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[Tempest]

This is a thread specifically for ladies for whom HRT has stopped working, or who have had extreme difficulties using HRT.

Anyone is very welcome to post of course as this is an open forum, but please respect that these ladies are having particular difficulties and therefore may not conform to what is considered 'the norm' when it comes to HRT. Thank you! xxxxx

[edelweiss]

Thank you so much Tempest.

How I wish I wasn't on this road, but since I am, I am glad it is with you 
And hello to all the other ladies who are experiencing such difficulties.

Just to repeat what I said on another thread, I had 2 calls today that might just help us gain some awareness at least.

I don't want to reveal their identities on here but experts in UK and US who have each offered to correspond and blog about this issue that's affecting us.

For me that would be a small step forward as it is just not being acknowledged. xxx

[Tempest]

That is simply wonderful, Edelweiss!

Despite your every day struggle, you're being so proactive in seeking answers and sharing your findings to help others.

What a wonderfully generous and kind lady you are! Thank you so much. xxxxx

[edelweiss]

Hey lovely, we can but hope... and perhaps time will heal us too. xxx

[Annie0710]

Thanks ladies for this.  Would it help outlining a timeline of us ?

[Tempest]

I think I may be on to something here in my case (and Annie will be interested in this too), after my dialogue today with Hurdity regarding allergies:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537328/

I'm going to contact my Anaphylaxis Consultant to ask if it's possible that exogenous estrogen is causing my body to produce an abnormal amount of histamine again through mast cell degranulation - just as it did in perimenopause before my oopherectomy.

If so, this would account for my body's violent reaction to estrogen only hrt. It may just be that my immune system is trying to tell me something!

xxxxx

[edelweiss]

Hi Annie, what do you mean a timeline of us? Sorry if I'm being thick xxx

[Tempest]

I think it would be good if I understand Annie correctly to share what went wrong with us, when and what our symptoms are.

I'm truly astounded how almost identical you and Alesia are, Edelweiss! xxxxx

[dazned]

What a good thread to start as there could be others later on down the line that might possibly find themselves in the same position.
My time line briefly goes
Age 48 symptoms anxiety,palpitations,panick attacks,genuinely felt that I had a terminal illness,didn't know where I felt comfortable being. Took about a year to find a gp to believe that it could be meno related as NO not flushes ever ! This was so,so unlike me,a confident,bubbly person reduced to a gibbering wreck.
49 started elleste dust within the month felt back on track.
Fast forward 6/7 years all the above symptoms returned seemingly overnight for no apparent reason,so obviously this time I'm more convinced than ever it's terminal as I'm on hrt right !
Went to private specialist tried various other regimes,femoston,Conti ,sequi,oestrogen only ,long cycle plus utrogestone,livial. Nothing worked anymore ! Even specialist was baffled.
I have no idea why it doesn't cut the mustard anymore all I know is it doesn't.
And there you have it ! 

[Tempest]

Wow, Dazned! I had no idea that your story was the same as the other ladies!

Thank you so much for sharing with us, and for being such a wonderful support to me personally.

Can I ask, generally speaking, how are you these days? Would you say for the most part that your symptoms are gone?

Hugs! xxxxxx

[edelweiss]

Hello again - Tempest there are loads of us on here I swear it. I won't name names of course - but I can think who we are. Dr. Currie told me it's not that uncommon, which is why I cannot understand why it isn't mentioned on ANY official documents. For example, none of the NHS literature says ANYTHING about HRT may not work for everyone, or HRT can stop being effective. Nothing. That's not right, surely? xxx

[edelweiss]

Also... HRT has been around a long time right? So this MUST have happened to other women before in the 80s, 90s, 00s right? All pre-internet forums obviously, but where are the women now and what happened to them? Did they eventually recover some normality (please God). Surely our consultants know of some of them? They don't mention it.

They act like it's the first time they've ever encountered it - yet HERE WE ALL ARE! And we are all seeing the same handful of consultants at some point or other.

What is going on?! xxx

[Lizab]

I'm not sure I belong here as I wasn't settled on hrt very long at all before it turned on me.

Timeline:
Aside from early onset, my timeline followed the STRAW perfectly.
Ages 36-38 menstrual changes, night sweats during periods.
Age 38, periods mostly stopped. Anxiety, palpitations, trembly legs, severe flushes, fear, breasts size decreased a little.
Age 39, started hrt. First 6 months: Major emotional swings. Palpitations, flushing and trembles cured, breast size back to previous. Next 5 months: life is good. End of 39: Major depression and unwell feeling. Age 40: stopped hrt. Immediate relief, still improving and gets better every day. I am having return of some physical symptoms, either they are less severe now, or after all I've been through I'm better equipped to cope with them.

I find your histamine connection interesting, as I remember describing my feelings as almost like an allergic reaction, but I had no real allergy symptoms like sinus, itchy eyes, breathing problems or rash.

[dazned]

In the midst of the last time my symptoms returned I started mirtazapine which took all my symptoms away and I understand that taking an AD isn't protecting my heart and bones and that some find that not to be appropriate but all I care about is that I have my life back!
From being unable to leave my sofa ,unable to work,not wanting to socialise I returned to work,planned a 3 centre holiday to Canada and the States and went,bought/sold house,moved 200 miles away,drove on my own all that way ! I've managed to do things that I never thought I'd be capable of doing again. Don't get me wrong I still have up and down days but then so does everyone. So I'm grateful to the gp who persuaded me to try it and the lady on here who virtually held my hand through the start up as she too was on it,thank you. I also think that my decision to stop wasting my life on chasing the perfect hrt was the correct one for  ME ! Very much against the grain for me I stopped asking "but why "  wasn't easy but when I accepted that this was how it is now I realised that I just had to get on with my life and that's what I was enabled to do.
Of course this is just my story.

[Tempest]

It most certainly ISN'T right, Edelweiss and this makes me very, very angry! From a legal point of view, it should be required that this is stated as it's misleading women into believing its a guaranteed 'cure' for vasomotor symptoms at the least.

Time and again I've seen women very distressed on here when things are not working out after trialling various HRT's,  or indeed they have stopped working (I can think of a few specific ladies too).

This is why it's wonderful that you've spoken out, and we now have this thread. Ladies are often led to believe from various sources that its THEM to blame, or they are being somehow neurotic.

My Husband (who says hello) is just home from work and has said to me over dinner 'thank God you stopped that gel again. You were looking awful and acting really bizarre again. Worse than last time'! My body just hates estradiol! I just don't understand it. xxxxx