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[Gilla999]

Hi ladies

It's been two months now since everything got turned upside down, I've only had about 4 or 5 normal nights of sleep since mid December, and they are thanks to Amitriptyline.
I seem to be suffering with some kind of mast cell activation condition which at least in part is triggered by my Estrogen level, which has sky rocketed in the last two months. The symptoms of that are anaphylaxis in nature - constricted throat, wheezing, coughing, tingling lips etc. It's been horrendous. In January I reduced my HRT substantially and then fully came off Lenzetto for a week. Once the hypnic jerks got too bad I then restarted on half a 25mg Estradot patch last weekend. Had a few better nights and the histamine issues have died down, but I'm once again suffering with low E symptoms of imsomnia and hypnic jerks. However I can't increase my HRT without setting off the mast cell problems - I'm totally caught in the middle! I's also not only HRT that causes the issues, it's my own Estrogent too. It's as though I've become allergic to Estrogen!

 I'd been planning to start zoladex (chemical menopause) this week but I'm not convinced it will fix the issue as I'll need to have add back HRT.

I realise it's a pretty unique situation and don't expect any magic answers, but feeling pretty depressed and lonely after spending two months alone lying on the sofa having not slept, so would appreciate any kind words! Xx

[Flossieteacake]

Oh Gilla, I am so so sorry you are going through this. I have had an anaphylactic shock and it was very frightening. It really is tough when we do not fit the 'norm' when it comes to medication. I feel there is so little understanding of things like this. Not sleeping well on top of all this is just even worse as without sleep it is hard to think straight.

I really hope the zoladex helps you. I can understand why you do not have much hope with all you have been through but hopefully it may help with some of the symptoms.

I find menopause very lonely at times. You are brave to reach out on here. I send you a virtual hug.

[CLKD]

Do U see a dedicated menopause specialist? 

[sheila99]

I'm sorry I can't help but wondered if it might be worth an email to Dr Currie? It's extremely difficult when you have problems spanning more than one speciality. Or perhaps a pm to Hurdity.
 
Sorry i cant offer anything helpful but cyber hugs are winging their way to you.

[Katherine]

Hi Gilla,

I’m so sorry you are going through this, are you seeing a specialist? Although I can’t help in terms of knowledge I just wanted to reach out to you and tell you you’re not alone, we are here for you and care about you. You sound so strong. I’ve had breathing difficulties myself and know how frightening it is. I really hope you  feel better soon. Keep posting and I’m sure many of the ladies will reply. In the meantime, I’m sending you a big hug. Xxx

[Gilla999]

Thanks ladies for the kind words, they are really very much appreciated. As you say Sheila, it's particularly difficult when you have multiple complex things happening. I know others struggle with their thyrod and hormones for example... for me it seems to be my immune system and my hormones.

In terms of specialists:

- I saw someone once at the very start in 2021 who put me onto HRT
- I was last year referred to an NHS meno specialist - 3 month waiting list - who was very nice but suggested all seemed ok from my blood results (even though my Estrogen was 900 pmol) and to potentially try Zoladex if things didn't improve, then discharged me
- I saw another specialist a couple of weeks ago who I discussed Zolodex with - she was very good, but I can't really afford to see her regularly

Ironically I got a proper telling off from the nurse at my GP surgery this week for "seeing a meno specialist not through us". She was so condescending it left me in tears.

My over arching sense is that I have been on too high a dose of HRT from the start and my immune system has somehow now developed a 'disliking' for it, despite the fact my brain still wants it. I am even seriously questioning whether I was ever in perimenopause to start with, because my journey (as far as I'm aware) doesn't fit the norm.... I had super high Estrogen levels for two years in my late 30s, then it began to fall rapidly over the space of a year which caused me to be extremely symptomatic with low E symptoms. I eventually went onto HRT which fixed the problems. But three years after that I am still ovulating regularly every month and actually my Estrogen now seems to be going very high again, which makes no sense to me whatsoever and I haven't observed anyone else here experiencing that.... my understanding was that your Estrogen is erratic and then falls away eventually... not the other way around!

I really do appreciate the support, especially when I'm really aware it's not a 'question' that someone here can help answer. It's just been a pretty lonely and alienating couple of months - I live alone and now signed off work sick long term. Thanks again for the kind words xxx

[Flossieteacake]

I can see why you are wondering if your symptoms were meno to begin with. It is almost like there was another reason for low oestrogen levels but HRT was unable to solve it which makes sense if it was not meno.

That nurse is so rude and it is none of her business who you see. You saw a specialist because it is so hard to get anywhere from the GP in the first place. I really am sorry she hurt you. Pity you cannot make a complaint about her but I know that will feel overwhelming with all you have going on.

Please continue to post on here and let everybody support you. You are not alone.

[discogirl]

hi Gilla999

i just wanted to 9ffer my support and to say how sorry i am that your going through all this.

take care xxx

[Gilla999]

Yes Flossie exactly - I now wonder if there was something else hormonally that caused either high Estrogen for two years (and then the return to normal caused problems) or if something non Peri related just caused my Estrogen to drop. It doesn't seem to make any sense that it would decline rapidly (and was about 200 pmol on day 21) for a year and then 3 years later go regularly back up to 600 or 700 (even without HRT). I feel so lost with it all.

The not sleeping is the hardest part, and I've seen so many other ladies here going through it so I know I'm nothing special. Haven't had more than 3 or 4 hours a night without drugging myself to sleep since all this started in mid December, and that takes its toll after a while, mentally and physically.

Disco thank you - I really do appreciate the support, feeling very low. Xxx

[Flossieteacake]

Yes Flossie exactly - I now wonder if there was something else hormonally that caused either high Estrogen for two years (and then the return to normal caused problems) or if something non Peri related just caused my Estrogen to drop. It doesn't seem to make any sense that it would decline rapidly (and was about 200 pmol on day 21) for a year and then 3 years later go regularly back up to 600 or 700 (even without HRT). I feel so lost with it all.

The not sleeping is the hardest part, and I've seen so many other ladies here going through it so I know I'm nothing special. Haven't had more than 3 or 4 hours a night without drugging myself to sleep since all this started in mid December, and that takes its toll after a while, mentally and physically.

Disco thank you - I really do appreciate the support, feeling very low. Xxx

Just because others have issues sleeping does not mean your issues are unimportant. I think not sleeping well is so detrimental to our mental health. One option could be to ask for anti anxiety medication as some of them have a sedating affect and this may help you to sleep as well as your anxiety. I can fully understand why you are feeling low. I would too. It is horrible to not know why we feel a certain way and even worse, to not have supportive medical practitioner's to help us with it.

[discogirl]

Yes Flossie exactly - I now wonder if there was something else hormonally that caused either high Estrogen for two years (and then the return to normal caused problems) or if something non Peri related just caused my Estrogen to drop. It doesn't seem to make any sense that it would decline rapidly (and was about 200 pmol on day 21) for a year and then 3 years later go regularly back up to 600 or 700 (even without HRT). I feel so lost with it all.

The not sleeping is the hardest part, and I've seen so many other ladies here going through it so I know I'm nothing special. Haven't had more than 3 or 4 hours a night without drugging myself to sleep since all this started in mid December, and that takes its toll after a while, mentally and physically.

Disco thank you - I really do appreciate the support, feeling very low. Xxx

i understand about the not sleeping bit. thats really hard to cope with.

for me just knowing im not alone in this helps which is where this forum really helps.

please feel free to message me anytime for a bit of support.

i really hope things change for you. we all have to believe that there is light at the end of this tunnel but do know your not going through this alone xxx

[Pippa52]

Gilla I am so so sorry to hear what awful problems you are having.  As many others have said you are not alone and we all support you .  It sounds awful what you are going through I wish I knew what I could do to help.  One thing I will say is that Lenzetto made me feel very unwell as did Oestrogel for some reason.  I do hope so much you can get some answers and that you will start to feel better soon my heart goes out to you it really does.  Sending love and empathy xxxx

[Gilla999]

Thank you lovely ladies, it really does help to know you're not going through it all alone.

Pippa I actually came off Lenzetto completely after being in a horrendous place last month - had a break of one week - and then started on 25mg of Estradot, which I've been on now for one week. My sense is that my brain wants a higher dose than that (which is causing some of my problems, especially the sleep and very low feelings), but my body absolutely cannot tolerate it anymore and any time I try to increase my dose even very slightly, it sets off all of my scary anaphyalxis type symptoms. These symptoms all started the day after the Covid booster in December 21 and got progressiely worse over time, so I don't think my hormones are necessarily the root cause of what's going on, but they certainly seem to aggravate it. (By the way I'm not anti vax at all! Just stating what happened). For those of us with auto immune tendancies, there seems to be a huge cross over between vaccine problems / hormone problems / Covid, but it's no where near properly understood yet.

Disco the same goes to you - any time you need a bit of support, feel free to message me. I'm so grateful to have found this forum!

Flossie I'm already on a couple of antidepressants which I have only ever needed to be on as a result of anxiety and sleep issues solely due to this hormone hell over the last three years. But my personal experience has been that if your hormones are not happy, no medication is strong enough to "over ride" that, although they can definitely take the edge off. Hopefully my body will adjust to the lower dose of HRT soon

Sending you all lots of love and hope you have a good Sunday xx

[Flossieteacake]

I can understand that. If it is hormonal then that is what needs addressing.