personal experience, but a lot of facts that I have been digging for a while and I would like to disclose them on this thread, would I be allowed to do it or should I start a new thread?
My personal experience is brief, one paragraph would cover it, but the facts surrounding this subject (regulatory, commercial, medical, financial) would probably need some pages (!). I haven't finished my research yet, when I started it I could rely on a lot of EU online information, but Brexit has got in the way...
BeaR.
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Mary g. Thank you for starting this thread. I believe it has a place here.
I would like to think that on our forum we can share the wide range of how we are coping with menopause and what has helped us with symptoms. And that includes many things which are not prescribed by the NHS. .
Whether people like it or not, cBHRT is being used by women in the UK and many talk about it on other groups. Why shouldnt our forum reflect what is happening too.
This is one thread. It's not like a takeover is being mounted here. There are still tons more threads about HRT.
I'm dissapointed to see people being accused of promoting things simply by sharing their experience.
And....cbhrt is not available on the NHS so those who are able to afford it (maybe by making great sacrifices) are not "choosing " to go private for it. It's the only option in this instance and therefore I cant see how it got brought into the whole debate in the first place.
BeaR. Sounds very interesting indeed.
Xx
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Yes please BeaR, feel free to add it to this thread.
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[waves at dazned]
It's utterly ludicrous that we can't discuss alternatives to HRT on the flipping 'Alternatives Forum' FGS! There's alternative treatments on here that I wouldn't touch with a barge pole, frankly. But again, I absolutely defend someone else's right to bloody try them.
This thread started out as very measured, with plenty of sensible caveats and carefully considered information. It wasn't remotely contentious - if anything it was positively staid.
It's not beyond the realms of possibility that strident efforts are being made to cause contention in order to get the thread shut down? I very sincerely hope not.
We all know BHRT isn't regulated, yet. We absolutely know it, okay? We know. But, plenty of women are prepared to still try it. It is their choice.
Their choice.
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I haven't posted on here for years as fortunately I am feeling well and settled now after a horrendous time with trying to find a hrt solution that suited me but I really feel that I couldn't not post about the privileged few comment. I decided I had no option but to seek private advice and take great offence at that comment . I'm far from privileged, I choose to not buy clothes, make up, have odd meals out etc.and put my health first! At the time I would and will take/use whatever gave me a reasonable quality of life. We should enable people to make their own choices without fear of retribution on this forum about their decisions. This after all is a support group . We all know that in an ideal world we shouldn't have to pay but then we don't live in an ideal world do we.
Hi dazned,
I don't think we have 'spoken' before, just out of curiosity, what hrt did you end up taking which enabled you to feel well? So glad to hear you're feeling well and settled!
BeaR.
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Yes please BeaR, feel free to add it to this thread.
Hi Mary G,
Thank you, I'm almost finishing the 'compounding dossier', lol.
BeaR.
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It does sound interesting.
Go BeaR!
Hi stellajane,
Thank you for the encouragement, lol.
BeaR.
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"This thread started out as very measured, with plenty of sensible caveats and carefully considered information. It wasn't remotely contentious - if anything it was positively staid". Absolutely - in fact my posts are probably quite boringly staid to many!! ;D
"It's not beyond the realms of possibility that strident efforts are being made to cause contention in order to get the thread shut down? I very sincerely hope not."
Well judging by the number of posts seemingly disagreeing with anything I post - I sincerely hope not too! It started getting contentious pretty much at the point when dangermouse started talking about the extreme stance of the BMS as well as some uncalled for comments by CLKD is response to my providing information about the society.
Are members suggesting that those who don't agree with cBHRT should not post here if they disagree and if they provide another view or a counter argument?
I make no apology for using the term privileged few ? especially in this situation ? because that is an accepted phrase, and any sense of shame is in the imagination of the reader. No implications whatsoever intended. Many of us are privileged in many ways (and I include myself in that) and I don't want to forget that.
My view is ? yes of course it's fine to report a treatment that works ? and to discuss the TREATMENT itself and its relative merits ? especially evidence based information and how it sits within current scientific and medical thinking. No-one has ever said that should not be done. No-one has said that individuals should not be free to choose whatever treatment they feel works best for them. Like I've already said I am very happy that women have found treatments that work. However it's the over PROMOTION of the expensive private bespoke unregulated cBHRT, as if on equal terms with all other treatments, that I object to, notwithstanding that a few who are financially better off (!), have benefited from it as a last resort. No criticism of anyone's INDIVIDUAL choices whatsoever.
If someone randomly landed on this website and forum wondering what to choose for their treatment then I feel a responsibility to help them find whatever treatment they can firstly on NHS, empower them to talk to their docs, provide them with all the information and guidelines out there, or at least if they have completely exhausted that option ? to find a private specialist who can give them even more individualised treatment, but using products that are known to work so that at least they would not be wasting their money.
Yes I do think pm's are the best place to exchange all of the details of clinics and regimes if someone has decided to go down this route ? but my view for what it's worth - is that it should not be promoted on Menopause Matters.
No-one has suggested it should not be discussed - in fact personally I welcome it because it makes me go and look things up!
Hurdity x
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[waves at dazned]
It's utterly ludicrous that we can't discuss alternatives to HRT on the flipping 'Alternatives Forum' FGS! There's alternative treatments on here that I wouldn't touch with a barge pole, frankly. But again, I absolutely defend someone else's right to bloody try them.
This thread started out as very measured, with plenty of sensible caveats and carefully considered information. It wasn't remotely contentious - if anything it was positively staid.
It's not beyond the realms of possibility that strident efforts are being made to cause contention in order to get the thread shut down? I very sincerely hope not.
We all know BHRT isn't regulated, yet. We absolutely know it, okay? We know. But, plenty of women are prepared to still try it. It is their choice.
Their choice.
Hi GypsyRoseLee,
I agree, there are quacks and there are doctors who prescribe regulated, yes regulated, unlicensed use of licensed medicines, they inhabit two different universes and shouldn't be thrown in the same bin by people who are not quite clued up on the subject.
BeaR.
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Sorry for so many posts, girls. I can't seem to be able to multiquote today, not sure why.
BeaR.
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I don't find any of it contentious at all and I think "alternative therapies" is exactly the right place to discuss it (as CKLD points out anything not routinely prescribed or "mainstream" might be considered "alternative") Personally I think its getting a bit silly in terms of splitting hairs on the "dictionary definition" of the words used and which section of the forum it should go but hey ho!). I do not want the thread "shut down" I think it is a perfectly reasonable discussion to have.
I cannot prove it but I might suggest that it is pretty safe to say that new ladies coming to the forum are most like to start in the "all things menopause" section, post their questions and get answers, help and comments and read experiences purely based in the first instance talking about hrt considered "mainstream" and freely available on the NHS. There is always going to be the discussion about NHS versus private and costs involved but ladies "choose" private regulated hrt prescriptions and consultations all the time and post on here. We all know we shouldn't have to be doing that, but going private is not considered "contentious" on the forum??
I have not, in my time on the forum seem the "unregulated" areana being routinely actively "promoted" over and above the usual NHS routes or products, but it would be reasonable to say that as the "mainstream" options are tried out and found to be failing over a reasonable period of time, the list of options for "more difficult cases" obviously reduces. Therefore once you start moving into "I've been on hrt for x years and tried X,X,X, etc" posts, and therefore the "end of tether last chance saloon" discussion, I cannot see why it would a problem to suggest that "unregulated" options are out there but "it's your choice and at your own risk and expense". That is not "promotion", that is "discussion". I would also say that the people who regularly comment and provide experiences to newbies are not "irresponsible posters". In fact as we can see from how this thread has turned, those who have this experience feel only safe to lurk in the shadows. As long as it is a reasonable exchange of views and opinions, then everything is for discussion? It's about opinions and choices after all, but not dicussing something available because of disagreement would seem to me to be a bit unhealthy. Its a treatment, its out there, you cant just sweep it under the carpet.
Bear posted the "quakary" comment and there yes here is plenty about but this is not what we are discussing in this thread...nor are any of the ladies who have benefited from "unregulated" (for want of better word!) obtained them from anything other than reliable sources who are also well documented elsewhere and who have been talked about on numerous TV programs.
This is a fairly "niche subject" because it is a "niche" treatment and probably a subject of "last resort".
GRL and Bear's comment just about sum it up for me. There are so called experts prescribing regulated hrt who are downright dangerous because they haven't a clue what they are talking about! On the flip side there are knowledgeable and diligent experts in their field prescribing "unregulated bespoke hormone treatments". Not having an active discussion about either does'nt help menopausal women at all.
Information, options and choice ladies is the key to the whole thing for me! :)
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It is *not* an accepted phrase on here .............. as someone who worked with the NHS for many years I have seen medical provision from both sides: private and NHS. I have made choices on what was required at the time for my well being. I have also been let down by medical health services when I was crawling on the floor, begging for help - both NHS and Private sector.
It is about choice. As a complete meander, my Grandads and other relatives went to War to give people born later: CHOICE: my FinL spent time under the 'care' of the Japanese to give people born later: CHOICE. Choice is what I do, every day and not always relative to health care.
Uncalled for :-X - 1 person has complained, no one else jumped in at me ;D. In fact I had several back-room e-mails of support. Go figure.
As many consider that the choices these ladies have made are not mainstream: how can the discussion not take place as an 'alternative' ...... in an alternative room ;D. [thanks Ladybt28]
Serious illness needs serious consideration. It has been obvious that many ladies across the UK are not getting what they require from the NHS especially with regards menopause understanding. Until the BMS sends a letter to every lady in the UK about what is available and how they are instructing GPs, we will continue having to source what suits us as individuals regardless of if we have to pay for it or not.
It is obvious that GPs simply are NOT getting the message. Ladies are still being told that they are too young, not menopausal as they don't have hot flushes; aches and pains can't be due to hormones etc., etc., etc.; and that's those who report here, there must be 1,000s across the UK who despair. I also worry about those in ethnic communities who may not have access to the internet and/or less than sympathetic families.
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I HATE the word 'expert' with a passion. NO ONE is expert at anything - most people know a little about lots of issues. Knowledge is power which can be shared - so that people can take what they require at that moment in time and shelf other experiences for later use if necessary.
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I have sat in front of a NHS gynaecologist in an NHS Menopause Clinic who seriously doubted I could be peri menopausal because I wasn't having hot flushes. The appointment was an utter waste of time and I had waited 5 months for it.
I have sat in front of an NHS psychiatrist in an NHS clinic who wanted to prescribe me Librium and give me electro convulsive therapy for my 'baffling depression' FGS!
Plenty of fully licensed and fully regulated doctors within the NHS who are very secure in their ignorance and happy to prescribe potentially dangerously personality changing treatment and drugs that would only have damaged me.
But, hey, ECT is licensed so it's perfectly fine to give it a whirl...
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That could be a whole new thread GRL - I would stop unregulated ECT treatment completely. Unregulated = giving a patient ECT without consent.
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Hi BeaR , thanks for asking me what I eventually settled on. I don't believe that you were around when I first came here so to save you having to look my posts up...
I first started on elleste duet tablet hrt when the 4 th gp I saw agreed it was my hormones that was making me feel " not right ", you know your own body don't you. I was about 48, after a few weeks I was back to the normal me. Fast forward about 3/4 years and it just stopped working for me. I was wretched, in a very dark place, my insides felting like they were fizzing or vibrating, anxiety off the scale and I truly thought I was dying! In fact some days I wished I was! I had to pack up work as some days I couldn't even wash or dress myself. Strangely I never had hot flushes. I decided to see a private consultant where I spent the next year,18months wasting my time, not money as he told my gp what to prescribe, trying 3 months oestrogen only, still no improvement with gel or patch, then the " good star" gel and utrogeston, that made matters worse! He prescribed testosterone, Androfeme which is formulated for women, you name it I tried it. In the end I threw myself on my dr desk, literally, and begged him to give something to make this stop! He prescribed mirtazapine which I know is controversial here in itself but I didn't care at that point. Within 2/3 weeks with the support by PM of a member on here also on it I was back to living and enjoying my life slowly again. Now I don't care if it's the first line appropriate medication or the science behind it, in MY menopause it gave me my life back. I've since moved home, moved area, started a new job, travelled and found joy again. Bet you wish you hadn't asked.
However people choose to manage their menopause I support you and wish you luck.
Hurdity , I'm really sorry to hear that you are unable to apologise for my "imaginary" hurt feelings , I assure you they didn't feel imagined.😢
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My apologies BeaR if you thought I was belittling your obvious scientific research because I wasn't. I'm just an ordinary woman trying to manage her health the best way I can. Luckily most here haven't experienced the darkness that menopause can bring. Thank goodness.
Wave at GRL.
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Hi again, dazned
Apologies not accepted! >:( What? ;D
I'm so sorry you had to go through all this until you could find a proper treatment. I think it's brilliant that Mirtazapine has worked for you and that you had the support of your consultant and a member on here. Glad you have moved on (literally) and found joy again, that's really encouraging!
BeaR.
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Hurdity , I'm really sorry to hear that you are unable to apologise for my "imaginary" hurt feelings , I assure you they didn't feel imagined.😢
I found it very patronising.
Look ? I really don't want to prolong this because it is causing bad feeling ? but when it comes to making personal insults I feel I must respond. Sparkle (and dazned) ? you have posted late on this thread, which of course is fine but you choose to pick out a phrase out of context and it has been misrepresented.
Please read the whole thread for context and if you want to see what I meant then look at my post from yesterday morning first thing, after Dr Currie's post. I can't say it plainer than that. Just to reiterate yet again ? my comments are NOT about private treatments vs NHS, nor have they made or implied criticism of anyone who has decided to pay for private care (notwithstanding that they should not have to pay for such treatment for menopause which should be available equally to all), they?re criticising expensive bespoke cBHRT for all the reasons already given, and the promotion of it on here to the extent that members who can't really afford it are tempted to go down this route as possibly the only (last remaining) available option, and as if it were on equal merit and efficacy as rBHRT (according to BMS definitions as per this thread).
You will see I have not made any personal comments that could be called offensive or upsetting to anyone, and I strive not to do so because that is never my intention ? although I make no secret of my view that these expensive treatments should not be promoted on here. it's important to discuss them and their merits ? and I posted about the biological aspects of the progesterone in this context but that was mostly ignored.
I have said loud and clear that I am happy for anyone who is feeling well during and post-menopause and the decision on treatments is a choice ? but this choice should be based on proper information and evidence, and that this choice - because it is not recommended at the highest medical and scientific levels, and is not a choice that is available to very many women ? should not be promoted on here. Discussed in principle, yes, promoted (and overly defended and justified) in the way that it has been, no.
Hurdity x
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Morning Ladies >wave<
Yes I do think pm's are the best place to exchange all of the details of clinics and regimes if someone has decided to go down this route ? but my view for what it's worth - is that it should not be promoted on Menopause Matters.
Who suggests that issues shouldn't be promoted on MM? Does Dr Currie read every thread every day ? :-\
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MaryG made it abundantly clear that she had turned to BHRT when every other avenue had been explored and there was nothing else left to try. It didn't come across as promotion at all.
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Stellajane, thank you. Of course everyone knows I'm not promoting BHRT, I am just sharing my experience with others in the hope it can help someone in the same desperate situation as I was 18 months ago.
How many more times, bespoke progesterone is a last resort and only for women who have exhausted all progesterone options.
Any attempt to gag me when my experience could offer a much needed life line to another woman is verging on cruel.
Still no answers to my question. What is the NHS solution for me? A self funded hysterectomy perhaps? Anyone?
Careful everyone, I think this is a cynical attempt to provoke controversy and get the thread closed down.
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I'll answer you MaryG - in my opinion,to be honest having exhausted the NHS options I would agree there was not NHS alternative except for a hysterectomy or the "unregulated channels". It was your choice, as is everyones! ;)
In my view its simple, here cannot be one rule for posting on "regulated hormones" and another for "bespoke hormones". none of us are doctors (well some might be and others have sciency occupations which puts themin slightly advantageous position ;) ;)) and the opening introduction to the forum and forum rules state things about that but really when any of us post here, it is based on our own experiences and information gained elsewhere. The majority of it is "experienced based". I can see no reason why any of this should be viewed as controversial, nor why anyone who has experience of these treatments should hide themselves away as long as it is posted in an appropriate manner and in a correct section of the forum.
Despite the differences of opinion ;) ;D I would stake my life on it that not one of the people with that experience is going to be suggesting to a "newbie" forum member running out of options on progesterone that their first reply or even their 5th reply would be to try "unregulated" "bespoke" treatment or what ever you want to call it.
I really think we need to put this in perspective a little more and look at the wider picture because the whole thing seems to being discussed on a micro manage basis...(sorry peeps, I'm not sure if you know what I mean..I probably haven't worded that right.
Information is power, others experiences help but at the end of the day what each person does with that information and experience is absolutely down to them. I believe irresponsible posters on this forum are shut down by others anyway and I can say personally I dont think any of this discussion is "irresponsible" in any way. There are plenty of things I wish I had known years ago that would have made my life infinitely better but I didnt have the opportunity to find out. If I had done anything on the basis of someone elses say so without the proper research when I did find out, then well...that's down to me isn't it?
I'm in the "post away on all your experiences as long as you do it responsibly" camp including bhrt, bespoke progesterone, cbd oil, menopace, anything else you can get in H&B, yams, essential oils, black cohash yada yada yada. When you read it, you don't have to agree with it, nor do you have to take it up immediately but if you don't know, you don't know? - what I mean is why should menopausal women only hear about what is considered NHS mainstream?
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I read an article yesterday in a magazine [name escapes me] which when I have energy, I will begin another thread on ........ the whole tone annoyed me ;D :-X
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it's been an interesting thread and some great posts!
That was my point, that there seems to be an over reaction against compounded products on the BMS website (which then filters down) and I was trying to understand why that might be.
It gives the impression that compounded pharmacies are, at best, a shady business and, at worst, dangerous. Here is where we can redress that balance by citing our own positive experiences that prove this is simply not the case.
All private scans and blood tests are expensive, whether you have them with Prof Studd or a Gluck type clinic, but some GPs (including my own) let me have my blood tests done on the NHS.
The more I think about it, the more I'm convinced that the NHS would not consider 50mg progesterone doses due to the additional scans needed to check the womb. They simply cannot afford this.
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I must admit " I did post late " on the thread , that doesn't mean I hadn't read it all . The reason I posted " late "was that phrase made me annoyed, imagined or otherwise.
I don't post now as I'm no longer on HRT but take an anti anxiety tablet which also doesn't generally go down well here so I keep quiet about my experience unless anyone specifically ask about ADs.
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Dazned - please keep posting, you are such a wealth of information. I have always taken an AD alongside my HRT. When I saw Prof Studd he told me that sometimes women need both!
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dangermouse - would they even consider it? regardless of expense. Eventually surely; once a lady gets her HRT sorted, she will not be taking up as much time in the future!
Dazned - what ever works! Without my ADs and anti-anxiety meds I wouldn't be here!
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There are a lot of very interesting points to pick up on here.
Ladybt28, I think you are right. I imagine the NHS would tell me they could not help me but I doubt they would fund a hysterectomy for HRT purposes so I would be forced to ditch it completely. I know a lot of women travel to Spain for a hysterectomy because it is much cheaper.
dangermouse, I believe most clinics accept NHS blood test results which can save a lot of money. In my view, the NHS overload women with progesterone as a 'catch all' and seem to work on worst case scenario and then add a bit on top for good measure. Many women on here seem to be prescribed low doses of oestrogen with very high doses of progesterone which often results in virtually no symptom control and horrendous side effects from the progesterone component. Even if there was a 50mg progesterone dose, chances are, they would not prescribe enough oestrogen to control symptoms.
GRL, agreed, there are many women who need ADs alongside HRT and Professor Studd touched upon that with me. I think he usually likes to start off with HRT and then filter in ADs as necessary.
Dazned, all experiences have equal value and you should not feel uncomfortable discussing your medication on here. As well as making an interesting contribution to MM, you might be able to help others in a similar situation to yourself.
Stellajane, the lack of uterine scans is so shortsighted and not just from an HRT point of view. What about checking ovaries? What about the many women who do not use HRT who end up with endometrial hyperplasia?
Someone I used to work with years ago had cervical cancer in her early 40s. They operated but refused to give her a hysterectomy - she didn't have any uterine scans after surgery either. Ten years later, she started bleeding very heavily, finally had a scan and they discovered a tumour on the cervix. She had that removed (still no hysterectomy) but a few years later, it spread and she died in her mid 50s. I think regular scans could have saved her life.
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As an aside: the Surgeon who under took my breast surgery also suggested that if ladies had hysterectomy, he always remove ovaries in the same procedure: " to save time later " were his words.
He also told me that "None of my ladies have had womb problems with 'tamoxifen'" but that was what killed my friend :-\. Fortunately I was unable to tolerate it.
Keep sharing Girls, keep sharing ;)
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In respect of funding for hysterectomy on the NHS. I wonder if there is a bit of a discrepancy around this issue. . My ovaries were both removed even though there was a cyst only on one. The other was healthy but I wasnt offered the option to keep it.. I was later told this was for "prophylactic" reasons. The fact I dont agree with that reasoning for my own personal situation is irrelevant here but...I was told my womb would not be removed at the same time as it was healthy but if I wished they would take it out at the same time.
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What did you sign on the Consent Form? The Surgeon should have explained what he was planning on doing, what he would do with your permission and what he would do if there was an emergency situation ............
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They explained if they found cancer that they would proceed to a "stageing" process which I had to consent.
I said I wanted to keep uterus so the consent was for bilateral salipingo oopherectomy. I think it might not be relevant here but to answer your question CLKD, I signed as it was the only option given to me and the cyst needed to come out. Because they saw me as being "around menopause". They dont attempt to remove large dermoids without taking the ovary peri and post meno and it is considered standard to remove both ovaries post meno for prophylactic reasons and to negate the need for further surgery. The fact that I wasnt post meno is where I feel it was the wrong decision. And the risk of future ovary issues with the good ovary should have been weighed against the risks of surgical menopause. It wasnt. I dont know how much being under a gynae oncologist influences such decisions,. They possibly view things from a different angle.
Xx
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Damned if you did, damned if you hadn't done? :tulips2:
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Yes my friend.Sadly it is so.
The point I'm making about the hysterectomy option being discussed here is that in my case it was seen as o.k, even good practice to remove a healthy ovary but not to remove the healthy uterus. But, if I had requested it they would have removed it without my needing to even give any reason . which seems out of step with the refusal to consider hysterectomy for progesterone intolerance.
X
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They may think theyll do it whilst in there to save possible expense of a second op later?
My friend had hysterectomy with womb removed (for very large fibroid) but they said theyd keep ovaries but may need second op if any issues. She didnt have any ovary issues so still has them but she did have to have a bowel resection 3 years later due to the removed organs causing the bowel structure to fall low and create a large cyst.
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The thing is stella,when you are sitting in an oncologists office you are so scared stiff that whatever they tell you , you go with. I bitterly regret not looking into it further. I didnt advocate well for myself and had nobody to advocate for me. I cry about it practically every day. This time 2 years ago I was fine. Now I'm struggling in a world of issues with exogenous hormones that my body doesnt seem to like and which have made me suicidal at times and practically psychotic at others. 😪
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I didnt think you were stella, not for a minute. .its all good.
I suffered terribly with utrogestan and I'm not doing well with mirena. If It turns out I cant tolerate anything else either i would certainly look at the cbhrt.
After my experience and the fallout of BSO I know I would give up before risking more pelvic surgery so that's why I am so interested to learn about cbhrt and came to the thread. Xxxx
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Hi Tc, I wasn't going to post any more on this thread as I've said everything I think already but just wanted to respond to you personally. I am so sorry you are still suffering but I sincerely believe from everything I've read and heard you are in the best possible hands staying with the Chelsea and Westminster under the eminent and vastly experienced gynaecologists at that hospital and that they will be able to tweak and individualise your HRT, including off-licence doses etc if need be, with appropriate monitoring. CBHRT is just hormones, the same hormones, when it comes down to it, and it is the doses of these that need tweaking in your case, because it sounds like you are still trying to get your oestrogen dose sorted and I think this is just giving you false hope actuallly. I won't say any more about that on here because I have answered in more detail on your other thread.
All the best
Hurdity x
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Thank you hurdity. X
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Hi Mary G.
This is a really interesting discussion.
My own view is that hrt is no good for me. However, if I had had a premature menopause, I would likely have looked into cbhrt. They would seem a better choice to me, because you are replacing those hormones in the same molecular form that your own body would have produced them, rather than a synthetic version..
But, unless going through an early menopause I would steer clear of bioidentical hormones.
I know ladies taking hrt disagree with me (obviously), but I do feel, for me, that adding any form of synthetic or ?natural? hormones, would not permit my body to go through the transition of the menopause and out the other side in a natural way, unless of course, you have an early menopause. X
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Thanks for sharing your views Jari and I completely understand your decision. It's all about freedom of choice.
For the sake of clarity, nearly all oestrogen products currently prescribed are body identical as is Utrogestan. The Mirena coil and all other types of progesterone are synthetic.
I use Oestrogel which is a standard HRT product alongside bespoke 50mg progesterone so it's a mixed regime. I also use separate testosterone.
Tc, I read your other thread and I really hope the Mirena coil works out for you. If not, I think you said your implant is 50mg and if so, why not ask to try the low dose Jaydess coil? They know you have a problem with progesterone and they are monitoring you so there is no reason why they should not agree to it.
I hope you can quickly resolve your oestrogen absorption issue. I've had two Mirena coils and I can tell you I reacted very differently to it once I was post menopause and no longer had the protection of my own hormones. It is vital to have high levels of oestrogen with the Mirena to counter the synthetic progesterone. I'm afraid I always had breast discomfort with it.
Once you have completed exhausted every possibility and if you are then facing a hysterectomy, that is the time to try BHRT.
I spoke to the compounding pharmacy last week and they are trialling sublingual progesterone drops. They are working on the slow release mechanism at the moment and they might ask me to trial it. They know about my extreme sensitivity to fluctuating hormones and resulting migraines so I'm a good candidate.
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:thankyou:
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Hi Mary G
I think it makes much more sense, if you want to take hormones, to have them tailored to individual needs.
Stellajane, I did take estrogel and utrogestan, but only for 3 months. I had to come off it immediately, because of the horrific side effects it caused me and these are meant to be ?natural?
It gave me a huge appetite ( so put on a lot of weight), really horrible anxiety, but worst of all were the increasing breathing problems, to the point I was gasping for breath. At that point I was told to stop immediately. I think a possible blood clot worry.
One thing I do wonder about and this is because, since I came off hrt, my natural m symptoms have decreased very much over the last year...is, if I had not had those terrible side effects, I would probably still be taking the hrt. That would be nearly two years now. So, I could have gone on for years and years, but would not have known that my natural hormones had balanced out and those natural symptoms had passed. So, I would have spent years, maybe decades, spending on appointments and tests and prescriptions etc, not to mention adding those drugs to my body, when there was no need.
This concerns me for other women.
I have read quite a few posts where women are struggling with withdrawal symptoms, trying to come off hrt, which also leads me to wonder, if hrt is addictive? Does anyone know anything about this?
Take care ladies x
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https://www.goshen.edu/bio/Biol410/bsspapers07/rachaelah/Hormone%20Replacement%20Therapy.htm
This is an interesting but long read...
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Jari, your distressing reaction (if it was due to the HRT) you experienced was extreme and unusual and therefore should not put anyone else off using HRT.
Also the premise on which prescribing compounded BHRT (cBHRT) is based in principle ie that blood (or saliva) tests are needed in order to determine oestrogen levels in order to individualise the dose according to the woman's requirements ? is false. Research has shown that symptoms do not correlate with absolute oestrogen levels.
Good specialist menopause doctors are able to personalise HRT regimes using currently available products depending on symptoms, including being able to tweak progesterone regimes by dose and duration using available preparations, with appropriate monitoring (of womb lining). However it is recognised by many that we do need a licensed lower dose progesterone to enable women on lower/medium doses of oestrogen also to be able more flexibility in dosage, especially for those who are progesterone intolerant and for whom other options make them ill, but again these women will be in the minority as most women even those who are intolerant generally (unless extremely so) can just about cope with eg 7 days of progesterone (with appropriatemedical monitoring) even though this is off-licence.
The issue of stopping HRT is not really relevant to this thread as it is universal. Do have a lookat the main board and you will find some recent threads on it. Also stellajane's thread on stopping HRT on this board too.
I haven't looked at the link yet!
Hurdity x
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Jari your reaction to HRT sounds very scary and it would be interesting to know how many others have had a similar experience. Also the women who have had hair loss I find worrying. That alone would dissuaded me from taking it, if I had been so inclined.
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The thing is, Jari - you say you might have been taking HRT unnecessarily for years when you didn't need it. But actually your body does very much need oestrogen because our bodies aren't bio-designed to work without it. It's great that you're not having any symptoms but that doesn't mean your heart and bones aren't being affected by the lack of oestrogen. And it will only get worse.
I am very annoyed that I'm having to stop HRT because of my breast cancer DX because I am more than just the sum of my two boobs! I'm genuinely concerned about osteoporosis and heart disease because they run in my family.
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Just read your link Jari. Very interesting.
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I agree stellajane. It's OK to meander a bit but to alter the basis of the thread ?
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If you are referring to me I was replying to a point that Jari made. Is that not allowed?
You always get side issues in threads.
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;D. it doesn't take much does it ::) - Shadyglade: do you mean if 'you' as in if it were I or anyone in particular?
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Jari, your experience sounds very scary and was probably due to the dreaded Utrogestan. You could also have had an allergic reaction to the gel.
My experience with Utrogestan was also very scary which is why I can never use it again. Fortunately the progesterone lozenge I use now bears no resemblance whatsoever to Utrogestan.
I agree with Stellajane, why not start a new thread on bad experiences with HRT. I will happily discuss my progesterone woes.
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Unfortunately we had a thread similar about the positives of not taking HRT, but it was closed down.
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Worth trying again though ;)
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Hi ladies, sorry, I did not mean to go off track.
I will start a new thread.
Hurdity, there is no question that my side effects were caused by the estrogel or utrogestan. I felt it was more the estrogel as I only took utro for 7 days. The breathing issue started about 2 weeks into taking the gel ( before starting the utro) and got worse and worse. The meno lady I was seeing said to come off immediately and by doing so, we could see if it was this that was causing it. It was, because it went when I stopped it.
Thanks Shadyglade, I thought it was an interesting link too.
GRL.. I also have BC history. Re osteo... it is not a given that you will get osteo if you do not take hrt. Osteo prevention using hrt is only recommended when all other medications for osteo have failed. You would need to take hrt for ever if you are using it as an osteo prevention. Bisphosphonates are used for osteo. Have you had a bone scan. I had one and they have no concerns currently.
Mary G, I think you are right, that I probably had an allergic reaction to estrogel, which is strange as I never usually get allergic reactions to anything.
Sorry for going off track... will start another thread!
Have a good afternoon ladies. X
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Do start a new thread Jari - it means that comments won't become lost in the melee ..........
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https://www.goshen.edu/bio/Biol410/bsspapers07/rachaelah/Hormone%20Replacement%20Therapy.htm
This is an interesting but long read...
Hi again. Just for the record even though it's off topic, and because it has been commented on, for anyone reading this thread and the link, the paper is from2007 so is very out of date when it comes to risk information etc. I didn't read it because of this but had a glance, and when I saw reference to a major study ( the KEEPS study) as "being undertaken", I realised there was not much point as a result. There are much more up to date papers about HRT out there; the major national and international menopause societies have various consensus statements and position statements and publush review papers in their journals.
Hurdity x
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.......... and ........... :-\
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I agree with you Hurdity. I do wish people wouldn't cite the KEEPS study, or the HABITS study or the dreaded WHI study - when these studies are years out of date and been comprehensively proven to be seriously flawed and frankly incorrect.
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Jari, unfortunately bisphosphonates just don't work for adequately for osteoporosis. The reason being that they only treat the external layer of bone and not the inner core. So your bones aren't being treated properly from the inside out, which is what oestrogen does. It's the same reason why it's pointless taking calcium for 'strong bones'.
Dr Bluming discussed this at length in 'Oestrogen Matters'. Luckily the medical profession are just realising that current treatment for osteoporosis isn't nearly as effective as it should be. I have a colleague who works as a research scientist in this area and she has admitted as much. But as ever, it takes 10 - 20 years for it to be introduced via the NHS.
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Also the premise on which prescribing compounded BHRT (cBHRT) is based in principle ie that blood (or saliva) tests are needed in order to determine oestrogen levels in order to individualise the dose according to the woman's requirements ? is false. Research has shown that symptoms do not correlate with absolute oestrogen levels.
Hurdity x
Im not sure where you got that from. Yes bloods are asked for at the first appointment to get an idea of the patients sex hormone ratios (more than the amounts), but they explain its a snapshot and prescribe by symptoms. They then alter dosage according to how they respond.
Oestrogen is very rarely taken into consideration due to the wild fluctuations, my 2 clinics were more interested in FSH, LH, progesterone on Day 21 (as its on a downward trajectory the closer you get to menopause) and testosterone.
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For KarineT.
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For 3isenough.
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:thankyou:
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https://www.goshen.edu/bio/Biol410/bsspapers07/rachaelah/Hormone%20Replacement%20Therapy.htm
This is an interesting but long read...
Thank you for posting this link Jari, it's really useful and informative. :-*
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For Tinacros.
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For ABoatNerd.
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For Merela.
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For lizziejt.
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Hi all,
Where do I find information about your 'compounding pharmacy' MaryG please?
I am really interested, but when I google, i find all sorts of sites that i'm not sure whether to trust.
Happy for anyone to message me, if it is not allowed to be put on here xx
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I haven't posted enough on this forum to send pms or reply to them so I'm having to post on the discussion thread.
Could MaryG and anyone else on this thread on compounded progesterone please pm me details of your doctor/clinic?
Thanks!
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PMDD and Jasmine20, I have replied to your PMs!
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Hi Mary,
I hope that you are keeping well. For some reason I cannot send private messages to members so wondered if you could send me a private message with more details on your HRT routine?
I will be 58 this year and had my last bleed Jun last year. I was using the patches and have also visited Prof Studd who prescribed me with 3 pumps of gel and utro for 7 days all was good but found after 6 months my previous symptoms returned. I have been off HRT since 2019 (Aug) and since then have been using a progesterone cream called Natpro (which is much stronger than the wellsprings) however, since my meno journey I have suffered from hormonal anxiety and PMT, and feel that perhaps I need to go back on HRT to help with my anxiety but like you my problem was with the progesterone part because after 7 days I would wake feeling really anxious once again. Your advice would be very much appreciated and wanted to thank you in advance for your time which you give to us all by sharing your experiences. Thank you .
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Mother bean, I'm sorry to hear about your progesterone problems. You are just a year younger than me and post menopause so I think my regime could work for you. I think that like me, you are now at the stage where you could benefit from the stability of a continuous combined HRT regime.
My only reservation is the fact that you mention PMS, did you suffer with it pre menopause? If your anxiety and PMS type symptoms started in peri menopause they could be caused by generic hormone instability.
I'm afraid I can't name the clinic I use on here but once you have posted 10 times, I think you can send PMs so please keep posting!
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Hi Mary,
Thank you for your quick reply, that’s much appreciated. I have been following your posts for a long time and admire how you have looked further into things and believe you talk a lot of sense.
Very briefly I was so say told I had POCS when I was 46 (not convinced though), I was told at the time my progesterone was low (but now after loads of research I understand that’s to be expected at that age) but at the same time I was told that I was making loads of eggs for my age, my testosterone was normal. I first started missing periods at the age of 49 and this was when my anxiety made its self known to me, but this was only after I had missed my first period and then brewing up for my next one ( approx 12-10 days before it arrived, and this was why I mentioned the PMT, once my period arrived everything would go back to normal, until the next time. I have tried the patches and the gel and have done ok on all but it was the UTRo progesterone that made me stop my HRT because I seemed not to cope with Utro after the 7 days but at my age really wanted to be period free so was why I wanted to use the combined on a conti basis. I have used the femseven conti and did ok with them accept I was allergic to the glue. Why do have your reservations about your regime? Sending you big virtual hugs. Joy xxx
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Mother bean, thank you for your kind words.
As you have probably seen from my previous posts, the Professor Studd regime worked well for me for a number of years until I finally hit the Utrogestan buffers. I found the Utrogestan destabilised my hormones and caused migraines and I also found the bleeding made me feel ill.
The reason I had reservations about my regime working for you was the mention of PMS but it looks like it started in peri menopause so a low dose of continuous progesterone should work for you. Some women with a history of PMS literally can't take any progesterone at all and often end up having a hysterectomy.
I have an unsubstantiated theory that migraines, insomnia, anxiety, panic attacks etc kick off in peri menopause because of the fall in progesterone levels - progesterone is the stabilising, calming hormone and it goes west before oestrogen.
Keep posting!
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Hi Mary,
Thank you once again for your kind reply. Prior to my missing my periods, some months I would never know when I was due on, so yes this PMT Larky only made its presence known when I missed a period an then started to brew up for the next one. Dr. Annie Evans confirmed that during the peri menopause your PMT for between 10-12 days before a bleed and can get much worse than before.
Currently I have been using a progesterone cream called Natpro which I purchase from progesterone therapy and each pump is 50mg with 33.33% of progesterone which has been great for me since coming off HRT back in 2019. Before that I was really fine with utro along with the 3 pumps of oestrogel which professor studd got me to use and sometimes was able to use 200mg for 10 days rather than the daily 100mg he prescribed for 7 day. Then one day after 7 days of using the 100 mg I would wake up with crippling anxiety always worrying over my health. I have tried the 3 pumps of oestrogel and the 100 mg of utro on a conti basis but just couldn’t find the stability with my hormones which was why I gave up.
My main symptom is the anxiety which I only get when I feel symptoms as if I were due a period even though I am not getting them, I also suffer with digestive issues and many other things that like everyone else seems to come and ago. All I want is to feel like the old girl I used to be, full of life and ready to take on the world. Thank you, Take care xxx
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I have used Bio identical hormones for 4 Years, It saved my life (and my husbands) They were a miracle cure for me!
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For Sophie.
The clinic I use are developing progesterone drops and were hoping to launch them this year but it hit the buffers due to Covid.
I will let you know of any further developments. Sounds like an interesting product.
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Morning Mary G >wave<
Welcome Girls ........... keep asking and discussing.
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I personally think it is healthier if everything is discussed in relation to HRT. What is new on the market? What hasn't been tested sufficiently yet but holds promise. I am reminded that the Astra Zeneca has only been through short trials, but quite a number of people have taken it; in light of the current situation and the possible implications of not taking it. For me, it is a case of weighing up different approaches, and having the freedom to undertake my own research given that information or lead.
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For Crispychick.
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I have some good news from the Specialist Pharmacy in London. They have now developed the sublingual, body identical progesterone drops after clinical trials. They also have a cream and fast release tablets available.
I'm still working my way through my lozenge prescription but I am going to try the drops when I have finished the batch.
It's good to know there are some different forms of body identical progesterone available now.
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That is good news Mary G thanks for sharing. It’s good to keep abreast of new developments re progesterone x
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Hi MaryG
Thanks for updating us on the options for progesterone.
Do you know what the advantage is of sublingual drops over lozenges - is it that you can titrate the dose more easily?
I know there are differing opinions about progesterone creams too.
I've gone back on Utrogestan but it's not ideal for me.
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Perinowpost and Jasmine20, yes, it is good that more progesterone choices are available.
The drops will be more user friendly I think and it avoids having to cut the lozenges which come in 200mg tablets and need time to dissolve between the top lip and the gum. The drops can just be administered under the tongue and that's it!
As for the cream, it is a bespoke cream and this is available at various doses and therefore stronger than the stuff available online. They have trialled all the products and their effects on the endometrium and they do keep the lining thin as do my 50mg lozenges.
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I have some good news from the Specialist Pharmacy in London. They have now developed the sublingual, body identical progesterone drops after clinical trials. They also have a cream and fast release tablets available.
I'm still working my way through my lozenge prescription but I am going to try the drops when I have finished the batch.
It's good to know there are some different forms of body identical progesterone available now.
It ia always good to hear about different forms of progesterone being developed for the benefit of those who don't get on well with the ones currently available.
I have some things to say about this. First I would hope if there have been clinical trials then these will be published in a peer reviewed paper to be avialble to the whole scientific/research community. If it does work well for different doses of oestrogen and over the typical periods of time that is needed to study the effectiveness in protecting the endometrium, with minimal side effects - then hopefully a pharma compa ny could develop a product for commercial use and available on NHS. My main gripe with all of this is firstly the lack of (published) trials and secondly that all of these sorts of products are really only available to the very few who can afford the high prices charged so anything to make these products more wudely available to all has to be good.
From a biological point of view I wonder about the value of sub-lingual delivery of progesterone in terms of side effects. With oestrogen - a spray ( or sub-lingual - though I don't know about what is available here?), the main aim is to get it into the blood stream as quickly as possible I think.
However with progesterone - I would intuitively think that taking it sub-lingually would cause a rapid burst/spike of progesterone in the body, which, because of its instability in the body will decline over the course of the day - so actually leading to more artificially induced diurnal fluctuations (daily peaks and troughs) and therefore potentially more side effects. Because progesterone is not stored anywhere then I'm sort of thinking that a big dose would still be needed to counter this breakdown - eg when compared to vaginal use which goes straight to the uterus and in my view from what I've read, is the best method of delivery to protect the endometrium. I can imagine there would be fewer side effects from sub-lingual use than oral but not compared with vaginal maybe?
If the proposed sub-lingual delivery is more frequently than once per day this would make more sense if women were able to remember to take it, because the ovary pumps out progesterone normally in regular pulses throughout the day (?and night) - once per day of a large dose is unnatural hence we (many of us) experience moreside effects.
Re cream - the same argument applies. Publish the data showing efficacy and fewer side effects then pharma develop a standard product available to all if possible!
Hurdity x
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For Mindfulmoomims.
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Thank you Mary xx
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I have just ordered my first prescription of 50mg progesterone sublingual drops.
I will keep you posted on here as to my progress!
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How do they differ from wgat you were taking before Mary? Lozenges??? What's the benefit?
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Crispychick, the dose will be exactly the same but the drops will be more user friendly. I like the lozenges but they take about half an hour to dissolve between the top lip and the gum whereas the drops go straight under the tongue.
I haven't read the instructions yet but I'm told you simply deposit a drop under your tongue and make sure you don't swallow for a couple of minutes and job done! Sounds good.
I'm always keen to try new products when they become available.
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I believe that some angina tablets are deposited under the tongue for fast treatment?
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Fabulous. I certainly take spray vitamins and I love them. Always squirt into my cheek. Maybe I'll try under tongue!
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Sounds good MaryG let us know how you get on x
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Hello Mary G & all,
I just wanted to chip in & say after 10 years of great suffering with various different types of progesterone (including the Kyleena) I am on day 3 of using a progesterone lozenge. All I can say is so far so good but there have been many types of pg ive tried that I’ve been in hell (again) by now. I will see how it goes. I’ve been on 3 pumps oestrogel & 2 pumps the day after (alternating) but I’ve dropped this to 2 pumps daily now. I will see how it goes as I said but wondering when & if I should drop the oestrogel to one pump daily. I don’t want to give my body too much change to deal with at the same time but equally wondering if I will soon have too much oestrogen in my body vs pg?
Before starting the lozenges I was on 200mg Utrogestan once every three days used vaginally. I’d imagine I will probably be ok for a while whilst my pg levels come down a bit. My main symptom now is headaches but greatly improved by stopping the Utrogestan & starting the lozenges.
I know it’s early days but I’m very surprised to not not feel completely dreadful on the lozenges by now. They might just be what I’ve been searching for for many years. I suffer from fatigue as I’m hypothyroid but hopeful this new HRT will help to stabilise things more so my thyroid medication is better utilised. I find it impossible to know if it’s low oestrogen causing my fatigue or high oestrogen blocking my thyroid medication. If I see one doctor (who uses blood tests) they say my oestrogen is too low and if I see another (saliva hormone test) they say my oestrogen is a little high. Time will tell who is right & hopefully the lozenges will help me get to the bottom of it as 10 years of trials and all errors……is quite enough for me x
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Blue Kingfisher, it's good to hear from you.
I remember our conversations about progesterone very well and although it is still early days, I'm really pleased that the lozenges seem to be working for you. Three years ago, I started on a 50mg progesterone lozenge with 2 pumps of Oestrogel and it was a good balance so personally, I would not reduce the oestrogen yet. I have now reduced to one pump of gel but that is because of (a) migraines and (b) I'm now 60 and can be symptom free on a very low dose of oestrogen.
I think the reason the lozenges work so well is partly due to the 50mg dose and also the better the delivery method. I think 200mg Utrogestan is far too high a dose in one hit which is why so many women struggle with it. I wouldn't think taking 200mg Utrogestan every three days would be a very good balance either.
Good luck and please keep us updated.
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Thanks Mary G, I’m hitting a few speed bumps so I’ve started a new thread on this. Interesting that your headaches were caused by the oestrogen…….I’m not sure if mine are caused by the too much or too little oestrogen in relation to the lozenge! Anyway, I’ve started a new thread but your experience on this is hugely appreciated xx
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The compounded progesterone lozenge is something I'm considering right now. Very long story shortened, high dose oestrogen, 7 day utro, blob of testo gel, all working fine until about 3/4 years ago, I can't remember exactly when it started to slide but it was very gradual and the obvious element was that the oestrogen made me feel unwell and the first 2 days of utro, I felt great, thereafter, I felt hellish with all the usual bad fallout of utro. Pillar to post and back with GP and NHS endo who both offered anti-depressants, diagnosed CFS, Fibromyalgia and Depression - obvs! and continuing to reduce my oestrogen as it was the only way I felt well. My symptoms and blood tests pointed to very low thyroid and adrenal hormones but no-one was able to explain why. I recently approached a private endo who explained that the maelstrom that occurs during menopause for some women affects not just the sex hormones but the adrenal hormones and in turn the thyroid is affected. The upshot is she suggested I try both progesterone at 25mg and/or pregnenolone at 25mg per day as they both help to balance the adrenals which are put under enormous stress during menopause transition. On this horrendous journey I found that 10-20mg Progesterone cream was the one thing that made me feel better, whereas oestrogen made me feel really ill. I'd like to continue with progesterone but would prefer to know I'm using a good product with clear dosing. I never thought I'd ever find myself saying that prog was my saviour, it was hell for me for many years, but if this journey has taught me anything, it's that oestrogen is not the only game in town during menopause and it may account for the fact that for many women, particularly those in surgical meno, oestrogen only, will not provide the best outcome as it's not the only hormone we're lacking.
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pollywollydoodle, what you have said makes a great deal of sense. I used to think that progesterone was my worse enemy but that was because it was either (a) synthetic or (b) it was body identical but the dose was too high.
At the correct dose, I find body identical progesterone to be beneficial and calming.
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I have been using the progesterone drops for over a month now and I'm pleased to say they are just as good as the lozenges but more user friendly. I just drop them under my tongue, wait a couple of minutes and job done.
Another benefit is the dose is very easy to adjust if necessary.
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Thanks for the update Mary G, sounds very encouraging. So presumably you use the drops at night, no food or drink for a certain amount of time after using them I’d imagine? Do you leave an food/drink air gap before taking the drops too?
I’ve been using the lozenges now for 42 days and so far it’s the only form of progesterone I can tolerate on an ongoing basis. Stability is very key for me with the sex hormones or it throws everything out with my thyroid. I take the lozenge last thing at night but I’m careful to clean my teeth a good 30 mins prior to that in case there is any interference. Besides, the lozenges taste better when a little bit apart from toothpaste!
I’m largely very very pleased with the lozenges to date so I’ll stick with them for now but may think about the drops in the near future as they seem like a good option. Xx
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Good to hear that update Mary G.
I've now started my journey with the compounded BHRT sector... Currently undertaking all my initial tests. I'm very excited...
I find the progesterone stories very interesting. Particularly your point on synthetic or utro at one dose being too much.
At 45, I think it very probable I've been low in prog, rather than estrogen - something the NHS doesn't seem to consider. :'(. But I have no doubt in my mind that if I suddenly started supplementing with utrogestan alone it would be far too much!!!
I like the sound of the drops. 👍
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Blue Kingfisher, I'm so pleased to hear that the lozenges are going well for you, long may it continue.
I always use the progesterone drops last thing at night after cleaning my teeth. I don't worry about eating beforehand but I don't usually eat just before bedtime. I don't eat after teeth cleaning anyway but it does say in the instructions that you should not eat or drink anything for half an hour.
CrispyChick, I too was short on progesterone from about mid 30s which was when my panic attacks started - now completely disappeared luckily. I now realise that it was a lack of progesterone that was partly responsible for the silent migraines which started when I was just 43.
It will be interesting to see how you get on with a low dose of progesterone, I wish I had tried it myself but I was completely in the dark about it back then.
Good luck and please keep us posted on your progress.
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Good to hear that update Mary G.
I've now started my journey with the compounded BHRT sector... Currently undertaking all my initial tests. I'm very excited...
I find the progesterone stories very interesting. Particularly your point on synthetic or utro at one dose being too much.
At 45, I think it very probable I've been low in prog, rather than estrogen - something the NHS doesn't seem to consider. :'(. But I have no doubt in my mind that if I suddenly started supplementing with utrogestan alone it would be far too much!!!
I like the sound of the drops. 👍
Good to hear that update Mary G.
I've now started my journey with the compounded BHRT sector... Currently undertaking all my initial tests. I'm very excited...
I find the progesterone stories very interesting. Particularly your point on synthetic or utro at one dose being too much.
At 45, I think it very probable I've been low in prog, rather than estrogen - something the NHS doesn't seem to consider. :'(. But I have no doubt in my mind that if I suddenly started supplementing with utrogestan alone it would be far too much!!!
I like the sound of the drops. 👍
Good to hear that update Mary G.
I've now started my journey with the compounded BHRT sector... Currently undertaking all my initial tests. I'm very excited...
I find the progesterone stories very interesting. Particularly your point on synthetic or utro at one dose being too much.
At 45, I think it very probable I've been low in prog, rather than estrogen - something the NHS doesn't seem to consider. :'(. But I have no doubt in my mind that if I suddenly started supplementing with utrogestan alone it would be far too much!!!
I like the sound of the drops. 👍
Hi Crispychick - re being low in prog. Yes many women produce less progesterone during peri-menopause and especially during anovulatory cycles - which can lead to all sorts of bleeding problems. So if this is happening to you at 45 now (?) then thats why.
However progesterone is only produced in high amounts during the second half of the menstrual cycle to prepare for fertilisation of the egg - we do produce progesterone in small amounts all the time which does perform other functions in the body. Replacing progesterone as part of HRT is to protect the womb and redress this balance (eg to regulate periods) rather than any therapeutic reason or to relieve other symptoms.
Some women (the minority from what I underdstand) like the sedative effect of progesterone and so like to take it for this reason - more as a drug than as an essential hormone.
It is well known that many women do not like to taske the large doses of progesterone they have to do as part of HRT. Notwithstanding the shocking lack of choice for women in progestogen preparations and dosing, it is essential that progesterone is given in sufficient doses to protect the endometrium and many of us feel this is the downside. Yes it would be great if there were a 50 mg dose - and medically supervised alternate day vagina dosing (or longer cycles) is one way to achieve this with lower doses of oestrogen.
Meanwhile it (prog) must be given at high enough doses to protect the womb if taking oestrogen because it has a short biological life in the body, and also with high doses of oestrogen more is needed.
The bottom line is that any of these compounded progesterone products are not regulated nor standardised (and not approved by BMS) so it is not known whether they will be sufficient to protect the womb. OK this can be achieved by regular scans - but this is likely to be extremely costly on an ongoing basis and out of the reach of most women.
The other thing I want to point out to anyone thinking that drops or lozenges are the way to go - is that this is equivalent to a transdermal mode of delivery ( which doesn't exist for progesterone, only for artificial progestogens) in that the progesterone is absorbed systemically directly into the bloodstream compared with oral delivery which goes through the digestive system. For women who are intolerant of prog thius may not be the saviour they are seeking. Vaginal delivery is the one method that goes directly to the uterus and even though is absorbed systemically too - lower doses can be given for the same level of protect the womb because more of it is held at the uterus where it is needed. I think it is important for women to be aware of this.
We certainly need more options available on NHS!
Hurdity x
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CrispyChick, having actually used these products myself and therefore with the benefit of first hand experience, I have found both the progesterone lozenges and drops have far fewer side effects than the dreaded 100mg vaginal Utrogestan. However, your clinic will give you the option of either buccal (lozenges) sublingual (drops) transdermal (cream) oral or vaginal application. You have a choice of application and dose which is vital to success.
To reassure you, I recently switched to progesterone drops but had been using the lozenges for three years with conventional Oestrogel and testosterone and all my uterine scans have been well below the recommended 4mm.
Good luck and keep us posted.
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Thanks all for your views and experience.
The bottom line is I don't know what hormonal imbalance is causing my symptoms. Some symptoms point to low estrogen, some to estrogen dominance.
What I do know is I'm not prepared to live another 5 years in this symptomatic hell.
I am going into this with my eyes wide open. At my age (45) progesterone can commonly decline leaving an inbalance (estrogen dominance) but not nessecarily excess estrogen. The NHS can not help me with my symptoms.... Therefore I have no other option.
I'll happy 'try' compounded progesterone if if might work. And I really appreciate hearing the experience of others on this forum.
Yes, the scans and bloods etc are expensive and out of reach of many. But, after 5 years of no solution, I've decided to pay that money (I really would rather not). If it doesn't work, I won't be paying it long term. If it does work, I'll happily forgo other luxuries in life to get back some much needed quality of life.
I should add I'm in Scotland and therfore unlikely to be prescribed utrogestan... So that's yet another hurdle.
So, I'm sure there is no lady out there that would choose unlicensed medicines over licenced, if they could get what they needed through the licenced route. These woman are desperate to resolve symptoms.
So, I appreciate hearing real hand experience and I too will, in time, share my experience of compounded BHRT... Good or bad, in the hope I can help others.
:)
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Hi Mary G.
Just started on the Progesterone lozenge and it’s taken 50 minutes to dissolve! Any tips would be appreciated.
Also my lozenges contain polyethylene glycol which I’m not too keen on, do you know what your drops contain? xx
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Marchlove, I always took the lozenges at bedtime so I didn't really know how long they took to dissolve.
My drops are pure progesterone with an ODS base. I've no idea what that is but I'm still doing well on them!
If you are allergic to the ingredients in the lozenges, you can ask to switch to something else and I would suggest the bespoke progesterone cream which is now available.
I hope that helps.
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Yes it does Mary G, thank you.
It’s still very early days, so I’ll see how I get on and report back.
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Thought it would be helpful if I gave another update to you all on my troche experiences so far.
They are now dissolving far quicker, about 20 minutes for the estrogen which I take in the morning and 30 minutes for the progesterone which I take about 9pm.
Mood has been a lot better.
I get late afternoon aches, think it’s because estrogen is running out. But ok over night after the progesterone so can’t figure that one out!
Main issue though is sore sensitive gums. Don’t know if anyone else has experienced this whilst using a troche?
I suppose it could be an initial start up thing, so might settle, or as Mary G said I might be sensitive to an ingredient.
I didn’t get much benefit from the progesterone cream (might just be me), so will stick with the troche for now but might move onto the drops if the gum issues don’t resolve.
All in all though I feel better than I did and am encouraged to keep going.
Hope this will be useful to others thinking of trying it out in the future. xx
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Marchlove, thanks for the update.
Come to think of it, yes, I did have some irritation to the gums and roof of the mouth with the lozenges but nothing too terrible. It used to come and go and was not helped by burning my mouth badly with very hot food on one occasion last year if I remember rightly. I have always had mouth sensitivity with progesterone though.
I'm still doing well on the progesterone drops. I had my annual transvaginal scan yesterday and I have to say I was slightly apprehensive. My brilliant German gynaecologist has retired and I had an appointment with a Spanish, male gynaecologist who I have never met so I was unsure as to how it would go. I need not have worried, he was so kind and reassuring, pro HRT and he knew the late Professor Studd from his time in London! He used to attend his seminars and knew all about his extensive work on all things hormonal.
He gave me the scan (the gynaecologist does the scan personally here) and the lining measurement came out at 3.3mm which is very good and confirmation that compounded progesterone keeps the lining thin.
If you can live with the gum issue, it's probably worth sticking with the lozenges but I'm sure they would be happy to let you try the drops if you asked them and explained the situation. Mood wise, I find both products exactly the same.
Overall, it sounds like you are doing well.
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That’s great news about the scan Mary G! I can appreciate your apprehension with it but just goes to show that sometimes you just have to follow your instinct about what’s right for you.
Useful hearing your mouth/gum sensitivity with the progesterone. Strangely, I sort of realised it is the progesterone and not the estrogen causing the mouth issues. I think it might settle with time and switching areas in mouth where it dissolves.
Will update in January, but in the meantime Happy Christmas Eve. xx
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Any of you ladies offer any words of wisdom.
I've started my progesterone treatment. 25mg capsule a night for 10 days. I was in a terrible state with my estrogen symptoms, but now, 8 days into the progesterone I feel I've topped the other way. Getting headaches which I had got rid off when I came off the pill 3 months ago. Also give very narky and low.
Does it take time to get used to adding in progesterone, no matter how low the dose???
Also been started on testosterone/Dhea cream.
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Hi CrispyChick, i think i mentioned to you in a previous post before Christmas that i was now taking progesterone cream instead of HRT. The utrogestan 100mg i was given to take daily (along with oestrogen patches) was a nightmare for me and caused no end of problems.
I had no side effects at all when starting the cream but i do wonder if the cream (although it is 25mg a day) is still a lesser dose than your tablet - i split it between morning & evening.
I do feel for you trying to sort out something that works, i can only speak from my own experience of buying this progesterone cream from the USA. By the way, i'm still taking the mini pill - which i have been doing for years, not sure if that makes any difference. I did start getting hormonal migraines in my mid 30s for a couple of days before each period & took Sumatriptans to sort it. It was when i went on HRT (only for a short while) the headaches & everything else went wild, i felt like a different person, just horrible.
With best wishes.
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Thank you for your reply Sam - I was hoping to find you again.
That's very interesting. Perhaps cream would be better. I'll do my last night tonight and see what happens when I stop the progesterone as instructed. I'm only to take it 10 days out a cycle. I have read, and the clinic did say, it can take 2 to 3 cycles to work. However, I kindof expected to feel no different rather than other symptoms.
It may be my own fault I started on capsules. I thought that's what the doc had said, but my prescription came through for cream. I queried it and was told I could just as easily have the tablets - so perhaps she did intend me to start with cream.
Anyway, I'm here now trying it. Waited a long time for this. So lll plod on.
Interestingly I don't have flushes. My estrogen symptoms are immense brain fog, dizziness, nausea and full ears. All of which have defo improved over the last 8 days. But I really don't want to replace them with headaches and lowness 😔. Hopefully my body just needs time, to adjust.
I've to book a follow up in 2 months. I don't want to go too soon, as I'm paying for it. So will do a good trial first. I'm sure a lower dose or cream would be an option. Cant believe they give people 200mg of this, if 25mg gives me headaches. Wow.
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I have also read that starting progesterone alone can reawaken estrogen receptors and wurseb symptoms for a few weeks...
But going down that Google hole gets a bit scientific. So I'll just plod on and see what happens... At least I've started something and have a specialist to go back to.
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Hi CrispyChick,
ha, i'd read something on those lines too but then you get to the point where you don't know what to believe and then you can bog yourself down with too much information ;-).
See how you go with the regime you've got started on and then, if it really is not helping you or making things worse, do try the cream. As you say though, 200mg seems an awful lot - I felt dreadful on 100mg tablet so my thinking is that we may just need a little bit to balance us out and everything then feels okay - that's all we want. I guess my thinking with the cream is that you can add a little less or more & experiment with amounts yourself.
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Can someone also help me out of this hormonal hell hole ?
Post menopausal, aged 50.
Been on 100 utrogestan daily and 75mg patch for over a year.
Bleeding on and off. Hysteroscopy did not reveal anything sinister 8 months ago, but god knows what’s happened since!
Currently awaiting another womb scan ( could be weeks to wait! )
Tried reducing patch to 50 and feel horrendous.
Can’t sleep, anger, irritability etc etc
Gel makes me feel sick.
I’ve got lenzetto, bijuve and femeston Conti from private specialist, in the hope that something works. But at the moment, feel to unwell to try anything new and can’t face another bleed.
Life feels grim 😢
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Naz
I can't really help you, but didn't wa f to not post.
You say you feel awful on reducing the estrogen. Did you feel awful at 75mg or was it just the bleeding causing issues???
As I'm demonstrating, some of us can be very sensitive to mild hormonal changes. That's why I've gone down the alternative route of compounded BHRT. You e just dropped 25mg of estrogen, so I'm not surprised you're feeling vile.
Could you afford to pay for the scan??? The way things are going with covid I think we can exoect more delays... X
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Thanks Crispy,
I felt okay mentally on the 75 patch but the bleeding and tummy pain were getting too much .Within days of the hysteroscopy, I was bleeding again.
Gynae have suggested womb ablation, something to consider I guess.
I think I am hormone sensitive also and would quite like to ditch all hormone treatments and find an alternative.
I may have to pay for a scan at this rate, as cannot wait much longer.
A whole month of feeling horrendous 🤦♀️
Xx
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CrispyChick, you mention progesterone capsules, are they the dissolvable lozenges or the fast release tablets?
Nas, if you have bleeding problems then an ablation could be a good option for you. You would still need progesterone but you could get away with a much lower dose. How do you feel on oestrogen only?
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Mary, they are capsules to swallow. From the MG clinic.
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Crispy, I have never tried the oral capsules (fast release?) but I wonder if oral progesterone has more side effects? Obviously it's early days and it's worth sticking with them for now but I would have thought that either lozenges, drops or cream would have been a better option.
What was the thinking behind the oral progesterone?
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Ah. Well, like I said above, I thought she'd said capsules but prescribed cream, so when I checked, they got back to me saying I could have capsules if that's what I wanted. So I possibly picked it up wrong and caused the confusion. The joys of online video calls.
Not sure if they're fast release. They certainly don't say they are delayed release, so I assume so.
Still.... My last one for the month tonight. Although the last 2 days have been harder, I've been a lot worse on my contraceptive pill trials. So I'll plod on to next month - nice to know there might be alternatives that are better though :)
Be interesting to see what happens when I stop taking the progesterone for the month... 🤔
I'm also taking testosterone/Dhea cream. Suppose it could he that. But if feels like the progesterone effects.
Thanks for the advice. It's very early days for me. I'll make a follow up appointment for after my second month. ;D
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Thanks Mary,
Think I will go for the ablation, assuming I haven’t got endometrial cancer or some other nasty when they finally scan me!
I think it’s the Oestrogen which is to blame. It’s like it stirs my womb into turmoil, just awful. But my brain and the rest of me needs the Oestrogen. Something must have happened between September and now, as I had 3 great months during the summer, of no pain or bleeding on my patch and utrogestan.
Im sailing in choppy waters, as I’ve had breast cancer and have been seen by both NHs and private specialists. Not helped by the fact, that neither can agree the best way forward for me!
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Hi Nas
Have you ever read any of Rebecca Glaser’s studies/articles on taking hrt after breast cancer?
Big on Testosterone implants for breast cancer ladies and according to my uk gynae she is a very well respected doctor.
Hope things settle down for you xx
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No March, I’ve not read those papers you’ve mentioned.
I’m struggling with getting oestrogen into my body without bleeding! Just in total hell right now.
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Urgh. Me again.
So I took my 25mg progesterone tablets for 10 days as Instructed. As per my previous post I experienced headaches and narkiness (the headaches were almost like a withdrawl mid afternoon).
Since stopping I had one excellent day ;D followed by a period. Now, immediately after my period my symptoms of estrogen dominance are off the scale. I feel poisoned, sick, dizzy, off my food. Just awful. Me at my worst. And where I started with all this.
I have read that progesterone causes an upsurge by estrogen receptors, making estrogen even more effective when you first start progesterone. Not sure if thats true or not, but it certainly feels like it here.
My question really is, should I switch now to the cream??? Because I thought it had been prescribed in error (because I thought the Dr said capsules) I can still access the prescription for the compounded cream. It would be the same 25mg dose - but maybe it would be a gentler start. Any thoughts???
I've enailed my clinic, but I'm not prepared to pay for a review appointment until I've tried the treatment for a few months as suggested. So I don't know if they'll ask the Dr for me or not. 🤷♀️.
Am I jumping too soon, or would switching methods from capsules to cream be a good idea??? I know Mary G is surprised I was given capsules. Is crsam a better delivery route to start out with?
Thanks x
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Hi Crispy Chick, oh i do feel for you. All i know is that (fear of repeating myself ;-)) i felt exactly as you described when i started the HRT with the progesterone tablets & oestrogen patches, prescribed the menopause GP.
In terms of "progesterone causes an upsurge by estrogen receptors" thus causing more horrible side effects, i never had that with the cream i bought. I wonder if creams vs tablets can cause this difference? I just wanted to check though that the progesterone tablets you started taking are the same formula of progesterone cream i'm taking (natural micronised progesterone? I'm guessing so from what you've mentioned before. And the 20 - 25mg is roughly what i take each day by cream.
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Hi sam
Thanks for replying. Yes cream and capsules both compounded mico progesterone. It cost me a fortune... Now I've just ordered the cream too. >:( still... I'd rather get it right.
I'm glad that u have the same symptoms when high estrogen (well, not glad, but it's good to feel sane!). I am soooo bad today. I can literally do nothing.
Given the capsules gave me headaches which felt like late aft withdrawl, and given the doc was happy to start me on the cream (had I not queried it 🙄 - possibly Wrongly), I think I'll try the cream this month. Still says start on day 11. The next 7 days are going to be tough until I get to day 11.
I have found posts by Dangermouse (not sure if she is still active) who said the first month of progesterone only therapy made her awful before making her better... Fingers crossed that's what's going on. Could also be worse if oral capsules have given me a bigger dose I guess.
So, you take prog cream in addition to the mini pill. That's interesting. The mini pill keeps your estrogen low. I used to get on fine with it but the started to experience horrific pmt (but no period). That would make sense as the progestin does not replace your own progesterone. So interesting to know that combo works for u. 👍 What made you decide to try that combo???
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CrispyChick, sorry to come in late on this but I was going to suggest phoning the pharmacist at the Specialist Pharmacy - assuming you get your prescription from them of course.
I can see that you have now ordered the cream which sees like a far better option but I would still ring the pharmacist and run your particular case past her. I found her extremely helpful and she was able to talk me through the products/options.
Just one question, if you are oestrogen dominant, why are you using progesterone cyclically? I would have thought you need a low dose every day.
Hope the cream works.
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Hi Crispy Chick, Mary,
actually on the progesterone cream - i do take it every day, primarily because i don't know where i am in the menopause phases due to not having periods on the mini pill.
Re the mini pill, my GP said to stay on it for now if it's not causing any problems, no reason given & to be honest, i didnt ask. I used to be on Cerazette but was changed to Cerelle a couple of years ago due to availability issues. I was never sure if it was masking some menopause symptoms so i've been a bit nervous about stopping it although i guess its not needed any more for contraception ;-).
Just on a side note, my younger sister started the cream a week or so ago. She's so nervous about starting HRT after my experience and in the last few days her bad daily headaches have stopped. She's actually on the mini pill too.
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Thanks ladies.
Mary - it did cross my mind to speak to the pharmacy. I've just sent an email. I get very impatient when feel this bad, hence I just ordered the cream ;D. Partly because I need it for next Thurs if I'm going to switch - and it takes that long to compound and send.
You're right - I've now sought their advice on the best form to start with and why my symptoms have intensified.
No idea why I'm on 10 days only. I had assumed it was because that's when u naturally produce progesterone. Many cream regimes I've googled seem to follow like this. Also, the idea of starting slowly was definitely mentioned...
As my post last week - I did feel like I tipped the other way, but the last few days I've well and truely tipped back again!!! This is horrific.
Still... I just want to get back on it and see where I go, but I did feel the capsules were quite harsh. And perhaps eliminated quickly - hence the headaches.
I'll see what advice I get. Try and get through the next week and start cream or capsules next Thurs.
I'll then make my follow up appointment at the clinic.
Thanks ladies. Really appreciate not feeling alone. X
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Thanks for the update Crispy but sorry you have had to pay for another prescription.
I would be inclined to go back to the doctor to get some clarity and question why she prescribed the progesterone cyclically. I would also tell her about the cock up with the progesterone tablets. I know you asked for them but I don't think she should have sanctioned tablets for someone who needs progesterone for therapeutic reasons and should have phoned you to talk it through.
Please let us know when you hear back from the pharmacist.
Sam, it sounds like you have got a good regime there! I hope it works out for your sister too.
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I think looking back she probably did mean me to start on cream, hence the first prescription.
I'd written down capsule next to progesterone during a telephone conversation because the video wasn't working :'(. But that might've been during her chat about the different methods. But you're right, she should've cone back and insisted cream was right when I queried it.
That said, I don't actually care about the extra money. I just feel so bad, I want something that works. I wasn't expecting to feel instantly better, but I wasn't expecting to feel worse.
I've just googled and the American Dr Lee that heralded prog only recommends 14 days pre menses. Every day for post meno. I do recall asking if it will unbalance me to only take half the month, but she said it helps with overall balancing.
I'll certainly ask at my next appointment. I also need a month or two of trialling first I guess.
For the time being i'll await a response to my emails to the clinic and pharmacy. 🤔
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Hi sam
Thanks for replying. Yes cream and capsules both compounded mico progesterone. It cost me a fortune... Now I've just ordered the cream too. >:( still... I'd rather get it right.
I'm glad that u have the same symptoms when high estrogen (well, not glad, but it's good to feel sane!). I am soooo bad today. I can literally do nothing.
Given the capsules gave me headaches which felt like late aft withdrawl, and given the doc was happy to start me on the cream (had I not queried it 🙄 - possibly Wrongly), I think I'll try the cream this month. Still says start on day 11. The next 7 days are going to be tough until I get to day 11.
I have found posts by Dangermouse (not sure if she is still active) who said the first month of progesterone only therapy made her awful before making her better... Fingers crossed that's what's going on. Could also be worse if oral capsules have given me a bigger dose I guess.
So, you take prog cream in addition to the mini pill. That's interesting. The mini pill keeps your estrogen low. I used to get on fine with it but the started to experience horrific pmt (but no period). That would make sense as the progestin does not replace your own progesterone. So interesting to know that combo works for u. 👍 What made you decide to try that combo???
Hey there,
I have recently used progesterone again. I have only had a couple of periods in the last 2 years and my hormone levels are around 44 for oestrogen and progesterone about 0.3. I felt much better but wanted to try the BHRT now my levels were not as volatile.
My doctor at London Hormone Clinic said as my symptoms were not consistent throughout the month that I was clearly still having volatility and this would be oestrogen surges but on a lower grade. She explained that both high oestrogen and low oestrogen do not cause the neurological symptoms I tend to get, but fluctuations do.
I tried the progesterone lozenges for a change, they seemed to work more instantly but also seemed to leave my body very quickly, causing some volatility. I had no joy before with Utrogestan (oral form) as oral forms can go down the wrong hormonal pathways apparently, particularly if, like me, you have sluggish digestion which compromises the liver.
I decided to go back to the cream, on a higher dose now I was no longer having high oestrogen surges, and I found 100mg once or twice a day really effective and completely stopped my migraines and other mood/neurological twitches and tachycardias. Also hot flushes completely stopped. Mine was from the PCCA/Customised 4U pharmacy. I felt so much better and my resting pulse was finally at a normal rate where the little oestrogen surges caused my heart to be over stimulated, creating a constant anxious feeling. I also found the stiffness in my body reduced immediately.
After a few weeks I started getting very bloated and found out that progesterone is a diuretic so I tried to add some Lenzetto spray, to try to balance it, but after 2 days I had a 3 day nausea migraine (literally heaving 24/7 like travel sickness which is how I was 6 years ago in early peri). So for now I have stopped everything but I may use progesterone every other day with gaps so it doesn't build up, as the horrible withdrawal feeling only seems to strike on day 2 of stopping.
Hope that helps!
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I can't seem to edit my post but I wanted to add that I realise now that oestrogen will always cause migraines for me, even when my levels are low so I will only ever consider progesterone only.
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Just putting it out there Crispychick but are you sure the problem is oestrogen dominance? And re the progesterone causing an upsurge in oestrogen receptors theory, are you sure that’s the case and it’s not just progesterone withdrawal you’re suffering from? It’s very common and something many of us struggle with (me right now 😞) and the main downside of taking prog x
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Thank you so much ladies, that is all insightful.
Dangermouse - I have read a lot of your old posts as my symptoms are very similar. Horrific motion sickness being the first and worst symptom. It had calmed down a lot and is back with a vengeance this week after my first 10 days of progesterone capsules.
I'm so glad to hear things have calmed for you... If not fully resolved.
I did read one of your posts from a while back where you said the first month of prog therapy you reacted badly to, then it started to help - I think you were travelling at the time. Can you recall if it made your estrogen symptoms worse???
From what you've said, I'm guessing you think cream is the best route? And oral can 'go down the wrong hormonal pathways' - not sure what you mean, but it sounds bad 🤣.
I too suspect prog can build up. Might be another reason I've been told 10 days a month to start with 🤷♀️
Perinowpost - thanks for the input. I really have no idea. However, my symptoms are the same as my worst which are explained as estrogen dominance by my doctor. When I stopped the progesterone on Thursday, I felt good 2 days later, that was just before my period when my estrogen would also be low.
I must say, the reactivating estrogen receptors does sound a bit far fetched, but... Dangermouse has pointed out oral prog can go down the wrong pathway.
I was getting daily headaches laterally with the prog - and that felt like withdrawl. I think the half life of prog is fairly short. Can I ask what your prog withdrawl symptoms are??? Are you on estrogen with it and therfore a high dose of prog???
I'll update if I hear back from the clinic (not sure they'll engage for no money) or pharmacy. X
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Hi Dangermouse, Crispy Chick,
sorry for the delay replying.
When i was trying to figure out what hormone i was low in - neither the private GP or the local NHS doctor were not able to advise on that, i just decided to do my own research working with the main symptoms i had. I have to say though that the migraines & bad headaches too were becoming debilitating. At one point it was nearly every flipping day and i was reaching for Sumatriptan or co-codamol. I think this was actually worse than lack of sleep as it affected me so much in the daytime. I run my own business so it's not like i could take a day of work when i have a lot of projects in.
My sister, suffering the same is just taking the progesterone cream at night, a slightly lower dose than me and she was actually giddy with excitement to let me know she has had 3 days without a migraine. It's tricky recommending or suggesting a medical regime as we're all different but i was so relieved for her. Now whether it sorts out her anxiety & tiredness is a different matter but too early to know there. Dangermouse, it might be worth trying different amounts /every other day and i'm still figuring out myself what the optimum amount is to take.
i cant see myself using oestrogen any time soon and perhaps i might never need it. From a lot of experiences i've read here and on the Balance app, it causes more problems than it resolves for some ladies. What i do know is that the oestrogen patch caused the worst head pain i've ever experienced in my life.
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Hi Crispychick
I couldn’t manage without oestrogen, for me it’s the feel good hormone and puta me back to me. I started it first (before I introduced prog) and will never forget how good it made me feel. I am on evorel 50 patch which is an average dose.
I have problems with progesterone though. I can only tolerate it for 7 days (vaginally) and the last 2 days, and then the 2 days going through withdrawal are hard. Symptoms for me are low mood, irritability, negative thinking (I’m not like this any other time), headache, blurred vision, poor memory, eczema flair up in my hairline and loss of libido.
Hope this helps x
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Thanks sam and perinowwhat
I'm pretty sure my problem is estrogen. When I stopped the 10 days of prog, although I was suffering a bit on it, I was fine 2 days after. Its now, at the beginning of my next cycle that I'm awful. This is normal for me, although elevated this month.
I'm guessing you're on utrogestan perinowwhat??? My dose is 25mg micro prog, so much much lower than that used to balance hrt estrogen.
Today I have my first headache at this point in my cycle, since 3 months. So hormones have defo been haywire since adding the prog.
Sam - What brand/dose has your sister started??
I'm so glad you've found something to work. My estrogen dominance diagnosis was after private blood tests. They showed my estrogen was normal, so not high, but my progesterone way low.
I looked at the Biovea website (is that the one you use) and it states this:
Pre Menopausal Women: Apply 1 pump daily, 14 days before expected menses, discontinue use 1-2 days before menses and start again 10-12 days after menses (counting the first day of menstruation as day 1).
Post Menopausal Women: Apply 1 pump daily for 21 consecutive days and discontinue use for 7-10 consecutive days.
So, I assume retention can be an issue. It also looks like my dosage is fairly standard. Obviously you're taking it every day and it's working, so don't stop 🤣
Looking forward to mine arriving and trying the cream instead. Bit disappointed the clinic haven't replied to my query. 🙄.
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I did, indeed, used to have initial 'dumping of excess oestrogen' back into circulation as it goes through the bowels, much worse nausea etc. My endocrinologist said that when that happens you can either take a few days break and titration up gradually or have a very high dose to override the oestrogen hit. I found the high dose was always too over stimulating when I had high oestrogen levels so would do the stopping and starting until I could tolerate. Now I have found the high dose (min 100mg) immediately calmed everything.
It's not so much about oestrogen or progesterone being bad, more about getting them to type right ratios so there is less volatility but anovulatory cycles etc. make this tricky in peri. Oestrogen does make you feel exhilarated and progesterone calms that down but, for me, one oestrogen has got into my system it causes all sorts of vestibular and neurological over-excitation, hence the motion sickness.
Yes I don't know the science about oral progesterone going down oestrogen or testosterone pathways but my endo mentioned and I have read a few times it's to do with the liver and poor digestion. It may be very rare though, but something to consider.
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As a very loose guide, I have found through the combined pills and HRT, that feeling anxious and overwhelmed is too high oestrogen/low progesterone and feeling the opposite, flat and depressed is too low oestrogen/high progesterone.
Other symptoms like motivation happen with both as you can either feel as if you can't be bothered or there is a sense of anxiety that freezes you into not acting. Hot flushes go away with either hormone.
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Yes Crispychick I’m on utrogestan.
I agree with that Dangermouse. Though for me I can be on oestrogen for approx 20 odd days (roughly about a cycle) and feel perfectly fine before I feel I need any prog. Then when I add in prog I find it calming for a couple of days, but very quickly feel low/depressed (within 5/6 days) on it, so just can’t tolerate much of it x
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I would guess that the progesterone is stirring the oestrogen up and may also be the oestrogen receptor issue, as the body is always trying to reach homeostasis, by reducing and reopening receptors. In the same way that high amounts of the opposing hormone that you need can dampen receptors to stop trying to surge.
As Mary G always says, consistency is the key, so stopping and starting can create a rollercoaster.
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Hi everyone,
i do agree that the amounts of hormones we're taking has a profound effect. This was my experience when i first start HRT (with oestrogen & progesterone). It was a few days after taking the first does that i had a weekend away with my sisters to the coast, one year anniversary after dad's death. It should have been a good weekend in that my sisters, although living in different parts of the UK, got together, we have a good relationship and wanted to celebrate dad. It was awful for me, like an alien had invaded my body that's the only way i can describe it. I felt physically tired, run down, depressed, couldn't sleep and everything annoyed me. I literally could not think straight
So i will say this from experience of HRT and the cream i've bought that the amount you take must make a big difference. I think i was slightly low on progesterone as it's helped incredibly with my symptoms. The HRT must have overloaded me and i felt far worse than before starting HRT.
I'll also add that i'm sure i had other symptoms of menopause in addition to migraines / insomnia but didnt realise it as now i feel so much better in my self, calmer, less stressed when work gets manic and like a normal person again. It's hard to describe but my god, i must have been a horrible person at times.
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It's good to hear from you dangermouse.
Sorry to hear about your migraine attacks but it sounds like they are oestrogen induced like my silent migraines. Do you have an aura? I don't understand the science behind hormone receptors in the body but it makes sense.
I started a thread in the new post menopause section about my inability to tolerate high doses of oestrogen now that I am older (60) and how it causes loose bowels and (to a lesser extent) migraines if I go too high so what you are saying makes complete sense.
I consulted a gastroenterologist who advised me to reduce my daily dose of oestrogen and progesterone and it worked immediately. He said he meets a lot of female patients who find that HRT causes gastrointestinal issues as they get older which ties in with your point about dumping excess hormones.
The difficulty most of us seem to have is finding that magical, ideal, stable dose that keeps symptoms away without side effects which is complicated further by our own hormone levels falling in the background. I have found that my oestrogen tolerance/migraine threshold has reduced with age which complicates matters further.
So now I just take a low dose of oestrogen, progesterone and testosterone to keep everything oiled. Having a bleed is a complete no-no for me. I just hope I don't have to reduce further.
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Thanks folks,
It's really helpful to hear all these perspectives. Sam - I totally relate to your experience of hrt. My trial on the estrogen part of femoston sent my symptoms off the scale. In fact, that's how I know these are estrogen symptoms rather than prog come down.
I'm still puzzled though. Dangermouse you mention a stop start approach to help adjust. But I stopped the prog 7 days ago and, although whilst taking it was no where near smooth, the days since have been horrific with my high estrogen symptoms. Suppose if it triggers estrogen, it triggers it for longer than the time taking it 🤷♀️, so this could be the 'dumping'. Hope it doesn't dump for long ;)
I totally agree, it's not about overall levels, but balance. I firmly believe that I'm probably affected by a small shift in this balance. The doctor did ask if I was especially sensitive to meds when prescribing, which I am, in general. Can't take codeine for example.
Mary - it sure is never ending. They should give us degrees in this subject!!
Do you take breaks at all Sam??? Or take it every single day?
Dangermouse - are you overall a lot better than you were in early peri, now your estrogen has dropped too??? I need hope. I'm at the 5 year mark and still just as bad 🤷♀️😭. Been off and on pills a lot of that time... Been awful really. I can recognise now that they dampen things down, but most made me feel pretty ill too. So this compounded prog is a new route for me.
I should add I've now completed 3 weeks of a testosterone/Dhea cream. Can't say I've noticed anything from that yet. I've to take that every day. 👍
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I hope you ladies get on okay with finding a balance of hormones.
It is such a bloody minefield for sure!
I was so determined to try the Well springs cream, but had reached crisis point by BH Monday, in that I needed oestrogen in my body, else I wasn't going to work for a very long time. I did not want to take time off sick, so slapped back on the patch. I am going to bleed in a couple of weeks, but am hoping the NHS will give me a scan appointment before long (and IF i DO have endo cancer, be it on their shoulders, as I have asked and asked for a whole month now!)
It is a very tough journey and I feel medics aren't necessarily best placed to help us. Sometimes, we need to take our hormonal health into our own hands, as some of you are and already have. I too will be doing the same, in that I am continually trying different regimes to find a sense of balance in the body and mind.
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Hi Crispy Chick,
i know you're supposed to take a break with progesterone cream, 5 - 7 days although i did read on Wellsprings that some ladies don't take a break in the first 3 months or some just take a break for around 3 days.
I have to confess that after 2 months i stopped taking it (intending to take the 1 wk break) but my goodness, i could tell the difference within a couple of days - it was my mood in the daytime that reared it's head first. I was snappy at my partner for small things ....leaving crumbs on the worktop after making a sandwich, hardly a crime & such like. Now, i remember being like that before i started the cream, i had little patience for anything and no enthusiasm for anything either. So anyway, to cut a long story short, i'm not taking a break at the moment and whether its right or wrong, i don't care as i'm on a roll and don't want to cause any waves with it.
By the way, on a different note, is there a way to get email notifications when you receive a reply on the forum? At the moment i have to remember to log on and see if there is any. Thank you!!!
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Hi Sam,
Just click 'notify' at the end of the box. Then you will receive notifications by email :)
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Thanks so much Nas, i'll do that now :) Much appreciated, Sam
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Interesting Sam, thank you.
I think I've got a long way to go... First things first - I'm feeling at my worst, so I need to establish if the prog helps. I need to find out if cream better route.
Then, if it helps, but I'm roller coastering, I guess I need to question breaks at that point.
I've researched a lot of reviews on prog creams... So hopefully most of them are genuine.
I've to call the pharmacy to discuss capsules versus cream, so I'll do that Mon. Also the clinic have passed my query to my dic, so hoping she will respond before I restart prog middle next week.
I totally agree - if you've found something that works, don't change it. I've been trying so long to find something that works.
Nas - I really hope you get that scan. It's an awful position to be in. Xx
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Good luck on Monday Crispy Chick. And as has been said before, it's all very experimental, even with the professionals at the start of this journey, but also even if we find something that works, it might not have the same benefits a year later - who knows.
Once i'd figured out that i was low in progesterone (just by looking at my main symptoms), i went down the OTC progesterone cream route. It was later on that after reading some of the cream reviews - different sites (Iherb, Biovea etc) a lot of people were mentioning Dr Lee's book "what your doctor won't tell you about menopause". It had a lot of interesting information & some of the symptoms i had, he rightly said were caused by low progesterone - i am testament to that. Although he does mention too that there will be some women that need oestrogen cream too but that with both creams, it's figuring a dose that works for you, this is key and from my experience, cream gives you an easy flexible way to do this yourself.
Funny isn't it - a year ago, i wouldn't have even known about progesterone cream or what progesterone or oestrogen actually were and what they did to the body. I didn't even know what the main ingredient was in my mini pill that i'd taken for years until menopausal symptoms started and i looked up what was in it. And then i learnt about vaginal atrophy on this site and thought what fresh hell is this - i had to look it up. It's a whole new world to deal with but as women, we will deal with it as we have to deal with everything else life throws at us. At least with age comes confidence and we won't just let things happen without asking questions and trying to find a solution that works for us personally. And a sense of humour doesn't go amiss if we can still find it ;-). Sam
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Mary G - Hey! I don't think I get auras. I get heavy floaters and blurred vision but that is constant throughout the migraine m, where I think auras are more dramatic and short lived.
CrispyChick - The stop start only suited me right at the beginning where I took a week's break after the first time. It wasn't intentional as I was giving up but then tried again and my body seemed to receive the progesterone better the 2nd try. Consistent, every day, or twice a day is best I have found for the cream.
I am lots better than early peri as my oestrogen is no longer surging to sky high limits so yes things do calm down! I have had a couple of bad (silent/nausea) migraines over the past 2 years but one may have been Covid (the bad one at the beginning).
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So glad things get better dangermouse.
This is just awful. Nausea, dizziness, full ears, narky, low mood (only at times) headachy. Every friggin day.
I've just looked back. I was like this in first part of cycle last month. Then the first few days of prog capsules went even worse, then seemed to balance out the other way, so by end of prog just narkiness and headaches. Then bang, 2 days into period back to this.
So it's either made me worse, or done nothing at all.
Dangermouse - was your MG trained doc happy for u to take prog every day???
How do you split a dose of cream?? My testosterone/Dhea comes as a full pump as a measure... 🤔
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Yes its completely safe to take progesterone every day (twice a day is the best as it starts to diminish after 12 hours). You can get the cream in smaller doses, like 25mg, 50mg is the usual and then you can take twice a day or more. I did get a 100mg made up for my last one but the pharmacy warned me it may be a bit chalky (which it was a little) which could affect absorption but was half the price as you just pay for the pack.
If I wanted to split what I had then I would use a contact lens case and put half of dose I had pumped out in there to keep fresh.
The breaks are more for when progesterone is used for fertility. Men use progesterone too, to help reduce xenoestrogens. I have also tried Ona's (which you can buy online without a prescription) and they also do all different strengths. I found the cream wore off more gently which is why I prefer to the lozenges.
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Oh and my symptoms have always been cyclical and much worse on Days 1-3 and 9-14, with bad nausea which really escalated at ovulation. Last couple of years I have only had a couple of bleeds but I log 28 days and still have clear dips at certain times. I think it takes a few years after last bleed before things become less volatile, even with very low oestrogen.
And if you have hot flushes then you have volatility. Until they stop you have not levelled out. Only possible to know without taking any HRT though!
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Thank you. You guys are an awesome help.
So, I'm applying my testosterone/Dhea cream on my lower inner arms. Can I apply the prog in same place??? My instruction will be to take at night only (the test/Dhea I take in the morn).
Where else can I put it??? I like the inner arm as I can apply hands free.
It's really useful to have all that info about 12 hours and the ups and downs of stop/starting.
So if I ask for 12.5mg tubes, to apply twice a day, I'll be paying double 😉. Contact lens case it is. 👍
For the first month, I'll follow the prescription. I've paid a lot of money for this service 🤣🤣.
I'm only to take 25mg a day. But given my reaction to the oral 25mg dose, I'm happy to start there. Any improvement on how I feel now will be welcome.
I don't expect an overnight miracle, but I didn't expect to be worse. 😬
I'm fairly sold on switching to the cream, despite not yet speaking to pharmacist or advice from prescribing doctor.
My symptoms are at their worse day 2 onwards...i think I've stopped ovulating recently, which is prolonging the symptoms. Sigh. Today as well as my horrific nausea (with gagging) and dizziness, I have extremely sore hair follicles. Not had that for a while, again an indication that I've sunk to my worse position 😭
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One last question - is there supposedly a difference between my expensive compounded cream and a good branded one I could buy online??? :-\
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Thanks so much Dangermouse for the information, so good to know i'll be fine taking it every day without a break, i was really dreading having to do this. I've just checked Ona's website, what a find! I'll place my next order from there, great it's from the UK and won't need to gauge how long delivery will be from the USA.
Crispychick, i alternate the cream on these areas: each inner thigh, each outer thigh, inside top of each arm and lower arm each side. I initially wrote down which day to do which area but now i just try to guess where i haven't put it for a few days :). I imagine it doesn't need to be an exact formula as long as it's not the same each day.
Also, i'd like to know if there is a difference between compounded and OTC creams. My only thought was that the compounded one has a level of progesterone personalised for you but i might be wrong.
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Yes the compounding pharmacy (via the doctor) can make it to your exact requirement and can also combine, so you can have Estradiol, progesterone and testosterone to the amounts that suit you in one cream, for example.
Ona's does have different strengths (variation on % of progesterone but in set amount) so that gives you the flexibility to also play around.
I suspect the compounded ingredients are more superior, like the versabase carrier in my one, but Ona's is very popular and there is a Facebook group for estrogen dominance you can join - it's more women taking for fertility though who post.
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Oh man... A fb group. Just looked... That might take me down a big dark hole ;D
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I need to remember this, so I'll write it here.
Just spoke to my compounding pharmacy - they were very helpful.
She said as a standard rule, transdermal prog gets more into your body as oral loses a lot through metabilism. However, oral is good for anxiety and sleep as it has a calming affect, but this is mostly at higher doses. Also the cream is not as good at higher doses and not available over 100mg, so oral might be used then. But as I'm on 25mg cream should be better.
Headache withdrawl from oral is certainly a possibility. If I experience that on the cream - split my dose am and pm.
I should not feel worse after starting, but it can take a good few cycles to start working. And having taken a low dose orally, I might not have had much benefit.
She said most doctors will start you slowly. Hence my prescription fir second half of cycle only. If, after my trials, I get symptoms first part of cycle they might put me on one pump that part of cycle then 2 pumps luteal phase, as example.
Slowly slowly to get it into my body and see how I react, then prob more blood tests to see my levels.
No immediate rush to rotate area of application, but stay tuned to how you feel. Some areas may absorb better than others.
Really helpful. She's getting my cream sent out today instead of tomorrow, so I can start on day 11 of this cycle, as prescribed. :)
Very helpful and kind and restored my faith in the system I have found myself in through the private clinic 😊🙏
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That sounds promising Crispy Chick. So, it potentially could have been that you weren't getting enough progesterone into your system with it only being 25mg & a tablet form.
It will be very interesting to see how the cream works for you, really hope this could be a breakthrough. As Dangermouse suggested too, a morning and night time split dose. I actually put the cream on just after i've cleaned my teeth before i get into bed, it's fantastic for my sleep.
Thank you for updating us and I'm keeping everything crossed for you!!!
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Awww folks. I'm no better :'(. Probably at my worst in terms, of symptoms. The pills, despite all their side affects, defo made my main symptoms ease.
Struggling every single day. Feel poisoned, woozy and sick. All day long.
That's 6 full days on the prog cream. Felt my head niggling the first few days, so I've split my dose. Seen fine taking it now. But absolutely no improvement whatsoever. And obviously I took the oral prog last month.
Thoughts???? Do I need a higher dose? Much higher maybe. Dangermouse you mentioned progesterone therapy. I've looked at that fb page - there they advocate huge doses of prog cream to help oppose the estrogen. But I'm under Marion gluck... I'd have thought they'd have years of experience in this 🤔
I've ordered DIM supplement. Anyone tried this???
Back at clinic in a few weeks.
I'll no doubt remain in hell until then. :'(
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Oh Crispy Chick, i've been wondering how things have been for you this last week or so. I so hoped it would help. In terms of amount to take, i tried 25mg in the morning & same in the evening for a few days, after reading that some women need much more than this. It made me feel terrible so went back to the 25mg per day. That's probably not much help to anyone though as we're all very different in our needs.
I tried DIM when i was first looking for alternatives to HRT and kept seeing this supplement being mentioned. I bought it around the time i first got the progesterone cream. It made me feel so sick - just 2 days after taking it so i stopped straight away. I was never quite sure what it was supposed to do but a lot of women were leaving very positive reviews of how it helped them.
By the way, interesting article in the Daily Fail today about bio-identical HRT https://www.dailymail.co.uk/health/article-10411819/Why-doctors-know-little-natural-HRT-stop-menopause-wrecking-life.html#comments
I hope someone here can help you Crispy Chick with other suggestions or different amounts of progesterone cream x.
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Hi CrispyChick, I was hoping you’d turned a corner and were feeling good, sorry to hear you’re not right yet. Changes seem to take so long to filter through to the body.
I considered DIM a few months ago but was concerned about articles describing it as a Testosterone/DHEA blocker. This can’t be right if Gluck clinic is prescribing it on top of a T & DHEA cream so I’ll do more research.
Thanks for posting and I hope you get to a normal, peaceful and no bloody crap place soon.
Victoria.x
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Thanks folks.
Sorry to confuse Victoria. The DIM is not from the MG clinic. It's my own desperation kicking in...prob not one of my better ideas, but I'm reading loads that it helps metabolise estrogen and reduce dominance.
In saying that, way back when all this started for me I went, at great cost, to a herbalist. She made concoctions for me... And I'm pretty sure DIM was in there... No affect. But no idea what dose she used etc... I quickly left that expensive regime.
Well, I'm at my worst, but I'm 99% sure it's all hormonal as the pill defo lowers some of this for me... But makes me feel dreadful in other ways 🤣
I know it's early days. I'm trying to bring my next clinic appointment forward. I feel I shouldn't just up my dose without discussion. They treat estrogen dom... So they must know what they're doing 🤔 I hope. X
How are you guys???
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Oh that's so spooky CrispyChick! I just saw your first post of today and thought whilst I was reading if I should mention the DIM I am taking and then I saw you mention it further down in your post!!!
I tried DIM in 2017 (I know that as I am now taking the one I bought then and found the date on my Amazon account). I had a very strong reaction to it back then, as I did with most things, with palpitations etc and stopped immediately. I clearly held onto the pack to potentially try when hormones were more settled.
Anyway, I saw it mentioned on a Facebook group (probably the oestrogen dominance one) where a woman was taking it alongside transdermal HRT and said that she cannot take Estradiol without taking DIM as she is very sensitive to oestrogen. Apparently the DIM does not reduce oestrogen, it just allows the liver to metabolise it properly. This also means it stops testosterone from converting to oestrogen so it also boosts testosterone. It is also recommended for men to reduce enlarged prostate, which is caused by their testosterone converting to oestrogen.
I started it last Sunday (10 days ago) and I had an excruciating headache that came and went for the first few days. I then did more research and saw that this was short term and not to stop as it was a good sign, even though many give up thinking its doing something harmful. Since then I have felt very good and much more balanced with almost zero of the low-ebb constant anxious feeling - I am not taking anything else but it can, as above, help to take alongside HRT.
The testosterone bit was interesting as I have felt nervous driving for the past few years and even when on the progesterone cream, when the most relaxed, this only reduced a little. (I do have to drive late at night now on M25 as my parents moved an hour away and I try to visit weekly after work). Last week I was whizzing along the fast lane as I did when younger and didn't feel nervous at all and I wonder if this is the testosterone! I have tried the cream but it used to make me feel as if I had PMT - potentially it was converting to more oestrogen?
There is a lot to read up on DIM but it is basically from cruciferous vegetables and converts the more harmful estrogen into the healthier form.
I was going to wait before posting about it anywhere as very early days but had to reply!
This link is from an excerpt of a book and gives more info.
https://fortwaynephysicalmedicine.com/blog/the-benefits-of-dim
In terms of the high dose progesterone cream, I found 100mg twice a day was enough to crowd out the excess oestrogen but a few years ago I didn't get the same relief so potentially did need a very high dose. Jan Toledano from LHC did used to work with MG and she always said try to get as much as possible in you. I don't think I ever took it high enough as my oestrogen spikes were silly high.
Just to add that I read many accounts of DIM reducing breast lumps and it can be protective against many cancers as stated in this research report.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4964527/
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;) thank you so much Dangernouse.
That is so helpful. I'll read those articles shortly. Yes, I read DIM can cause flush out symptoms when starting. I think I'll give it a go. I know you shouldn't try too many things at once, but that's me nearly finished 2 cycles with progesterone and I feel nadda.
Today the dizziness and nausea have vanished. They've pained me every day of this cycle bar 2 /3 days immediately after ovulation. Now I'm mega grumpy and edgy. This ties in with a normal estrogen cycle. High estrogen in first part of cycle then a second surge after ovulation.
Plus, pms symptoms are again heralded as low prog.
So. I'm still waiting to hear if I can bring my appointment forward.
In the meantime I will start DIM. It arrives tomoz. 150mg. British made with money back guarantee. So hopefully a decent one.
I am tempted to:
1) double my prog dose to 2 x 25mg a day (I suspect this is what MG will do next anyway?!)
2) continue taking 25mg during days 1-10 of cycle (I'm only to take it from day 11 at moment).
Or both.
I'm slightly worried they'll get arsey with me if I go off piste 🤣🤣🤣🙈
I have looked at Jan at the London hormone clinic. They insist on London blood tests... I'm in Scotland. I just cant be bothered 🤣 with MG I can use other firms or use their bloods and have them drawn at superdrug.
I'm really pleased to hear DIM appears to be helping you. So, you're now at the later years of peri, is that right??? I really feel I am suffering in the same way you did. It's just crazy. :o
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Hi Dangermouse, thank you for posting this information, it is so helpful and particularly about the DIM supplement. It sounds like i had the same experience as you and hence stopped it straight away. I haven't thrown it away and i'm tempted to try it again and persevere, see how i get on. I might leave it a month or so as i'm in a good place with the progesterone cream at the moment so would like to keep the continuity for a while.
Crispy Chick, i'm no expert here but i would be tempted to up the progesterone cream for a few days and see how you get on. By the sound of things, could it really make things any worse at this stage?
Just as a side note my sister who started the progesterone cream 3-4 weeks ago is getting on marvellously with it. No more strong headaches on a daily basis - had one in the last week and no night sweats. We'll have to wait to see if it helps her anxiety / tiredness as it's still early days.
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Out of curiosity as I had never heard of DIM before - couldn't we just get the same benefits from eating cruciferous vegetables every day? We know they are really good for you in so many ways that surely that would confer a better benefit as we are consuming the whole thing and not just one element?
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Gnatty, from my understanding the part of the veg that acts on your hormones is just concentrated into the supplement. Yes, you could eat a lot of the veg.... But I think it's a lot!!!
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Broccoli soup here we come!!
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Thanks sam
That's excellent about your sister. Long may it continue.
I think I'm just soo bad and been like this for 4 years, so I need a higher dose.
Yes, I'm seriously thinking about upping to 2 x 25. I will stop after my 10 days. But if I'm really bad again at start of next cycle, I'll try the 25mg every day until day 12, then 50mg day 11 onwards. That's what the pharmacist said can be done.
Just a prog question in general. So, the withdrawal of prog gives me a bleed, normally. On the mini pill I'd have no bleed. On the tablets last month I had a bleed 3 days after stopping. If you don't stop prog cream, would you not bleed?? Or perhaps that would only be at very high doses.
I suppose when I stop in 3 days time, will be interesting. If I've absorbed prog from the cream, I'd expect the same pattern as the oral prog... Will be interesting trial.
I'll start the dim next cycle. Among with increased dose. I think. You're right Sam, not sure I could be any worse... Oh, unless I get migraines on top 😭
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Update.
Called to bring forward my clinic appointment and got a cancellation for this aft. :-*
So, I now understand. My estrogen is not high. Neither is it low. It is a good level for my age.
My progesterone is very low.
I have also just calculated my ratio. This is apparently used to test for hormonal dominance when the hormones themselves are in normal range. My ratio is 12. It should be between 100 and 500!!!! Low means, estrogen dominance. Not to be confused with high estrogen.
OK. So plan of action.
I'm to double my testosterone/dhea dose.
Next month I've to take 50mg prog cream, split into 2 x 25mg. Take all month. Break on day 21. When period starts, restart.
Month 2 I've to double again to 100mg prog cream split 2 x 50mg. Take all month again etc...
She wants to build me up to ensure I can tolerate it. Want to avoid headaches etc. I can manage it up and down myself if I do get any issues. E. G take 12.5 am and 25 pm. Build up slowly.
Then bloods to check how I'm absorbing the cream. If it all works, she'll swap me off cream to an easier route of administration.
She said I can take DIM as it has lots of cancer limiting properties etc, but as I'm not high in estrogen, I don't need it for that 🤔. I might put that on hold....
Thoughts ladies????
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Crispy, thanks for the update. I'm pleased you managed to get a cancellation at the clinic and what they have advised does make sense.
Out of interest, what are your oestrogen levels? You said they are ideal so I was wondering what they are.
I hope that splitting the progesterone dose helps.
I have to confess I had never heard of DIM but it sounds very interesting! It would be good to hear more about it.
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Thanks Mary
I'm hopeful. Been a bit better today. I actually felt a clunk as my estrogen switched off for the month. Funny how now my best time of the month is right before a period, despite the low progesterone.
My estradiol was:
335 pmol or translates to 91 pg/ml.
Does that mean anything to you??? She said normal for my age. I'm 45.
I don't feel the 25mg cream has done anything this month. In yet, 25mg oral I was defo feeling last month.
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That is a good level of oestrogen Crispy and it is the level most menopause specialists suggest women aim for post menopause. I would say it's a good level for your age too - mine was stuck at 50 pg/mL (183 pmol) when I was 45, I was constantly sweating and had developed silent migraines.
If you were fighting off menopause symptoms due to oestrogen deficiency you would probably need to go quite a bit higher than that. On the other hand, this might be your ideal oestrogen level and you can maintain that level with HRT when your own oestrogen levels drop further (post menopause women have levels of about 30 pg/mL/107 pmol). This is something you will need to discuss with the doctor later on.
Glad you are feeling better! Please keep us updated.
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Yes, I agree, that all sounds positive and makes sense not to add in the DIM yet when you are testing the change in dose.
It's interesting as my oestrogen level is now below 50 but I don't have any oestrogen deficiency symptoms. I guess we are all different in what our bodies need.
Just to add, I get my own bloods taken from my GP (they respect the views of London Hormone Clinic as BMS docs so are happy to pay for them - I know that's not the case for a lot of GPs though) and LHC are happy to use them. Saying that, I think MG and LHC are similar as one was born from the other!
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Thanks ladies.
Danger ouse - Interesting indeed about your estrogen level. :o I can't imagine wanting to keep mine at this level when I'm so symptomatic with low prog. But who knows what will happen.
So, if your estrogen is at 50 now, what do you do with your progesterone? And we assume that's why you feel a lot better than you did years ago?
Thanks for sharing about your Gp bloods. I did ask mine before I started down this route, she was vague. I'll see how I feel nearer the time. Not sure I can even be bothered to phone up and ask. You just get to the point where you give up with the gp system for this. >:(
Plus, I'm in Scotland and up here they don't even give you utrogestan without a fight!
That's me stopped the cream for the month. Be interesting. On the oral prog last month, I got a period 3 days after stopping (as I would if I'd stopped a contraceptive pill). If same thing happens, I think it's a good indication I've been absorbing the cream. For this reason I didn't up my dose the last 2 days. Thought it'd be a good test on absorption. 👍
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Dangermouse, I'm also intrigued by your oestrogen levels. I'm assuming that is pmol in which case, it's very low.
From reading your posts, it seems that you react very badly to oestrogen (gastric migraines etc) and therefore this low level is really good for you.
Crispy, if you are not suffering with menopause symptoms and also need low levels of oestrogen, the good news is your levels will drop further as you go further into menopause.
This is interesting!
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Hi Crispychick - I would be worried about taking unregulated progesterone cream to protect the endometrium when you are having good estradiol levels of 335 pmol/l for example. This is the problem with regimes such as this and why the BMS does not endorse them. It is the key issue of endometrial protection that requires the correct dose of a regulated product that has gone through trials to determine how well it works. If it's low enough so you don't get side effects then it's probably too low to protect the womb. In fact the BMS reiterated this view in their recent paper of progestogens: https://thebms.org.uk/wp-content/uploads/2021/10/14-BMS-TfC-Progestogens-and-endometrial-protection-01H.pdf
I haven't read most of the recent posts on this thread but just this last page...
I don't think any one needs a low level of oestrogen as in post-menopause very low - because the long term consequences of this - over 30 or 40 years, can be detrimental in terms of heart, bones not to mention vaginal atrophy etc....
Wishing you all well :)
Hurdity x
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Hurdity
I'm not taking progesterone cream to protect my endometrium. I'm not supplementing with estrogen. I'm in peri with good estrogen levels. I have extremely low progesterone.
I have been hugely symptomatic for 4 years. The nhs suggest I supplement with. HRT and estrogen!!! This makes me worse. I don't need extra estrogen.
Whilst I totally agree noone should supplement with unlicensed hormones, if an alternative exists. This is not the case for myself. The latter pages of this 'alternative' thread are all about us suffering in the early stages of peri when progesterone has plummeted.
I am so very grateful to the ladies who have been helping me through this, particularly in this 'alternative' part of the forum. I would be lost without it.
Whether estrogen dominance is common or not, it is very real for me and has stolen my quality of life. Licenced or unlicensed, I'm simply trying to get my life back.
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Crispy, don't worry about womb lining build up, the clinic will ask you to have a transvaginal scan at some point to check that your womb lining is thin. You can easily arrange this yourself at a local clinic.
These clinics may prescribe unlicensed products but they will not prescribe unless patients are thoroughly checked. A uterine scan is the only way to check whether or not you are taking enough progesterone.
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My hormone readings on my Patient Access app are:
Aug 2021
Oestrogen 44 pmol/L
Testosterone 0.6 nmol/L
Prog 0.3 nmol/L
LH 62.0 U/L
FSH 98.0
Jan 2020
O 44
P 2.0
T 0.8
LH 55.7
FSH 89.8
June 2018
P 90.1 (when on progesterone cream)
LH 3.0
FSH 2.7
Nov 2016
O 347.0 (when I was at my worst)
P 29.1
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Wow. That is so interesting.
So your estrogen back at your worst Dangermouse is almost exactly as mine reads now. However, you had prog of 29.1, mine is 3.5 >:(. No wonder I'm feeling so dreadful all the time.
Also, really interesting to see your prog went up after supplementing with cream (can you recall what dose you were at at that point?)
I find it incredibly reassuring that you have no low estrogen symptoms. Long may it continue for you. And I hope my sensitivity to estrogen results in me being in the same boat when mine drops 😁.
It's clear there are not many of us in this position, on this forum. However, that fb group you mentioned is full of people like this. I do take a lot of it with a pinch of salt as its an American fb page after all, but it does help a little.
Mary - thanks so much for the reassurance. I have already had a scan. The clinic would not treat me with any hormones without one. I found it incredibly reassuring. And not as expensive as some other parts of the treatment, so well worthwhile. I also had to have a mammogram and I'm not in the age bracket for that on the NHS yet. So I agree, it's all very carefully monitored.
Actually, when I went for my mamo at the private hosp, the radiologist commented on how many women in their 40s are coming for scans so they can attend hormone clinics... :(
The NHS has some catching up to do. I may be wrong, but my hunch is we're the generation that took the pill non stop... I think it may have unbalanced ultimately. 🤷♀️
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Hello ladies.
I am well and truly post meno but still having issues with mood changes. Every HRT that I have been on has involved increasing my Oestrogen and/or limiting my progesterone. Recently my meno doctor told me that my Oestrogen levels were good so I should be feeling more balanced than I am!
Is it possible that despite not having a period for twelve years my Oestrogen is sufficient and my progesterone is the problem? This seems unlikely but years ago I read an interview with Jeanette Winterson, the author and she was told that low progesterone levels were causing her meno symptoms.
I realise that Oestrogen is regarded as the nurturing, feel good hormone but if your levels are sufficient and you don't feel good then maybe progesterone needs to be looked at separately?
Wishing you all well ladies.
K.
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I would have been on about 50mg per day of the cream when the levels went to the 90s. The absorption is very good.
Yes it's very blinkered that mainstream HRT providers ignore progesterone beyond womb protection.
The doctors at the LHC did not think my oestrogen level was overly low against my other readings and said that if I had different symptoms over the course of a month then there was likely to be ongoing volatility and that adding in oestrogen would only make it worse. As my progesterone was now minuscule, they preferred me to only have that and it did boost my energy and relieve the over stimulation. I later tried some oestrogen (LHC won't prescribe it without frequent scans also) and they were right as I felt not much for a couple of days and then suddenly had the migraine/nausea!
Yes, I've also wondered if taking the pill made me worse. I was on it for about 24 years. Funnily enough I could only take oestrogen dominant pills as the progesterone dominant ones made me feel depressed. Although they were progestins (artificial prog), so it may have been more because of that.
I think as the NHS cannot pay for frequent scans they, instead, prescribe high dose progesterone to protect the endometrium. With the BHRT hormone clinics, the scans are part of the treatment so that they can tailor the dose to your needs, without overdosing you. It's understandable though that the NHS cannot afford to offer this.
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Taking the pill didn’t make me worse because I couldn’t tolerate any of them so never took it. In fact I think there’s a direct correlation between the inability to tolerate the contraceptive pill and the same with synthetic hrt hormones for what it’s worth x
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Thanks dangermouse, those readings are interesting. Your oestrogen is now 11 pg/mL which is unlikely to get any lower really.
Sorry if this sounds too dramatic but it's almost as though oestrogen is like poison for you.
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Haha! Yes I suspect it's to do with my liver and how I metabolise it. Who knows, having the DIM now may make me able to tolerate taking it, if I wanted to take it in the future.
It could also be that there is still volatility going on and that other parts of the day/week/month it leaps higher than those readings. This is what LHC thought and said it may only help me when it became stable at that level. They said unless we have consistent symptoms that barely change, that there is still volatility.
Perhaps this even happens post meno for about 10 years, like peri before and after the crazy bit in the middle!
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Thanks dangermouse, those readings are interesting. Your oestrogen is now 11 pg/mL which is unlikely to get any lower really.
Sorry if this sounds too dramatic but it's almost as though oestrogen is like poison for you.
We are women and live our reproductive lives with sufficient oestrogen levels to function as women. Extremely low leves of oestrogen as can occur after menopause, are not ideal and can cause well documented long term health problems if women live eg for 45 years after menopause in such a hypo-oestrogenic state.
Understood that some women are affected both by the dramatic hormonal fluctuations of puberty and peri-menopause, and that some preparations of oestrogen given exogenously (ie taken into the body from outside) can make some women feel much worse - but oestrogen per se is what makes us who we are - and there is no such thing as intrinsic oestrogen intolerance (other than sensitivity to the fluctuations etc I just mentioned), as there is with progesterone intolerance.
According to the Stages of Reproductive Ageing paper there can still be residual ovarian activity I think for 6 or 7 years as far as I recall but mostly the dramatic fall in levels occurs during the first 2-3 years following the last ovulation and then oestrogen hovers around at its final lower ( hopefully not too low) level but some of the dramatic symptoms will have lessened. Flushes and sweats unfortunately can continue many years after the menopause but not as I understand due to ongoing hormonal fluctuations. Not sure the causes are known?
What is more worrying are the invisible long-term symptoms mentioned above ie osteoporosis, cardio-vascular problems, vaginal atrophy, bladder problems etc
Hurdity x
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dangermouse, I've been reading up on DIM and it sounds very interesting but like you, I suffer with migraines (far fewer now luckily) and I'm rather hesitant to take anything that could make them worse.
I have read a few horror stories from migraine sufferers but obviously it's just hearsay.
It would be good to have a new thread on DIM and to hear some detailed firsthand experiences.
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Yes who knows what causes flushes to continue but volatility, even if subtle, would be a rational view.
Mary G - As I mentioned, I had a horrible initial reaction 5 years ago from it but it only lasted about half hour and then subsided. I really wish I had pushed through then with it as it may have made those 5 years a lot more tolerable! I have found that anything that supports the liver (phase 1, eg DIM and phase 2, eg milk thistle or Calcium D Glucarate) puts the hormones, chemicals it's processing, more quickly back into the bowel to excrete, which causes symptoms to flare up with obvious relief after the bowel movement. It's not the same as the liver dumping them as unprocessed (which would be dangerous) but suddenly being able to metabolise quickly what is in there, which also relieves back up and constipation.
So, maybe better out than in, but it doesn't go quietly! This time it was much less and that was only occasional strong headaches building up in the afternoon for 3 days - and I never get headaches (I get silent migraine of intense nausea and tenderness rather than pain).
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Mary G, is it okay to ask you if you would privately share the contact details of your private specialist? I have tried to DM you but am not allowed (perhaps as I haven't posted very much?)
I've been diagnosed with severe progesterone intolerance and would like to try all avenues before having to take the hysterectomy option my GP proposed.
Thank you.
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Logie, sorry but I've only just been alerted to your post by one of the many former members of MM that I am in touch with!
I'm so sorry to hear about your problems with progesterone but you are not alone. You probably need a lower, more frequent dose of progesterone - 200mg is a massive hit in one go for a lot of women.
I can't give you the name of my clinic because I got into trouble for naming doctors on here in the past but I can (hopefully) suggest you Google the Specialist Pharmacy, give them a ring tomorrow and get a list of all the doctors who prescribe compounded hormones.
You should be able to find a doctor in your area.
I hope than helps.
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Hi folks.
Me again!!! Still struggling. Massively.
So, I took my 25mg prog cream days 12 to 21 last month. Stopped. Had a period after about 5 days. Didn't really feel the cream had done anything.
So started day 1 with a dose of 25mg and 12.5mg. Then on day 3 took 50mg split into 2 doses. Then on day 5 (yesterday) I was absolutely horrific. At my worst with motion sickness. It's absolutely awful. I took an extra 25mg last night.
So, today, still bad. I plan to get straight up to my 100mg, which my doc said I should get to next month.
No idea what is going on. Is this just my normal and the cream has no affect... Yet. Is it increasing my estrogen to start with?
I joined that fb page, and they talk non stop about 'estrogen kickback' and upping your dose to compensate.
Urgh. I just want to get some respite.
Dangermouse - I know you said you absorbed well at 50mg. So that gives me hope. You also said you felt awful the first month... Can you remember if it just calmed or if you upped your dose??? What dose did you eventually go up to?
My plan is to get to 100mg today... Then keep going 😬.
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Hi Mary G
Thank you so much for your reply and advice, I really appreciate it x
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So I used to struggle with dose changes when my own oestrogen was very high and found stability was key. Now it's lower I went up to 100mg with no issue (50mg didn't feel enough).
As a guess, it could be the dormant oestrogen receptors opening back up again causing your symptoms, as there is now sufficient progesterone to return to normal oestrogen supplies (as in even more!). Or the oestrogen could be simply surging more and pushing the progesterone down so that you keep getting progesterone withdrawal waves.
When volatility is high it's very hard to control but I have also seen on those groups that some women go up to 400mg a day and that finally blankets the oestrogen flames!
I would now try adding in the DIM as it assists moving the oestrogen out of your digestive system so it doesn't keep recirculating. I know this used to happen to me as with my worse nausea migraines, after so many days of constant nausea (minus a few hours when I could sleep) I would then have a bowel movement and it was like a switch being turned off and all the surging would just stop, as if I had just got off the boat!
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Thank you so much for replying dangermouse - it means a lot.
Are you on 100mg prog now?
So I got to 100mg yesterday. I took 2 x 25mg and 1 x 50mg...I went very woozy for 2 hours after the 50. So I'm on 4 x 25mg today and from now on. I'm not going to move from the 100mg (unless things become unbearable) I'm feeling pretty bad. But then I was feeling just as bad before I started the prog. :( but only in first half of cycle - which I'm in just now.
DIM. I'm a bit scared. It is sitting on the shelf. Read lots of stories of detox symptoms etc. Plus, I don't think I actually want to lower my estrogen... In saying that my MG doc said OK to take it. She did say I didn't need to lower though, but that it's good for metabolising to prevent bad estrogens. Can't say I've noticed symptoms abating with my bowels, but then I've never thought to look out for that.
Are you still finding it working well??? And your estrogen is so low, so that's interesting. What dose are you on?
I've looked at milk thistle - undecided on that too. Some say good, some say it mimics estrogen. 🙃. It's all so confusing!
Calcium d glucarate alongside DIM. I might go for that. :o
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Further update. I feel very sedated today. Felt dreadful until I took my morning 25mg...which has helped, so must mean I'm absorbing. But I'm very sedated.
Given myself a talking to. I've been led to believe more is important on a fb page... I've just left the page - it's not good for me.
Also not helped by the fact creams are vilified here, so I feel I can take any dose whatsoever and I'm unlikely to absorb it!!!
So ill refocus on what my MG expert is telling me. Think I'll get back down to 50mg for this month - as I was told to do. >:( it's desperation. It kicks in.
So I need to reach a consistent dose. A d see where it takes me. Clearly I'm not going to improve overnight.
I probably will add on calcium d glucarate first. Then dim later if need be.
Mary - you take 50mg? Correct? And your bloods show you absorb fine??? Think I just need it confirming.
Feeling stupid. But I'm so fed up of feeling ill. 😕
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Hey, no I stopped the progesterone 2 months ago as I was getting really bloated (it is a diuretic) and constipated even more than usual (now that my oestrogen is much lower). I then tried to add some Lenzetto oestrogen for balance but that made me really sick so I stopped to let the progesterone levels come down and then I started DIM, so have not yet needed to return to the progesterone.
What I have learnt is that DIM helps metabolise the oestrogen in the Phase 1 of liver function. Then if you do too much of that, Phase 2 gets blocked so things like Cal-DG and milk thistle support this phase and produce lots of bile to help the process along the intestines. I found DIM gave me an occasional quote strong headache for 3 days but felt good otherwise and the headache didn't return. Cal-DG made me quite lethargic and had intense salt cravings (milk thistle also gives me that!), so perhaps connected to the extra bile production. I'm finding powdered Vit C less intense but helping to move those pathways along more gradually.
I also read that DIM does not lower oestrogen, just stops it recirculating (which causes the nausea etc) and it also stops testosterone from converting to oestrogen, thus boosting your testosterone. Whereas, Cal-DG lowers both oestrogen and testosterone, presumably it drags it out through the bile. Occasional use makes me feel better the next day though.
I skipped DIM one night this week (to see if it builds up) but I woke at 4am feeling my old physical anxiety, not strong but enough to wake me up. I then took the DIM and it made me fall asleep and woke up without the anxiety again!
Hope some of that helps!
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Thanks Dangermouse.
I just feel such a mess. That me back to 50mg of cream, split between 2 doses. I'll stay there for the month.
I've read a lot and it does seem the most recommended dose (well, 40mg) on any decent over the counter brands. I'm prettyrcsure it's what Mary takes successfully too.
I took a CG last night. Decided I'll take a few of those first - see if I can excrete anything extra before considering the dim
Thanks for your replies - I really appreciate them at my times of desperation. So, you're on nothing but dim now and in late stage of peri??? That be excellent if that's all you need. :D
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What I have learnt is that DIM helps metabolise the oestrogen in the Phase 1 of liver function. Then if you do too much of that, Phase 2 gets blocked so things like Cal-DG and milk thistle support this phase and produce lots of bile to help the process along the intestines. I found DIM gave me an occasional quote strong headache for 3 days but felt good otherwise and the headache didn't return. Cal-DG made me quite lethargic and had intense salt cravings (milk thistle also gives me that!), so perhaps connected to the extra bile production. I'm finding powdered Vit C less intense but helping to move those pathways along more gradually.
I also read that DIM does not lower oestrogen, just stops it recirculating (which causes the nausea etc) and it also stops testosterone from converting to oestrogen, thus boosting your testosterone. Whereas, Cal-DG lowers both oestrogen and testosterone, presumably it drags it out through the bile. Occasional use makes me feel better the next day though.
Hi dangermouse - do you have any academic references to studies where any of this is shown? Especially with regard to steroid hormone metabolism and the interplay between oestrogen and testosterone? I would be grateful for any links - maybe a separate thread?
Hurdity x
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Further update. I feel very sedated today. Felt dreadful until I took my morning 25mg...which has helped, so must mean I'm absorbing. But I'm very sedated.
Given myself a talking to. I've been led to believe more is important on a fb page... I've just left the page - it's not good for me.
Also not helped by the fact creams are vilified here, so I feel I can take any dose whatsoever and I'm unlikely to absorb it!!!
So ill refocus on what my MG expert is telling me. Think I'll get back down to 50mg for this month - as I was told to do. >:( it's desperation. It kicks in.
So I need to reach a consistent dose. A d see where it takes me. Clearly I'm not going to improve overnight.
I probably will add on calcium d glucarate first. Then dim later if need be.
Mary - you take 50mg? Correct? And your bloods show you absorb fine??? Think I just need it confirming.
Feeling stupid. But I'm so fed up of feeling ill. 😕
Hi Crispychick Sorry to hear you are still feeling rough.
Just to take up the point about "the fact creams are vilified here," - they're no exactly vilified as such - but just they are not recommended to be used for endometrial protection because there is no standard regulated product so dosage could be inconsistent, and with womb protection it is important to know you are getting the correct dose - hance the BMS not endorsing clinics where there are prescribed.
The other reason is that for years progesterone cream was touted by the companies that produce it as the answer to all menopause problems, and as far as I understand it was originally developed as a commercial enterprise, and led to the oestrogen dominance idea - in terms of symptoms as opposed to bleeding. As far as I know there haven't been studies that show that progesterone cream alone would be sufficient to alleviate menopausal symptoms, nor that there is an ideal ratio to aim for, and of course it does not replace oestrogen in women that need it.
I hope you feel better soon and manage to sort out a regime that works for you.
Hurdity x
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Thanks Hurdity
Yes, I totally get all that about the creams when using estrogen.
As you've seen, I'm not at that stage and instead looking for answers for my specific case. My blood tests show my estrogen to be good and my progesterone very low. Common in peri I believe, but perhaps more common to show up as heavy bleeds.
Instead I suffer from dizziness and nausea, brain fog and other symptoms of general malice. Not pleasant. Never ending.
Extra estrogen when tried via HRT was like a poison to me. I am now desperate. I am now trialing the progesterone cream. The NHS have no other options for me.
If you have any other ideas, I'd appreciate them? :)
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Hurdity, to quote you:
As far as I know there haven't been studies that show that progesterone cream alone would be sufficient to alleviate menopausal symptoms
Perhaps not, but for my sister and I, progesterone cream has been a godsend and alleviated our main symptoms as i'm sure it has been for many ladies. We'll continue to take it as long as it makes us feel okay. As i've said before, it may not be the answer in the future but we'll cross that bridge when we get to it.
HRT was like poison for me, for the short time i was taking patches/tablets, i felt horrendous and i wasn't going to wait 3 months to see if that settled down. I sometimes wonder how far behind the UK is lagging when it comes to alternative treatments and the support we women need when looking at alternatives.
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Crispy, I'm really sorry to hear that you are feeling rough but I think splitting the dose is the right approach. I used to take 50mg progesterone every day but I've reduced it slightly on the advice of a gastroenterologist. He recommended I reduce both oestrogen and progesterone dose because it was evacuating via the bowels - this is something that dangermouse knows a great deal about and reading posts on here would suggest it's a common problem. It's almost like an inability to process hormones properly.
For "oestrogen dominance" read "volatile, spiking oestrogen and low progesterone". It took me years to work out that this was the cause of my silent migraines.
Keep going Crispy and tweak the dose again if necessary. It might be worth emailing the doctor for some input too.
Sam66, if you have found a regime that works for you, don't even think about changing it.
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Hi all,
Long time no post as I’ve been trying to get into a good rhythm with progesterone lozenges & oestrogel. I basically can’t seem to tolerate the lozenges every day (they put me in a coma after taking it a few days in a row). Ive tried taking it every other day & this works for a while but then it all,gets too much & I crash like ive done now. I’m taking 2 pumps of oestrogel on the mornings when I haven’t had progesterone the night before & then 3 pumps when I’ve taken progesterone the night before. I’m wondering if you can take lozenges as a sequi regime I.e. 7-12 days lozenges and then stop until the next month. I didn’t take the progesterone lozenge last night and thinking about not taking it again for a while to see if it’s the cause of my symptoms.
I’m wondering if sequi might suit me better so does anyone know if you can use lozenges in this way.
I’m feeling exhausted, depressed, headaches and fed up of feeling ill & struggling to get much quaility of life.
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Lots of replies ladies ;)
I'm feeling brighter now I'm back down to my 50mg. Still stupidly woozy with nausea and an odd head feeling, but yesterday after 2 full days on 100mg prog cream - I was experiencing symptoms I've never felt before.
Proof of absorption. I think so. ;)
Blue kingfisher - I can't help you, but I'm assuming if you are on lozenges you use a compounding pharmacy and prescriber??? You also confirm absorption ;). I'm sure one of the more experienced ladies can help.
I think you're absolutely right Sam. These bhrt clinics are fully booked. Some have closed to new customers, others you need to book up to 2 months in advance. Where are all the ladies using this bhrt...? Not in this forum it would seem.🤔.
There really needs to be a place on this forum for us to opely discuss these 'alternatives'. We are all woman trying to find a route through this stage of our lives. I personally find the advice I have received from Mary, Dangermouse and Sam invaluable.
Whether there is science behind it or not, we should be able to discuss. From what I've read there are studies demonstrating absorption and others not 🤷♀️, but there is nothing recent. I'm not normally a synic, but I'm now left wondering if the 'scientific' answer of the pill, with it's artificial progestin, hasn't in some way left me in this unbalanced state. We're the generation that started popping the pill in our late teens and continued all through our lives - is there science to show how it may/may not harm your long term hormonal balance????
That said, if someone can point me to a conventional treatment, under the NHS, I'll greatfully take it. All ideas welcome 😁
We're all just striving for the same thing - quality of life.
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The pill didn’t unbalance me cos I never took it. Neither did I have any issues until peri meno when falling levels of hormones caused symptoms. I think those of us who are struggling haven’t got the balance of hormones right for whatever reason (for me it’s inability to tolerate the progesterones currently available).
I don’t know the answer to your question Blue Kingfisher but maybe Mary G will have some insight.
We are discussing alternatives right here on this post, and hopefully between us we’ll be able to get somewhere x
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Blue Kingfisher, I'm really sorry to hear that, it must be so disappointing.
First of all, yes, you can use the lozenges cyclically but you would need to take about 50mg every day for a couple of weeks and I would suggest you do this on a longish cycle.
Before trying that, I would suggest you continue with the Oestrogel and stop the progesterone for a few weeks to see if you feel any better. If you feel a massive improvement, then the progesterone must be the culprit but if not, it could be that Oestrogel doesn't agree with you or the dose needs tweaking.
I hope that helps.
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Thanks Mary G, I didn’t realise the 10mg of progesterone lozenge was a low dose. I also wrote on my last message that I didn’t take a lozenge last night but I did - this is just me getting confused because I feel so bad.
I feel worse after applying the oestrogel & very agitated….this is strange as I thought this would make me feel better if the progesterone was too much. This now makes me think perhaps I’m better off at this stage not assuming pg is the villain after all….? I will try sticking with the lozenges again tonight & see if symptoms improve over the next few days.
I’ll soon know if this is the right or wrong thing to do & then it might be if I start to feel the progesterone coma that I need to ease off. I’m generally woken up every morning around 5am with a sudden urge to evacuate my bowels……does anyone else get this? I’m wondering if this is my body excreting excess oestrogen now? I do notice that this subsides when I’m on progesterone but then I tend to get constipation.
I’ll see how it goes, I don’t think I can feel much worse so don’t feel I have a lot to lose. If this doesn’t work then I’ll look at trying the sequi option with a higher pg dose, very helpful to know this is an option! What is a longish cycle…..? Taking pg on days 1-7 of each month?
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What I have learnt is that DIM helps metabolise the oestrogen in the Phase 1 of liver function. Then if you do too much of that, Phase 2 gets blocked so things like Cal-DG and milk thistle support this phase and produce lots of bile to help the process along the intestines. I found DIM gave me an occasional quote strong headache for 3 days but felt good otherwise and the headache didn't return. Cal-DG made me quite lethargic and had intense salt cravings (milk thistle also gives me that!), so perhaps connected to the extra bile production. I'm finding powdered Vit C less intense but helping to move those pathways along more gradually.
I also read that DIM does not lower oestrogen, just stops it recirculating (which causes the nausea etc) and it also stops testosterone from converting to oestrogen, thus boosting your testosterone. Whereas, Cal-DG lowers both oestrogen and testosterone, presumably it drags it out through the bile. Occasional use makes me feel better the next day though.
Hi dangermouse - do you have any academic references to studies where any of this is shown? Especially with regard to steroid hormone metabolism and the interplay between oestrogen and testosterone? I would be grateful for any links - maybe a separate thread?
Hurdity x
These are some of them and the last is not research but excerpts from a book:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783856/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048776/?crsi=662497358
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5571834/
https://fortwaynephysicalmedicine.com/blog/the-benefits-of-dim
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Blue Kingfisher, it's all starting to make sense now. The bowel problems sound like oestrogen evacuation and this is something that dangermouse can explain far better than me but it sounds like you are offloading excess oestrogen. The fact that you bowels slow down when you introduce progesterone would bear that out. This happened to me once I was very post menopause and now I can only tolerate a low dose of oestrogen - see my thread in the post menopause section where I talk about my consultation with a gastroenterologist.
Re the long cycle, I meant that you could try using oestrogen only for about 6 weeks and then use the lozenges for your progesterone phase but you would need to either take 100mg for 7 days or 50mg for two weeks otherwise it won't be enough to provoke a good bleed and clear the womb lining.
I would be inclined to reduce the gel, keep going with the progesterone and see what's happens. I think it's probably a case of tweaking the dose to get the balance right.
Have you considered taking melatonin for the insomnia?
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Lots of replies ladies ;)
I'm feeling brighter now I'm back down to my 50mg. Still stupidly woozy with nausea and an odd head feeling, but yesterday after 2 full days on 100mg prog cream - I was experiencing symptoms I've never felt before.
Proof of absorption. I think so. ;)
Blue kingfisher - I can't help you, but I'm assuming if you are on lozenges you use a compounding pharmacy and prescriber??? You also confirm absorption ;). I'm sure one of the more experienced ladies can help.
I think you're absolutely right Sam. These bhrt clinics are fully booked. Some have closed to new customers, others you need to book up to 2 months in advance. Where are all the ladies using this bhrt...? Not in this forum it would seem.🤔.
There really needs to be a place on this forum for us to opely discuss these 'alternatives'. We are all woman trying to find a route through this stage of our lives. I personally find the advice I have received from Mary, Dangermouse and Sam invaluable.
Whether there is science behind it or not, we should be able to discuss. From what I've read there are studies demonstrating absorption and others not 🤷♀️, but there is nothing recent. I'm not normally a synic, but I'm now left wondering if the 'scientific' answer of the pill, with it's artificial progestin, hasn't in some way left me in this unbalanced state. We're the generation that started popping the pill in our late teens and continued all through our lives - is there science to show how it may/may not harm your long term hormonal balance????
That said, if someone can point me to a conventional treatment, under the NHS, I'll greatfully take it. All ideas welcome 😁
We're all just striving for the same thing - quality of life.
Yes, my BHRT clinic was only seeing current clients as they had been overwhelmed.
Glad things have settled a little on the lower dose. I was surprised I could tolerate a high dose last year as I had struggled before but was probably when oestrogen was too high.
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Re the bowels, as oestrogen is a stimulant and progesterone is calming, it could be simply that, one speeds up and one slows down bowels, even before you take account of hormone/liver metabolism.
Also progesterone slows transit in pregnancy to ensure maximum nutrient absorption.
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Took another lozenge and was hot all night with chronic insomnia but I’ve been here before & remember it starts to subside after a few days of taking the lozenges daily. I think I then start to sleep really well from memory. I’ll see if that’s still the case by the end of next week I’d imagine.
I take lemon balm & magnesium to help me sleep but nothing would have worked last night I’m sure. Too much hormonal transition going on!
Over the past few months, since being on the lozenges….for about 5-7 days of each month I feel really hyped up (hardly any sleep but can function well all day - not like now) but then I seem to literally crash & burn big time & that’s when I feel I’m poisoning myself every time I apply oestrogel.
I wonder if I’ll feel better on one lozenge a day if I’m on a lower dose if oestrogel I.e. could the oestrogel be driving the hyper state followed by the crashes?
I’m on thyroid meds but I keep that dosing very consistent.
Yes CrispyChick I get my lozenges from a prescription via a compounding lab.
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Bluekingfisher. Sorry you're feeling so bad. Me too. It really is awful.
So you are only on 10mg lozenges and you get big impact? That's really interesting.
Suppose the lozenges give more of a guaranteed hit than my cream. I'm up to 50mg this week. First month I've to take it for 21 days (last month I took 25mg for 10 days). Feeling dreadfully dizzy and nauseous today. Perhaps a bit vague too. This is all my 'normal' though - horrific as it is. I got a migraine yesterday afternoon and have had some weird head pressure this week, but that was mostly on the 4 days I hiked up to 75 and 100mg due to desperation, so I think that's the ups and downs - but shows I'm absorbing!
So, your clinic say you're low in both prog and estrogen??? You're saying the estrogen makes you feel poisoned - that's exactly what I got with classic HRT (the estrogen part) and some of the higher dose contraceptive pills.
The other thing is... And I say this with a large pinch of salt, but lots of articles talk of estrogen kick back, as in when u start taking prog it reawakens more estrogen receptors and makes it work harder. Some go as far to say reduce your estrogen dose when starting prog. 🤷♀️ I've no idea if that's the reality or not - but I'm holding onto the estrogen kick back idea to explain why my worst symptoms are still coming...
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This was being discussed on that FB you left, and the owner wrote this, in case helpful (but I would say it's a hypothesis rather than a fact):
"Estrogen kickback is a made up word that is referring to a bio chemical reaction that happens when you begin to supplement progesterone is stimulates estrogen receptor‘s causing a type of tug-of-war between progesterone and estrogen. If you have a severe progesterone deficiency and the dose is too low the estrogen will continue to “kick back“ and you will keep having a estrogenic symptoms. This can last a very long time if your progesterone deficiency Never gets corrected. That’s why raising the dose for some women is useful. If you are applying tiny doses throughout the day of 3% or 10% eating every hour is not necessary.
The idea is to have some form of carbohydrate in the system so that the progesterone can bind to the receptor and get absorbed. This is particularly a big problem with women who fast or skip meals."
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This is interesting too:
"Hi... My daughters blood test on day 21. After being on DIM her Progesterone: 68,2 nmol/l
Oestradiol :1093 pmol/L
Endocrinologist quite happy that progesterone has come up as it was on 0,3 in the last 2 blood tests."
I wonder if it's raising my progesterone levels as the DIM makes me feel more like I am on the prog cream but in a more stable way.
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Oh. Interesting about the DIM Dangermouse. I will be trying mine, but I'll wait to see if any affect from the calcium d glucarate first...
Yes, there was lots on that fb page about estrogen kickback... I got scared off when I realised they were advocating folks to take up to 1000mg prog cream ::)
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Sorry to throw this into the mix but my doctor at the clinic said that some patients with Mirena coils also like to use compounded progesterone for the calming/balancing effect.
This is probably one for you dangermouse but I'm wondering how synthetic progesterone fits into all of this, if any of you have tried a coil in the past and how you reacted to it?
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Hey, I was always ok on the norethisterone in my combined pill but taking it alone (POP) made me feel awful.
The only good results I felt from synthetic hormones was how the ethinyl estradiol over-rode my own hormones and the norethisterone was the best of the progestins to suit me. The one in the mirena from taking as a pill made me depressed.
I find bioidentical hormones much more therapeutic, when you can actually feel them and your own hormone volatility isn't crowding them out.
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Very interesting dangermouse. I was on Eugynon 30 from age 16 to late 20s and didn't have any migraines. It contains the same progesterone as the Mirena coil and the ethinyl you mentioned. I did gain weight and develop allergies though.
I didn't have time to go into detail with doctor about the patients she mentioned (time is limited as you know) but it would seem they use the compounded hormones to try to override the side effects from the coil - low mood and breast pain for example - and balance things out.
I'm amazed that you liked norethisterone, I found it was lethal for my migraines once menopausal.
I still think it's strange that I didn't have silent migraines while taking the pill pre menopause.
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Is it because the progestins attach to your prog receptors, so you stop producing prog of your own...? And progesterone is the calming hormone. Hence my suspicion of the mini pill ultimately unbalancing me. All that time with no progesterone.
I was on combined pills during my twenties and then the mini one after my kids... Can't recall why. I was on cerazette and it always made me a little flat.
I'd take flatness now though ;D
So, I wonder if this is the same reason Sam is taking prog cream, whilst on the mini pill.
P. S ladies I tried pretty much every pill available in 2020...the bad, the very bad and the ugly!!!!
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Hi all,
Long time no post as I’ve been trying to get into a good rhythm with progesterone lozenges & oestrogel. I basically can’t seem to tolerate the lozenges every day (they put me in a coma after taking it a few days in a row). Ive tried taking it every other day & this works for a while but then it all,gets too much & I crash like ive done now. I’m taking 2 pumps of oestrogel on the mornings when I haven’t had progesterone the night before & then 3 pumps when I’ve taken progesterone the night before. I’m wondering if you can take lozenges as a sequi regime I.e. 7-12 days lozenges and then stop until the next month. I didn’t take the progesterone lozenge last night and thinking about not taking it again for a while to see if it’s the cause of my symptoms.
I’m wondering if sequi might suit me better so does anyone know if you can use lozenges in this way.
I’m feeling exhausted, depressed, headaches and fed up of feeling ill & struggling to get much quaility of life.
Hi Blue Kingfisher
I'm sorry to hear that you've been having problems with progesterone. I don't know your story and whether you are being closely monitored by a private clinic? I also know nothing about the lozenges - except to re-iterate as I've said many times, that because these products are not regulated, there is no standard dose which is needed in order to protect the endometrium.
If you are taking 2 pumps of oestrogel and are post-menopausal then it is vital that the progesterone dose you are taking is sufficient to protect the endometrium from over-thickening. You will no doubt be getting some sort of bleed but as these lozenges whatever they are, are unregulated, in my view you should absolutely stick with whatever the private clinic has prescribed and not vary the regime, whatever members of this forum may suggest - and most importantly get any scans that are recommended so tht you know what is happening to your womb lining. I do sympathise with your side effects and the need to try to get your regime right.
Have you thought of trying patches - these may well give a more consistent dose. Apologies I can't remember where you are in menopause or your history.
Hurdity x
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These are some of them and the last is not research but excerpts from a book:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783856/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048776/?crsi=662497358
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5571834/
https://fortwaynephysicalmedicine.com/blog/the-benefits-of-dim
Thanks dangermouse - I'll have a look at those.
Hurdity x
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Is it because the progestins attach to your prog receptors, so you stop producing prog of your own...? And progesterone is the calming hormone. Hence my suspicion of the mini pill ultimately unbalancing me. All that time with no progesterone.
I was on combined pills during my twenties and then the mini one after my kids... Can't recall why. I was on cerazette and it always made me a little flat.
I'd take flatness now though ;D
So, I wonder if this is the same reason Sam is taking prog cream, whilst on the mini pill.
P. S ladies I tried pretty much every pill available in 2020...the bad, the very bad and the ugly!!!!
Hi Crispy Chick, i was just reading the last few posts about this and yes, it could be the reason why i started getting symptoms in the last year or so whilst on the mini pill. And the extra progesterone i now take in the form of a cream has helped massively. And as i said previously re my sister, she takes the same mini pill and the cream is working for her too. It does make sense, what has been said.
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Just to clarify - we produce progesterone in very small quantities all the time but only in large amounts during pregnancy - the production of which is started by the corpus luteum after ovulation. The calming effect some women feel after taking it (in small quantities) is due to its sedative effect but as far as I understand it, this is only when levels are higher than the background levels we produce anyway ie through the mechanisms above -ie preparing for fertilisation and pregnancy.
Taking any form of synthetic progestogen only has a positive effect on protecting the endometrium or preventing fertilisation and acting as a contraceptive - which is why I've never taken any (apart from a few brief attempts).
If you take the mini pill through menopause and even before it, this has the effect of dpressing oestrogen so eventually this can result in adverse health consequences. There have been instances of women on the mini pill getting VA even in their fetrtile years.
Cerazette definitely depresses oestrogen so you never get that wonderful ovulatory peak when most women feel at their best - so no wonder you felt flat Crispy Chick!
Hurdity x
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Hi Hurdity,
as you might have seen from my previous messages, i take the mini pill and progesterone cream. This is all working wonderfully well for me - no hormonal migraines anymore, sleeping better and overall i mentally & physically, i feel well.
I was concerned with your comment "If you take the mini pill through menopause and even before it, this has the effect of dpressing oestrogen so eventually this can result in adverse health consequences. There have been instances of women on the mini pill getting VA even in their fetrtile years"
Are you suggesting that i should stop taking the mini pill because of potential health problems? I don't have VA although i did experience a little dryness but that sorted itself out since using the cream. It was very worrying to read your comments. Thank you.
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I agree Sam. What you are saying is very worrying and also very confusing Hurdity.
It's clear you have a lot of knowledge and I see you regularly advocating the 'scientific' regulated approach over, say, bhrt. But your comments on the minipill are worrying.
GPs routinely advise woman in their 40s to take the mini pill over the combined pill, due to the reduced risk from dvt. I have met with this experience myself. I have friends, in their mid 40s, who have been swapped to the mini pill at the slightest hint of a headache on the combined pill.
You are telling us this is unsafe???
Can you explain further.
I do find your comment on VA very interesting as I have suffered some issues previously... Perhaps linked to my use of the mini pill.
So, unfortunately, all you've done for me is reinforce the need to take my health into my own hands and seek alternative help as the one regulated preacription the nhs keep telling me to take is the pill (both Gp and meno clinic) - with them saying the mini pill is safest at my age. :-\
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Exactly Crispy Chick, I was told in my late 30s that the mini pill was a good, safe option as you get older. And to be honest, i've not had any issues (although i do appreciate it doesn't suit a lot of ladies).
And to be honest, I have wondered whether i need to continue with it as a contraception as i get older but with things being all ok right now, i'm a bit worried about stopping in case it causes any disruption into my wellbeing.
You know, part of me thinks, oh what the hell, i'll continue with my regime, sod the consequences. I know my body, i know how i feel. It's a fine line, as we all know, coming into menopausal symptoms & potentially finding a solution - we don't want then to create waves by changing things. And Crispy Chick, i so hope, there is a solution for you!!!
Thanks Sam
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Sam - if I were you, I wouldn't change a thing.
I stopped the mini pill, cerazette, when I was 40...only because my husband (!) forgot to pack my toiletry bag I had laid out when we went away. So I thought, what the hell, I'll stop the pill. Try au naturel...worst mistake I've ever made. It doesn't work for me now, like it did then. Who knows, maybe I'd have become symptomatic anyway, but I wish I'd never stopped.
I have made statements recently about wondering if overall the pill has left me unbalanced - but, trust me, if it took my current symtoms away (even if it unbalanced me later on in life) I'd be on it like a shot!
Stay exactly as you are!!!
Hopefully Hurdity will be able to give some more info on her thoughts. X
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Hi Hurdity,
as you might have seen from my previous messages, i take the mini pill and progesterone cream. This is all working wonderfully well for me - no hormonal migraines anymore, sleeping better and overall i mentally & physically, i feel well.
I was concerned with your comment "If you take the mini pill through menopause and even before it, this has the effect of dpressing oestrogen so eventually this can result in adverse health consequences. There have been instances of women on the mini pill getting VA even in their fetrtile years"
Are you suggesting that i should stop taking the mini pill because of potential health problems? I don't have VA although i did experience a little dryness but that sorted itself out since using the cream. It was very worrying to read your comments. Thank you.
Hi there HelloSam
Apologies if my comment was confusing or worrying - not my intention at all! My aim is most definitely not to cause worry!
Hopefully I can explain better.
I was referring to the effect of Cerazette on reducing oestrogen levels. This is what it says in the Product info:
"Treatment with Cerazette leads to decreased estradiol serum levels, to a level corresponding with the early follicular phase. It is as yet unknown whether the decrease has any clinically relevant effect on bone mineral density."
So I was trying to say that if it is taken eg through peri-menopause and beyond (for symptom relief) then it is the general long-term consequences of the decreased oestrogen on health (ie bones, heart, genito-urinary system etc) post-menopause that I was referring to, not of course, any direct adverse effects of the mini pill!
I can understand that if it suppresses ovulation and the menstrual cycle then oestrogen and progestogen levels will not fluctuate as they would normally do in peri-menopause and therefore I can see that there will be some relief from symptoms in some women who are OK with progestogens. As I said, it was just the long term effects of oestrogen deprivation that I was referring to and it could be that if women continue to take the mini pill beyond menopause any flushes etc could be due to reduced oestrogen. Not sure if there any studies on this though?
This is why some gynaecologists recommend the other contraceptive pills - Qlaira and Zoely - for younger peri-menopausal women - because they suppress the cycle and therefore dampen the hormonal fluctuations ( in both oestrogen and progesterone) while at the same time providing oestrogen.
I am glad you are feeling well, and I hope that clarifies what I meant - apologies again for the confusion!
By the way if you do start to get VA then this is an indication that you oestrogen is low and one of the vaginal preparations - containing either oestrogen or DHEA is advised. Progesterone is not a treatment for VA.
All the best :)
Hurdity x
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Hurdity, I'm sure Sam will appreciate your reply.
What you say does make sense, but it's very difficult for us when GPs thrust the mini pill out as the safest option (note - I'm in Scotland and I don't think zoley or qulaira available... Most can't even get utrogestan!) However, with my current situation of estrogen fluctuations, the mini pill again sounds appealing - but on my last trials it left me with terrible mood swings. The only thing which seems to have resolved for me currently.
So... Back to my 'alternatives' on this alternatives thread.
So I've done over 2 weeks on the 50mg prog cream (give or take my few days of up and down dosage). My main symptoms are no better. Horrific is still the word I would use.
Must remember I'm also taking Testosterone and dhea cream. That was doubled. That's been 7 1/2 weeks in total. 3 on the double dose (which I think is 14mg test a week - still low dose when I've read the test thread).
So, as per usual, I am horrific the first 11 days of cycle. Nausea, gagging, dizzy, fatigue. Just awful. Then a few milder says around ovulation (not sure I did ovulate?!) then it ramps back up again for a few days. As in yesterday I just felt totally woozy all day with very bad pressure in my ears (not pain).
Today - I feel the clunk change! No longer woozy, sick or ear pressure. Instead today I have a horrifically achy upper back... And feel about 80 years old. I was also mildly sweaty in the night (not bothersome).
So this seems to be my pattern. I surmise it is estrogen dominance in first half of cycle, then when that finally drops - I almost feel low estrogen symptoms....
There is one notable improvement - my mood. I am feeling exceptionally calm. I am not feeling any mood dips. This is lovely. Although I maybe feel slightly sedated. But why, oh why, are the horrific physical symptoms not abating???!
I should add I also started DIM 7 days ago. Went through the 3 day headache, not much else to report on that yet. Taking calcium d glucarate twice a week to help stage 2 liver.
So i'll be stopping the cream on day 21 and restart on day 1 of next cycle. I'm to up to 100mg cream a day. Blood tests next month. Although if I'm testing on day 21, they won't see my estrogen surges 🤔
Any thoughts????
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Hey, would it be worth stopping the testosterone/DHEA for a while so you are testing one thing at a time? Testosterone made me feel very PMT-like but I didn't carry on long enough to know if it also caused the nausea etc (or added to the unopposed oestrogen symptoms). I also had a bad reaction to DHEA, think that was neurological, more dizziness etc. but that was a few years back to hard to remember. I generally found oestrogen, testosterone and DHEA gave me similar over stimulation reactions. Progesterone did the opposite, hence your lower anxiety, but maybe the prog isn't high enough to defeat all the stimulation from your own oestrogen and the other hormones?
Too low progesterone can definitely make you feel worse too but I know you have already tried raising it but 100 may be better.
I have only even taken the DIM on it's own but I know some on full HRT take it as it doesn't lower oestrogen, just stops it converting to the damaging form of oestrogen. Again, it may have too much to process with all the other hormones.
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Oh my goodness Dangermouse - what an eye opener.
I was worried about starting all the hormones at the same time, but that's what the clinic advised.
You've got me thinking now. I've barely had a day of feeling any better since starting test/dhea and the prog - but at that point the prog was just second half of cycle - I remember how bad I was that first cycle after starting it... Assumed it was estrogen kick back - but I wasn't actually taking prog those first 11 days.
Urgh... More decisions. I'm 7 1/2 weeks in and was kinda thinking my stable mood and calmness might be more likely attributed to the test/dhea since I've taken that continuously for 7 1/2 weeks. :o.
But, perhaps it is the progesterone. I don't feel well though. So this might be worth a try.
I'll be in trouble with the clinic again though 🤣. I'm due bloods next month. Test and dhea are on the list. I must say, my dhea Hever looked low. My test did.
Also, it reads like we convert Testosterone to estrogen. No idea why?! But it has been crossing my mind.
I started the DIM to try and combat any higher estrogen and to stop that conversion - which I believe it does.
Hmmmm this might be an option. Focus on the prog next month... 🤔
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Hi Hurdity, thank you for your detailed reply. In that case, i'll carry on as i am doing but be aware that if i do get any symptoms of VA, i know what i need to do. I'm sure my GP will not provide a prescription for the mini pill indefinitely but i'll cross that bridge when i come to it.
Crispy Chick - Each evening this weekend when i took my mini pill with my G&T, i thought of you :-). And i thought, god, if only this regime could work for you too, i'd drive up to Scotland from Yorkshire and give you all my creams & pills to try!!!
Dangermouse, it's a very good point you make about trying different solutions in isolation. I remember quite a while back, throwing everything but the kitchen sink into the mix and hoping for the best.
When i think of the amount of money i've spent - private menopause specialist, private prescriptions (sat languishing in a drawer), numerous supplements that were quite expensive and even the prescription for Amitriptyline - which at first i thought was great for migraines/sleep but had no end of awful side effects so abruptly stopped.
So for now, i'll take the mini pill, the 20mg of progesterone each day and see how it goes.
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If you find a regime that works for you, stick with it.
Sam, it sounds like you have really cracked it (I congratulate you for that) so don't allow yourself to be scared off. You may well need to tweak things later on but you can worry about that if and when the time comes.
Crispy, the symptoms you describe sound very much like migraine symptoms. Having researched hormonal migraines, I agree that you probably need to increase the progesterone for that part of the cycle.
dangermouse, the effects of DHEA seems to be mixed for migraine sufferers, what was your experience, you mention dizziness but did it made your gastric migraines worse? I wonder if DHEA could be causing some of Crispy's symptoms?
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Thank you for taking the time to reply ladies - it means a lot.
Sam - you made me tear up with your drive to scot comment 🤣 Been feeling a little teary the last 2 days... But you set me off ;D. I am putting the mini pill + prog on my next back up plan. So glad you're not having to go through this hell. I wouldn't think twice about staying with your regime. It's not to say issues won't arise later - but eyes wide open here - I'll prob experience the other end of the spectrum in a few years (low estrogen) and all those merry symptoms too. Take what you can, when u can.
Mary - are you, or were you, taking DHEA??? And what did it do for you??? I found an old thread that read like it had increased your estrogen.
Most 'googles' tell me it increases estrogen and/or Testosterone. I think it's worth a trial of stopping. I've been at my worst, constantly, the 8 weeks I've been taking it.
Dangermouse - when you tried Testosterone and you got pmt and DHEA and you got dizziness... Were these both prescribed through your hormone clinic at similar time to your prog??? Your experience made for very interesting reading.
What kind of migraines Mary??? I get bog standard headachy ones - no aura (all hormonal I think as never had them before all this). I take triptans when needed. No one has ever mentioned vestibular, gastric or silent to me.... At the beginning of all this, 4 years ago, I had a CT and MRI for my dizziness. My symptoms are constant when here.
I am due to stop my prog on Thurs, for the month. Restart on day 1 of next cycle. I guess that would put me in pmt territory at the moment - not got any of that. Which is great. I wonder if the prog is working a little. It must be if my calmness is from that. Be just my luck it was the DHEA calming me though 🙄. But the prog is not working on the main 'poisoning'...
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Crispy, migraines can have some very strange symptoms which is why they often go undiagnosed for years.
I have silent migraines (fewer now luckily) which consist of an aura that lasts for about 30 minutes but no headache although I do feel rough for the next 72 hours. They started at the onset of the menopause (I had a Mirena coil at the time) and are caused by spiking oestrogen which in turn is caused by synthetic progesterone, high doses of Utrogestan and generic menopausal hormone instability. I did not suffer with them during my reproductive years when hormones are more stable.
Migraines with headaches and no aura are usually caused by progesterone withdrawal (menstrual type migraines) but migraines can change over time and I was wondering if your nausea and dizziness might be a form of silent migraine?
I used to take 25mg DHEA every day but I stopped a while ago because I can no longer tolerate high doses of oestrogen and DHEA definitely converted to oestrogen in my case. Now that I am very post menopause, I have loose bowels and (to a lesser extent) migraines if I take high doses of oestrogen, it's like my body rejects it.
It's complicated but I need to have stable hormones to keep the migraines away so I can't risk taking any medication I can't control that has the ability to convert to oestrogen.
dangermouse has gastric migraines which are also caused by oestrogen spikes - please correct me if I'm wrong dangermouse!
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I stopped taking testosterone a couple of months ago because of the nausea.
I might reintroduce it once I’m more balanced on the lower doses of estrogen and progesterone.
I’m most certainly in a better place with the lower doses (post menopause) which I see many other members seem to benefit from. xx
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Yes that is well remembered Mary, gastric migraines! I was shocked with the diagnosis (endocrinologist) as I had always assumed migraines were about pain and I never had that. She also thought I may have had them since puberty but that my combined pill kept them at bay, as had neurological symptoms in my pill free week from about age 35, including a strange feeling of disassociation.
The migraines later were extreme nausea, like sea sickness (which was misdiagnosed as vertigo), twitching all over my body, a subtle weakness down my left leg and arm that would last for days, a pressure feeling in my head that later felt bruised on the back, right of my head, tachycardia to about 125bpm at rest and lots of eye floaters making my vision more blurred. I also had eye movement and sound sensitivity where at best watching TV or being somewhere where lots of background movement made me feel sick, and at worst I had to ensure my eyes were aligned with a spot on the wall for the whole day to not bring on the nausea. Some lasted 3 days, some 10 days and sometimes I just had constant low grade symptoms. All of this was amplified by GPs and A&E docs convinced my symptoms were due to a dangerous stomach ulcer, even though I had to wait 6m for a scan (hence, why I have now purchased private health insurance!) and was being, literally, force fed proton pump inhibitors at very high dose along with vertigo meds that make migraines worse! Perimenopause was never considered as I was only 46 ::)
So my clinic (London Hormone) have always wanted me to deal with one hormone at a time, although that may just be for my imbalances. Unlike other clinics I've read about here, they don't just do one size fits all. Once you know what works, there is the option to have a combined cream, although using patches or oestrogel/Lenzetto is initially offered as it works out cheaper.
I think when oestrogen is surging high you can either overwhelm it with high dose oestrogen (similar to the combined pill) to ramp down our own volatile production or subdue it with high dose progesterone. The latter is preferred as it means you don't need to then monitor the womb lining.
This time around, I asked for a separate testosterone cream last autumn to try once my progesterone had calmed the volatility. The dose was 0.5ml to take 5 days of the week. It made me feel similar to the oestrogen so I didn't continue it. Although my clinic also prescribe DHEA, I had purchased one before online and that had made me feel migraine like, nothing extreme but I felt it was interfering with trying to settle with just the progesterone.
It may be the case, and I've certainly read it on this forum, that oestrogen levels need to be high before testosterone is no longer converted to oestrogen. Could be the same with DHEA.
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Oh my goodness. It's a total minefield.
So the migraines were caused by high estrogen Dangermouse??? Absolutely horrific. I'm not convinced that's my case as my symptoms are constant, from the moment I wake... Some days worse than others. I assume there was no cure for your 'migraines'???? Just attempts tobstsbakise your hormones?!
I'm feeling really dispondent today. I stopped the test/DHEA yesterday. Felt slightly better yesterday afternoon. Headache migraine in evening - put that down to stopping the hormones.
Today I feel as bad as ever. :'(
So... This is it now. Next month up to 100mg cream. I'll stay off the test/dhea - at best it was making me calm, at worst it was making me worse. I've not noticed any difference from the DIM, so think I'll stick with that for the 30 days.
Something is making me feel this bad, every min of every day. I'm not even getting the little respite I used to get at times during second half of cycle. But on the whole my symptoms are just my usual, but at their absolute worst.
I note, whilst my mood is OK, I'm feeling easily teary this week (not massively). Now, i am feeling sorry for myself, but i also wonder if it's a low prog symptom as I'm in second half of cycle.
I'm so sick of feeling sick. :(
My only hope is that ramping up the prog cream and stopping the test /dhea (they were combined) will take time and work eventually... But I need to remember they weren't the cause of my symptoms in the first place - so all focus is bowvon the prog cream and dim. ???
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As well as individual hormones potentially creating turmoil, the main source of turmoil is changing something, so you really need time to let things settle. It's no wonder you feel awful whenever you change something as your body needs time to adapt.
As you've been consistent with the test/DHEA that makes sense to remove it for now, as it hasn't settled for you, and just stuck with the prog and DIM. I would also not have any prog gaps, if you were doing withdrawal weeks, you want as much consistency as possible.
If you feel that the prog builds up (bloating or too sedated) then I would try taking it on alternate days which is better than taking a week off once a month. It take about 48 hours before you get prog withdrawal symptoms so that should stop it kicking in. You just want something consistent over the course of a few weeks to see if it's really suiting you. Then you test other doses and add other things in later if necessary.
Remember though that your own is oestrogen will be having its own volatile dance in the background. You could try noting down over the course of a month how you feel to see if there is a cyclical pattern going on behind. Then you are not disappointed when it repeats the following month and can be ready to ride it out.
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Thanks, Dangermouse.
You're absolutely right. Consistency is key. You did however open my eyes to the DHEA. I've read into it a bit now, and I don't think it's a trial I want to do, at this point in time. Like you say, I've given it a good bash - and I feel truely awful. So it's certainly been no help... I'm hoping now it has been a hinderence.
I was just reading an article about how DHEA (heralded as the hormone of youth) can work for done but be very bad for others. Think I'd rather concentrate on the mainstream hormones first.
I have experienced a big mood drop today. Perking up a bit now. Could well be the drop. If the DIM can give u bad headaches, I'm sure withdrawing test and dhea can do something.
I want to give the prog a really big last shot. I'll try to get to the 100mg next week and stick. That's what MG instructed me to do.
The only way is up... ;)
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Keep going CrispyChick we’re all there for you!
Wise decision to concentrate on the Progesterone going forward.
Keep trucking! xx
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Thank you Marchlove :-*
That's the DIM dropped today. Only made it to day 9, but yesterday was so bad (could've been a come down from the dhea/test) ... But I feel I need to strip everything out, bar the prog cream.
Apparently DIM once it's converted estrogen can recycle it making things worse... So another thing not to add in at the mo.
I am going to finish this months 50mg prog cream course tomorrow and take the break, as instructed by my MG doc. That way I'll know if I feel different on no prog cream. Then restart on 100mg...of which I'm nervous. Just can't really take much more of feeling so ill :-\
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It was interesting to read about the migraines and how we've all had different experiences.
Like Crispy Chick, i only thought there was one type so it was an education to hear about silent migraines and others.
Just for reference, I only started getting them in my mid 30s (severe pain, one side of head). Although i didn't have periods, being on the mini pill, the migraines were once a month for 2 days so i assumed that was aligned in some way to my periods. I finally went to see my GP who described them as hormonal migraines and prescribed Sumatriptan. When my peri-menopausal started last year, I had insomnia & migraines occurring most days. These migraines were far more debilitating than the insomnia and I was taking Sumatriptan pretty much every day. Even if i could catch them in time with Sumatriptan, they still left me feeling horribly unwell & wishing for bed time to come around fast. Days just wasted!
As i said before, trying Dim caused almighty migraines - worse than anything i've previously experienced.
Crispy Chick - i'm sure it was Mary G that suggested to me that it would be fine to continue the progesterone cream without a break. I have followed that advice and all fine & on an even keel. I can't remember now if you've already tried using the progesterone cream without a break? I know you're going to follow the procedure from your clinic for now & without anything else diluting the results, so see how that goes - i so hope you get a breakthrough. But worth thinking about - for me, a low dose of progesterone cream continuously is working.
In any case, it's good for us all to connect and see how we can help each other. The information i've received on this thread has been invaluable and what you're experiencing Crispy could so easily be an issue for any of us at a different time & visa versa.
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Thanks Sam
I'm actually keen to take the break this month... As I'm suspicious it's the prog cream making me feel this bad. I took it an hour later this morn... And swear I feel a lot worse after taking it. But...im also coming down from the DIM and DHEA/TEST... So too hard to say. But the break for a bleed will help work that out. After all, this is the first month I've taken it all month.
If it is the prog cream - it's most prob too low. I fully intend to go to the 100mg next week... :o
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I understand Crispy, we all know our own bodies well enough now to understand what might / might not be working. I think i might have missed your post about taking it all month. We'll see how it pans out next week with the change of dose and a clean slate from the other medication. Take care, Sam
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Yes good luck CrispyC with what you're doing, I definitely found that too low dose prog made me worse, it seemed to
churn everything up. When I had higher oestrogen, so similar to your phase, I never found a perfect dose and it was more after stopping for a year and looking back I realised it had made me feel a lot better than I'd realised going by the year without it. I wish I had tried higher though as now it's lower the 100mg (50 was still too low) firmly stopped any oestrogen volatility.
Re the DIM, again at your phase I had an initial ramp up of overstimulation so I didn't give it a chance - I was always so petrified I'd be back on that 'boat' for the next couple of weeks. Now my oestrogen is very low but gently surging the DIM is coping with doing what it should be doing. Your testing makes me feel that the same may have happened to me back then.
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Hi Crispy
My meno lady says to always take the progesterone at night. At the moment I’m using a 25mg lozenge but about to increase to 50mg.
Don’t know if taking it at night might help things for you x
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I really hope you have some improvement soon Crispy but I do wonder if your ultimate solution will be continuous progesterone.
Marchlove, I'm glad you are getting on well with the lozenges and hope the mouth sensitivity has improved.
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Thank you for remembering Mary G. No it didn’t improve, so my specialist told me to swallow them for now which resolved the problem.
Bizarrely, I have no problem taking the Bi-est lozenges that way.
I remember reading somewhere that estrogen is good for oral health, so maybe that’s why. x
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UPDATE
So that's me competed 21 days on the 50mg cream.
Stopped DHEA and test - no conclusion on that yet.
Stopped DIM and Calcium d glucarate - conclude DIM was responsible for making me weepy and low, as that shifted quickly. CDG seemed to start a bit of discomfort down below ... That stopped when I stopped it. So those two big gun hormone shifters are out. Bye bye £45 >:(
I'm day 3 of no prog and have the most horrific pmt ever. I would say however, this is how I felt for a good 10 days a month on the mini pill. So defo low progesterone. In this instance, it shows I've been absorbing progesterone cream as I'm clearly withdrawing. I didn't experience this on the 25mg dose.
So... All things point to needing a higher dose of prog and continuous dose. I'm nervous as I got intense head pressure when I tried 2 days of 100mg last month 😬.
Hopefully I can get on it and do day 21 bloods in 3 weeks then see where I'm at. :-*
How's everyone else? Matchlove, why are you upping your progesterone???
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Hi all,
I’ve been lurking in the background but just to say, I’ve tried taking my lozenge more continuously which made me feel initially better but now I’m feeling no better at all. I’m only on a 10mg lozenge and wonder if my symptoms are also due to too low progesterone. I couldn’t tolerate progesterone cream at all, unless I wanted to be in bed all day and not be able to work. As it is, I work but I feel very unwell……at least I can just about make it through the day but sometimes it’s very hard going (working from home has been my saviour here as think I’d be sent home if people could see how bad I look).
Anyway, seeing other ladies on this thread are on 25mg when I’m on 10mg makes me think I’ll try increasing the progesterone to 20mg & see if I initially feel better or worse. It might be a need to titrate the dose up.
All this time I’ve been assuming I’m intolerant to progesterone but it could be the dose is too low listening to what others are saying.
So I will also try upping my pg dose Crispy & let you know how I get on.
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I don’t really know CrispyChick! I haven’t upped them yet.
Only going by what my specialist said which was that we will increase it soon.
She is quite adamant though about taking it at night, so I’ve stuck with that. x
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I'm due for my new prescription soon so I thought I would ring the pharmacist to get some more technical info on the progesterone drops.
I am always open to the idea of trying new products as they become available and hormone stability is essential for me because of my silent migraines so I wanted to check out my options. They now have both progesterone cream and progesterone gel available which sounds interesting. I have decided to stick with the drops for now but I thought some of you might want to consider the transdermal option if you are having disappointing results with the lozenges - they can cause mouth irritation as we know.
The person I spoke to was brilliant and we talked at length about the importance of balancing oestrogen with progesterone, not just for migraine sufferers like myself but also for those who are trying to lessen the effects of oestrogen dominance/spikes. She suggested splitting the progesterone dose by 12 hours to get a better balance.
We then discussed testosterone and she confirmed that branded testosterone (which is for men) is strong and if you are low in oestrogen, testosterone will convert to oestrogen and cause spikes.
We also talked about my problem of loose bowels and migraines if I use a higher dose of oestrogen. Her suggestion was to increase the progesterone dose which makes sense.
It was a very useful discussion.
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That’s very interesting MaryG, thank you for the information from the pharmacist.
I was interested in what she said about the Testosterone. It’s something I always feels happens. I think the irritability one can experience from testosterone is actually due to its conversion to oestrogen. Just my theory though!!
I’ve considered whether it might in fact be a good idea to take an aromatase inhibitor, which would block this conversation. I believe progesterone might be a very weak inhibitor and I think zinc is, but also other things I’ve read about like Resveratrol.
So much to figure out as you would have to prevent too much converting to DHT as well!!
So, for now I’m just going to stick with the low dose E and P. Not perfect but better than with high doses. Just to remind you all that I’m 10+ years post menopause so my low doses would not necessarily work for others.
xx
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Thanks Mary
That is very interesting. I had good advice from the pharmacist there too.
I wonder where you apply the gel?! I wonder if it's similar to the prog gel used by some in pregnancy - there's a post on that.
I've stopped the Testosterone and dhea. What you've said makes me think it's a daft thing to be trialling at the same time. Can't say stopping has helped, but anything that may increase my estrogen, is not for me at the moment. I do think I've lost the overall calmness since stopping them, but I can live with that.
I'm still struggling away here. I'm up to 100 mg prog cream. Still awfully woozy with motion sickness.
MG told me to come back in 3 months after bloods. Prob a bit early to do bloods this month, as its how I feel rather than blood results really. I know I'm absorbing as after a month on 50mg (feeling awful) I had the lightest, easiest period (physically) in my history! My periods have never been a problem for me, but i usually get some endo type pain. Nadda this month. So that was nice.
My only concern is, if I take continuously I'll not get a period. I'm pretty sure of that, so then the next month I won't know when day 21 is to test ???
So, I'm thinking of upping before going back to MG. Don't really want to pay for bloods and consult to be told to try upping it... I'd rather give it the 2 months trying myself first.
Dangermouse - you were told to take 200mg by the London hormone clinic, is that right???
I've done a hell of a lot of research on prog creams and most advocating prog therapy for bad estrogen dominance say min 100mg (all US based).
So... Onwards and upwards... And hopefully to better times :-*
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Help. Any kind words of advice?
Still really struggling. So I took 100mg cream Mon and Tues (split dose) felt awful yesterday. Sicky and woozy and totally spaced out.
So last night I decided to take 125mg, which took yesterday's dose to 150mg. OMG an hour later I was totally out of it. So spaced out and ill feeling. I had extreme bloating too - which was new, but shows I'm absorbing quickly. I had to go to bed straight away. I was such a mess.
So I was scared for this morning. I'm not any worse than yesterday. Not good at all, but no worse. ???
Just not sure what to do??? I'm not going to split my dose today. I can't seem to function after even a small 25mg dose, so I'm thinking take all at night - I know that's against the advice of keeping stable levels.
Just so sick of all this. Now I'm not sure if the sick/woozy is my original sick/woozy or a new sick/woozy side affect. I just feel tortured. Everything makes he sick and woozy!
My stomsch is a bit off today too, so my body defo feels that high dose. I'd happily take that if I could have a clear head with no nausea!!!
I know no-one is in this position, but any thoughts greatly appreciated xxx
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Hi there, I don't know how to help, but is the specialist who prescribed it able to give you some reassurance or advice? It seems strange as I thought people went down the compounded route because side effects were supposed to be less. It doesn't seem fair at all, I am so sorry. Nausea is such a dreadful symptom to cope with. Is it definitely a physical symptom from the cream and not the stirrings of anxiety?
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I agree Gnatty, nausea is absolutely terrible and is what i was experiencing daily before using the progesterone cream. Like clockwork, it always started around midday for the rest of the day.
You know Crispy Chick, part of me thinks, it may be worth taking absolutely nothing for a day or two and see how you feel, you surely cannot feel any worse than you do. Or have you done that before?
Thinking of you, Sam
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Hello ladies.
CrispyChick - I am so sorry that you are suffering and I completely understand your frustration. I have not tried compounded hormones as I am still fiddling with the standard Oestrogen gel, progesterone tablet/pessary and Testosterone combo.
From reading this thread I wonder if my mood swings are due to low progesterone and or oestrogen dominance. My meno doctor has always focused on lowering progesterone and increasing oestrogen but your comments make me wonder if this is the correct strategy?
I am going to try and get an appointment with my meno doctor and if I learn anything useful I will pass it on.
Wishing you all well ladies and sending hugs.
K.
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Thanks ladies
Just seeing replies helps ladies. Thanks so much x
My clinic said at my last consult to up to 50mg per day - which I did last month, and felt dreadful, then up to 100mg this month if no better.
Everything I read online from countries where they use prog cream - says 100mg to 200mg for ED symptoms. So I thought I'd go for it ;D and took the 150mg yesterday. The majority last night.
Yes, defo either cream side affects, or my original synptoms (which are intense dizziness and nausea) Not anxiety. I'm so spaced out I'm not interested in anything ;D. Nothing is remotely bothering me. I think I'm on side affects now - they're just similar to my original symptoms - and yes gnatty, I agree.... I thought compounded would give me the answers. I know nothing is a quick fix, but I'm on month 4!!!
I don't think there's any point stopping for 2 days just now as I stopped Fri to Sun for my natural break. Suffered extreme pmt for one day then had the lightest period ever. Didnt at any point feel good, but I do think the wooziness went down a notch.
I told myself this is the last month saloon... So I guess I need to plod on this month. I'm just about to call up and order my bloods for day 21 then I'll book a consult.
Kathleen - I totally bought into the whole prog dominance thing... But now I'm not sure. If feels like the whole world are at opposite ends of the spectrum. UK is estrogen pushing, USA seems to be prog pushing. We just don't seem to have the answers yet. >:(
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Sending hugs Crispy, there’s got to be a break through soon. X
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Sorry to hear that Crispy, I think you should phone the clinic and/or the pharmacy to get some advice.
For 'oestrogen dominance' read 'oestrogen spikes'. This is a huge problem for a lot of women in peri menopause and I now know 100% that it was the cause of my silent migraines and I wish I had known this in 2004 when they started. Back then and until a few years ago, I needed high doses of oestrogen to keep the sweats away but I can no longer tolerate that level because my body has changed - the menopause evolves.
In order to get rid of oestrogen spikes in the early stages of the menopause, you either need to go very high with oestrogen (overriding the cycle) or very high with progesterone.
I use compounded progesterone because (in my case) it does not have the horrendous side effects of Utrogestan and because I like the flexible dosage.
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Thanks Mary.
So you think really high on prog is what I'm trying for??? It's certainly been my thinking, but the level of spacey wooziness I got last night from 125mg cream was off the scale. Probably comparable to what folks get with utro I guess. I'm just left wondering why the cream is affecting me in this way 🤷♀️
I've certainly no desire to go high on estrogen.
I just seem to get the wooziness, dizziness and nausea on whatever hormone I touch. It was the main problem, in various formats, on my pill trials. Yet used to take the pill no problem.
It's mid afternoon and, having had no cream this am, things have calmed. I'm extremely flat and disinterested in my mood today - but ill take that. If I could just get rid of the wooziness, it would be a start!
I have logged a query with the clinic for my doctor. I've considered calling the pharmacy, may do so in a few days once I've tried the high dose (150mg) for a few more nights. Night time only. See what transpires. Maybe there are alternatives to the cream that will suit me better.
I just got an almighty shock last night with my reaction to the higher dose of cream. I'm scared for tonight.
Your thoughts are helpful though - make me realise it is still possibly what I need... I'm just not settled yet. X
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I think the Progesterone is the way to go for you CrispyChick, but you have taken a big leap upward and I expect your body is thinking what’s all this!
I really think you should only take it at night and stay at 100mg and see if it settles.
It seems like mood wise the higher doses will work for you but if you’re feeling low and flat, that’s showing that you’ve over stepped the mark.
x
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Good advice Marchlove.
I'm definitely going to try just at night.
I know you're also right about the dose, but this is my 4th month and I've had enough. All the American sites say you need between 100 and 200mg min for ED. Just to put it in context my ratio is 12. It should be between 100 and 500.
I'm loathed to do yet another month where it just antagonises my estrogen - if that is indeed what is going on. >:(
That said... Last night was awful and as I've taken nothing this morning, if I continue at that dose, it'll be even higher tonight. :o I'll decide at 9pm ;D
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Hey, I wasn't prescribed 200mg, was just told to take as much as I could as I got more used to it, they were happy for that to 400mg if that is what it took.
I also found the earlier notes from my endocrinologist re progesterone as I was so sensitive:
'Start progesterone 25mg once a week and make sure you feel ok until you very gradually start to increase it to every night'.
Maybe for you, as suggested, you need to let it all out of your system and then start low dose like this?
I do remember when I was struggling the most that having a couple of weeks break and then starting again my body didn't over-react which surprised me as it felt like a vaccine where my body now had a memory of it and it accepted it after a 2 week break.
Obviously another strategy again but something to consider. Hope that doesn't confuse even moreso! ;D
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Re my earlier post and overriding the cycle, I should add that some women find the contraceptive pill works well for them and suppresses the cycle/oestrogen spikes.
Oestrogen spikes cause a whole host of problems for women in peri menopause.
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Yes dangermouse that is more or less what my specialist is doing with me. Sort of desensitisation, perhaps like a nut allergy, so your body slowly begins to accept the progesterone is not an enemy but a natural balance to estrogen.
Sounds weird I know, but that’s what I feel is slowly happening with me.
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OMG I can totally identify with the trials and tribulations of progesterone that is being discussed here! I probably understand very well how Crispy is feeling on the higher dose of pg but I can also say finding the right rhythm (sequi/conti/on-off routine) PLUS the right delivery mechanism seems to be key for me.
I upped my pg lozenge from 10mg to 20mg for a few nights in a row and a black cloud started to engulf me. My digestion was so slowed down I could barely eat. I felt hot, dizzy, nauseas, depressed etc. Increasing the lozenges for me on a conti regime at least is not the answer. This isn’t something one can push through, I’ve tried that approach before, it didn’t work, it won’t work for me. I do think the point Dangermouse made is very interesting in looking at old notes with the 25mg pg once a week advice until it settles & your body can handle more. I also tried lowering my ostrogen dose (before I tried upping the pg), again, wrong direction for me.
I think I’m either going to have to hobble along very slowly taking a 10mg or 20mg lozenge every few days or try a sequi routine. I’m not going to take a lozenge tonight and play it by ear whether to try the pg every few days route or give my body a longer break & try sequi.
I do find once I’ve given my body a break from the pg that it’s then delighted to receive it. It then has a calming effect on my body but if I take it continuously for too long (over 3 days) it’s NOT good.
The delivery mechanism is also a very strange phenomenon to me. I couldn’t tolerate 100mg Utro vaginally when I was on sequi (I’m taking proper suicidal thoughts) but I could tolerate the 200mg Utro pessary better. Go figure. Must be something to do with the different way they are composed and deliver in my body. It wasn’t ideal on the 200mg pessary as the swings from high to low pg were an issue for me & unfortunately couldn’t tolerate it conti.
The only issue I’m worried about now is how bad the withdrawal will be if I try sequi! I won’t take a lozenge tonight and see how I feel. Probably the safest route is the every few days route.
I was also very interested to read Marchlove is taking the lozenge just before dinner rather than bedtime. That’s something I will also try when I take the lozenges hoping it gives it more time to be out of my body by the morning!
Blue x
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How are you feeling Blue?
I have a question for all those on bhrt 'alternative' progesterone. So most of you seem to be on lozenges. I know the clinics all run via blood tests, so I'm just wondering how well you absorb on the progesterone??
My thoughts are that I'm maybe not absorbing enough via the cream, therefore the small amounts going in may only be antagonising my estrogen.
I've read a lot. Like everything out there. It seems any tests on transdermal progesterone show high rates in saliva and capillary blood (finger ****) but serum and whole blood show low levels.
What method of testing do you have done? My MG doc did not seem fussed if I opted for finger ****s 🤔 although, I have actually gone for the blood. I'm now glad I did, so it's comparable with my first tests.
So, do your bloods show you absorb well???
I recall Dangermouse saying she absorbed the cream well, but I can't find the post - also wondering about method of testing???
I ask this because:
a) I still feel lousy (not any worse on my 150mg, but not better)
b) I'm curious that those on estrogen are not given cream
c) when I had my first progesterone trial in Dec it was 25mg capsules - the first 5 days were horrific with my estrogen synptoms, then I seemed to switch and go narky and irritable but my ED symptoms went. But I haven't felt that switch at all with the cream. (I remember the narkiess well as we had the in laws to stay 🤣)
Thanking you x :-*
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Both transdermal and lozenges absorb well. The reason I know is from my mood. Low and flat if too high. Physical - aches if too high.
Lower energy. But, when you hit the sweet Goldilocks dose- mellow, calm, in love in a nice way.
Tests wise, I’ll hunt out a Dutch test article about the pros and cons of all the various test options and post it here. xx
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I came across this which is very complicated. I’ve been wondering about the half life of sublingual estradiol.
From what it says under that section I’m thinking I should split my dose.
Need to print it out and study it more fully, although I think it will take ages to sink in!
https://en.wikipedia.org/wiki/Pharmacokinetics_of_estradiol
x
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It is a minefield Marchlove...
That's where I've been with all my searching. Certainly the wiki page on progesterone as a medicine states that transfermal prog has shown inadequate absorbancy 🤷♀️.
That's me taken 5 doses of 150mg at night. I'm now over the spaced out woozy feeling and instead my original symptoms are back with a vengeance!!! I am seriously on the edge of giving up. Its torture to live with these symptoms every day.
At 25mg my symptoms were very high. At 150mg my symptoms are just as high. :'(
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I’ve just done 2 nights of no progesterone and will see how I go. It’s too early for me to draw any conclusions so I’ll have to play it by ear. I have to decide at some point if I’m going to allow a withdrawal or hop on & off pg. if I do, I’ll be trying the lozenge pre-dinner like Marchlove does in the hope the pg side effects are less by the morning. I’d just like not to feel exhausted & nauseas every day!
Re different tests…..this I suspect is complicated but I know from experience, extremely annoying that the medical practitioners don’t appear to be united on. I was at the Studd clinic who use blood serum testing and they advised despite my application of 5 pumps oestrogel daily, that I wasn’t absorbing well enough and my oestrogen levels needed to be higher. Eventually I moved away from the Studd clinic and I’m now at a different one who has access to more different types of progesterone (creams, lozenges etc as well as classical HRT). They use saliva testing & advised my oestrogen was too high…..I’m now alternating 3 pumps one day 2 pumps the next. Frankly, I don’t care who is right….I’d just like to feel better!
Marchlove, I also did a Dutch Test a few years ago, again saliva testing & again advised my oestrogen levels were too low. I’m wondering if I should come off progesterone altogether and either do sequi on a long cycle or stay on oestrogen only whilst I wean myself off HRT over a couple of months. It doesn’t seem to be helping me currently! Ha! So easy to type that idea! I suspect putting it into practice will be the highway to hell!! Having to hold a job down though all of this is quite a challenge I.e. trying not to look like I’ve been dragged through a hedge backwards on Teams calls >:( ???
Crispy, are the clinic you are under advising you to up you pg like you are doing? What do they say about your symptoms?
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So here is zrt labs article on accurate testing
https://www.zrtlab.com/sample-types/hormone-testing-for-different-supplementation-types/
I’ll try and find the Dutch test article about it x
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Oh and this is even more interesting regarding progesterone testing!
https://www.zrtlab.com/media/2124/the-science-of-dried-blood-spot-testing.pdf
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Yes! That's exactly what I'm talking about Marchlove.
Lots of studies saying progesterone is much higher when tested in saliva or finger **** versus serum. However, some claim (as your article does) that the saliva /finger **** is the accurate dose. Others claim its whats in the blood that counts.
Certainly when it comes to endometrial protection - they say the saliva/finger **** grossly overestimates what gets to the endometrium. Obviously being on progesterone alone, that's not a problem for me.
I think I'm happy I'm sticking with serum for this next test. For consistency. The last thing I need is to be told my progesterone is too high when I've felt dreadful on all the doses I've tried 🙄.
For an extra £40 I could do my own finger **** test... Will see how my bloods go first.
Just another added confusion. I feel like I've been born 100 years too early. They seem to know the science, but total dispute about what it actually means.
I totally agree Blue, I don't care what tests are right either, but I feel like I may have to care if it affects my treatment.
I'll maybe ask my doc at next consult.
Blue, my clinic don't seem keen to advise between paid consults - I'm awaiting a reply to my question from Thurs. Not particularly impressed with them, but for consistency, I'll stick just now. I'm throwing lots of money at this, so I've just booked another consult earlier than I was meant to. They did tell me last time, up to 50mg for a month, then up to 100mg for the next month. I've gone to 150mg off my own back. I'm not any worse for doing so, but I'm just as bad. I didn't really want to pay £140 to be told to increase again ;D. I can't go any higher now or I'll run out of cream.
I do feel like my mood is dipping mid aft, so I probably need to try split dosing again now the spaciness is less.
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That’s fascinating Marchlove! This gives me confidence that I’ll rely on the saliva test for now (which means I’m heading in the right direction by reducing my oestrogen). Interesting to read that the dry blood spot test would probably be most accurate for me going forwards, due to the lozenges I’m taking but…..it says not to apply any hormones with your hands several days before testing…..wonder how I’d put the oestrogel on….with my foot? :o
I’m feeling much better this afternoon so I can only deduce that’s the progesterone level coming down. I’m not lulled into any false security though…..tomorrow morning could be a whole different ballgame!
Crispy, I think you’re doing brilliantly with the cream & keeping a logical approach. What sort of test did you take to determine you needed pg only? As I said, I’ve had both blood serum & saliva which gave totally different results & therefore totally different treatment paths……it’s so nice for these practioners to practise their theories on me :-\
Blue x
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I have just remembered that my doc said we are doing these next bloods 'to see if I'm absorbing'. They offer serum as their standard bloods. You'd have thought they'd be used to this issue then?!?
I'm hoping Dangermouse pops on cause she definitely told me she was shown to absorb cream - be good to hear what type of testing that was.
If I don't show to be absorbing the creams in my serum levels, then I'm guessing they might try a different route. Given that I'm getting no better... That might not be a bad thing. After all, the nhs go on symptoms alone... Maybe because of this testing discrepency. :-\
I might, just might, order myself a finger **** and take it the same day ::)
The only concern raised from my doc about finger ****s (I asked cause I thought it might be cheaper) was contamination. I do wonder how the serum is not contaminated though if they go in your arm where you rub the cream. 🤷♀️.
I'm probably over thinking as usual.
Blue, it was blood serum test that showed my low prog. But, from what I read, that would be true results, its the transdermal application that can differ between blood and saliva etc.. Not your own.
Im glad you're feeling better this aft. Any respite you get is wonderful. I hope you get a good stint of feeling better. X
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Here is one Dutch test article, can’t find the one I was looking for.
Not sure how old the article is as no date.
https://dutchtest.com/wp-content/uploads/2020/05/Transdermal-Progesterone-Best-Practice-and-Literature-Review-REF121019.pdf
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Thanks March love.
I'm losing the will... That article says the opposite of your other one ;D. They all agree that transdernal P shows highly in saliva and finger **** and not in serum... But all disagree on how you use the info. :o
Man alive!!! That article says u can't use either :-\
I'll certainly be asking my clinic about this.
Then I'll go write a PhD about it 🤣🤣🤣🤣.
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I found this discrepancy to be exactly the same for oestrogen levels. I measured low in blood serum, high in saliva. Not helpful when you have conflicting advice is it. The truth is, you have to try and find out what works for you & what doesn’t. But, it’s very confusing trying to navigate through the labyrinth!
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Oh please do CrispyChick, ask your clinic and write a thesis please!!!
I’m wondering if the endocrine/hormone system should be taught at school as a completely standalone subject to GCSE!
By starting at a young age by the time they reach peri menopause they will have it all sussed and not be in the situation we have all found ourselves.
I think we should start a petition ::)
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Just reporting in to say I’m on day 4 of no progesterone and I feel soooo much better! Not brilliant but my goodness much better. I’m expecting to nose dive any day now as yet to have a bleed but it’s been fantastic to feel more like me & have my sense of humour back. I was on lozenges for a good 5 months so not for me on a conti regime but gave it a good try - my body can’t tolerate the progesterone this much (10mg every night).
It’s sequi for me with lozenges or off HRT or hysterectomy.
Hysterectomy very, very last option!
Blue x
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I’m in the same camp as you Blue, but I don’t want to come off hrt and hysterectomy would be a last resort x
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I think I’ve tried pretty much all options now from tablets to pessaries from creams to coils. Lozenges were the most tolerable but I can’t tolerate even a low dose on a conti regime.
Perinowpost, what types have you tried? Sorry you are also in this highly intolerant gang, it isn’t much fun!
Blue x
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Hi Blue pretty much the same as you, I’ve tried:
the mirena (which I had to have removed after 6 months),
noresthisterone in patch form,
Dydrogesterone in Femoston,
Tibolone (not technically orog but ill for the 3 months I was on it),
utrogestan - even vaginally can only tolerate 7 days,
Private 50mg progesterone in tablet form.
I haven’t been able to tolerate any of them continuously. Symptoms are always the same, ok at first then quickly builds and becomes intolerable. Relief only occurring after withdrawal.
I am about to trial cyclogest 100mg vaginally alternative nights, but it is pretty much my last ditch attempt on progs available on the nhs. I’ve thought about trying the private lozenges but it’s all so expensive and especially when it doesn’t work.
There’s no getting used to progesterone for me. I suspect if I want to stay on hrt (which I do), the only way is minimum dose for minimum time x
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Sorry to hear that Blue.
I assume, as you're using lozenges, you're under a clinic??? What's their advice??? Have they tested you during this latest trial??? X
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Perinowpost your experiences sound very familiar! I start off ok but it quickly builds up whatever the dose, whatever the form of administration-all leads to debilitating symptoms.
Crispy, yes, I’m under a clinic but the lozenges have been the best of a bad bunch so I’ve just got on with it this time. I could easily go back pretty promptly but I’d rather wait & see what my symptoms tell me when I’ve been off progesterone for longer - I need more data as my oestrogel dose is much lower than when I was on Utrogestan so this will all be very telling for me.
I honestly don’t see the point of testing at the moment with regards to progesterone levels, I can’t tolerate progesterone conti full stop. The only test I think worthwhile is the uterine scan at the moment.
I’m on day 5 of no progesterone and still feeling MASSIVELY better. No bleed as of yet but presume that will happen over the next few days. I can feel my body going through withdrawal and it’s not pleasant but this is NOTHING compared to how too much progesterone makes me feel trust me!
Hope things start to turn the corner for you with your cream trial!
Blue x
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Hey, re the testing, I just had a normal blood test with my NHS GP and the progesterone was very high when I was on the cream. I think it may have flagged as abnormal.
I found the lozenges hit my blood stream quicker and left quicker so it felt more volatile. The cream felt more subtle going in and out but still led to high levels in blood.
The fact I had a much smoother ride the other side of perimenopause (almost post) now that oestrogen has significantly fallen, I suspect the same rollercoaster ride that I had was being impacted by my high oestrogen levels, in how the progesterone displaced the excess oestrogen and dumped it into bowels and back into temporary circulation.
I suspect only megadoses of progesterone cream would have controlled it but that would potentially have brought other issues to the table.
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Thanks Dangermouse.
That's reassuring about the bloods. I've got over the blood discrepancies - I'm just reading too much.
Still feeling hellish on the 150mg. The clinics response was to drop back to 50mg. I felt dreadful on that.
My gut is telling me the cream is just poking at me and giving me bad estrogen responses... I think I need more. Or maybe a different route.
Remembering back to Xmas when I first trialled pills... I had horrific estrogen kickback for 5 days then a switch where that all went away, but I became narky. So oral definitely affected me differently - and that was a very small dose.
Dangermouse - can you recall what dose troche you tried??? I suspect a lower dose troche equates to a high dose cream - but I could be wrong.
So, bloods a week today 🥳 then consult 10 days after that.
I think this is going to be a long road... But hopefully there are still options.
I should add, after stopping the testosterone/dhea I am no where near as calm and relaxed. So it's something I'll probably try again in the future - I've got loads of the stuff in the cupboard now 😬
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Hi there
Some unfamiliar ideas being talked about on this thread....
dangermouse - I don't understand "....was being impacted by my high oestrogen levels, in how the progesterone displaced the excess oestrogen and dumped it into bowels and back into temporary circulation." - what is the basis for this?
I don't know of the mechanism by which this can occur - please explain and if you have any scientific references please do post!
Crispychick - sorry to hear you are feeling rough....
I don't understand this though:
.."My gut is telling me the cream is just poking at me and giving me bad estrogen responses.."
Please explain if possible? I understand ( though not the mechanism) that progesterone can interfere with the beneficial effects of oestrogen such that a higher oestrogen dose is then needed in order to feel better - hence some women actually increasing their oestrogen dose when they are on the progesterone part of cyclical HRT. Stellajane in particular (no longer a member) used to report this and would increase her oestrogen dose accordingly. Personally I haven't noticed (that I need more oestrogen during the prog phase - though I have never tried to increase).
The idea is not that progesterone has any effect on oestrogen levels (as I understand) but that the negative side effects can come to the fore and in a way "drown out" the positive response to oestrogen.
So for example in pregnancy both our progesterone and oestrogen levels are extremely high so we feel simultaneously tired but exhilarated ((hopefully)! This explains also why women on low dose oestrogen but standard, licensed dose of progesterone may still feel rough.
This is a separate phenomenon from balancing progesterone and oestrogen to protect the endometrium.
Hurdity x
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Hi Hurdity
I found this article very good for explaining where I am at in terms of perimenopause, and why progesterone supplementation alone may be beneficial - and much more appropriate than the contraceptive pill for managing my symptoms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987489/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987489/)
As you'll have seen from the thread, I have started low dose progesterone treatment via a compounded pharmacy - as progesterone treatment alone has never been explored with me through my GP or NHS meno clinic.
I have been quite shocked to find my original symptoms ramp up during this progesterone trial. I have therefore highly researched and discovered a phenonomon which I would describe as 'progesterone in low doses, or when starting out, can antagonise the estrogen receptors'. In fact, some say this is why many women on cyclical hrt suffer as the stop/start approach induces this - although I wouldn't like to comment on that.
Although not a scientific paper, I found this, which explains much better than I can, and will allow you to research further, should you be interested.
https://doc.vortala.com/childsites/uploads/88/files/Why-Some-Women-Feel-Worse-When-Starting-Natural-Progesterone.pdf (https://doc.vortala.com/childsites/uploads/88/files/Why-Some-Women-Feel-Worse-When-Starting-Natural-Progesterone.pdf)
Not sure there are any scientific papers on this in the UK. Perhaps it's not been studied. However, there is a huge amount of anecdotal evidevce about this, particularly from America - where they often use progesterone therapy.
I personally find other people's experiences much more valuable than any scientific paper. As I do feel this area of pre menopause is lacking in research and advice in the UK.
Only time will tell if this is what I am experiencing. I currently believe the progesterone cream is not strong enough for me and is antognising my estrogen rather than increasing my progesterone sufficiently enough to bring balance.
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I appreciate my reference to the progesterone cream just 'poking at me' not being one of my better descriptions ;D
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Yes, this isn't really a scientific discussion, for the reasons that Crispy explains, there just isn't enough research into it.
Whether progesterone physically pushes excess oestrogen into the bowels or whether (and I suspect this) it's a more complex mechanism, the result is that progesterone can put a lid on oestrogen spikes. I'm using pedestrian language because the specific mechanism is not clear, only the result.
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Crispy - The lozenges were in 25mg squares and I tried between 25mg and 150mg, all with good results for the first few hours but it seemed to trail off before the next dose was due causing a rush of anxiety, even when taking every 12 hours. I felt like I needed to do every 6 hours so that is why I went back to the cream.
It may build up and then this isn't an issue but I didn't give it that long.
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Thanks Dangermouse. Appreciate you taking time to reply 👍😁
How's the DIM going?
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I agree dangermouse, this is not a scientific discussion. I'm not interested in studies either which very often conflict with each other anyway.
Remember the two disastrous HRT studies that were badly conducted and deeply flawed? Those studies are responsible for making millions of womens' lives utterly miserable because they were (wrongly) terrified of taking HRT. How ironic that one of those destructive studies was called million women study.
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Hi Guys
I’ve just bought yet another book called A Practitioner’s Guide to Physiologic Bioidentical Hormone Balance by Jim Paoletti who is a compounding pharmacist in the States.
It’s got a whole section in chapter 2 regarding down regulation of hormone receptors. It’s all a bit complicated so I’ll have to keep reading it until it sinks in.
What is a bit easier though on page 26 is he says that sublingual or buccal administration return to baseline in approx 6 hours, so you should theoretically dose three times a day. But he says many patients do well on less frequent dosing, but thus may require a slightly larger total daily dosing. A slightly higher dose is needed to maintain threshold levels until the next dose.
Eg a patient using progesterone 25mg sublingually twice a day (50mg total daily dose) would probably do as well clinically on 12.5 mg sublingually three times a day (37.5mg) total daily dose).
He then goes on to say that any increased amount of supplemented estrogen will increase the amount of potentially carcinogenic metabolites, therefore estrogen sublingual or buccal should be administered at least three times a day!!
I’ve been doing it all wrong!
Another very very long section on transdermal use which I can’t even begin to put in this post!
I think you guys very into the technical side of all this would find this book very useful.
That’s my bedtime reading sorted for the next six months! xx
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Great Marchlove.
Problem is, there are books and articles everywhere. I just never know what to believe. :'(
Does it say anything about up regulating estrogen receptors when you first start micronised prog???
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The book is a bible really, no fluffy stuff, just technical.
So the bit I’ve found so far says-
When a women is given estrogen, even estrogen that she does not need, or in excess of what she needs, the first reaction is an increase in the number and sensitivity of estrogen receptors, and symptom management may be achieved. After a period of time, usually one or two months the receptors are down regulated.
Down regulation of estrogen receptors also leads to symptoms of progesterone deficiency. One of the effects of estrogen is the production of progesterone receptors. Excessive estrogen may down regulate estrogen receptors, leading to a deficiency in progesterone receptors.
Progesterone normally down regulates estrogen receptors, a mechanism for controlling estrogen activity. Excessive progesterone can down regulate estrogen receptors to the degree that estrogen deficiency symptoms occur.
Excessive progesterone down regulates receptors typically in a period of one to twelve months after initiation of therapy.
Sorry, it goes on and on.....
I think it might become clearer at the end of the book where there is a whole section on dosing for peri, post and surgical. He talks about hormone holidays to overcome the down regulation problem.
For instance in post (either natural or surgical) he says women using topical progesterone should take a hormone holiday of one day a week.
Peri ladies, lots of dosage suggestions for progesterone depending on if you have pms, cyclically days 14-26.
Estrogen for peri ladies it says for topical start low and increase slowly,
0.05 - 0.20 mg daily, take on days 1-25.
It’s too complicated I’m afraid to give you a definitive answer!
I do hope you’ll buy it though as I don’t think I’ve got the brain to understand it all :-\
xx
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Hi ladies, just a word on the science behind it all (still in its infancy, I'm afraid)
The influence (modulation) of progesterone on ERα (ESR1) or ERβ (ESR2) (estrogen receptors found in the membrane, nucleus and cytoplasm of the cell) and G-protein–coupled estrogen receptor, GPER (found only in the membrane of the cell), dependends on many factors: specific tissue (breast, uterus, ovaries, vagina, brain areas, thyroid, colon, bone, etc), because ER’s regulation is modulated by tissue-specific coactivators and corepressors; status of current and previous hormonal stimulation (oophorectomised or intact ovaries, exposure to HRT), because depending on previous estrogen priming or cotreatment or during postpartum phase when estrogen level sharply rises, progesterone can either increase or decrease the experession of ERα in the hypothalamus https://www.hindawi.com/journals/ije/2015/949085/; the relative levels of ERα and ERβ and the corepressors and coactivators can change with sex, age, disease, and tissue thereby altering the response to estrogen; and, last but not least, the type of organism studied, because most of the studies have been carried out in animals or in human breast cancer cells in vitro, and their results might not always correlate with what happens in women using HRT.
‘progesterone and vitamin D negatively regulate ER levels’
https://www.ahajournals.org/doi/10.1161/circresaha.115.305376
‘PR (progesterone receptor) is an upregulated target gene of ER, its expression is dependent on estrogen, and PR can modulate ER action.’
https://www.dovepress.com/the-role-of-progesterone-receptors-in-breast-cancer-peer-reviewed-fulltext-article-DDDT#cit0008
‘Progesterone inhibited oestrogen-mediated growth of ERα(+) cell line xenografts and primary ERα(+) breast tumour explants, and had increased anti-proliferative effects when coupled with an ERα antagonist.’
https://pubmed.ncbi.nlm.nih.gov/26153859/
Progesterone modulation of D5 receptor expression in hypothalamic ANP neurons, the role of estrogen
https://www.nature.com/articles/4000781
Crosstalk between progesterone receptor membrane component 1 and estrogen receptor α promotes breast cancer cell proliferation
https://www.nature.com/articles/s41374-021-00594-6
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Wow. A lot of worthy effort there ladies. :)
That's all a bit much for me though - I just want to know if, as described anecdotally in the States, my low level application of progesterone cream, can indeed make my high estrogen symptoms worse. :-\ thereby demonstrating the need for a higher dose.
Uptick - are you confirming that in any of that information??? I'm not clear.
Maybe this bit? -
'progesterone can either increase or decrease the experession of ERα in the hypothalamus'
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https://www.amazon.co.uk/exec/obidos/ASIN/B088GJF6QK/menopausema0e-21
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So if we supplement with Vitamin D, are we lowering our oestrogen levels? So complicated!
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Hi Guys,
My last post with the Amazon link wasn’t the link I sent by the way, I think it got changed. Never seen that book before! X
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That's all a bit much for me though - I just want to know if, as described anecdotally in the States, my low level application of progesterone cream, can indeed make my high estrogen symptoms worse. :-\ thereby demonstrating the need for a higher dose.
Uptick - are you confirming that in any of that information??? I'm not clear.
Maybe this bit? -
'progesterone can either increase or decrease the experession of ERα in the hypothalamus'
Hi CrispyChick,
What do you mean by 'my high estrogen symptoms'?
What are your current symptoms? Sorry if you have already mentioned them, but it's useful to have them all listed in one place to get a better picture of what's happening with you.
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Sorry Uptick. I must have misunderstood.
I thought the scientific articles you posted were in relation to Hurdity's request to see the science in relation to a discussion on how progesterone affects estrogen receptors, with points Hurdity queried from myself and another member?
It's a long saga I'm afraid. It's all in this thread as some of us are using 'alternatives' in an attempt to feel better.
In short. I'm 45. Estrogen levels are good. Been suffering horrifically for years from dizziness, nausea, brain fog, aches etc NHS meno clinic only offered pill - no joy after trying them all. Then tried HRT. The estrogen part alone made me feel poisoned. Now seeing bhrt clinic. Found progesterone to be very low. Now supplementing with progesterone.
It's early days. I'm on a low dose of progesterone. There is a huge amount of anecdotal evidence to suggest that low doses antagonise the estrogen receptors and make symptoms worse. Simply, I'm wondering if that is what I'm experiencing.
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Hi Hurdity
I found this article very good for explaining where I am at in terms of perimenopause, and why progesterone supplementation alone may be beneficial - and much more appropriate than the contraceptive pill for managing my symptoms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987489/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987489/)
As you'll have seen from the thread, I have started low dose progesterone treatment via a compounded pharmacy - as progesterone treatment alone has never been explored with me through my GP or NHS meno clinic.
I have been quite shocked to find my original symptoms ramp up during this progesterone trial. I have therefore highly researched and discovered a phenonomon which I would describe as 'progesterone in low doses, or when starting out, can antagonise the estrogen receptors'. In fact, some say this is why many women on cyclical hrt suffer as the stop/start approach induces this - although I wouldn't like to comment on that.
Although not a scientific paper, I found this, which explains much better than I can, and will allow you to research further, should you be interested.
https://doc.vortala.com/childsites/uploads/88/files/Why-Some-Women-Feel-Worse-When-Starting-Natural-Progesterone.pdf (https://doc.vortala.com/childsites/uploads/88/files/Why-Some-Women-Feel-Worse-When-Starting-Natural-Progesterone.pdf)
Not sure there are any scientific papers on this in the UK. Perhaps it's not been studied. However, there is a huge amount of anecdotal evidevce about this, particularly from America - where they often use progesterone therapy.
I personally find other people's experiences much more valuable than any scientific paper. As I do feel this area of pre menopause is lacking in research and advice in the UK.
Only time will tell if this is what I am experiencing. I currently believe the progesterone cream is not strong enough for me and is antognising my estrogen rather than increasing my progesterone sufficiently enough to bring balance.
Hi Crispychick
Thanks for taking the trouble to reply to my questions.
I understand you are trying to work out the best way to feel better, having tried lots of different regimes and the reasons you are not feeling so good.
In terms of other people's experiences - these are of course very valuable and can be reassuring but the underlying treatments and the rationale behind them must be based on sound science - as I know you appreciate.
There are lots of "theories" out there and anecdotal accounts whihc may or may not have any basis to them or may not be universally applicable.
If you don't mind my saying I think you're making it too complicated by focussing on receptors and trying to work out precisely what is happening. Our endocrine system is extremely complex and yes there are feedback mechanisms going on, and different scenarios at different stages in our reproductive lives.
I can't remember off-hand what stage of menopause you're at in terms of cycles - before you started HRT - whether you are early or late peri and how long this has been going on?
Aside from that, the way I see it as I remember - your oestrogen levels are average and not deficient, maybe you're not experiencing flushes and sweats? It all depends on your natural cycles. You are supplementing with progesterone (cream.lozenges) and not feeling any better and increasing the dose makes you feel worse. To me this suggests you don't need to supplement with progesterone.
I had a look at the reference (the first one - the paper). The guy who wrote it there is using progesterone to treat peri-menopausal symptoms in a pharmaceutical way rather than physiological - ie as a drug rather than replacing what is missing. This is a well known phenomenon and is actually reported on this website - and works with artificial progestins as well as progesterone.
"HIGH DOSE PROGESTOGENS (MPA) Medroxyprogesterone Acetate and Megestrol Acetate (Megace) are synthetic forms of progesterone which sometimes reduce hot flushes and sweats. They also offer a degree of bone protection. They have been prescribed to women who cannot take estrogen after breast cancer treatment but concern currently exists about the possible effect of progestogen on the breast and so are now used less often. The side effects of these drugs can sometimes outweigh the benefits. In particular there is known to be an increased risk of clotting with higher doses of progestogens. "
https://www.menopausematters.co.uk/prescribed.php
So you don't actually need extra progesterone as such unless you are still having cycles but some are anovulatory so you could be getting erratic high spikes of oestrogen - in which case taking it will help regulate your cycles, and maybe help prevent the spikes?
In addition the dose the guy recommended is indeed a pharmaceutical dose - he recommends 300 mg taken daily. This is very high - and women only take this for endometrial protection on higher doses of oestrogen as HRT, if the endometrium is not protected.
If you want to use it in this way - eg to prevent flushes and sweats - then you might as well use Utrogestan which is the cheapest and safest way to take "natural" progesterone at such high doses. If you wnated to space it out to prevent spikes then perhaps take it 3 times per day though the guy in the paper I think recommended to take it in one dose at night.
I haven't gone into the receptor issue and if you're not taking oestrogen in any case I don't think it is especially relevant to your situation?
I know this is obvious but I presume you've had other things ruled out for your symptoms if they've been going on for that long?
Also have you tired any of the pills like Zoely or Qlaira which regulate your cycles and also give progestogens - OK not natural ones - but may also be beneficial?
Just a few thoughts off the top of my head but really concerned that yuo are spending lots of money going down this route (your choice obivousdly!) when it's not doing any good and I'm not sure the theory (the receptor issue) has any proper scientific basis.
In yur position I would see if I could stand back and say - try this or that - if that makes me feel worse then try something else. Each regime needs to be tried for a reasonable length of time....
Hope this helps a little and that you get some answers and the right treatment
Hurdity x
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I appreciate my reference to the progesterone cream just 'poking at me' not being one of my better descriptions ;D
Haha - nothing wrong with describing things in easy to understand language - but I just didn't know what you meant by "poking at me" at all!!! ;D
Hurdity x
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Yes, this isn't really a scientific discussion, for the reasons that Crispy explains, there just isn't enough research into it.
Whether progesterone physically pushes excess oestrogen into the bowels or whether (and I suspect this) it's a more complex mechanism, the result is that progesterone can put a lid on oestrogen spikes. I'm using pedestrian language because the specific mechanism is not clear, only the result.
Like I just said to Crispychick - nothing wrong with using "pedestrian language" at all - in fact explaining difficult concepts in lay-women's language is great! However it still has to mean something and I didn't know what you meant at all - hence my question.
In terms of "Yes, this isn't really a scientific discussion," - of course it isn't an academic discussion but it seems to me to be scientific - there are lots of references to papers, theories, blood tests, and the discussion is around specific hormones, receptors and all sorts - that is all by its very nature "scientific". From long experience of reading about all of this (not much recently though) some of what is written is just someone's theory but doesn't necessarily have any scientific basis - well no evidence to support it. Unfortunately there are sites and companies - mainly in US - where the health system is different - where practitioners make lots of money from the products sold as a result of their theories . In UK not so prevalent but some of the private unregulated clinics also do so.
Hurdity x
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I agree dangermouse, this is not a scientific discussion. I'm not interested in studies either which very often conflict with each other anyway.
Remember the two disastrous HRT studies that were badly conducted and deeply flawed? Those studies are responsible for making millions of womens' lives utterly miserable because they were (wrongly) terrified of taking HRT. How ironic that one of those destructive studies was called million women study.
MaryG please see my reply to dangermouse - about whether the discussion is scientific or not.
"I'm not interested in studies either which very often conflict with each other anyway. "
Yikes! How sad.... If it wasn't for studies we probably would not be alive today cf vaccinations and treaments for disease! You wouldn't be able to take the HRT that you do. The whole of medicine is based on studies! Yes studies do often conflict especially when one considers different populations - because there are so many variables and different assumptions and treatments. But there are many reviews which look at individual studies, sometimes combine them together, look at the assumptions, and try to come up with a better evidence based picture of what is happening. A great example of these are the Cochrane reviews.
Using the example of the flawed HRT study which did condemn many women to years of misery - is not a reason to discount all studies!
If you prefer to limit the basis of the discussion maybe start a private chat somewhere....
Personally I am interested in reading what is being said and understand the basis for it - and if I can, help if possible. We all want to feel better and to function as optimally as possible in our (hopefully) prolonged post-menopause years.
Hurdity x
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So much for the Cochrane reviews....
https://blogs.bmj.com/bmjebmspotlight/2018/09/16/cochrane-a-sinking-ship/
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Hi CrispyChick, don’t be sorry, you haven’t misunderstood my post. It’s just that your question doesn’t have a straightforward reply, given the many variables that are at play when it comes to hormonal balance, it’s a dynamic process, it’s impossible to reach that sweet spot and stay on it forever. Many women have been on HRT for years just to find a return of symptoms, particularly those who still have their ovaries (they’re not entirely dead in menopausal women), and that is obvious when you see how oophorectomised women struggle to achieve the right oestrogen dose and even sometimes have to consider taking progesterone even though it’s not needed for the purpose of protecting their long gone womb, assuming they had a hysterectomy as well. Other women have to decrease the dose of HRT, it seems they don’t need high doses as they age, because sometimes high doses cannot control symptoms just as low doses, that’s a well known type of hormonal response called ‘an inverted U curve’, when you get the best results with a medium dose. This is because sex hormones don’t exist just for the purpose of sexual developement and reproduction, they are involved in the regulation of many physiological and pathological processes. There are sex steroid hormone receptors all over the body, brain, breasts, ovaries, bones, blood vessels, you name it. Oestrogen is not only produced by ovaries, adrenal glands and fat tissue, but also by the stomach! So, depending on each particular case, the answer to your question will vary as much as the amount of symptoms that are possible in peri and menopause, because at the end of the day, the HRT mantra is ‘trial and error, because each woman is unique’.
That said, let’s analyse your particular case. You’re in perimenopause, so anything is possible regarding oestrogen levels, at any given time, while progesterone levels are steadily decreasing with time. The fact that you were on the pill and have tried many of them with no luck is a good indicator that you have a high sensitivity to sex hormone fluctuations. Moreover, all these attempts might have disturbed your hypothalamic-pituitary-adrenal (gonadal) axes. Your symptoms, particularly dizziness and nausea, point to a sensitivity to fluctuations. Brain fog and aches are very common in many other conditions, so they’re not very helpful here, unless they have a specific pattern that can be related to your menstrual cycle. I’d be interested to know the ‘etc’ as well (migraines?), because each and every symptom is important when you need to figure out if you need more or less oestrogen and progesterone (here, I’m assuming you are using ‘alternative progesterone’ because all the progestins and micronised progesterone have failed, as you said, because progestogens are only needed for womb protection on conventional HRT, but not on the alternative approaches). When you say the oestrogen part alone made you feel ‘poisoned’, I also would like you to be more specific about the symptoms, because high oestrogen from HRT preparations is not a problem in perimenopause when extremely high levels occur, but depending on your symptoms, it could mean you’re hypersensitive either to oestrogen itself (very rare) or more likely to its fluctuations. If that’s the case I’d say you are an allergic type of person, am I right?
As for the ‘alternative progesterone’, I just would like to make a short comment (thank the Lord, haha). Progesterone is a very unstable molecule when exposed to light, I suspect that is one of the reasons why there are no conventional progesterone patches available to date. So, I would favour the lozenges over the cream, because it’s possible that most of the progesterone will no longer be active when you expose the cream to light. I suppose each compounded pharmacy has its own formula to counteract this, but the added fillers might also contribute to trigger a hypersensitivy reaction on a predisposed person.
The low doses of progesterone ‘antagonising the oestrogen receptors and making your symptoms worse’ is possible, but unlikely, as an explanation for your symptoms, because the amount of progesterone absorbed wouldn’t reach most oestrogen receptors, given the short half life of progesterone before it’s metabolised.
So, tell me more about your never ending symptoms and how your periods behaved before the pill, if you had PMT, cramps, irritability, low mood, and so on.
Sorry for the late and long reply.
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You’re an inspiration to us all Uptick and encourages me to keep reading and learning, even though I have no scientific background.
CrispyChick is in good hands with you and all of us with her on her voyage x
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Thanks folks. Really appreciate all the interest and help. :)
I'll try and explain it all succinctly (try ;))
So... Back in the day never had any real problems. Always had light periods, a bit of endo pain each month, on and off pills all my life. 2 babies. Easy, straight forward pregnancies. Conceived very very easily. I did suffer anxiety after the births, which I now believe was hormonal. Not a migraine sufferer.
Hit 40. Stopped the mini pill (cerazette). I liked it because I didn't get any periods, but it left me a little flat and i often experienced periods of narkiness and paranoia. Very low libido. However, I only stopped because my husband forgot to pack my bag for a trip!!!
8 weeks later - immense brain fog and pmt descended. Like horrific. I was foggy, extremely grumpy and paranoid. Was awful. Seemed to last a good 2 weeks each month.
Agnus castus trial - 800mg of tablets - worked amazingly. No pmt etc... My libido went through the roof. Sadly I started getting extreme daily migraines, so I stopped cold turkey. Migraines stopped.
8 weeks later - the beginning of the hell I'm still in. 4 years ago now. I woke one day with extreme dizziness and nausea and just felt ill. I had vertigo. My ears felt full. I felt very very ill. Lost my appetite and lost weight.
Tests to date include:
CT scan
MRI
24 hour blood pressure monitor
Heart assessment - I forget the name. Ecg maybe.
Endoscopy (incl. Celiac test)
Vestibular rehabilitation
Nose camera
Awaiting nose surgery as I do have severe rhinitis and nose polyps.
Nothing ever found. Except my nose/sinus issue - but I've had that all my life - although it does play a big part now.
Yes. I have allergies - mainly hay-fever and asthma. Allergic to dogs and have oral allergy syndrome. I take fexofenadine every day and a steroid inhaler.
Restarted cerazette - although it helped a bit, I was suffering with really bad low moods on it, like pmt. And I was still woozy at times (no longer vertigo). Just never right. I would have long episodes of pmt and paranoia now. I also developed gastritis on it. Now resolved.
Then tried every combined pill under the sun. Interestingly, my first trial on the combined pill brought my initial vertigo and horrific symptoms back after 7 days... Then it calmed (the prog cream is doing the same). Some pills made me worse, some gave me other side affects, some made me feel very ill. I also now get migraines. I use triptans.
The combined pills caused my nose/sinus to flare - it feels fizzy and inflamed on the right side - and can lead to a migraine. Off all pills, it goes away.
Then came my trial of HRT. Tablets. Took estrogen for 2 weeks and I have never felt so ill. Poisoned, dizzy, sick, immense brain fog... Felt so so ill.
So, without any further help from my GP or NHS meno clinic I have resorted to a bhrt clinic for help. There I am told I have very low prog. I can understand that, as I've just recently started to have annovulatory cycles. Plus, I believe the years on the mini pill with the progestin may have lowered my own progesterone. I'm told my estrogen level is good for my age. Not high. But not low.
I was prescribed a very low dose micronised prog to start with. 25mg for 20 days in luteal phase. There was a bit of confusion, so I started on tablets.
First 5 days - horrific. Triggered my initial symptoms of dizziness, nausea, felt poisoned and vile. Ears full. Loss of appetite. Migraine. Then day 6 it flipped and I felt narky for the next 5 days, but the other symptoms calmed. Stopped for a period.
The next 12 days on nothing I was horrific. Like the early days. Then started 25mg cream for 20 days. No improvement.
Then 50mg cream for a whole month and I felt worse than ever. Then up to 150mg...where i've really suffered for the last 2 weeks - woozy, soaced out, nausea, vile, poisoned. Loss of appetite and on top of all the symptoms my nose/sinus has flared - leading to 1 migraine. Now dropped to 100mg.
Absorption of cream - there absolutely is. My mood is good and stable on any cream dosage (much more stable mood than on any pill) My period on 50mg cream was the lightest it had ever been and, for the first time with a natural period, I had absolutely no endo pain. I've not reached the period stage on the 100/150mg trial yet. Without a doubt I won't get a period unless I stop the cream and withdraw.
So there are good things about the cream - stable, better mood and pain free very light periods. But I'm still feeling awful with wooziness, nausea (like motion sickness - not stomsch nausea), fog and now my nose flare.
I find it interesting that the 25mg tablet switched 6 days in and all these symptoms went. Not experiencing that on the cream.
The narrative from the states is my dose is too low (Hurdity - this is not from websites selling prog cream, this is from real people in a group like this, trying to feel better - many seem to feel better on higher doses). My clinic say I shouldn't be feeling bad on low doses :-\ but maybe the UK are just behind the states in their understanding 🤷♀️
I'm having bloods drawn this week to check absorption then I'll be going through all this with the clinic. I'm scared of higher doses, as my nose/sinus /migraine has flared at the 150mg.
Uptick - I take your point on cream and light and I'm also thinking a different route of absorption might be better...
Hurdity - as I've said before, I'd love nothing more than to get help for this on the NHS. Would 100mg utrogestan be a good fit? ... I don't know. I'm in Scotland - the fight for utrogestan with hrt is huge... Never mind trying to get it on it's own!!! Truthfully - I don't have the fight in me at the momement. But absolutely, this expensive regime I'm currently under only has one last chance before I jump off!!
Other info - no sweats or flushes (although one of the combined pills did give me mega night sweats). I actually think I'm sweating less overall since being on the P cream.
Had a pelvic scan before the bhrt clinic would treat me. All good. Thin endometrium. Ovaries all fine. Nothing to be seen. So, that's reassuring. Also thyroid all fine.
Any thoughts on that long saga??? Apologies to those that have heard it all before ::)
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Wow Uptick, that is one superb post, you really get it! Every point you have made makes complete sense and I can relate to many of them.
The fact that the menopause is a constantly evolving situation makes it difficult to treat and I have found that I can't tolerate high doses of oestrogen now but fortunately I don't need it. As we see time and time again on here, women find their HRT regime suddenly stops working so always be prepared to tweak your dose.
A doctor I saw recently admitted that the medical profession don't have all the answers to the complexities of hormones/menopause and I respected his honesty.
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Crispy, I have read your post and it sounds like many of us have the same underlying problem with different manifestations.
At the beginning of your post you said you are not a migraine sufferer but later on you mention migraines. This is significant because it could explain many of your symptoms like nausea, loss of appetite, low mood, dizziness, sinus problems, nasal drip, full ears, that very ill feeling. Migraines do not always mean headaches, they are often silent. It is very common to start having migraines at the onset of the menopause and they often go undiagnosed. Sorry to burden you with yet more reading but please do read the work of Professor Anne MacGregor who is a hormonal migraine specialist.
You mentioned that you got out of bed one day with nausea and full ears. I would say that was the very beginning of peri menopause and I had a very similar experience myself aged 35 back in 1996. I was on holiday in Portugal at the time and suddenly and developed mild nausea for absolutely no reason - I developed eye floaters shortly after that. All tests came back clear, the doctor was baffled, same old story. It went on for years and then in 2004 (aged 43) the silent migraines started - 30 minutes of visual disturbance but no headache.
I now know that the cause of all these symptoms is unstable hormones caused fluctuating oestrogen and depleting progesterone levels. The question is how to treat it. As I mentioned before, in early menopause a very high dose oestrogen works well and I followed this regime for a number of years but it's not sustainable long term and probably not an option in your particular case. Certain contraceptive pills do a good job of overriding the cycle and cutting out oestrogen spikes and then the other option is smothering the oestrogen spikes with progesterone either by way of a pill, Utrogestan on the compounded route.
As Uptick rightly points out, progesterone has a short half life so you may need to split the dose by 12 hours and even consider a different delivery method. Why not discuss the progesterone drops with the doctor? I find them to be excellent with no side effects at all.
If you want to try Utrogestan why not just buy it from an online pharmacy? You can buy it over the counter and without a prescription in Spain.
I have no idea if this is any help but I'm on half a pump of Oestrogel and I have gone back to 50mg progesterone from 25mg and I feel much better for it. Thanks dangermouse!
Sorry this is such a nightmare for you and that it's so difficult to get proper help. I know him you feel, I struggled for years and had to work most of it out for myself.
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Hi CrispyChick
I confer with what Mary G says about the silent migraines and trying a different route from the cream.
My progesterone experience-
Utro 100mg (either vaginally or oral) severe nausea, allergies (itching and runny nose), felt like I was being poisoned. Mood good
Compounded cream - 25mg - same symptoms but not quite as bad. Mood not as good.
Lozenges 25mg - mouth ulcers and sore gums. No nausea
Same lozenges orally - no nausea or allergies. Mood good but felt short half life. So now take 25mg in morning and 25 mg at night. Best so far.
I expect Uptick will have further thoughts and advice. xx
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Hi CrispyChick
I confer with what Mary G says about the silent migraines and trying a different route from the cream.
My progesterone experience-
Utro 100mg (either vaginally or oral) severe nausea, allergies (itching and runny nose), felt like I was being poisoned. Mood good
Compounded cream - 25mg - same symptoms but not quite as bad. Mood not as good.
Lozenges 25mg - mouth ulcers and sore gums. No nausea
Same lozenges orally - no nausea or allergies. Mood good but felt short half life. So now take 25mg in morning and 25 mg at night. Best so far.
I expect Uptick will have further thoughts and advice. xx
Marchlove, our experiences have been very similar. I really didn't get on with Utrogestan, it was vile! The 100mg dose is too much in one hit and although the vaginal application was better, it was nowhere near as good as the progesterone lozenges/drops. However, I suppose Crispy might as well try it and rule it out if nothing else. Who knows, she may even like it.
Progesterone is very difficult to administer which is part of the problem.
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I do still have half a bottle of those 25mg capsules... I could try a quick hit of 4x and see.
I'm going to have my bloods on Thurs, first and foremost. I do think I need to try a different route. It'll all be put on the table at my consult in 2 weeks...I'm paying enough, so I'm hoping they have the expertise and have seen this before?!
I was chatting with a lady in my other group who didn't get on with the cream particularly well either, then she tried it vaginally (I'm not brave enough) and vola! She used it 3 months like that whilst waiting to see a hormone clinic and now has lozenges. It was an absorption issue - she did indeed need a bigger hit of prog!
I do split my dose. I know I need to do that as I've tried both ways. So I do half every 12 hours.
Thank you Mary - it's nice not feeling so alone :) not that I'd wish this on anyone else. I will look into the silent migraine and Prog Macgregor this evening. Yes, I do now get headache migraines. Often my nose/sinus feels connected. I struggle to imagine the rest of it being migraine though, as its full time relentless... But, what do I know 🤷♀️
So, it does sound like you all have had to try different routes of micronised prog... I am certainly open to that. I am nervous of high doses on other routes though - as I'm sure you all remember my cry for help post a few weeks ago when my 150mg of cream spaced me out so so bad. :-\
Who do you see Marchlove? I know I attend the same clinic as Mary. X
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Actually, I'm going to add this - as it could be pertinent.
During my first pregnancy I fell ill with labyrinthitis. Well, that's what they chalked it up to. Horrific. Woke one morning feeling like I was on a roundabout after drinking 2 litres of vodka. I was 5 months.
Now, I experienced this again 6 months before everything started 4 years ago. I had a session of acupuncture. Next day - floored with so called labyrinthitis. I'll never touch accupuncture again.
So when this started 4 years ago - everyone, including myself, thought labyrinthitis, again. Only this time it never left... Although it morphed into other things and I no longer get vertigo. I'm very grateful for that. But note from my main post, my first trial of a low dose combined pill 2 years ago brought on vertigo...then it subsided.
Don't know if connected... ???
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Oh buddha, not the labyrinthitis chestnut again. This is a much favoured dumping ground for clueless doctors I'm afraid. My mother was diagnosed with it but she was actually having a stroke. She was dizzy (so much so, she kept falling over) vomiting and had a headache. I knew the diagnosis was wrong, it was blindingly obvious.
In your case Crispy, it sounds like a hormonal migraine. I have never been pregnant (through choice) but I wonder if I would had migraines had I ever been pregnant. Menstrual, progesterone withdrawal, non aura migraines usually improve during pregnancy but oestrogen driven migraine with aura often becomes worse.
I'm now thinking you need to consult a hormonal migraine specialist too but first of all, please speak to the doctor at the clinic and give the pharmacist a call, she is very knowledgeable.
Sorry to state the obvious but you need hormone stability and fast. In peri menopause, that either means very high oestrogen or very high progesterone to override the cycle and crush the spikes.
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Oh geez. I hope your mum was OK after that bad diagnosis. :o
Yes, it very much has felt like a diagnosis thrown at me when nothing else fits. I've often wondered if it was connected. It did last a few weeks though, so it did seem to fit the labyrinthitis diagnosis at the time. Didn't experience anything like it second time around - although I was very nauseaous, so much more text book.
It was that early diagnosis at the start of this mess that led me to pay for vestibular rehabilitation. As interesting as it was, I don't think it helped.
I've not really wavered from this idea either Mary - I too think I'm having hormonal spikes and I think higher dose prog might be my cure - it's certainly what they talk about over in the US. I'm dissapointed to be feeling a lot worse than before I started the prog. But, from what you ladies have experienced, dose is everything.
I did think about calling the pharmacist. I guess they might have seen this before... ???
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Proof of absorption - I dropped from 150mg cream to 100mg 5 days ago and its brought on a withdrawal bleed today.
Grrr really annoyed with myself as I'm getting my day 21 bloods on Thurs!!! Will this mess it up??? Or is it just artificial? :o
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Thank you, Marchlove and Mary G, we’re just scraping the surface of a huge iceberg, really.
Marchlove, I think it’s wondeful that someone without scientific background is so enthusiastic about science, it’s a fascinating world, and despite all its ups and downs, which are intrinsically linked to all things human, it’s the best source of reliable information we have so far. It’s not an easy task to navigate through so many articles, many of them are utterly useless (unfortunately no one is immune to media, money and vanity, scientists included).
Hi CrispyChick, maybe your own cycle is kicking in? If not, then you’re right, the progesterone cream is doing its job. Why are you having your hormone blood levels tested, specifically? If you’re in perimenopause they are bound to fluctuate, so it’s possible that the results won’t be very useful, but it will be interesting to know them all the same.
Regarding your symptoms, I agree with Mary G, your doctors should consider silent migraines instead of labyrinthitis. Maybe you have always been prone to hormonal migraines, the thing is both pregnancies and birth control pills might have been useful to counteract the normal cyclical fluctuation and you have never been diagnosed simply because, apart from those couple of times, you have never had proper migraines. In perimenopause the fluctuations are huge and neither birth control pills nor HRT might be enough to override your own hormones. If your current symptoms are caused by declining progesterone (and its role in balancing oestrogen actions in the brain), and if the progesterone cream is being absorbed, then you could stay a bit longer on a single dose, because hormones take time to achieve a steady state, at least in specific tissues like the brain (remember that progesterone half life in the blood is short), and constant changes are bound to take you back to square one, and actually cause more symptoms or worsen the current ones.
Are you taking any other medication? I think I’ve read you have been on testosterone and DHEA? Are you still taking them? If you are, which are the dosages (doses, number and frequency of doses)? Many drug interactions are possible when replacing hormones and pro-hormones (DHEA), particularly progesterone, which induces liver enzymes, mainly CYP3A4 which is extremely important to remove drugs and toxins in the liver and intestines (some antihistamines) and is also involved in the synthesis of cholesterol, steroids and other lipids. This enzyme is inhibited by grapefruit (fruit and juice) which can increase the bioavailability of many drugs and toxins. On the other hand, it can be induced by St. John’s wort preparations. You can read the most up to date information regarding these complex interactions here https://www.fda.gov/drugs/drug-interactions-labeling/drug-development-and-drug-interactions-table-substrates-inhibitors-and-inducers Agnus castus also can interact with oestrogen and birth control pills, but I’m not sure you have taken it along with them? This interaction is anecdotal, because preparations vary and, being a supplement, they’re not subjected to extensive testing. You can read the European Medicines Agency monograph on Agnus Castus here https://www.ema.europa.eu/en/documents/herbal-monograph/final-european-union-herbal-monograph-vitex-agnus-castus-l-fructus-revision-1_en.pdf
I’m going to post later on something that I think is relevant regarding progesterone metabolism, particulary the role of neurosteroid allopregnanolone on mood symptoms. Do you have any mood symptoms?
To sum it up, it’s complex. One radical option is to stop taking everything (assuming you’re not in need of contraception) because it’s impossible to know what your own hormones are up to while taking so many different drugs, even if you’ve not been taking them for some time, because some effects might take more time to wear off (some women become pregnant after missing one single dose of a contraceptive pill while others might take up to one year to have a successful pregnancy after stopping it). I would like to tell you my own experience, regarding perimenopause, menopause, migraines and HRT. I had the most horrendous time in late perimenopause, hot flushes, disturbed sleep, anxiety, panic attacks, aches and pains everywhere (diagnosed with fibromyalgia), migraines with aura, doom and gloom on a daily basis. I tried patches and Utrogestan for 3 months, they did absolutely nothing to help my symptoms, but also brought in another terrible one, suicidal ideation, besides worsening migraines (I had migraines my whole life, but I’ve never been pregnant and I only took the pill for 5 years in my 20’s). I decided to stop the HRT and brace myself for the war. The symptoms have subsided to a very manageable point. I still have some hot moments, but I have learned some useful coping strategies. I no longer have migraines (although they have turned into mild to moderate headaches, nothing compared to the previous ones though, accompanied by visual aura, nausea, vomiting, vertigo), no anxiety, no panic attacks. Aches and pains everywhere, but not all the time, most of them are probably connected to other causes, like lack of proper exercise, too much time spent in front of a computer/phone, and the lifetime migraine-associated pain syndrome; people predisposed to migraines will always have a high sensitivity to changes in routine (sleep, food, clothes, weather, you name it) and the brain usually responds with migraine symptoms, which do not always result in a headache, as Mary G has pointed out, the so called silent migraines. I don’t know if you can stop taking everything, because maybe you have to function properly at work, with kids, a husband and so on. I had to ditch almost everything in peri and I know this was a sort of privilege, albeit not without consequences. I feel much better now, I’m not symptom free (who is?) but I now have some sort of resilience that is enough to get on with life. We will never have 'our self back, our life back', this is wishful thinking, life goes on and we have to adapt to it. If you can stop taking all drugs (menopause related) for at least 3 months (I don’t know the science behind this, but it seems to work), and see where it will take you, and after that, start again, one drug at a time, giving each one of them another 3 months to stabilise, maybe it will be easier to figure out what’s the best regimen for you. It’s not the ideal thing to do, but it’s an option. You might even feel better on your own stabilising hormones and decide for a low dose HRT after you reach menopause, just for the sake of your bones and cardiovascular health. I haven’t decided that yet, but I have idiosyncratic drug reactions due to an overreactive immune system and general genetic ‘weirdosity’, that prevent me from taking many drugs, which hopefully is not your case.
Sorry again for the long reply.
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Just a quick one (phew). CrispyChick, the withdrawal bleeding (or period) won't affect the blood tests. Good luck 🤞🏻
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Uptick - thank you so much for taking the time to try and help.
Good news on the blood tests then. Its maybe just 'spotting' rather than a period. I'm still on the 100mg. It's 100% the prog withdrawal. I never ever spot or random bleed. But it's good news, as it means I'm absorbing. But I still think not enough. An alternative method of prog is my next step I think.
Thank you for openly and honestly sharing your story. It is good to hear you are no where near as bad as that now and things do settle into a new 'normal'.
Truth be told, my new normal is no where near as bad as it was 4 years ago. However, these progesterone trials have brought those early symptoms flooding back, as did my first trial on the combined pill. However, my latest 'normal' is no life at all...
I'm having the blood tests, at the request of my bhrt clinic, to see if I'm absorbing the prog cream. I need to take the cream at a specific time that day.
In perimenopause the fluctuations are huge and neither birth control pills nor HRT might be enough to override your own hormones. /i] I agree. The pill was not strong ecough. Interestingly I was worse on the low dose estrogen ones. The ones they like us older ladies to take!
Thank you for your thoughts on the prog cream. Indeed I've been upping and downing like a yoyo. Interestingly though, I was terrible on 25mg, terrible on 50mg and horrific on 150mg but now I'm much improved having dropped to 100mg. When I say improvement I mean just more back to 'normal'. So no real inprovement but whatever triggered the stimulation of my original symptoms, seems to have calmed. I definitely think it's worth continuing and I pray my clinic have some expertise and advice.
Yes, I have a huge amount of mood symptoms - however, feel stable in my mood on the prog cream. Which is great. In fact I've been really low today, alongside the withdrawal bleed. So it's stable until I withdraw some (or all).
I took test and dhea for 8 weeks. It calmed me. But I stopped about 4 weeks ago in case of interaction.
I don't touch grapefruit as I'm on daily fexofenadine.
I understand your point about stopping everything, but each time I do this, I have 8 manageable weeks then I get bad again. Obviously if the progesterone doesn't work, I'll have no choice. But, I'm in the system, I've paid a lot of money, i need to continue to see if I can find help. And yes - I have two dear boys who reply on me! I regularly feel like a failure in that department!!!! :'( The most part of the reason I keep trying things is to get better for them. :) so, I'll plod on...
P. S love the word weirdosity ;D
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Thank you, CrispyChick. At the risk of being thick, I have to ask you which symptoms do you want to control first? Because it's tricky to control them all at the same time.
Have you tried taking a different drug for your allergy? Although fexofenadine is a good drug, it can cause side effects like headache, dizziness and nausea, particularly if taken every day for a long period of time. All antihistamines have side effects but maybe it could be helpful to have a break or switch to another type to see if your symptoms improve.
The good thing about progesterone is that it seems to be helping with your mood issues, and I will explain why, but that will have to wait until I have a break from work to post about the link between Allopregnanolone and mood.
Have you tried Bijuve? Do you know if it's available on your local NHS? Is it Lothian? I remember they don't prescribe Utrogestan but maybe Bijuve is s different story?
Stay positive, you'll get better and you'll be there for your boys . It's just a matter of patience and time to ride out the storm that is perimenopause.
PS. 'Weirdosity' is a dear friend's creative way of describing her menopausal/ageing woes and coincidentally (not) she's also a migraine sufferer and a former patient of Prof Anne MacGregor.
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Thanks Uptick.
Feeling dreadfully spaced out on my fake period /real period today. Totally away with the fairies. :-\. I feel now that the 100mg prog cream is doing nothing.
Anyway, in answer to your questions - never heard of bijuve. A quick Google and it's a daily pill of estrogen and prog??? After my HRT trial last year, and good levels in my bloods - I don't want extra estrogen.
I've had many trials off fexofenadine - trust me, it's not causing me any problems.
I'm terms of synptoms - my worst are definitely the dizziness/wooziness, nausea, motion sickness and migraines. Closely followed by mood swings and immense brain fog. Combine the lot and I'm not a pretty picture.
As we've now seen, trials of different hormones, currently prog, but previously combined pill, can send my symptoms into overdrive... I definitely need stability.
I'm still hoping higher dose prog (probably with a different route to cream) is the key...
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So my feeling much much better on no progesterone came to an end. Of course it did. I did try reducing the oestrogel at the same time which in hindsight wasn’t a clever idea. I’m now back on the original dose of oestrogen which is alternating 2 pumps one day 3 pumps the next. I tried going back on the lozenges & then came off as I was feeling bad & wanted to try & pinpont if it was the progesterone. Feeling absolutely no better being off them with headaches, fatigue & total brain fog. Seem to have these symptoms whatever I do or don’t do. Im wondering now if I should try taking one 10mg lozenge every 12 hours to even things out. The problem is, I’m very prepared to keep putting myself through this hell (I suspect it will put me in a coma) but it’s very scary when you have a full time job to hold down, a family that relies on you etc. I’m beginning to realise there’s a high chance that there’s no way out for me of this blinkin misery and that’s a very sobering thought!
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Hi CrispyChick
I came across this interesting article this morning whilst doing my usual google research!
I thought you might be interested regarding the use of Agnus Castus and why perhaps you responded well to it for awhile.
Have you ever had your prolactin levels tested? I believe it’s normally a relatively accurate test.
I’m thinking of getting mine tested
https://ndnr.com/endocrinology/orthoendocrinology-an-anti-inflammatory-approach-to-dysendocrinism/
Quite a few other areas covered in the article which might be useful for us all.
Im using Adrenal Cortex at the moment as I have some daytime cortisol deficiency but thinking of moving onto the pregnenolone and Dhea that my specialist recommended.
I tried pregnenolone in the past with success in getting my cortisol balanced but didn’t use Dhea at the same time, which I now think might have been where I was going wrong!
xx
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Thanks. I've stopped reading as I was, getting in too deep. I just need to stick with the progesterone... See if it works for me.
So that's me now at day 11 of 100mg cream, split into 2 doses, following my awful 9 days at 150mg. I've had a big bleed (big for me) and now i've gone aggitated and narky. But I've finally got rid of the dizziness and nausea - so the prog definitely seemed to stimulate my worst symptoms.
Interestingly on my first trial, the 25mg prog capsule I switched to this narky/aggitated point after only 6 days... So it feels like the cream is a much lower dose approach... Which I believe is the case.
Anyway, had my bloods and back for consult next week... I'll plod on feeling like this until then I guess.
Blue kingfisher - I definitely need to split my dose. When the 150mg made me really woozy, I took it all at once at night to get through it, but as soon as I felt I could I started splitting my dose again. On the low dose capsules at the beginning of these prog trials I was getting headaches each late afternoon.
Strage
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Blood results in - Prog has gone from 3.5 nmol/l to 7 nmol/l
If I didnt laugh I'd cry. That's me been on 100mg cream... What a ridiculously low increase!!!! No wonder I don't feel any better!!!!
Interestingly, after upping my vitt D intake, my levels have shot up... So must be all about getting the right route of absorption. ;D
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Hi CrispyChick, it's not a low increase at all, your prog levels have doubled. Don't forget that estradiol levels are measured in pmol and pg which means 1,000 times lower than nmol and ng. And there's also the slow build up in the beginning of the treatment and the fact that blood levels don't always correlate to specific tissue levels.
How are you doing, mood wise?
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Hi Uptick
I was wondering if you’d be able to offer any insight into my symptoms.
I’ve been relatively stable on 25mg progesterone lozenges (taken orally due to gum ulcers when held in my mouth) until a couple of days ago when my specialist got me to increase to 50mg.
Oh no, irritable as hell ever since!
No nausea of dizziness, but mild headache and body aches.
You mentioned in an earlier post about progesterone metabolism, particularly the role of neurosteriod allopregnanolone on mood symptoms.
So when you’ve got the time I look forward to reading your thoughts on this aspect of progesterone sensitivity.
Many thanks xx
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Thanks Uptick
Yes, I guess my level has doubled... Still seems very very low. I'm no better anyway.
Hard to tell where I'm at as when I dropped from 150mg to 100mg I got a 6 day bleed... Then stopped the cream the week after for my period...which is now awol. So I'm all over the place.
I seemed to go narkier and impatient after dropping from 150mg to 100mg...but my estrogen dominance symptoms had calmed.
I'm headachy now I've stopped the cream, so despite no period, I'm going to restart.
I wonder if any of the ladies who take bio prog can give me any insight into their serum levels when supplementing???
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Hi CrispyChick
My serum levels in Nov 21 were 1.0 nmol/L
Not had serum test done since but just done Dutch test which says my progesterone serum equivalent is 3.0 my/ml. But the test then says ‘Note that the Progesterone Serum Equivalent is not a valid concept when patients are taking oral or sublingual progesterone’!!
So, not much use to you I’m afraid CrispyChick.
Hopefully others can assist more x
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https://www.biologicalpsychiatryjournal.com/article/S0006-3223(00)01044-1/references
Just found this Uptick x
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Right ladies (using micronised prog), talk me through my next trials.
I'm not finding the clinic very helpful, but it is helpful to gain access to different forms of prog.
So... I'm told that if it's making me woozy/spaced out/nauseous... Then I'm one of the few that can't tolerate prog... 🤔
I'm told it does not stimulate my estrogen receptors in small doses... Yet anecdotally a lot of women seem to experience this.
So I think she was trying to get rid of me... But I said I'd like to try a different route.
So... Mary, Dangermouse... Any others... Can you help??? Dangermouse you definitely experienced the stimulation of your estrogen with lower doses - am I right????
I'm getting the lozenge. 100mg - can by cut. She suggests I start on 25mg.
I also note (as someone mentioned before) I can buy utrogestan. Obviously that's 100mg full stop.
I also have some 25mg oral tablets left which I could try as 25mg or 50mg doses etc.
So... Shall I just start experimenting... Whats your thoughts/experiences on routes and doses???
She's also said take all month no breaks. Finally. She basically just agreed with whatever I said 🤷♀️
I clearly am very sensitive to hormonal changes, but given I've been taking breaks and changing dose left, right and centre... Its maybe not surprising. My only saving thought is the fact that the pill did this to me when I started, but these early symptoms did subside.
I have no other option but to keep trying... :(
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Hi CrispyChick,
Can you get repeat prescriptions without having actual consultations as you’re an existing patient? I don’t know how they operate, your post sounds like they aren’t overly helpful and you’re trialling on your own so perhaps don’t need as frequent consultations?
I hope you find the right method and amount soon, it’s crazy that you’re still battling this. X
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Hi Uptick
I was wondering if you’d be able to offer any insight into my symptoms.
I’ve been relatively stable on 25mg progesterone lozenges (taken orally due to gum ulcers when held in my mouth) until a couple of days ago when my specialist got me to increase to 50mg.
Oh no, irritable as hell ever since!
No nausea of dizziness, but mild headache and body aches.
You mentioned in an earlier post about progesterone metabolism, particularly the role of neurosteriod allopregnanolone on mood symptoms.
So when you’ve got the time I look forward to reading your thoughts on this aspect of progesterone sensitivity.
Many thanks xx
Hi Marchlove, sorry for the late reply. My thoughts are basically that every change in HRT will bring new symptoms which can or cannot subside with time (how long you have to wait can vary considerably, but 3 months seem to be the accepted time frame). If they don't subside, it's probably due to intolerance or imbalance with oestrogen levels. Trial and error. Regarding the role of allopregnanolone, I see that you have been reading about it. It's a fascinating area of research and there are some good reviews available. I don't understand why oophorectomised women are told to replace oestrogen but not progesterone and to a certain extent I also don't understand why progesterone in HRT is often referred as just for protecting the womb lining, if progesterone metabolites, such as allopregnanolone, have an important role in brain function. Here is an excellent article to get you started, let me know your thoughts, questions. https://www.frontiersin.org/articles/10.3389/fmed.2020.479646/full
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Thanks Uptick
Yes, I guess my level has doubled... Still seems very very low. I'm no better anyway.
Hard to tell where I'm at as when I dropped from 150mg to 100mg I got a 6 day bleed... Then stopped the cream the week after for my period...which is now awol. So I'm all over the place.
I seemed to go narkier and impatient after dropping from 150mg to 100mg...but my estrogen dominance symptoms had calmed.
I'm headachy now I've stopped the cream, so despite no period, I'm going to restart.
I wonder if any of the ladies who take bio prog can give me any insight into their serum levels when supplementing???
Hi CrispyChick, you don't need high blood progesterone levels and they don't always correlate with tissue levels. I cannot advise on serum levels when supplementing, but I understand that many of your symptoms are likely due to constantly changing doses and routes of administration, if your body does not handle fluctuations in hormone levels well. I know it's hard to persevere when you're feeling down, but unfortunately it's either staying on the same regimen for 3 months or completely stopping HRT to find out what your own hormones are doing.
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Thank you so much Uptick, the article is very interesting.
I’ve only had a quick read through so need to have a longer look, but my initial thoughts which are in line with what you have been saying to me and CrispyChick is that the body needs consistency to give it time to hopefully adjust.
Interestingly, I has a zoom with my specialist yesterday who immediately told me to revert to the 25mg dosage.
From what I’ve read the allopregnanolone levels do not seem to differ between women with PMS/PMDD and healthy controls.
I thought you might be interested in this study, albeit on a small group of women.
https://www.researchgate.net/publication/318993298_The_steroid_metabolome_in_women_with_premenstrual_dysphoric_disorder_during_GnRH_agonist-induced_ovarian_suppression_effects_of_estradiol_and_progesterone_addback/fulltext/598a6063aca27243585176a6/The-steroid-metabolome-in-women-with-premenstrual-dysphoric-disorder-during-GnRH-agonist-induced-ovarian-suppression-effects-of-estradiol-and-progesterone-addback.pdf?origin=publication_detail
Also, noticed in the article a brief mention of the CAR and high morning cortisol, which I have, so I recently changed from taking my magnesium and zinc at night to first thing in the morning.
I’ve sort of given up with worrying about serum levels of anything. As you say it’s what’s in the tissues that matters so my approach will be to stay steady, low and consistent.
The article did mention however the importance of the progesterone and estrogen ratio but made no further comments about what that might be?
The only test I really rate is the cortisol and Dhea saliva test. Without that I would be in a far worse position than I am now.
Thanks again Uptick, you’re a star x
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Thanks ladies.
It does make perfect sense to stay consistent for 3 months. Very difficult when you're experiencing bad symptoms... However, also made all the more difficult by our 'experts' currently telling us to up /reduce a dose :o
Although not consistent with my dose, I did consistently try the prog cream for 3 months ;D. I'm on day 2 of the troche - although experiencing bad side affects, like nausea... I don't feel spaced out like I did on the cream. It really is time to try an alternative route for me.
Marchlove - you mention a prog/estrogen ratio. There is an omni calculator for that. I'm using it, but obviously it is based on serum levels of both. The one useful thing to come from my expensive doc is highlighting the fact that my estrogen is not high, but a good normal level, but because my prog is low, my ratio if off, causing an imbalance and symptoms. I've always felt my symptoms were caused by imbalance.
You may, or may not find this calculator useful
https://www.omnicalculator.com/health/pg-e2-ratio (https://www.omnicalculator.com/health/pg-e2-ratio)
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Hi CrispyChick
Thank you for the calculator, as you say based on serum levels it might not be useful.
The nausea did settle for me on 25mg. I took it near food which helped and now I can take it away from food with no issue.
I now take mine at 6pm so that the increase in wee is over before bedtime, so that’s helped as well.
I would advise you not to change again at the moment though CrispyChick, see it through if you can x
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Oh... You got nausea on the 25mg troche Marchlove???
If that's what you mean, that's fabulous to hear. Obviously not the fact u had nausea, but the fact it is common and does subside. I always take after food.
Today I've taken 25mg. So I'll be on 50mg a day. I felt headachy waiting for last night's dose, which happend before, so I think morn and night doses for me should be the same.
So yes, here I intend to stay for a while. Been very aggitated since morn dose and now woozy again. But hopefully I can get through this. I believe the troche should be giving me a much bigger hit than the cream. So I think i prefer that - as the cream is a bit of an unknown quantity.
Increase in wee???? Did I read that right??? I'm not getting that symptom. How we all differ 😁
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Actually Marchlove - I thought you'd had mouth problems and stopped using troche???
Edit - just checked back... So 25mg x 2 a day, troche taken orally is your best fit so far??? I have 25mg oral tablets in my cupboard...i wonder why they haven't switched u to those?
Which clinic do you use Marchlove???
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Yes you’re correct I couldn’t use it as a troche due to causing mouth ulcers so they said to swallow it instead and that cured that one thing!
I use the Harpal clinic.
So I’m sticking with 25mg once a day at 6pm to see if I settle further.
Got to have a scan soon. x
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There's actually some really useful charts on prog absorption on Wikipedia.
Really helpful for me to see the difference between average cream absorption and oral and troche. :)
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Thank you so much Uptick, the article is very interesting.
I’ve only had a quick read through so need to have a longer look, but my initial thoughts which are in line with what you have been saying to me and CrispyChick is that the body needs consistency to give it time to hopefully adjust.
Interestingly, I has a zoom with my specialist yesterday who immediately told me to revert to the 25mg dosage.
From what I’ve read the allopregnanolone levels do not seem to differ between women with PMS/PMDD and healthy controls.
I thought you might be interested in this study, albeit on a small group of women.
https://www.researchgate.net/publication/318993298_The_steroid_metabolome_in_women_with_premenstrual_dysphoric_disorder_during_GnRH_agonist-induced_ovarian_suppression_effects_of_estradiol_and_progesterone_addback/fulltext/598a6063aca27243585176a6/The-steroid-metabolome-in-women-with-premenstrual-dysphoric-disorder-during-GnRH-agonist-induced-ovarian-suppression-effects-of-estradiol-and-progesterone-addback.pdf?origin=publication_detail
Also, noticed in the article a brief mention of the CAR and high morning cortisol, which I have, so I recently changed from taking my magnesium and zinc at night to first thing in the morning.
I’ve sort of given up with worrying about serum levels of anything. As you say it’s what’s in the tissues that matters so my approach will be to stay steady, low and consistent.
The article did mention however the importance of the progesterone and estrogen ratio but made no further comments about what that might be?
The only test I really rate is the cortisol and Dhea saliva test. Without that I would be in a far worse position than I am now.
Thanks again Uptick, you’re a star x
Hi Marchlove, thanks for the article link, it's very interesting, especially the results on sulfated metabolites, mainly DHEA-S. Many doctors who call themselves naturopaths swear that it is more important to dose DHEA-S than DHEA in menopausal women. Maybe they are onto something.
My morning cortisol levels were tested 3 times when I was perimenopausal and having anxiety/panic spikes at 3-4 am (cortisol? adrenaline?), but the results came back normal. Maybe I should have slept at the surgery lol.
As for the estradiol/progesterone ratio... it's a minefield, isn't it? There seems to be no rhyme or reason. They're supposed to fluctuate to control the normal reproductive cycle, but what's normal about that when it comes to the brain? Some women feel better during the luteal phase, some during the few days around ovulation, some only get relief after their period, many have horrible PMS, PMDD and some 'sail through' the whole process.
Thank you for your kind words, trying to understand the science behind menopause is a challenge, I really appreciate your interest and contribution :)
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Ah Uptick, that’s interesting what you say about naturopaths preferring Dhea-s. When I was using Dhea cream I couldn’t get in with it but am doing fine so far with low dose oral.
Seems like the sulfated form is only obtained from oral during the liver bypass.
This article explains quite well.
https://www.zrtlab.com/blog/archive/difference-dhea-dheas-brain-health/
The Dutch test do a nighttime waking cortisol test, using a swab, rather than having to gather loads of saliva in a tube. That might have worked for you rather than camping at the surgery! Unfortunately the Dutch test is rather expensive compared to other cortisol/Dhea tests, but I don’t know of another lab who does the nighttime test.
Upwards and onwards we go…. xx
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You two sound very knowledgeable on DHEA.
Why would I need it??? My level is 4.4.looks OK to me. But my clinic had me start DHEA and Testosterone as a cream.
I stopped a, while back, as I was worried it might increase my estrogen, vwhen I'm trying to increase my prog.
But! I stopped after I had bought a rather large tube of my compounded cream, so I might restart in future.
So... What would it do for me??? The DHEA I mean. :-*
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Nothing or cause more trouble unless you need it! You have to test CrispyChick and not just Dhea but cortisol. x
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Oh and you can’t go by serum it has to be saliva x
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Oh. I think I'll maybe not bother with that then. :o
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But if you’re deficient it can be a game changer!
Cortisol/ Dhea ratio is so important, in my opinion far far more important than sex hormones.
This is why some women sail through the menopause. They suffer the same drastic decline in sex hormones, but they have healthier adrenal and thyroid function and that compensates for the loss.
You might or might not fall into that category CrispyChick, but it’s just worth you keeping in mind. x
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You two sound very knowledgeable on DHEA.
Why would I need it??? My level is 4.4.looks OK to me. But my clinic had me start DHEA and Testosterone as a cream.
I stopped a, while back, as I was worried it might increase my estrogen, vwhen I'm trying to increase my prog.
But! I stopped after I had bought a rather large tube of my compounded cream, so I might restart in future.
So... What would it do for me??? The DHEA I mean. :-*
Hi CrispyChick, I'm not knowledgeable about DHEA or anything else, just a curious learner :) I don't think you need DHEA unless your levels are very low, which is normal as we get older, but some people argue that it could help your own body produce estrogen, but I don't think there's a lot of evidence to support that. There is some evidence that it can boost local oestrogen production when used vaginally (Intrarosa pessary). DHEA-S (the version of DHEA that has a sulfur radical added by specific enzymes in the adrenal cortex) is actually a neurosteroid and neurotrophin and low levels have been associated with PMDD. These women seem to have low activity of these adrenal cortex enzymes.
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I can very much identify with the low activity of the adrenal cortex enzymes Uptick!
CrispyChick- I decided to experiment and take my progesterone in the morning and guess what the nausea returned! Morning sickness in action!
So, is the answer low dose vitamin C?
https://thecompounder.com/morning-sickness-vitamins-c-k/
Going to try this out with a squeezed lemon and my vitamin D has K2, not the right K apparently but needs must.
Also, I forgot to take the progesterone with my breakfast so that wouldn’t have helped.
X
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Oh. Interesting Marchlove.
I'm taking it twice a day. Right enough, I don't notice any nausea at night. But when I wake it's at its worst. Today when I took my morning troche I felt very sick. They leave quite a bitter aftertaste too... So that's not helping.
I don't think I dare take it all at night. I get vaguely headachy waiting for my evening dose as it is.
Now... I suffered from really bad nausea at the beginning of all my troubles... This is a different nausea. It defo feels like side affect, so should lift hopefully.
My worst symptom is the wooziness. I think this too is side affect. Getting it with troche, like I did with cream. I do feel the troche is a lot stronger. But also maybe dips up and down more.
I actually think prog is working for my symptoms now... Just giving me rubbish side affects... Some of which are similar to my symptoms...ahhhhhhh
Are you still swallowing the troche Marchlove???
I just had a thought... I wonder if we can use troche vaginally??? 🤔
I've just emailed my compounding pharmacy to ask their advice on delivery routes and side affects.
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:-\ just checked, I take bit c 20mg in my daily vit spray... Also k1. Don't think they're my answer.
Interestingly, woman in pregnancy (not in UK I assume) take prog for morn sickness. Go figure 🤷♀️
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Yes I’m swallowing the troche because of the mouth ulcers, but yes I can confirm that you can use the lozenge vaginally as my specialist told me to give it a try when I spoke to her last week. I haven’t tried it yet but will do so.
The nausea wore off quite quickly after the lemon so I do think that aspect is abating somewhat.
But I’ve been very irritable all day!
I’m going back to taking it in the evening. x
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Why did u change to morning???
I'm wondering if the morn dose is a problem for me... I'm feeling semi decent right now, after a woozy day. But... I do tend to get headachy as I near 12 hours...hmmm not sure which is the lesser of the evils.
I do wonder... (And it's only my own thoughts after being on other groups where they supplement with prog) if maybe the stop/start approach of prog as used as part of HRT is responsible for some of the issues?! Like u say, you've got low mood.. I get spikes of low mood as I go up/down doses, or try to settle. Maybe taking the break means your body never gets used to it :o
I'm going to be taking continuously this time.
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Cherry troches vaginally... ;D
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Cherry, well there’s a thing!
No real reason for morning dose apart from some research stuff that said progesterone circadian rhythm meant progesterone is higher in the morning, so thought a would give it a whirl. That’s how scientific I am!
Progesterone also decrease’s prolactin levels, which should be lower in the day, so that was also an influence.
Anyway, didn’t like it, so sticking to 6pm which I think I was beginning to settle on. Who knows as time goes on maybe I’ll be able to bring it forward to earlier in the day.
I know what you mean about the spikes, but as with the menstrual cycle which has one low and then one high (in simple terms), I think the body needs the same on/off with progesterone on its daily cycle.
Wonder if other members watching this thread have any similar experiences of circadian rhythms and timing of taking progesterone? X
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Just had a really interesting good chat with my pharmacist (much more helpful than my doctor). I'll share:
She tells me that with the lozenge you absorb about 50-60% buccal and the rest via oral. If you place under tongue, more will go down oral route. Happy for me to try that if I'm still getting side affects. However, oral brings metabolised changes, which I've read lots about.
She said lozenges can be taken vaginally to try that route, but would need to have the sweetener removed to avoid irritation. An easy possibility.
Best of all she said if I'm still finding it difficult she can speak to my doc and get my route of administration changed... Woo hoo. No clinic fee 😁.
She was so helpful. Some people feel bad on low doses (like I did) but also on high doses (like many). It's finding that sweet spot.
The cream obviously avoids the GI tract. Personally I think the cream absorption wasn't strong enough for me, resulting in too low a dose. I am OK on the lozenge but still getting woozy and shaky after taking... And very vague/spacey. Not very sharp >:(
Other option would be slow release pill.
She says only give it 2 weeks before changing route if need be. Suppose its not changing med, just route of administration.
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Oh thanks for sharing CrispyChick.
I must admit I’ve not been to happy about taking the lozenge orally but wasn’t able to use in my mouth as you know.
That’s interesting about the sweetener, my specialist didn’t mention that, so not sure I should try it with the one I’ve got?
Didn’t know there was a slow release one either! Which route of administration would that one be be?
You might get on with the drops that MaryG said she uses, I thought about that for myself but am concerned I’d get the same oral issues.
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Interesting pattern developing here.
I can actually feel the troche rise and fall. Its pretty awful.
The rise brings wooziness, vagueness (spacey I guess), mild nausea, at times and terrible agitation..lasts about 4 hours then that all drops to low mood and irritation... Then drops later to feeling OK... But Mildly headachy as I await my 9pm dose!!!
Much more volatile than the cream - which left me in that steady state of wooziness and didn't seem to ever drop to anything else..
Sigh.
So, perhaps I just try at night. I sleep fine. I'm worried about the withdrawl headaches though.
>:(
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That’s interesting Crispy.
Can you cut the lozenges into smaller pieces and take equal amounts more frequently and double when you’re in bed?
I don’t know what one looks like, what progesterone it contains or if cutting it onto 6/8 is poss?
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Ah yes VictoriaV, you certainly can with mine! That might work CrispyChick? x
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I’ve never seen a lozenge, is it solid or soft centred?
How big are they, can one be cut up equally without precision tools?
I’m assuming they come in different doses, is a lower dose pill smaller in size or the same size as a bigger dose?
Sorry for the Q’s, I’m interested!
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Yes. It's a square. Suspect it'll get less accurate the smaller I cut.
I think they are all the same size (irrespective of overall dose e.g a full troche can be 100mg or 200mg or contain other hormones too. Mine are 100mg) and can easily be quartered. Smaller than quarters probably not so precise. But it does cut.
The pharmacist suggested I try an 1/8 instead of my 1/4 in morn.
I think I might try 1/4 and 1/8 tonight as I sleep through anything - leaving 1/8th tomorrow to take. Perhaps the headachy feeling will come to nothing if I just take at night... More trials. Sigh. Time will tell.
Feeling dispondent... But I guess I'm on the dip come down for the day ;D
Thanks ladies :-*
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Mine is round with softish centre. Easily cut into quarters x
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:o how funny they are different. Mine is same consistency all the way through... Like wax.
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Yes sorry, mine is like wax, so easy to cut
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Thanks CrispyChick.
It sounds like you feel your hormones quickly increase (woozy, sicky) and then drop off (irritable, low) 4 hours later. I don’t know what daily dose you’re on but if you can divide the troche into 6 or 8 and space it throughout your day you might avoid the see-saw effect you’re getting? I don’t think it matters if the pieces are not absolutely identical, the key is getting the pieces small and timing regular/frequent.
Marchlove - you’ve mentioned mouth ulcers. Is your lozenge/troche PEG based?
I’m a long way behind you on this progesterone journey, hopefully one day I’ll have something useful to post!
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Yes it is VictoriaV!!!
Good thinking. I wonder if the sublingual drops are too? MaryG would know.
I also take estrogen lozenge and have no problem with those, they don’t have PEG. I thought the difference might me that estrogen is very good for your mouth and gums, but that could be the reason.
So golly you might not be as far behind us as you think, so post away!
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Exactly that Victoria. Although at the end of all that swinging up and down... I'm now back to my normal meh self with full ears and vagueness (hard to explain).
I will try my usual 1/4 tonight, plus an additional 1/8th...then chop my remaining 1/8 into tiny pieces tomorrow. My worry is I'll then be continuously woozy which i was on the cream.
I might hold off on the morn dose... See what happens... 🤔
Most woman take one hit a day with utrogestan though... So hopefully that might be an option.
Where are u at with your prog Victoria?
PEG is off putting, I must say. However, priorities at this moment in time. I had mild mouth discomfort the few days... But that seems fine now (a lot the only thing that is ::)).
Marchlove - my pharmacist mentioned rapid melt wafers or something along those lines... Worth looking at. But then, if it works for you swallowing it... Stick with that 🤷♀️ although you'd prob be better on a proper pill so you don't need to take the PEG in.
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Thanks CrispyChick. Is that the Specialist Pharmacy?
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I wish I had progesterone experience/knowledge! We spend 12 years doing algebra and get told diddly squat about this fantastic era 50% of us are signed up for!
PEG can cause nasty effects, maybe the compounding clinics offer a gelatin, VG, Vit E alternative. Does your estrogen lozenge name the carrier plz?
I’ll be gob smacked if sublingual drops contain PEG!
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Oh I’m an idiot :'(, the estrogen does contain PEG! I’ve just had another look with my glasses on and it does.
Feel a bit of an idiot, but thank you for raising this issue.
So, I think it must be that the delivery system for me, not necessarily anyone else, is not the right one.
I’m grateful for your intervention though as it’s clarified for me that the sublingual route for me is one not to be revisited. x
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Yes, specialist pharmacy Marchlove.
I see you've decided it's the prog not the PEG at fault though... So might not want to try an alternative sublingual.
I'm still pondering. Last night I took my usual 1/4 and an additional 1/8th. I was well aware of it... Went very woozy and felt wooziness if I woke in the night. This morning I felt sick as a dog.
Basically any dose of troche sends me woozy/spacey and aggitated. So it's not an option during the day with this side affect. After the slightly higher dose last night, I'll try no daytime dose. The fear is withdrawal headache... But can only test it.
Next stop will be oral. I have some 25mg capsules from my first 10 day trial. I'm wondering about a 50mg trial per night. The 25mg annoyed my estrogen symptoms, so wasn't sufficient. As I understand it oral absorption will be a lot less than sublingual. The pharmacist mentioned slow release capsules too... And I know you can take some capsules vaginally. So more trials to come.
The pharmacist said try for 2 weeks then go back to her... Basically, I don't heed to wait months each time as I'm only tampering with dose and route... Its not a whole new hormone.
It is frustrating to finally identify a need for progesterone and then struggle to take it due to side affects. 🙄
Anyone know if utrogestan is slow release???
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I don’t know if utrogestan is slow release (hopefully others can help). However, I have some slow release 50mg progesterone capsules I bought privately, and I can tell you the side effects are no different to taking any other form of prog, i.e., low mood, spacey, sluggish, bloating etc. The only difference is it might take slightly longer to build up (as it’s a lower dose) than other progs, but it’s negative nonetheless. Sorry it’s not better news x
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No, that's helpful perinowpost.
I am certainly feeling the build up as this week of troche has gone on... So I'm thinking I'll lower the dose to try and reach lower side affects. I'm pretty sure the progesterone is helping balance my estrogenic symptoms... But the side affects... Urgh.
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I have just checked with the pharmacy and I can confirm that my progesterone drops DO NOT contain PEG.
Having read up on PEG, it would appear that a lot of medication contains it including my migraine preventative treatment.
Allergic reaction seems to be quite extreme but I suppose it's possible to be sensitive to any medication that contains it.
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Thank you for checking with your pharmacy MaryG, very kind.
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Hey, I also found the lozenges (I had the waxy squares in the blue case that cuts them when you close it tight) absorbed too quickly and left too quickly causing more volatility.
I went back to the cream as it dripped thorough more gently.
I did find that I could only tolerate it when my own oestrogen finally came down and I still needed at least 100mg a day, even with oestrogen very low, 50mg seemed to stir everything up.
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Hello Dangermouse!!!
Och, I'm just fed up of this shenanigans!!! Been up and down like a yoyo on the troche this week. Higher doses definitely give me awful woozy and nausea. Lower doses... Give be different woozy and nausea avd ear pressure ... Almost like my original symptoms. Cant win.
I'm now only on only 25mg at night. Can't tolerate the side affects of taking it during the day... It also seems to induce horrific aggitation.
I need to stick it out consistently. I know. The graphs on Wikipedia point to the troche being much greater absorption than cream or oral... But yes... It does leave quicker.
Anyway, prog aside, I've now concluded the DHEA that I took alongside Testosterone for 7 1/2 weeks was not responsible for making me feel awful - but it did indeed keep my mood steady and make me calm. So I'll be getting back on that... But I really want to try and stabilise the prog first.
I'm at the point where I'm wondering. If there's any point continuing with prog... But:
No migraines :)
No fluey feeling :)
No horrific pmt avd paranoia :)
These are good things, right? I'm just sick of feeling nauseous avd woozy. 😭
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Hello Dangermouse!!!
Och, I'm just fed up of this shenanigans!!! Been up and down like a yoyo on the troche this week. Higher doses definitely give me awful woozy and nausea. Lower doses... Give be different woozy and nausea avd ear pressure ... Almost like my original symptoms. Cant win.
I'm now only on only 25mg at night. Can't tolerate the side affects of taking it during the day... It also seems to induce horrific aggitation.
I need to stick it out consistently. I know. The graphs on Wikipedia point to the troche being much greater absorption than cream or oral... But yes... It does leave quicker.
Anyway, prog aside, I've now concluded the DHEA that I took alongside Testosterone for 7 1/2 weeks was not responsible for making me feel awful - but it did indeed keep my mood steady and make me calm. So I'll be getting back on that... But I really want to try and stabilise the prog first.
I'm at the point where I'm wondering. If there's any point continuing with prog... But:
No migraines :)
No fluey feeling :)
No horrific pmt avd paranoia :)
These are good things, right? I'm just sick of feeling nauseous avd woozy. 😭
Hi,
I've just read most of this thread and what stood out is the dizzy woozy feeling. I never had migraines before HRT, but did always get a bad headache before my period. Since HRT I still get a headache starting Utrogestan but it seems to go after a day or So again. The past 2 months I've had like a migraines where I can get out of bed but its accompanied with dizzy, spaced out nauseous feeling. I did have Labrynthistis 13 years ago and ever since my inner ear is weak so Im sensitive to balance. I also think I have mild tinnitus. I thought it was the progesterone but last night I had the feeling and haven't started my Utogestan. Do you think it may be also estrogen related? Or maybe nothing to do With hormone sin may case haha
Im wondering if I need a lower dose progesterone to balance estrogen. Its an awful feeling tho isn't it the dizzy sick feeling!
x
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Oh I forgot to add - I read too you guys mentioned the supplement DIM. did anyone feel dizzy taking this?
x
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Hi Kelrob
I don't think I can really help you - as I'm still in a mess myself, trying to figure it all out.
How long have you been on the HRT??? If its just started since, then yes, most probably hormonal changes.
I seem incredibly sensitive to changes, which I think explains why my own hormonal fluctuations were giving me horrific symptoms.
All I can say is that each route of administration of prog gives me symptoms... Oral, cream, troche. These are side affects, but quickly tip over into improving or exacerbating my own woozy symptoms... If that makes sense.
So, as I'm aware that prog is stopping my migraines and pmt... I'm plodding on trying to find a route/dose that gives me least symptoms and I can stabalise on.
I think the important things for you:
Are you new to hrt? In which case it maybe needs tweaking.
If you're not new... Your own hormones might have shifted, and hrt needs tweaking???
Sorry I cant be more help. Other than to validate that woozy motion sickness is horrific and I sympathise x
P. S oral prog does create many other metabolites - some of which are known fir dizziness etc.. That's why oral should only be taken at night.
And, that's why I can't for the life of me understand why the nhs have only approved oral at high doses!!!
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The DIM did cause headaches for 3 days but now I take every morning without any side effects. I have now added Glutathione (which I take at night) which deals with Liver phase 3 and the results have been quite dramatic.
The DIM had already reduced the poisoned feeling and even though I still had the palpitations, I didn't feel the anxious feeling (which seems to be linked with oestrogen volatility). However, the glutathione has also stopped the palpitations completely, as it provides the fuel for the liver to behave as it did when we were younger.
I also gave one to my friends who was drinking heavily one night and he was amazed as no hangover at all!
For me, a clearer digestive system (liver, gallbladder, pancreas, bowels) is the key to being able to process volatile hormones, which these 2 supplements are addressing.
CrispyC - That seems sensible to add back in the DHEA now to see if any improvements. I think your reaction to the different ways of taking progesterone suggests that you get the benefits regardless, but that, at this stage, it will never be strong enough to act as a fire blanket on the spiking oestrogen. In which case the low dose seems the most sensible for now.
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Hi Kelrob
I don't think I can really help you - as I'm still in a mess myself, trying to figure it all out.
How long have you been on the HRT??? If its just started since, then yes, most probably hormonal changes.
I seem incredibly sensitive to changes, which I think explains why my own hormonal fluctuations were giving me horrific symptoms.
All I can say is that each route of administration of prog gives me symptoms... Oral, cream, troche. These are side affects, but quickly tip over into improving or exacerbating my own woozy symptoms... If that makes sense.
So, as I'm aware that prog is stopping my migraines and pmt... I'm plodding on trying to find a route/dose that gives me least symptoms and I can stabalise on.
I think the important things for you:
Are you new to hrt? In which case it maybe needs tweaking.
If you're not new... Your own hormones might have shifted, and hrt needs tweaking???
Sorry I cant be more help. Other than to validate that woozy motion sickness is horrific and I sympathise x
P. S oral prog does create many other metabolites - some of which are known fir dizziness etc.. That's why oral should only be taken at night.
And, that's why I can't for the life of me understand why the nhs have only approved oral at high doses!!!
Hi,
thanks for the reply, I've been on HRT for 3 years. I was 39 when I had my ovaries removed - the surgeon was very blase about it saying its not a big deal just supplement with hrt! How wrong he was! I should be pretty stable with my hormones - I know some are produced other places than ovaries though. Maybe the NHS, who seem to say, only oestrogen is the main one aren't really correct given I feel crap and cant get it right just with estrogen - makes me wonder! I think there's such a balance and anything knocking on elf the hormones out means its just so hard to get back. Delicate balance.
x
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An update of my hell.
So I swapped from the prog cream to the troche. The cream never worked for me, I felt constantly woozy.
The troche. Same story - so higher doses of prog cause me intense nausea and wooziness. I conclude this is side affect. But too much to bear.
So I've found a dose of troche that doesn't give me the side affects. 6.25mg. Woo hoo.
I've now been on that 6 nights. I instantly feel it when it's absopted. It knocks me out. That's no problem at night. But omg...i totally believe In the stimulation of estrogen at low doses. Geezo... I'm in hell.
So I'm at my absolute worst. Sick, motion sickness, extreme anxiety and horrible horrible ear inflammation. These are my worst symptoms of high estrogen. So it is clearly antagonising. The ear thing I had right at the beginning of my peri symptoms and its awful. Not really had it since. I think high estrogen inflames the eustachian tubes. I'm trying a decongestant today.
So... I plan to ride this out. Nuts, right??? But I get side affects at higher doses.
Also, the prog is working for my mood, pmt and migraines. I need to get past this estrogen stimulation.
I am in hell. :'(
Any support appreciated. I will get there 😁
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Hi CrispyChick
Sorry to hear of your continued hell.
You could try taking it orally like I do, straight after your evening meal, which is also suggested for the Utrogestan if you have severe nausea and wooziness. x
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Thank Marchlove.
I'm not getting the woozy/nausea, side affect now I'm down to my tiny 6mg prog dose - which was the plan. Reduce until I no longer get side affects.
What I'm getting now is an upsurge in my estrogenic symptoms. My worst symptoms. According to a lot ice read, a low dose will up regulate my estrogen receptors for a while.
So, I don't want to change again, if I can help it. But I do need moral support to get through it ;D
Very full ears again today, feel so yucky. Tired and flat. Plodding on. :(
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Moral support being sent CrispyChick in truck loads!
I think you’re a marvel to keep plodding through, researching and gaining so much knowledge of your own body a long the way.
I understand your reluctance to change the route and oral not a good route anyway. I’m about to start using vaginally now that I’m sort of tolerating 25mg. My remaining symptom is irritability which I internalise to avoid hurting other people. It’s so odd, the true me watch’s this mood and it can make me smile as I know it’s not really me!
Yes I’d read that about the up regulation of the estrogen receptors but it’s something I’m not at all clear about.
Keep us in the loop as I think quite a few people watch this thread.
By the way I had my scan and the endometrium was 5mm. Phew! Waiting to see what my specialist says about my progesterone dosage…I expect she’ll want me to increase though.
Big hugs xx
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I think I must be crazy to be putting myself through this. I'm at 9.25mg troche now. Had the worst week. Ear pressure and vileness. Two of my original symptoms... So I do believe the low dose is stimulating my estrogen.
I'm not sick or woozy though... So no side affects.
Thanks for the kind words Marchlove. I just wish there was a guarantee at the end of this.
I need to find my sweet spot where I get rid of my estrogenic symptoms but avoid side affects.
No matter how low the dose It helps my migraines and mood swings. But boy, its been a rough week... 😒
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Hi Uptick, Mary G et al
I came across this interesting study regarding cortisol rhythm during the menstrual cycle.
https://www.frontiersin.org/articles/10.3389/fendo.2020.00311/full
I think it’s very interesting. I’m going to look at my Dutch test regarding the two estrogen pathways but it seems to be quite conclusive that progesterone lowers cortisol. Would you agree? x
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Progesterone- Friend or Foe
https://www.sciencedirect.com/science/article/pii/S0091302220300479
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Interesting article. It depends on your own individual response/biochemistry of course, but for me it is definitely foe. I have recently given myself a 3 month break from progesterone (back on it now 😔), and it’s the best 3 months I’ve had in a long time x
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Hi All
I know a lot of ladies on this thread are taking or trialing compounded but I was wondering if you would be able to support Postmeno3’s thread called, I think, ‘HRT shortages, an action plan for MM?’
You just have to post YES in the thread
x
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Marchlove, thanks for the link, it was very technical but it certainly explains why so many women have problems and I think it might also be the reason so many of us start having migraines.
Re progesterone, I would say it depends on the type ie natural or synthetic, the dose and whether or not you were progesterone intolerant pre menopause.
I think the reason why so many women struggle with it (particularly Utrogestan) is because they are overloaded with it. 100mg in one hit is far too much for most women.
Am I eligible to support Postmeno's petition? I don't live in the UK, I was struck off the NHS and as of two years ago, I am no longer British!
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Yes far too much in one bit to be sure!
I don’t think it matters if you technically aren’t British as it’s a MM letter/petition and you’re definitely a member of MM! X
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For Lisa_Oz.
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Thank you, Mary. I am meeting for a follow up appointment with the clinic tomorrow before I start my prescription because I have so many questions and do not want my mood to get worse. Originally, she advised trying Utrogestan 100 vaginally for at least 7 days a month if I wanted to stick to traditional NHS meds. I made it to 4 days and had to stop. Felt so low it was scary.
I’ve been on Oestrogel for 2 1/2 weeks now 1 pump.
My new prescription is
Estradiol 0.25mg/ Progesterone 25mg per 0.3mL dose cream in HH base x 50mL 1 pump twice a day
Testosterone 0.5mg per 0.3mL dose cream in HH base x 30mL 1 pump a day
I don’t know the equivalence of the Estradiol amount to the 1 pump Oestrogen. I would like to keep it the same amount for now. I probably should have asked for progesterone only cream but my mind is not good right now.
Also, I don’t want to add Testosterone right away because I am soooo sensitive to everything. Plus, my understanding is that you only add testosterone after you have the correct dose of estrogen.
If this works…oh how I need it to work…I am ok with having regular scans to check my uterus.
I am also due to meet with my GP Monday about my low mood. I’m on a new antidepressant, vortioxetine, prescribed by a psychiatrist since May. Originally seemed ok but I’m so much worse now. Hard to separate hormones from my clinical depression which I’ve had for 20 years. But I think I want to go back to sertraline. I was good on that for years but I was also on bupropion at the same time. In 2020, it became unavailable in the UK (I’m American, moved here 5 years ago). I’m actually willing to get it filled in the US when I visit my family. Nothing is easy these days! But even so, when I was on sertraline on its own, I seemed better. Now I can barely function. Anxiety and depression at it’s worst. Again, not sure what is caused by hormones and what is caused by the antidepressant.
I have tried with him and others at the practice to find other forms of progesterone that I can tolerate. Their only suggestion is Mirena. Mirena terrifies me. If it made my mood lower, I could not cope. I’m barely hanging on now.
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Hi Lisa
I’m sorry to hear how miserable you are feeling, my heart goes out to you as I was also in a dreadful place mentally.
I’ve not posted on this thread for awhile, I’ve been meaning to but as I still have some ongoing physical issues I’ve delayed doing so. The physical issues I believe are primarily thyroid related so are not really relevant to this thread, so I should have posted before.
I’ve finally settled, 90% I’d say, on the following-
Compounded Biest cream which is 1mg Estriol and the same as you 0.25mg Estradiol.
However I only use this once a day in the morning.
Compounded progesterone cream 30mg which I also use once a day in the morning.
I do not use testosterone anymore as it made me too irritable but use oral Dhea 5mg and Pregnenolone 20mg, both of which I use once a day in the morning. You should not use Dhea without having had a cortisol/Dhea saliva test.
Regular scans.
Like you I would be interested to know how 0.25mg estrogen cream equates to one pump of estradiol?
But I believe it is a lot lower, it certainly feels so.
I have a comt gene mutation, which is fairly common. What this means essentially is it that estrogen causes me anxiety in anything but low doses.
As far as mood goes I eventually managed to wean myself of AD’s and I now take otc Lithium Orotate 5mg, one with breakfast and one at lunchtime. This has been an absolute life saver for me but unfortunately you should not take it with AD’s.
Looking back I probably could have introduced it sooner when I had got myself onto a very low dose of AD, but at the time lithium orotate hadn’t come into my radar so this wasn’t an option.
Yes as you say it probably would have been better to have the E and P separately but I wouldn’t get overly stressed about it right now.
It might be a good idea however to just start with one pump of the combined cream in the morning for a few months before you increase. Don’t expect to feel better straight way but hang on in there and you’ll win through.
All in all Lisa, I think you have made a good choice for yourself going forward and I wish you every success.
Sending you hugs
M x
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Thank you Mary. Your comments help and I am happy you have found what works. I have some questions for you that I will post when I’m feeling better. Went to the gym in the hopes it would help but it hasn’t.
I did get my period last night. It’s gone now but still have cramps. That might explain my especially low mood this week.
I really appreciate you taking the time to post xxx
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Lisa, low oestrogen levels affect serotonin levels hence the reason so many women need ADs as well as hormones to feel good.
Low serotonin levels have different manifestations in different people and with me it was the main cause of my silent migraines along with wildly fluctuating hormones and too high a dose of progesterone. In others, it causes crippling anxiety and depression.
Have you tried amitriptyline? I think it's popular in the US. For me it's a wonder drug and not only has it helped to prevent my migraines, it has improved my gut health. It's a TCA that simply makes more serotonin available in the brain.
If you don't feel confident about trying something new, then stick to what you know works well for you.
I would give the cream a fair crack but be prepared to increase the oestrogen component. You have regular scans so you can afford to play around with dosage. Holding off on testosterone for now is a good idea.
Finding the right combination of meds is really miserable and takes time but when you do finally get there it's worth it.
Marchlove, I'm so pleased you are doing well now.
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For Rollergirl.
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Thank you :)
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For Anonymous1.
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For Anonymous1.
Hi, I am wondering what country you are in, is it Spain? Are you working with a specialist at all and, if so, would you be willing to DM me their name please? I'm looking at alternative options to estrogel/utrogestan at the moment and willing to travel (within Europe) to find the right person to help me as I am now really desperate. Thanks in advance 🙏
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Penguin, I will send you a PM.
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Penguin, I sent you a PM answering some questions, did you receive it?