Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: edelweiss on April 30, 2017, 01:16:52 PM
-
I've read about other women on MM and hystersisters whose HRT stopped working, or isn't working as well as they'd like. A high percentage of us, it seems, have Hashimoto's too.
I've seen the famous consultants. Each has a different explanation, or no explanation, and some flatly deny it happens.
The most plausible explanation I had was from a Prof in Italy who has studied estrogen receptors all his long working life, he said:
"as you seem to know, a hormone induces its effect via interaction with its receptor; therefore, the lack of the effect may be the result either of the lack of the hormone or of the dysfunction/resistance of its receptor.
As estrogen replacement therapy keeps the level of estrogen within normal/high values, the lack of effect must depend on dysfunction/resistance of peripheral receptors.
There is an extremely rare genetic condition, the "Estrogen Insensitivity Syndrome", in which the estrogen receptor is defective.
But in your case, the insensitivity is acquired, a condition analogous to resistance to insulin in type 2 diabetes, in which the lack of effect is due to acquired resistance of peripheral insulin receptor.
In conclusion, I would suggest that in your case the insensitivity to exogenous estrogen finds its origin in an increased resistance to the hormone.
You may ask why this happens. In the case of increased insulin resistance, various causes have been suggested, among which I would primarily consider chronic or long lasting low level inflammation as in the case of the so called "Metabolic Syndrome" (which includes insuline resistance) or in auto-immune diseases (including Hashimoto's disease), and older age in general, etc."
What I simply can't understand is that top consultants don't acknowledge it/agree.
And there's no literature anywhere on this phenomenon.
There's a wikipedia entry on Estrogen Insensitivity Syndrome, which is so rare it affected fewer that 10 people. But NOTHING on why women stop responding to HRT - and many more of us are affected. How come?
Anyone got any thoughts?
-
Firstly - not everything you read on Wiki ....... is honest ;-). It all needs careful filtering and cross referencing for something as complicate as hormonal up-heaval.
It could depend on where you are on the journey. When your last monthly period was, what types of memo-symptoms you have experienced and what has been difficult to diagnose or deal with. Eventually most oestrogen production disappears so it may not be HRT not working but that you no longer require it?
Which symptom for you is the worst right now? Hopefully someone will be along with HRT knowledge or maybe, send Dr Currie a PM?
-
Hi CLKD and thank you!
Yes you're right re wikipedia, but I think the Italian Prof had a good rationale.
I emailed Dr. Currie. She was wonderful. What she said concurs with the Italian Prof, that sometimes the receptors don't work properly, so estrogen doesn't have its effect.
So it's a true thing. But no other consultants acknowledge it. I just can't work out why - cynical me says bad for business?
it's hard to pick a worst symptom. Probably insomnia, then depression/lack of mental acuity? xx
-
My brain has felt fluffy for years ::). I feel tired all the while but that's probably my medication [taken since the late 1980s].
What is the treatment plan for your situation?
-
Hi CLKD, thanks for asking. I haven't got a tx plan now, having been around all the top gynae/endo/other consultants and none of their advice has helped. My current plan is a self-administered: "get from one end of the day to the other". xxx
-
I first went on oestrogen hrt at 32 after my ovaries failed after hysterectomy . That sorted all my symptoms out 100% but at 45 it suddenly stopped working despite high oestrogen levels. I've tried all sorts and the best of them all so far seems to be half dose Tibolone. Not brilliant but better than the others. When I asked why my hrt suddenly stopped working after 13 years I was told it was because I was going through a 2nd menopause which can be more severe
-
Tnx Annie!
-
Annie, I've heard you mention your second meno before but I don't understand what you mean (sorry probably being totally dozy!!). If your ovaries failed and you went through your first meno, did your adrenals then fail to send you into a second? Blimey I've had enough trouble getting to my first, I sure as heck don't want to go through all of this again. Could you explain it to me please xx
-
Menopause strictly is the years after our last period. No more bleeding. So one is considered menopausal after we haven't seen a bleed for 2+ years.
Maybe Annie the HRT put the real menopause on hold?
-
I was on hrt happily for 4/5years and then suddenly it stopped working and I was back to square one with all the same horrendous issues that I had in the first place ! Namely anxiety,palpitations,insomnia,panick attacks,just feeling wretched. Tried numerous regimes and nothing worked again for me unfortunately hrt wise.
-
Annie, in your situation I think its probably due to the Adrenopause - there are many scholarly articles out there about this. I'll explain more later!
Edelweiss, that's fascinating! I believe wholeheartedly that my estrogen receptors have become 'deaf' - I haven't responded well to any of the HRT's I've tried and levels on two different transdermal methods were miniscule! I'll be talking to Professor Lumsden about this when I see her in 9 days time. Thank you for sharing your knowledge! :)
-
Here's a study concerning the Adrenopause and the promising effects of DHEA supplementation (for men and women).
https://www.ncbi.nlm.nih.gov/pubmed/12649580
I have further in depth studies to post elsewhere for any of you that are interested.
We all experience the Adrenopause and I'm guessing the state of an individual's adrenal glands contributes largely to difficulties in the menopause. We all know high stress impacts the adrenal's terribly -so this is why developing stress management strategies is so important at this time of life as we''re getting hit with a 'double whammy'.
I'm also guessing this is why in your case Annie you seemed to experience a 'second menopause' as your adrenal function declined with age and you were experiencing high stress in your life at that time.
I can say categorically that I have first hand experience that this is a factor, as I had the ACTH Stimulation Test last Wednesday which is literally a stress test of the adrenals and since Thursday night, I have experienced hot flushes, feelings of doom and anxiety all of which were not present before. I hope it settles down! If you will, I've tested this theory first hand (so all of you don't have to)!
-
:thankyou:
The longer I live the less I know !
There was an article in The Guardian yesterday about how being surrounded by stress in our early years increases the possibility of life-changing illness at 'our' age :-\
-
Annie, I've heard you mention your second meno before but I don't understand what you mean (sorry probably being totally dozy!!). If your ovaries failed and you went through your first meno, did your adrenals then fail to send you into a second? Blimey I've had enough trouble getting to my first, I sure as heck don't want to go through all of this again. Could you explain it to me please xx
I really have no idea! When my ovaries failed I was never told I was in menopause just that because of the ovarian failure (or severe compromise of blood supply to them) that I had very low oestrogen levels that resulted in sudden symptoms (none were emotional, all physical) so max dose oestrogen sorted it and I never gave it another thought. At 45 I was under severe emotional stress for about 5 months and to my knowledge coping with it better than some people I know would then when it was sorted my dad had a cardiac arrest and died suddenly (my mum had died 9 years earlier) and I went to pieces, clearing out their memories and belongings. Anyhow about 4 months after that a hoarde of symptoms developed, different to the original ones and no one knew how to treat them. A gynae (may have fobbed me off as he really wasn't interested) said it's a 2nd aggressive menopause and nothing can be done x
-
Aw Tempest I just wish I could understand all this, I'm reading it and not taking it in :-(. X
-
Hi Annie, Are you still taking half tablet tibilone? I'm glad it helped at least a bit.
For what it's worth, I think your HRT stopped working after 13 years hence the sudden return of meno symptoms. But not a '2nd meno' - it's just the way the gynae chose to describe it. Who was it, if you can say?! x
-
Thank you Annie, CLKD, Tempest, Dazned, Elizabethrose, for responding and for sharing your experiences. Do any of you ladies have thyroid problems/Hashimoto's?
Tempest I'm glad you found it interesting. When you say 'levels were miniscule' do you mean your blood levels of estrogen were low with transdermals?
I know exactly what you mean about feeling your receptors became 'deaf'. Same here. I could swear I felt it happening - it was like part of my brain was shutting down. xxx
-
Do any of you ladies have thyroid problems/Hashimoto's?
Yes I do :)
-
No I have no problem with thyroid.
-
Thanks babyJane and dazned. xxx
-
Bless your heart, Annie! You know how I like to post studies to prove my little theories........ ;) xxxx
Yes, Edelweiss! My levels were miniscule WITH transdermal estrogen and the best guess from my Consultant was that I simply either wasn't absorbing or perhaps I was, and the estradiol wasn't circulating. I felt about the same physically on Premarin and Tibolone too - but in fairness, the doses were small (Tibolone is weakly estrogenic). Of course, neither of these can be measured in the blood.
I know over time that the estrogen receptors down regulate in the absence of stimulation from hormone - I feel I'm 'dicing with it' here at the moment as i'm not on any HRT and have been off now over 2 months. My Endocrinologist is keen for me to start again, but goodness knows with what! Thus I'm waiting to see Professor Lumsden at her Menopause Clinic in just over a week.
Can I ask which preparations you've used Edelweiss, and if you're still using HRT now despite having no response from it? Implants are still on offer at my Menopause Clinic, but I'm scared to go there without knowing what level I would feel comfortable at!
CLKD - absolutely!!!!! Early trauma and prolonged life time stress has been proven to predispose to autoimmune disease particularly, as well as cardiovascular disease, diabetes and overall early mortality. Not a pretty picture, is it? :'(
-
Dazned - do you have any other auto-immune issues? Obviously tell me to mind my own business if you don't want to say. )Just exploring this for my pet theory!) xxx
-
Thanks for posting that link Tempest, like Annie I've been trying to understand it. It led me to this;
https://www.ncbi.nlm.nih.gov/pubmed/15539809
Now as I remember Mary J and Menomale were using DHEA at one stage. I wonder whether they still do and what, if any, improvement they've experienced. I think Mary J's HRT regime via Prof Studd was working fabulously well for her. Hopefully she might read this and swing in to the conversation. If I remember correctly, Prof MacGregor had prescribed the DHEA (but don't quote me my memory may have failed me).
Lordy, it's all so complicated. Ladies I feel for you all x
-
Hi Annie, Are you still taking half tablet tibilone? I'm glad it helped at least a bit.
For what it's worth, I think your HRT stopped working after 13 years hence the sudden return of meno symptoms. But not a '2nd meno' - it's just the way the gynae chose to describe it. Who was it, if you can say?! x
No auto immune has shown up on me
Half Tibolone - yes I started on full tablet and was really lucky that I didn't experience the awful effects some ladies were getting but about 3 months in I started to feel panicky so I halved a tablet and still felt panicky lol (maybe a tad better to be fair) but nothing else changed so I'm happy staying on half til something happens
Although I coped magnificently on high oestrogen all those years once this '2nd meno or whatever it is ' struck I cannot tolerate large doses of the stuff now, Tibolone being weak and halving it must be better for me
-
Tempest oh that's very unusual isn't it? Low blood levels on transdermals. I'm sorry they didn't work well for you.
I think down-regulate means the receptors become less sensitive? A consultant said the opposite to me. He said effect recovers fully when levels of estrogen are allowed to fall. His colleague said receptors reset after withdrawal of HRT i.e. become more sensitive/start working again. I asked to see the research evidence but nothing was forthcoming.
I've had estrogel, implants, sandrena, estrodot, prempak (ugh!) But once I stopped responding to estrogen nothing helped. i don't see how anything would - estrogen is estrogen is estrogen. if my receptors aren't receptive, then it doesn't matter what the method of delivery is, it's not going to have any effect.
I've stopped using HRT for a few days just because I can't be bothered to use it when it's not having any effect.I don't know but I think perhaps I feel a bit calmer - not sure. Still feel horrible and nothing like my old self.
I wish someone could study why HRT stops working, and find a solution. Not one person in the world appears to be researching it. Maybe should ask the big pharmas what's going on...xxx
-
I kinda get where the thinking is coming from if it applied to tachyphylaxis - but not in reasonable physiological levels. But who knows?!
So you've pretty much tried them all, Edelweiss! I wonder if a break might, just might, make a difference? I certainly felt calmer off HRT until last week when I had the ACTH. I wasn't expecting this upheaval at all!
I remember a comment a while ago by one of our most learned members, Dancinggirl who said that she wondered if there came a time when the body just doesn't like estrogen anymore? She has been off HRT for a while now. I spoke to Hubby about this and he wondered if maintaining relatively high levels of estrogen post meno over a prolonged period is like putting high performance jet fuel in an old Morris minor.........He did get chided for the comparison but I could see what he was trying to say (bless him. He meant it totally in an illustrative sense - honestly)!
I think, as Dancinggirl has sensibly done during her menopause journey, that women ought to stop from time to time or try reducing the dose to see where they are. A period of 3 months unless unbearable symptoms arise/return has been suggested, but in our case we probably have nothing to lose do we? At least we''ll have a clean slate to potentially work from (hopefully)!
-
Hi Tempest, yes I see what you mean.. about stopping. And yes, maybe, just maybe (tho I've never heard it happen for anyone else)
Your husband haha, I see what he was getting at :)
Who knows why it stops working for us? We are very much in the minority. There are so many women who stay well on it for 20 - 30 years. I have to admit I am so very envious of them!!! xxx
-
Where is DG :-\ ???
-
p.s. Tempest - famous gynae Harley St, the one everyone wants to see, he told me this IS tachyphylaxis. The definition of tachyphylaxis is 'the continued or repeated exposure to a drug that may lead to a weakened pharmacological response". Doesn't have to be supraphysiological levels. However he also said that efficacy can be restored once oestrogen levels are allowed to fall and then HRT restarted - but I have never, ever read of that happening on here.
-
Aha! That makes sense......And indeed this might have happened to ladies here but they were unaware that this was the problem and are still chopping and changing HRT's instead of taking a break!
If this works out for you, and you can reinstate and all works wonderfully again then that would be WONDERFUL for you and a real eye opener for a few ladies here I'm sure!
We'll be here to support you along the way. xxxx
-
Thanks Tempest - yes EXACTLY!! But you know the weird thing? I have seen that some MM ladies chopping and changing HRT... they are patients of this very well-known and respected consultant. If taking a break is the answer then surely he'd recommend this to all patients who are experiencing loss of effect. Hmmmmm... seems very strange.
Tempest and others - if you remember at the start of this thread, I quoted the Italian Prof who said estrogen stops working because of a 'resistance' to it - analogous to insulin resistance.
Seems scientists have worked out why insulin resistance develops https://www.sciencedaily.com/releases/2016/03/160307113548.htm
The article says, "For people with type 2 diabetes, the problem of insulin resistance means there is plenty of insulin but the body does not respond to it effectively." In this case they think it's caused by certain amino acids.
It's like HRT oestrogen tachyphylaxis/resistance: we may have plenty/high levels in our blood, but the body doesn't respond to it effectively.
I feel the Meno Society should agree a position on this and publish a consensus statement. Otherwise it's just too confusing and stressful for patients.
Then we need to someone to find out why it happens and how to fix it!! Trouble is, there's not enough of us affected, so there's no money in it for doctors or drug companies xxx
-
No auto immune problems either ,well none that I'm aware of !
-
with my Hashimoto's I don't 'convert' T4 to T3. I had high levels of thyroxine from my meds, I think the level was something like 26 but my body wasn't using it so I am treated with T4/T3 combination. this sounds similar to what you are describing with the oestrogen eidelweiss.
-
BabyJane, do you feel better with T3 supplementation as well as T4? xxx
-
Goodness me yes as my body was still hypothyroid without it. My endo has put it on my medical records that I need this supplementation because there is talk of the NHS withdrawing it due to cost. As it is the lab did not do my T3 blood test before my appointment last time and my endo was not at all pleased as he didn't have a true picture of my results. The T3 question is a minefield in the NHS. It costs something like £700 for 100 tablets whereas in the EU countries it is more like £20-£30 for 100. the pharmaceutical company that makes it is holding the NHS to ransom so there are rumblings that it could be stopped leaving a whole subgroup of patients, of which I am one, worried and up creek without paddle >:(
-
I saw an article on the news about this, Babyjane! Frankly i was disgusted......
One lady was buying in from Greece for a fraction of the price but stated that she was nervous of what she was actually getting. xxxxx
-
Yes because it could contain anything as it is not regulated. They re playing with people's lives and health for profit >:(
sorry eidelweiss I have hijacked your thread :-X
-
Ah that's good BabyJane, glad it helps you. Though not at all good to learn that the pharma company is holding NHS to ransom - appalling! xxx
-
Tempest hi there good morning. How are you feeling today? xxx
-
I've made it to nearly 2pm and apart from morning anxiety on waking (the usual this past week) not too bad. If I can just get through the whole day.....
Did you manage any sleep at all Edelweiss? I was thinking of you as I went to bed last night. xxxxx
-
Hi Tempest that sounds promising good for you--- and it gives me some hope too. I'm feeling particularly bad today. I did get sleep but only on prescription pills - it's more like being knocked out than real sleep. But it's something at least. How kind and sweet of you to think of me as you were going to sleep THANK YOU xxx
-
Where is DG :-\ ???
She had problems with accessing the site from her computer when it was upgraded and the server changed or whatever was done to it - she posted in the forum guide section. She still does post from time to time but on her phone so it takes ages. :)
Hurdity x
-
Some interesting ideas on this thread - have been away so need to catch up and will read the links!
Especially interesting what you said about tachyphylaxis edelweiss because that's what I was thinking as I started reading through. However Prof Studd on his website specifically refers to supraphysiological levels being the trigger for this phenomenon (as I recall!) so if it's him now saying otherwise I am also confused and this sheds a whole new light on all our treatments!! It's also bizarre in that during our menstrual cycle our levels increase dramatically and quickly so if this effect does occur, it must be something to do with estradiol being introduced exogenously rather than from our ovaries?
I've just realised I asked about your menopause etc on another thread before seeing this one. My memory has gone fuzzy since going away for a few days!
Hurdity x
-
Hi Hurdity, yes it's very interesting/perplexing I agree.
I'm not sure whether I can or should name names of doctors, but someone who has previously written extensively about tachyphylaxis told me 'it doesn't exist', then put the phone down.
And someone else closely linked to him said of my problem 'it's tachyphylaxis'. (And it didn't need to be supraphysiological levels').
It doesn't really matter what it's called, what I am experiencing is a lack of response after repeated administration. And I believe it's more common than consultants might admit.
Yes to your point about exogenous estrogen vs our own estrogen, that is indeed puzzling. Maybe bioidenticals aren't as identical as everyone thinks? Or there's some other reason - too much constant repeated stimulation for too long? Perhaps the body prefers cyclical variation. Don't know, obviously these are all guesses.
I know you've used estrodot for years without problems, so I bet it's hard to imagine it not working. I would have found it really, REALLY hard to believe before, but there's no doubt in my mind that it happens - now it's happened to me. It's not just psychological changes, I have very obvious physical meno changes while on HRT and at high plasma levels. x
-
Oh dear!
I've come onto the site to ask, if I should ask for a higher dose of HRT...as suddenly my hot flushes and my insomnia have come back! Not to the degree that I was experiencing prior to HRT, but it's definitely creeping back in at a pace. I should mention at this stage I have thyroid disease!!
I am slightly odd in that department, as I am underactive with all the signs. But I am very sensitive to thyroxine and I can bounce to overactive on the test results (but I don't tend to have any overactive symptoms). I have always thought the problem lies with my putridity gland rather than the thyroid. However since I've been on HRT, my thyroid related problems have nearly all disappeared. I've even lost 2 stone and found my sense of humour!
So in short…are you telling me that I am going to hit that brick wall shortly. Is it worth going on a higher dose.
HRT completed changed my life…well the bloody menopause changed my damn life, HRT saved me from serial killing…always a good result. ;D
Cheers ladies xx :-*
-
Not necessarily , a higher dose might sort you
I was on max dose for 13 years with no symptoms, then wham a bunch appeared that I didn't have prior to hrt, despite quite high oestrogen levels
-
Yes Annie, indeed an increase could help Pinkfizz. I shouldn't apply my experience to anyone else. I hope it fixes you very soon Pinkfizz. xxx
-
I only say that because if there's a higher dose available and symptoms have returned then increasing the dose could be the solution. My case is completely different as they were new symptoms and I was on high dose
I wish there was an answer as to why this happens
-
Yes exactly Annie, the higher dose is the thing to try Pinkfizz. That's what consultants said was most likely in all my chats.
"I wish there was an answer as to why this happens". Me too, Annie, me too. xxx
-
Thanks ladies, I appreciate your replies. I have another 6 weeks on this dose, I will wait a couple of weeks and then go back to the doctors.
My reluctance has been, I didn't think I would need to increase so quickly... especially when it was going so well.
Question...do most women move up to the higher dose? When I went to see my doctor at the start, she said that she doubted I would move up in dose.
Regards xxx
-
I get confused who I've told my story to but originally I started on 1mg elleste solo, within 4 days it'd stopped all symptoms but about 2 weeks later they started returning so I was given 2mg and it took symptoms away again
-
Well in that case...I will make an appointment. Thank you xxx
-
Weird because when my doc put me on 2mg she said she thought I'd need it but chose to start me low dose first
-
(I'm 57 post meno) Reading this thread has made me realise that worn out receptors was what the horrible, judgemental gynae I saw 6 months ago was trying to say I had. After 7 years successful HRT (Prempak I'm afraid) symptoms began to return to my GP switched me to evorel sequi/conti. I was absolutely fine on this except for excessive hair loss so that kind of puts paid to her theory. I then entered a period of trying different types if HRT and having nasty symptoms and side effects. Now though I've been on Utrogestan and estrogel for around a month and I've been feeling really well. Fingers x'd the gynae had it wrong then.
I am thinking about cutting the estrogel down and seeing how little I can get away with and therefore how little progesterone as that's giving me side effects I'd rather not have. This thread is very interesting reading!
-
Hi Peacegirl, how interesting! What symptoms came back on Prempak? You're so lucky they went away again on a different preparation! How brilliant. I hope that you stay really well. xxx
-
So IS there such a thing as worn out receptors?!? I'm thinking there is SOMETHING and ladies suffering jolly well need to know! It makes women feel as if they've gone mad if things just stop working. Surely to God the experts know something about this?!? >:( >:( >:(
-
I haven't commented in this thread as I know nothing about HRT but find it all interesting. I think I read somewhere on this forum that the body can get used to things, start to recognise them and therefore not react properly to them. I think this was mentioned in conjunction with anti depressants but I can't remember where. :-\
-
Hi Babyjane,
I think it was me? I think I said tachyphylaxis (which can also be referred to as acquired resistance, or downregulation), can happen with ADs too - it is a very well-known thing. Americans refer to it as 'poop out' - as in Prozac poop-out.
Regardless what it's called, it all means the same result: the hormone or drug doesn't work/or work as well.
If it happens with ADs the first line is to increase dose. The second is to switch to another AD.
Like Tempest I'm just baffled why this possibility is never discussed or mentioned in any literature in relation to HRT. A google search reveals virtually nothing - except Studd's earlier papers, and women on this site and others saying 'my HRT has stopped working'.
Is it just me that thinks it's weird? xxx
-
I bet the estrogen receptors respond in a similar way to neurotransmitters and if we look at the 'poop out" of AD's we can probably apply a similar science (if there even is any science. I'm sure the experts have no idea why this happens either)!
An interesting thing I read about Premarin recently is that receptors either modify or you develop new ones (!?!) in response to conjugated equine estrogens. Some women are able to respond to this type of HRT, others not and some are not able to then switch to estradiol after prolonged use of CEE's as their receptors have become 'modified'. (You can see I've been researching everything)!
So, I'm going out on a limb here but have you ever tried Prempro Edelweiss? It might be that you need to try something totally different to estradiol. And the other option of course is Tibolone. I think that one may very well be well worth a try - don't be put off that some of us haven't done well on it, just as many here have had a good response. I'd certainly give it a thought at least and it has a calming action too in most women. xxxxxx
-
This may be unrelated, but thought it worth adding to the responses and experiences, I felt I experienced a major drop in levels of oestrogen over the xmas period, many symptoms returned, I had been a little under the weather, but this lasted for 6 to 8 weeks. I did nothing, no increase in dose and eventually went back to 'normal', I was quite worried during that time. I had my oestrogen level checked after this time, but had nothing to compare to before as not had tested.
Rhiner
-
Hi Peacegirl, how interesting! What symptoms came back on Prempak? You're so lucky they went away again on a different preparation! How brilliant. I hope that you stay really well. xxx
Ahh thanks for that Edelweiss :D
I think at the time it was suggested by my GP that this was my own hormones taking another dip so I got a return of night sweats and flushes (5 a night!) aching bones (this was a new symptom) and I never had less than 5 ulcers in my mouth at any time so I lost a bit of weight lol. The evorel regime I switched to was a higher does and worked a treat. Had I not lost so much hair I would have stayed on it. The gynae who was aggressively anti-HRT said my receptors weren't working, (and she had no evidence for this) was wrong I think. I can see how it may be true for some but maybe as suggested already an occasional break is helpful or just a different regime higher does? This thread has made me aware though not to bounce up the estrogel just because I can - want to take the minimum I need obvs ;D And yes lets have some more bloody research - I swear that if men had it there would be much much more done!
-
Tempest, thanks for the info about Adrenopuase, this makes perfect sense and kind of explains why I felt I had to give up my well paid but stressful job - it just felt too exhausting which I put down to getting older (an i guess that is what's happening) I do see women older than me powering through their 50's/60's but of course we are all different! I now work half the hours for a third of the money and life is more manageable!
-
I got a follow up letter from a Harley St practice the other day that said that one approach to my problem is 'stopping all estrogen and let the body reset the receptors'.
I asked politely for evidence of how the body resets the receptors, as I found it hard to understand how it works in practice. I've not read it happening even once on this forum.
They sent me a paper about middle-aged rats. And it wasn't about stopping estrogen and it being more effective when restarted. Er, so not quite the evidence I was looking for...
Surely consultants can't write these things if they don't have evidence or experience of them working in their patients?
-
Hmm - yes everything in medicine should be evidenced based and from studies, otherwise any pet theory can be used. The consultant must have a reason to say that though?
I'm still surprised now by the tachyphylaxis thing - because in the case of estradiol replacement (as opposed to the conventional definition) Studd specifically refers to supraphysiological levels. If this is not the case - and it can occur any time - then why are we not all suffering and also it can only be due to exogenous oestrogen otherwise the same thing would happen with our own, at ovulation? :-\
An interesting area of dicsussion...
Hurdity x
-
Hi Hurdity, yes I agree. All medical advice should be evidence-based.
I too thought the consultant must have a reason to say it, and that's why I asked for more information.
I have the "it's tachyphylaxis" in writing from one of the authors of the original papers you refer to. This was at 500 pmol/l. The other author told me 'tachyphylaxis - it doesn't exist'.
I've found it helpful to reflect on the definition of tachyphylaxis "rapidly diminishing response to successive doses of a drug, rendering it less effective".
And I've also seen that tachyphylaxis isn't limited to estrogen. People using other drugs including anti-depressants can experience tachyphylaxis. In this case it is well-documented. e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008298/
Yes, those are very good questions about the incidence, and why doesn't everyone get it. Not everyone who takes an AD gets tachyphylaxis either (genetic differences? other factors? and because they are lucky - this has wrecked my life)
Yes I thought that about exogenous estrogen too. There's no answer I can find, but yes I agree with you.
Because I've been so badly affected, I am obviously deeply emotionally invested in this. I am very confused and frustrated by the lack of consensus, evidence and science around this issue.
But I recognise that I need to find a way to accept what's happened as otherwise I won't be able to live a fulfilling life from now on. But it is extremely hard when it affects every aspect of my life so negatively. I know I'm not the only one affected - others here are suffering too xxx
-
Dear Edelweiss!
Sitting here today with Hubby after a good day (for me) yesterday but feeling horrible today. Only one more day tomorrow before I see Professor Lumsden. As usual, I actually feel WORSE overall on estrogen only but keep telling myself its early days although that familiar pattern of feeling ramped up, sick to the point of distraction and mad palpitations is creeping back again. I kept hoping that somehow this time it would be different and have approached it positively this time with as much hope as I could muster.
The sun is shining, people are out enjoying themselves which I certainly don't begrudge them but it's jarring isn't it?
Did you ever get a peep out of Diane Danzbrink? I haven't heard a word and was hoping for a call back at least as mine and her stories are pretty much identical.
To be honest I'm not even looking forward to my appointment with Professor Lumsden as I remember last time she told me that 'we're running out of options'. I doubt very much if she'll entertain the notion of progesterone even though it was the answer in Diane's case, as I didn't have prior endometriosis..
What ARE we going to do??? :'(
-
Oh Tempest, I'm so sorry. I do so wish there was an easier route for you.
I did hear from Diane, by text - but only very briefly. I'm sorry you didn't. Can I help at all?
I know exactly what you mean about looking at people out enjoying themselves - in bars, restaurants, parks. I look at them too and think similar things. It is jarring and it's impossible to believe the difference in their experience and ours.
I used to love eating out, but now I have no appetite it seems pointless. But I am going to get out today and be part of the world. I am going to try and chose to believe this will end one day - or at least change in some way - and i can rejoin the fun. Hmmm as i write that it seems unlikely but I am going to try and do it anyway.
I understand what you are saying about your appt with Prof L. Completely. There are only 2 things I can suggest which are she might be more flexible than you think, and the other is have you a list of the things you wanted to discuss?
I'm always curious about their other more complex cases. What tended to work for those ladies? Or are we just so special that there are no precedents.
Sending you very much love and wishing for health and happiness for you xxx
-
Hi Tempest, glad you managed last night without hubby
I really don't think it should matter whether we had endometriosis or not to qualify for progesterone. I'm way less educated on all this than you but progesterone' sole purpose isn't just womb lining. It's known to have calming elements to it for one.
I can't help but keep reliving my history. The minute my progesterone plummeted and/or the same time my ovaries went AWOL, my life changed drastically and dramatically
In my opinion, it's about balancing hormones not just keep throwing large doses of oestrogen at us ladies with no uterus. We both know first hand the horrible symptoms of high oestrogen gives us xxx
I've never really thought much about compounded hrt but in many ways it makes sense if you get an overall, over a period of time, picture of hormone levels and work with that adding in appropriately to give balance. So many other conditions are tweaked to get an ideal level (be it numerical level or health/functional level)
-
Tempest - I just texted Diane and asked for you. She says she can speak to you at 2.30pm tomorrow Monday. Good luck! xxx
Hello Annie, I'm so sorry things changed so drastically and dramatically for you. This was in 2012 wasn't it? xxx
-
Yes 2012. 13 years after feeling great on oestrogen only hrt
Do glad you got hold of Diane for Tempest xx
-
Oh my goodness, you did that for ME Edelweiss??? I cannot believe your wonderful kindness!! Thank you, thank you SO MUCH!!!!!
Hubby is here and reading all your replies too (I hope you don't mind). He says that he feels he knows you all now and says you are simply wonderful and strong ladies. Annie, he always asks about you in particular as we have known each other for over a year via this forum and every bump, every HRT attempt and every hospital crisis admission, you have been there for me (I worry that I've been an awful drain on you, though ).
He says to tell you that he himself is going to ask Professor Lumsden what can be done and why there isn't help for women who are 'complex cases' as he now knows it's not just me. He's particularly going to ask, what happens if the HRT just doesn't work and the women are living awful lives as he has taken your story to heart Edelweiss. And he's going to challenge the whole idea of just replacing estrogen too Annie as he thinks the whole notion is ridiculous as both you and I have never felt well on it. (He asked my Gynae. about this a few weeks ago and he admitted his speciality wasn't HRT but that the 'party line' is that its not needed when there is no uterus).
I hope Professor Lumsden is prepared for a big hairy Scottish guy asking her so many questions on women's issues! He said to me that so many guys he has met this past 2 years have said that their wives are in menopause and really struggling too (he isn't afraid to talk to people about this. One of his friend's wives has spent 6 months in the psychiatric hospital due to perimenopause).
I hope we get answers! We need them.
Thank you so much for all your love and support and I very much look forward to speaking to Diane, Edelweiss! xxxxx
-
Say hi right back to hubby!
I feel like I know him too !
Tempest, you really have to not worry about putting all your thoughts, ideas, rants, worries etc to us. We've always said we're always here for you and that remains. You are very highly regarded here and we've walked virtually alongside you in your journey. You give so much to this community you deserve so much more in return
You're special, and not just because your situation is complicated *wink & kiss*
Xxx
-
Dear Annie - hear hear!!!
Dear Tempest, it's a real pleasure. It makes me feel better too! I am so happy to help in any way I can.
I have pm'd you the details to confirm and her mobile number to make sure you have the right one.
Hello to your hubby too and thank you to him for reading my story, and speaking up for us. We need support from men, as well as from each other. Our husbands and partners can be strong and objective voices, when we are feeling less strong. I love the idea of your 'big, hairy Scottish guy' making the case for you and all of us - thank you to him!
To be fair, I guess the doctors really want to help though. The vast majority of women just don't have these problems.
Ladies, Diane sounds absolutely lovely and very genuinely wanting to help. xxx
-
Thanks ladies, I appreciate your replies. I have another 6 weeks on this dose, I will wait a couple of weeks and then go back to the doctors.
My reluctance has been, I didn't think I would need to increase so quickly... especially when it was going so well.
Question...do most women move up to the higher dose? When I went to see my doctor at the start, she said that she doubted I would move up in dose.
Regards xxx
Ladies - Sorry to resurrect this post, however further to me wondering if I needed to go up in dose. Everything seemed to correct itself and I was fine. I did nothing and life was good again. HOWEVER, I have noticed my symptoms return a couple of days into the Progestogen part of my HRT. I even have a bleed (more like spotting) a week before I finish the Prog part. However I have always been a bit hit and miss with a bleed at the end anyway. But is spotting worrying?
I am not saying my symptoms are bad…but is this all a bit odd??
Cheers xxxx
-
Hi Pinkfizz glad you had improvement without going up a dose. I'm not sure about the spotting - worth a trip to your GP if you're worried I'd say. Loads of love xxx
-
HI there, I was Kliofem 2mg/1mg for 9years. In January 2018 I developed, overnight, acute anxiety and depression. My GP offered diazapham and citalopram. I had never experienced any of these before. I have what some would say is a stressful job but I didn't find it stressful but accepted that I must have burned out. I didn't take the diazapham and the citalopram didn't seem to work. I contacted a menopause Doctor who said that she thought my receptors to Kilofem had stopped working (after doing the Greene Climacteric Scale assessment on me) and moved me on Transderman Everol Conti patches. I am 2 weeks on these and they seem to be significantly helping. I think the estradiol level is the same it is just that my body is getting this through the skin as opposed to orally which says to me that it is not the estradiol that is the problem but the manner in which your body gets it. I hope don't confuse the issue and it is early days for me yet but there must be something in the differant way the HRT is received i.e. by skin or mouth.
-
Some of the oestrogen is lost in the liver and digestive system so you could be getting more by using transdermal method. If it's working then keep using it.
-
I have just read all these threads & found it very interesting about the down regulation of oestrogen receptors. Over 9 years I have tried every different type of HRT. Some worked better than others but never all the time. I always guessed that there was a problem with my oestrogen receptors being faulty. I always thought it was the progesterone side of it as couldn't tolerate it at all but no had a total hysterectomy 8 years & still the oestrogen didn't work. I stopped all hrt 10 months ago & I am going to start it again. I am hoping by stopping it it will have reset my receptors. I agree that there should be more research into why when women have tried lots of HRTs they just don't work for them but it works for others. There has to be a reason