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Author Topic: Is this the right place to discuss compounded hormones?  (Read 77437 times)

Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #270 on: January 23, 2022, 11:36:58 AM »

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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CrispyChick

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Re: Is this the right place to discuss compounded hormones?
« Reply #271 on: January 23, 2022, 03:03:40 PM »

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.
« Last Edit: January 23, 2022, 03:06:50 PM by CrispyChick »
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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #272 on: January 23, 2022, 06:55:35 PM »

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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dangermouse

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Re: Is this the right place to discuss compounded hormones?
« Reply #273 on: January 23, 2022, 08:50:46 PM »

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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CrispyChick

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Re: Is this the right place to discuss compounded hormones?
« Reply #274 on: January 24, 2022, 09:54:02 AM »

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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Kathleen

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Re: Is this the right place to discuss compounded hormones?
« Reply #275 on: January 24, 2022, 05:36:57 PM »

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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dangermouse

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Re: Is this the right place to discuss compounded hormones?
« Reply #276 on: January 24, 2022, 10:07:06 PM »

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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Perinowpost

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Re: Is this the right place to discuss compounded hormones?
« Reply #277 on: January 24, 2022, 10:53:13 PM »

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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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #278 on: January 27, 2022, 07:10:18 PM »

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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dangermouse

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Re: Is this the right place to discuss compounded hormones?
« Reply #279 on: January 29, 2022, 12:10:39 PM »

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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Hurdity

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Re: Is this the right place to discuss compounded hormones?
« Reply #280 on: January 29, 2022, 07:50:59 PM »

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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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #281 on: January 29, 2022, 07:53:01 PM »

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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dangermouse

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Re: Is this the right place to discuss compounded hormones?
« Reply #282 on: January 30, 2022, 03:41:38 PM »

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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Logie

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Re: Is this the right place to discuss compounded hormones?
« Reply #283 on: January 31, 2022, 06:45:43 PM »

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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Mary G

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Re: Is this the right place to discuss compounded hormones?
« Reply #284 on: January 31, 2022, 09:12:04 PM »

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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