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[Lizab]

Oh edelweiss, don't be sorry for me. I'm doing so much better now! I'm not sure how I survived the road to here, but I believe my body is finally finding balance. I hope the Tibolone is the magic ticket for you!

[Annie0710]

I can't remember what she said Tempest.  We ran way over 10 mins.  I gave her list of my back problems and other symptoms that may be connected and ended up being diagnosed.  She didn't say about auto immune but started asking about joints etc and wrote down a website for me to look at.  I do carry gloves everywhere but it seems it happens no matter what.  My granddaughter thinks it's awesome and watches for the colour to come back ! But she's referred me to a specialist to get a proper assessment of my back x

[edelweiss]

Good morning lovely ladies! How are you today?

I know some of us are feeling terrible, but I hope that today brings you some hope or comfort.
Via this thread we've heard of ladies who were at their absolute lowest, and got better with help and time. So hold that in your heart.

I wish each and every one of us health and happiness. xxx

[Hurdity]

Hi there

When talking about HRT/oestrogen stopping working - it is important to distinguish between -those of you who have experienced abrupt surgical menopause and who have been taking oestrogen for several years and then it not working (for example) and those who have gone through a normal menopause.

There are several women on here (ie the forum) who experience a resumption of symptoms several years after taking HRT and especially if they started taking it while in peri-menopause, or early in peri-menopause. This is because during peri-menopause oestrogen levels are fluctuating, but further towards menopause they begin to decline until the last ovulation. Following this time oestrogen levels continue to fluctuate a little but overall fall dramatically over the next two years at which point - or sometime after this - symptoms may recur despite being on HRT. In some women symptoms only appear for the first time 2-3 years after their last period.

So I just wanted to say that in some cases ( maybe dazned - depending when you started taking it?) it is not the oestrogen stopping working, rather the body reacting to a further fall in oestrogen. In these cases a small adjustment to the HRT dose should help.  Sometimes (from what I've read on here) it is more difficult to adjust to the right dose if you have been on a high dose of HRT during peri - especially as there can be resistance to going higher eg if you are already on the maximum dose.

Just thought I should mention this before women generally start to despair - and of course this is different from the phenomenon you are describing - of symptoms re-appearing after a period of time, and not being alleviated by increases in oestrogen dose!

Hurdity x

[Tempest]

We do have a surgical menopause thread already, Stellajane. xxxxx

[edelweiss]

Hi Hurdity, this is very interesting thank you so much for your knowledge and insight, particularly about the body reacting to a further fall in estrogen as the woman passes through peri to meno, while on HRT. In these cases blood tests would reveal the decline in E2 wouldn't they? And this can be addressed.

I'm guessing you have a medical background and you've witnessed this in practice. Could you share the incidence rates of women experiencing what you describe (falls in estrogen levels that require a 'top up' dose)? And what are the most frequently recorded levels of E2 as it happens?

Do you also have a sense of comparative numbers of women the 'not working at any level' phenomenon affects?

Thank you so much xxx

[Tempest]

Very good points Edelweiss. I would be interested in reading any data Hurdity may have on these issues as they seem to affect a few women here. It would be invaluable if there was some definitive information out there.

Thank you, Hurdity. xxxxx

[edelweiss]

Yes please Hurdity. There are lots of women here who will want to know more, whichever category they fall into (levels falling - need top-up, or just unresponsive). This info is in short supply and would so appreciate your advice. Thank you so much xxx

[ALESIA]

Gosh ladies so much info I'm way behind and need to catch up! 

Thank you all for sharing your stories and knowledge!

Will respond and post my story asap

Love to you all xxx

[ALESIA]

Thank you tempest for starting the thread 

I can't think of a more wonderful group of ladies to be sharing this journey with! You are all so kind and just lovely!  xxx

[Tempest]

You're so welcome, dear Alesia! How are you today? xxxxx

[Lizab]

I think in my case, natural but slightly premature menopause, my brain just didn't like the estrogen patches. My physical symptoms were helped by the patches, in that the hrt certainly did help. In hindsight, the hrt kicked up my emotions and made me a little crazy from the beginning, then I adjusted somewhat before it really made me nuts. I did not try any other forms of estrogen.

Another piece of the puzzle may be in other autoimmune issues. I've had Hashimotos since around 2006. I know several ladies on the forum have this or other autoimmune disorders. Are we the ones that hrt turns against or stops working? Possibly no, but I can't keep straight who has what going on so I thought it was worth asking.

[edelweiss]

Yes I have Hashimoto's too Lizab - it's an autoimmune disorder as you know.

I searched this site for all the women whose HRT stopped working. I read their stories and I estimated at least 75% mentioned they had Hashimoto's/thyroid disease. I believe the incidence of Hashi's among menopausal women is 10-20% - certainly nowhere near as high as seems for us 'estrogen non-responders'.

I told several eminent specialists what I'd noticed. They weren't interested e.g. "there is often overlap of menopause and thyroid problems - this is the most likely reason for the association".

xxx

[edelweiss]

And here is what an Italian professor who has studied oestrogen and receptors for years told me:

as you seem to know, a hormone induces his 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 lack of its receptor. Based on the fact that estrogen replacement therapy keeps the level of estrogen within normal/high values, so the lack of effect must depend on lack/resistance of receptors.

There is an extremely rare genetic condition, the "Estrogen Insensitivity Syndrome",  in which the estrogen receptor is defective. In your case, the insensitivity is acquired.  I would suggest that in your case the insensitivity to estrogen finds its origin in an increased resistance to the hormone, like in diabetes type 2. .


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. I do not think that thyroxine may interfer with binding of estrogen to its receptor, but I do not have directly searched for this effect. Finally, I am not aware of specific research on the subject of your interest, nor it iwas a subject of my research, which is more at the basic molecular level. Hoping to have been helpful, best regards

[ALESIA]

I am feeling a little better this morning thank you Tempest 

My story so far.....

Age 21 ovarian cyst right ovary removed, several ops in between that then total hysterectomy 1996 aged 31 due to lots of cysts everywhere!

HRT for 21 years Oestrogel 2 pumps (prescribed 4 pumps found it too much)

Several episodes of anxiety and depression through my 30's 40's

Sept 2016 totally out of the blue ... nausea, loss of appetite, dizziness, rosacea, tingling extremities, fatigue, burning stomach, burning throat and tongue, anxiety diagnosed with gastritis, hiatus hernia given PPI,s no improvement. Continued to feel so ill and symptoms progressed to belching, vomiting, undigested food in stools, dry skin/nails, hair thinning, palpitations, burning face and neck, adrenaline surges, visual disturbances, twitching eyelids and muscles, insomnia, drenching night sweats, fear, dread, suicidal thoughts, tension, extreme weight loss, internal trembling, cold hands and feet, shivering feeling cold all the time, worsening of numbness and tingling arms, legs, memory loss, unable to concentrate, tearfulness, feeling like I'm dying or going to collapse, weakness, feeling off balance, loss of muscle strength, strange minty menthol taste in mouth, intolerance to any medication ...

I could go on, the list of symptoms is ridiculous and I felt like a hypocondriac trying to explain just how ill I felt to my doctors, of course I thought I had something dreadfully wrong with me, it wasn't until the drenching night sweats that the penny finally dropped!

I've seen 2 gastros, endo, neuro had every blood test you can think of, given 3 types of AD's which made me feel worse, at no point did any of them suggest it could be meno!

I've gone from being a happy confident creative person to a jibbering wreck, I barely recognise myself, I'm afraid to be left on my own for any length of time, I can't drive my car or go anywhere on my own, I haven't been able to work for the last 7 months and I've become claustrophobic too .... how can this happen to us and no one be able to help or give us answers??

It's a struggle to get through every day but I will not give up hope!

My heart goes out to all of you brave and lovely ladies who are suffering this horrific ride!

Love and hugs to you all xxx