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[edelweiss]

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

[edelweiss]

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

[babyjane]

Do any of you ladies have thyroid problems/Hashimoto's?

Yes I do 

[dazned]

No I have no problem with thyroid.

[edelweiss]

Thanks babyJane and dazned. xxx

[Tempest]

 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?

[edelweiss]

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

[Elizabethrose]

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

[Annie0710]

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

[edelweiss]

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

[Tempest]

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)!

[edelweiss]

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

[CLKD]

Where is DG   

[edelweiss]

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.

[Tempest]

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