Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Ana21 on October 08, 2024, 07:30:55 PM
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Hi All!
An excellent article from Dr. Jen Gunter on The Vagenda:
A Master Class in Hormone Levels and Doses in Menopause
Understanding the Concerns with Ultra-High Doses
https://vajenda.substack.com/p/a-master-class-in-hormone-levels
I wish I could paste the text here so it was searchable on the forum, but it would have to span 3 posts in order to comply with the limit on message length.
Hope you're all doing well.
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I read that earlier and I thought it was a really good article. There is so much we don't know still! And so much stuff out there that simply isn't yet backed up unfortunately.
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Thank you… I’ve bookmarked it to read.
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Very interesting. I would have liked to see more scientific elaboration on the two statements below and why she thinks blood tests are useless though, as these are pretty generic (but very important) statements:
- If studies showed that blood tests were worthwhile, they would be included in the guidelines.
- Estradiol levels can underestimate estrogen exposure due to how hormones are metabolized, making estrogen seem low when it is not.
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Re the blood tests, I think the problem is that even someone on a steady dose, post menopausal, that oestrogen blood levels rise and fall during the day, so you could have a low reading and think goodness that means I need more whereas if you had had a second blood test three hours later your level might have been more than double or triple. Louise Newson showed a chart of a woman's oestrogen levels during the course of one day. This woman was taking regular HRT, feeling settled etc and the curve of the graph went up and down like you wouldn't believe. Also we are all different. So a lot of women get bone protection on a very small dose of oestrogen yet there will be some that need more. There are just so many variables. I feel we are still feeling our way in the dark half the time!
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Very interesting. I would have liked to see more scientific elaboration on the two statements below and why she thinks blood tests are useless though, as these are pretty generic (but very important) statements:
- If studies showed that blood tests were worthwhile, they would be included in the guidelines.
- Estradiol levels can underestimate estrogen exposure due to how hormones are metabolized, making estrogen seem low when it is not.
I've only skimmed the article at the moment but that was my thought about some of it. Sweeping statements with no evidence.
I know she's in the US but we do know that the NHS has guidelines that deliberately reduce demand to reflect the funding available.
I absolutely agree that there is so much variance in estradiol levels that there isn't a simple hba1c type blood test (blood glucose), however surely they can demonstrate if someone is consistently under what is "normal" at whatever stage of their cycle.
I guess that leads us to insufficient research to give a range of what is normal?
What gets me about all of this is that we have doctors making sweeping statements which others then parrot going forwards.
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I think this bit resonates with me:
"MHT can make symptoms worse in the menopause transition as it doesn’t help the fluctuations in hormones and makes high levels of estradiol even higher. The pill is often the best option here as it stops ovulation and stops the chaos."
I was told by the NHS meno clinic to try every pill possible for my peri symptoms. Whilst this hasn't worked for me, hrt was even more horrific - very quickly. As it simply topped up my already fluctuating, and at times, very high E.
I don't feel this method is portrayed well on this forum. And that's why I made the point on the LN thread about lack of 'expert' input.
Time and time again I've seen members instruct other members to stop the pill and move to hrt. The facts just aren't out there. Or maybe they are in some places.
I do find this forum very HRT heavy. And when that doesn't suit, or someone doesn't want to take it, you feel you have to post in the 'alternatives' thread ;D
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I've done quite a bit of reading into the circadian pattern of Estrogen levels but could never find charts showing actual levels/ranges of fluctuations, just a general "when it's highest or lowest", so would be really interested to see Louise Newsom's chart if anyone has a link to it!
I've done many, many blood tests over the last four years (too many) but except for the odd anomaly found them to be pretty consistent to within 100 pmol when testing on the same day of my cycle each month. But I'm open to being wrong/misled about it! I am also interested in the theory/statement that Estrogen levels can be under represented in blood tests, as it's something I've heard before and would certainly fit with my picture - I've just never been able to find any science given behind that and it's a shame she hasn't elaborated in her article, as that's quite a big statement to make.
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Good points Gilla.
I've done numerous blood tests too and they always correspond to how I'm feeling. So I find them very useful to reinforce what I 'think' is going on in this peri hell.
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Hi Gilla I saw the chart on one of her Instagram posts so I'm not sure how I would find it again. I will have a search and if I do, will post it. I guess it might be on her Balance app....
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I do find this forum very HRT heavy. And when that doesn't suit, or someone doesn't want to take it, you feel you have to post in the 'alternatives' thread ;D
My interest is GSM (Vaginal Atrophy) and its treatment. I can spit bullets sometimes when I read on the forum woefully bad advice given out such as ditch the topical treatment and start systemic HRT and your symptoms will disappear. I have stopped confronting the posters and instead report the post because bad advice is dangerous for women who are only just getting menopausal symptoms and only just beginning to feel the affects of GSM.
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Oh. What happens when you report it Ayesha??
I never thought of that. I've just become so used to ignoring it all. But it is a problem for newer women to mm.
That's why I posted about lack of expert advice. I just don't get how this forum can be pushed by the BMS when it is literally all just normal woman with either anecdotal evidence, or strong opinion!
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Agree with all you're saying Crispy and Ayesha! Though it is always well intended.
Gnatty, thanks for that - I'll have a little scour of her Instagram :)
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Interesting article, refreshing to hear a doctor who understands the value of the combined pill in peri which is my chosen option to keep me bleed free and hormonally stable, rather than steering everyone towards body identical hormone therapy, which frequently achieves neither amenorrhoea nor hormonal stability until someone is postmenopausal.
I don't necessarily agree with her about settling for early follicular estradiol levels though when on hormone replacement - whilst this may suit some people I personally never felt my best during that week when cycling naturally, and thrive within the range reflective of "average" levels across a normal menstrual cycle.
Also some of the studies showing "bone protection" at very low estrogen levels only showed superiority to placebo, i.e. a slower rate of loss, not that BMD was being maintained or increased.
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Oh. What happens when you report it Ayesha??
It goes to admin and they will act on it if necessary, which they have done recently.
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Gilla999,
You wanted clarification on the statement: "Estradiol levels can underestimate estrogen exposure due to how hormones are metabolized, making estrogen seem low when it is not."
I can give you an example. After menopause, the majority of endogenous estrogen is produced by transformation of androstenedione (secreted by the adrenal cortex) to estrone in the peripheral tissues. Both estrone and its sulphate conjugated form, estrone sulphate, represent the most abundant estrogens found in postmenopausal women.
When you have a blood test to measure your estrogen level, you are only measuring estradiol. That doesn't give you the complete picture of the estrogen in your body. It doesn't take estrone into account.
Being overweight is a risk factor for breast, endometrial, ovarian, and some other cancers. Simply put, fat cells make estrogen (estrone) and more fat cells mean more estrogen in the body. That's why weight matters when prescribing MHT.
I take oral estradiol. It's metabolized into estrone and estrogen conjugates such as estrone sulfate, estrone glucuronide, and estradiol sulfate, etc, prior to entering circulation. An estradiol blood test would not tell you anything about my estrogen exposure.
Hope that helps.
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Thanks for sharing Ana, yes I'm aware of Estrone and its conversion from oral Estradiol etc. I might be wrong, but I don't think this is what is being referred to when people talk about blood tests under representing Estradiol levels - I think it is something to do with Estrogen stored in the tissues and receptors which isn't necessarily represented in plasma (which is why for example saliva tests can sometimes show much higher levels than plasma, and there is a debate about which is a more accurate/valid representation). I just haven't seen much in depth studies/analysis into it and would like to, out of interest!
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I've seen a lot of blood tests in US FB groups from women who ARE getting estrone tested along with estradiol. However, estrone is a pro-inflammatory unhealthy form of estrogen. It's not a substitute for estradiol. I have no idea why the body would convert estradiol to estrone either...
As for topical vs systemic HRT for GSM, systemic HRT can definitely help GSM symptoms alongside topical and, when at higher doses, many women find they no longer need local E. That's not a reason to use higher doses by itself, just a fact... By extension, if someone is slathering themselves with local E and still suffering GSM, it would make sense to try adding in systemic HRT as well - as long as there are no contraindications.
As for the article itself, I've had 4 years of absolute hell on lower E dosages/levels. I have finally begun to be able to sleep better on higher dosages (currently 200mcg patches plus 6 pumps of gel). So doctors can come out with all these cautions and warnings and 'this isn't provens' they like, but my lived experience counters that - and I know I'm not the only woman out there in my situation. And as for the 'investigate other things', I spent 4 years doing exactly that - at huge expense, psychological stress and zero benefit to myself. I don't know what my serum estradiol is yet, I will test that in a few weeks. I do know that it was around 330pmol on both 6 pumps and 12 pumps of gel: I was not absorbing any extra gel for those extra 6 pumps.
I'm also on 300mg utrogestan continuously and I usually increase to 400mcg the week before my period as I find this helps sleep more.
The option of higher doses of E should absolutely be available, perhaps only with hefty doses of P and blood tests and then (only if tests show high levels) scans to check things.
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joziel,
Thanks for the info. Interesting to hear some women are testing for both estrone and estradiol in the US.
We know that both oral and transdermal estradiol are partly converted to estrone. And we know, due to the first-pass effect, oral estradiol causes much higher estrone concentrations than transdermal estradiol. I'm curious about the outliers, such as those women who convert more transdermal estradiol to estrone. We know that the body can convert estrone back to estradiol. Estrone is both a precursor and a metabolite of estradiol.
Sorry, I don't want to seem fixated on estrone, but I'm curious about what "non-absorber" really means and estrone is something we can measure. I'm a non-absorber. I've always wondered what happens to the estradiol that I apply to my skin. On transdermal estrogen, my estradiol levels are too low for measurement on immunoassay. I've asked my doctors about this and they say they don't know. They never say I am not absorbing it through my skin. It makes me wonder whether I metabolise transdermal estradiol is a non-typical way.
It would be so interesting to have your blood tested by mass spectrometry, profiling estrogens and their metabolites. Curious to know how your body is metabolising transdermal estrogen. I haven't been able to find any good information on this. Any help appreciated.
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What transdermal estrogen doses have you tried Ana21? Have you tried higher doses as well?
It seems I do absorb, just not well/much. I have very dry skin, which might be part of it. I'm afraid to moisturise it where I apply gel/patches, in case that is then a barrier which only further stops the estrogen getting in.
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joziel,
The highest dose of transdermal estrogen I've tried is 3 pumps of estrogel. And my doctor was hesitant to prescribe a dose that high. I'm in Canada and recently turned 60. We're more conservative in our MHT dosing. I would never be permitted to experiment with the higher doses that women are prescribed in the UK. That's why I've been following your posts with interest.
I knew I had an absorption problem when I was testing the 3 pumps of estrogel, so I did not use moisturizer on hands or body. I used a residue free body wash and I did not use rinse-out hair conditioner in the shower. Like you, I was afraid of creating a barrier to absorption. I applied the estrogel with a silicone spatula to avoid absorbing the gel through my hands and ensure the full dose was applied to the target area.
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Yes, I also use a silicone spatula to apply it. I am feeling great on my current dosage and trying to keep anxiety at bay after Panorama-gate. I am on tons of utrogestan as well. It will be interesting to see what my serum levels are, in a few weeks.
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Couple of thoughts in haste about this article. Something about its tone and content struck me as very off (starting with who on earth calls their own article a 'masterclass'). I went on to learn that this doctor is virulently, and I mean virulently, anti Louise Newson, has accused her of malpractice etc. Something to bear in mind.
As for some of the things she says - and I will look at more carefully at some point - I totally disagree that blood testing is pointless and as for the estrone/estradiol distinction - in an ideal world perhaps both could be measured but I am vastly more interested in E2 which is a lot more potent and beneficial than estrone which as Joziel mentions is considered pro inflammatory and as I've also read possibly the cause of occasional negative effects of "estrogen".
And if the following is true (and I do agree with this):
"being overweight is a risk factor for breast, endometrial, ovarian, and some other cancers. Simply put, fat cells make estrogen (estrone) and more fat cells mean more estrogen in the body. That's why weight matters when prescribing MHT."
then in the case of someone being underweight, as is my case, and therefore quite possibly almost totally deficient in estrone, that would be even more reason to absolutely need to check that at least my hrt is topping up my estradiol.
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Hi Laszla
In the article, Jen Gunter says she would do blood testing in certain circumstances:
"But to be a poor absorber, we need a definition. Do we say that someone with an estradiol level of 70 pg/ml (257 pmol/L) on a 100 mcg patch is a poor absorber, or are they just at the low end of the bell curve (because someone has to be at the low end of the bell curve, that is how distribution curves work)? It's impossible to say without studies of so-called poor absorbers matching levels with symptoms.
If someone were in menopause, meaning no period for the past 12 months and on a 100 mcg patch and is still having terrible hot flashes or sleeping poorly (nocturnal hot flashes might be under recalled) or symptoms I would expect to resolve with estrogen, I would consider doing a one-time estradiol level to make sure it’s at least around 50 pg/ml. If it’s lower, she may be a poor absorber, but because absorption can be erratic and the test results have a margin of error, I would not give her more of what she isn’t absorbing; I’d likely suggest switching to a different transdermal system or to oral therapy. If her estrogen level were in an expected range, I’d look for other causes of her symptoms and other therapies. I still might even suggest a different estrogen delivery system to see if that worked better because, as I already noted, levels may not tell us what is happening at the cell level."
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I was floored to learn that I had been prescribed a drug with a known potential for non-absorption and I had not been given a blood test when I failed to respond to treatment. For 1.5 years, on top of the menopausal symptoms, I experienced constant bleeding which my doctor attributed to estrogen. He wanted to reduce my estrogen dose and I begged him not to. During that time, I had two biopsies and numerous scans. Even when my endometrial thickness went down to 0.4 mm, my doctor didn't question whether I had a problem with absorption. He said a thin endometrium is normal in menopause. If I wasn't happy about the bleeding, I could have a Mirena. He didn't provide me with any other options.
It wasn't until my hair fell out and he could see my scalp that he said I looked like my estrogen was low and ordered a blood test. He was supposed to be a menopause specialist. It was the first time I questioned the competency of my treating physician and felt unsafe.
In hindsight, the bleeding was due to the lack of estrogen absorption. I had been taking progesterone for a year and a half. While all of this was going on, I was on the waiting list of a menopause clinic. I had to wait 18 months for an appointment.
My new doctor wanted me to try a different transdermal regimen. Blood tests confirmed I was not absorbing. Fortunately, the experiments only lasted 4 or 5 months. But during that time, I didn't get more than 5 hours sleep per night, waking from multiple episodes of night sweats.
I think I've spent most of my time on MHT not absorbing estrogen. I worry that my bones have suffered as a result. I had a DEXA scan in August and I have an appointment in November to go over my results.
In terms of costs to the healthcare system, it would have been cheaper to give me a few blood tests than the multiple biopsies and scans I received.
The system may work for the majority of woman, but the rest of us suffer needlessly.
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Ana this just makes me so angry and sad to read. I'm sorry that you've had such an appalling level of care, and I hope you're in a better place now. And I know you're not alone in experiencing it either. And then they question why we go elsewhere?! I too have experienced multiple examples of the same kind of thing - both with GPs and so-called meno specialists - as have my friends. It seems to be the norm rather than the exception. I eventually got referred to an NHS menopause doctor who has been just as good as any private people I've seen - she's very open to trying things outside of the NICE guidelines (within reason). The difficulty is that I only get to see her once or twice a year, but I take what I can get.
On blood tests, I can only say in my personal journey that they HAVE played a role and been very useful. But I do agree that there is more research needed into absorption of Estrogen - both poor and high absorbers, how it gets metabolised in different people, and is it fully reflected in plasma levels etc. No one seems to be doing this kind of research, I guess because like others have said, there is no potential financial gain at the end of it.
Joziel I saw on your other post you mention about anxiety as a result of the Panorama programme and that made me feel sad too. I hope you're doing ok!
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I think the problem is when the discussion becomes very polarised, and I don't agree with blanket policies such as everyone should be on body identical hormones, or nobody should have above a certain dose.
I also believe there is a role for testing blood levels, to check absorption, to ensure a therapeutic dose for the indication eg osteoporosis prevention for which levels have been established, and also identifying a level at which an individual feels well.
For example I know that I feel good close to 400pmol/L. I therefore know what to aim for when I change from Zoely to licenced MHT.
Multiple good quality studies have been published measuring plasma estradiol in women taking oral estradiol, and if it is good enough for them, it's good enough for me.
Estradiol conversion to estrone is bidirectional, and the people with the highest level of estrone are young women, so I'm not concerned about this.
It is probably less healthy when older, heavier women have only or mostly estrone, which isn't going to be my situation anyway.
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Couple of thoughts in haste about this article. Something about its tone and content struck me as very off (starting with who on earth calls their own article a 'masterclass'). I went on to learn that this doctor is virulently, and I mean virulently, anti Louise Newson, has accused her of malpractice etc. Something to bear in mind.
At least her 'MasterClass' is free unlike Dr Newson's.
https://newson-health.teachable.com/p/dr-louise-newson-menopause-masterclass
Calling a Dr 'virulently anti Louise Newson' without presenting the facts is completely irrelevant. I wonder if testosterone has a role in these heated reactions. After all it seems that hormones are the main cause and remedy for all things menopause.
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I'm in a good place now. I'm at the menopause clinic of a teaching hospital. It has an excellent women's health unit, which includes a POI clinic, currently the only clinic of its kind in Canada. It also has a vulvar dermatology clinic, a urogynaecology clinic (pelvic floor disorders affecting vagina, bladder, anus and rectum), and a pelvic pain (neuropelveology) clinic, etc. I was on a wait list for 1.5 years. The wait list is now 2 years.
Decisions regarding my care are now made in discussion with a team, not at the discretion of a sole practitioner as was previously the case. I'm presented with options and answers to my questions. I've found a regimen that works for me.
My previous doctor felt challenged when I asked questions. After the blood test indicating I was a non-absorber, he switched me to an oral estrogen, Premarin, a conjugated equine estrogen (CEE). You'll be familiar with it from the WHI trials. When I asked why Premarin and not micronized estradiol, he said: "I like Premarin." Given his tone of voice, he was essentially saying: Because I said so. It was extremely dismissive. He had been prescribing Premarin for decades and was comfortable with it. He eventually allowed me to switch to oral estradiol but only because I had continued bleeding on Premarin at various doses.
Personally, I would not use a private clinic. I do not want a doctor who is trying to sell me something, even if it is their time. I'm in Canada and the situation is different here, although it is evolving. I appreciate that many women in the UK and elsewhere are well served by private doctors. All women, regardless of means, should have access to quality care. You can tell a lot about a society by its treatment of women at all stages of life.
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Newson has a free online course because I did it... It was aimed at doctors but nothing to stop anyone signing up for it. It's called the 'Confidence in the Menopause' course.
Not to mention her free Balance website, free app, free podcast... where do I stop...