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Author Topic: Is this the right place to discuss compounded hormones?  (Read 4639 times)

Mary G

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Is this the right place to discuss compounded hormones?
« on: March 01, 2020, 02:47:39 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #1 on: March 01, 2020, 02:48:48 PM »

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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sparkle

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Re: Is this the right place to discuss compounded hormones?
« Reply #2 on: March 01, 2020, 04:22:06 PM »

I don't see why not Mary G, but who knows 😲
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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #3 on: March 02, 2020, 01:08:05 PM »

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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KBallinger

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Re: Is this the right place to discuss compounded hormones?
« Reply #4 on: March 02, 2020, 01:28:39 PM »

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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Wrensong

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Re: Is this the right place to discuss compounded hormones?
« Reply #5 on: March 02, 2020, 02:09:50 PM »

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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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #6 on: March 02, 2020, 03:10:02 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #7 on: March 02, 2020, 03:41:09 PM »

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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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #8 on: March 02, 2020, 03:59:53 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #9 on: March 02, 2020, 04:04:26 PM »

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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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #10 on: March 02, 2020, 05:40:09 PM »

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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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #11 on: March 02, 2020, 05:43:37 PM »

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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bear

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Re: Is this the right place to discuss compounded hormones?
« Reply #12 on: March 02, 2020, 06:49:04 PM »

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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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #13 on: March 02, 2020, 07:25:38 PM »

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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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #14 on: March 02, 2020, 08:14:19 PM »

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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