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Author Topic: Is this the right place to discuss compounded hormones?  (Read 110959 times)

Tc

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Re: Is this the right place to discuss compounded hormones?
« Reply #60 on: March 04, 2020, 02:03:07 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #61 on: March 04, 2020, 02:36:20 PM »

It shows how little consultants are aware of how HRT affects ladies!  One size does not fit all  :-\
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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #62 on: March 04, 2020, 04:09:56 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #63 on: March 04, 2020, 04:12:58 PM »

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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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #64 on: March 04, 2020, 04:27:26 PM »

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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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #65 on: March 04, 2020, 04:32:58 PM »

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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Tc

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Re: Is this the right place to discuss compounded hormones?
« Reply #66 on: March 04, 2020, 06:58:16 PM »

 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

« Last Edit: March 04, 2020, 07:02:01 PM by Tc »
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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #67 on: March 04, 2020, 07:58:06 PM »

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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Ladybt28

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Re: Is this the right place to discuss compounded hormones?
« Reply #68 on: March 04, 2020, 08:14:30 PM »

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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CLKD

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Re: Is this the right place to discuss compounded hormones?
« Reply #69 on: March 04, 2020, 08:18:06 PM »

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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Dr. Heather Currie

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Re: Is this the right place to discuss compounded hormones?
« Reply #70 on: March 04, 2020, 09:10:23 PM »

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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Tc

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Re: Is this the right place to discuss compounded hormones?
« Reply #71 on: March 04, 2020, 11:28:44 PM »

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

« Last Edit: March 05, 2020, 10:35:13 AM by Tc »
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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #72 on: March 05, 2020, 12:01:45 AM »

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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Tc

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Re: Is this the right place to discuss compounded hormones?
« Reply #73 on: March 05, 2020, 12:59:43 AM »

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


« Last Edit: March 05, 2020, 05:49:15 AM by Tc »
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GypsyRoseLee

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Re: Is this the right place to discuss compounded hormones?
« Reply #74 on: March 05, 2020, 09:03:03 AM »

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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