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[JoannFran]

Good morning everyone

I’ve had a pretty rough couple of years with peri. I’m 49. Started a few years ago with debilitating anxiety, insomnia, body tremors when trying to sleep and jerking awake, overwhelm, joint aches and lots of other weird symptoms. Hardly ever had any hot flushes or night sweats. Periods were regular.
I started HRT just over 2 years ago and worked up to 100 Evorel and utro. Also added in testosterone. Should say that I never really felt ok when on the HRT.
I also started taking propranolol at the same time to help with the anxiety and racing heart. It helped at first.
Over the 2 years I’ve been getting worse and worse with anxiety, depression and the most awful PVCs/ectopic beats. These became so unbearable (every other beat) that I seriously considered not being around anymore 
I tried upping estrogen to see if that was the reason but didn’t make any difference. Anyway I went to my Dr 5 weeks ago when I was at rock bottom and she said to stop the HRT and come off the propranolol. So I took the HRT off cold turkey and started to reduce the propranolol. The day after I took off the HRT I started to feel relief from the poisoned feeling. Over the month I also reduced my propranolol and now I’ve been off of it for 2 weeks.

Anyway things have been going ok. I am definitely feeling mentally better and didn’t realised how bad my mental health had gotten (I felt psychotic).

However last night I couldn’t sleep and had the old wired, jerky feeling when drifting off and woke this morning to a racing heart and horrible anxiety. I now don’t know if this is a withdrawal from stopping the propranolol (unlikely after 2 weeks?). Or if it’s my own hormones as this is how I felt before the HRT and propranolol.

Will obviously see what happens over the next few weeks but just wondered if anyone had any advice about stopping HRT and how you managed your symptoms? My Dr said some people just can’t tolerate estrogen (even though it’s body identical).

I’m not ruling out trying a different HRT if I need to (tried the gel and it made my anxiety worse).

Anyone stopped HRT and felt better?

Sorry for the long post!

Any advice would be great, thank you x

[Lesred]

Hi JoannFran

I tried 2 different HRT types last year ( combined conti patches then gel and utro) and I found the initial few months great and then gradually the side effects crept in, I was becoming more and more anxious about whether to lower or increase gel and ended up so fed up I stopped at the end of March ( my heart also started feeling weird, prob anxiety) I had a lovely 5/6 months of feeling fairly stable apart from a niggly cough which I think another thread points out is probably a dry throat, it comes and goes and I have suffered with allergies for about 15 years now ( notably when peri started!) Like you I could feel the relief the moment the Hrt went out of my system, however I’ve also never written it off completely!

So I’m now nearly 8 months off it and some of the old issues are creeping in, like VA, sinus problems and a tiny bit of anxiety so I tried Ovestin again( I had some left over and hadn’t used since Feb) well I think as I’m probably so dry it def went systemic as I started to feel v weird, cramps, bowel upset,bladder felt worse and even more uncomfortable. I have always struggled with topical oestrogen but was hoping it might feel better this time, alas not so much.

So where does that leave us who can’t deal with HRT…. Not sure but definitely it feels like a case of choosing the symptoms you can bare because, for me, hrt solved some and brought new ones which freaked me out a little. I know having read posts on this site for a few years this is a very common problem albeit highly frustrating!

I just wanted to say I hear you and I’m still fairly ok without but sometimes wonder if I should retry but not sure I am ready to start the rollercoaster again yet, off to my acupuncturist shortly? He at least sorts the clenching jaw and sinuses 

Sorry I probably haven’t helped much but I do think HRT is a tricky beast to get right! You have my sympathy and if anyone has the answer I’m listening too

Les x x

[JoannFran]

Hi Les

Thanks so much for your reply. Such a pain seemingly not being able to tolerate HRT.

You’re right about choosing the symptoms you can bare and I think for me at the moment I’m better off without out.  I honestly felt like my body was having a reaction to it.

I thinking of looking into bio-identical hormones and maybe trying a progesterone cream. I know nothing about this though so will do a lot of research before I embark on anything else. Is this something you’ve considered?

My dr thinks that I’m just unlucky that it doesn’t suit and I’ll be better to go holistically. I don’t care either way as long as I’m not feeling horrific!

I’m in a much better place than I was though, 5 weeks ago I was considering a way out (and I don’t say that lightly or flippantly)!!!

Also  ;)quite cross with the meno drs I saw (3 different ones) and they all wanted to up the estrogen. It was only by seeing my gp and her realising I was rock bottom and then suggested just stop everything I was on!

Interested to see if anyone else has had similar to us!

Thanks for replying, you were very helpful! Nice to know it’s not just me

[Kathleen]

Hello ladies.

I feel your pain! 

I am post meno and using HRT but I have never felt the magic that other women experience, notably some celebrities ( btw I wonder if Davina is remembering to stick on her patch and rub in her gel now that she is recovering from brain surgery).

I was three years post meno before I started HRT because I was convinced that I could manage without it, eventually it was the all day anxiety and internal shaking for over six months that sent me to my GP, begging for help. That was in 2013 and I have played around with HRT ever since. A few years ago I decided enough was enough and weaned myself off of everything. Initially I felt about the same, no better but no worse either. After a few weeks the night sweats and flushes returned but no so bad, the VA symptoms began but again, I coped, it was the emotional rollercoaster that floored me ( and still does).
I decided to try HRT again and so here I am, in a kind of no -  man's  land of symptoms,

I read this post with interest because I am seriously considering coming off HRT again. Perhaps this time I won't be in floods of tears for no reason ( I am often low in mood and tearful  but it was more intense without HRT).

One option is to come off systemic HRT but introduce a topical product, some ladies say that they do absorb a little oestrogen systemically and that may be all that's needed.  Another idea is to reduce oestrogen but stay on Utrogestan as people like us may do better substituting progesterone rather than oestrogen.

It is so frustrating and annoying that the supposed treatment for the menopause just doesn't help some of us or even makes us worse, but the medical profession don't have the answer.

Sorry for the long post and I hope we all find a solution soon. I will certainly keep looking!

Take care ladies.

K.

[DottyD68]

Hi JoannFran

I've just replied to you on my dry throat thread.

I reluctantly went on HRT after 7 years of perimenopause at 53. I was still having periods but my main symptoms (leg muscle cramps and anxiety) became intolerable so I gave it a go. It definitely helped with the muscle cramps and initially with anxiety, but I continued to alternate between a huge range of symptoms over the months depending on my own fluctuations. I don't think I have ever got the balance between oestrogen and progesterone right. I was on 4 pumps of gel at one point as the information I was reading was more is better, but my anxiety, jitters and palpitations went off the scale on this dosage. I gradually reduced to 3, then 2 pumps and felt good on 1 pump. I decided to stop at the end of last year to see what my own hormones were doing. I felt fine for a month but then became very low and de-motivated which I couldn't cope with. I'm not sure if that was linked to the death of my F-I-L and a very stressful time nursing him so he could die at home, but I expect it had something to do with it.

I went on conti patches in March and seemed to get on ok with them to start, but symptoms reappeared after a while so I have cut patch in half and that has alleviated some but new ones have appeared (as per dry throat post).

Ideally I will come off HRT as soon as I can manage any remaining symptoms myself, although I don't know how feasible that is. The problem with HRT is I haven't a clue whether it is the HRT along with my own fluctuations making the symptoms worse and that in itself causes me stress. Over the last 10 years my range of symptoms have come and gone so I know my own body is fluctuating. I have tried a variety of HRT regimes and dosages but never found the right one.

I know there is a lot of evidence that HRT helps prevent osteoporosis and cardiac issues but I would prefer to try and manage that with diet and exercise rather than be on medication for life. That is just my personal preference. HRT hasn't been the magic bullet for me that it is advertised as, which is a shame.

[JoannFran]

Thanks for your replies ladies.

Kathleen - I have also thought about using progesterone on it's own.  I didn't tolerate utro very well but could have been because the estrogen was causing issues.  I've been reading hormone repair manual by Lara Briden (have you read it)?  Very interesting!   I'm on day 27 of my cycle (last bleed was the withdrawal bleed after stopping HRT) so will be interesting to see if i get an actual period.  If I do, I'm going to do blood tests on days 2 and 21 just to see what my own estrogen and progesterone is doing. 

Dotty - My anxiety and palps were off the scale too when I was on 100 evorel (and was told to keep upping it).  I was also on propranolol which I think was contributing.  Felt like my body was attacking itself. I was so scared to stop it but actually wish I'd come off it sooner, I was scared of the consequences. I'm definitely going to try to let my body do it's own thing for a while and see where I am.  Will do some bloods (if i get a period) and then think about maybe trying some progesterone on it's own.  Certainly not a one size fits all situation!

Let's hope we find some solutions soon! xx

[Kathleen]

Hello again ladies.

Well, I've just had another emotional surge, of anxiety this time, though I do have 'up' surges as well. My trusty meno book talks about emotional rollercoasters and apparently even this symptom resolves in time. I can't wait!

JoannFran  and Dotty - I see that you are both considering taking progesterone on its own.

I remember that when I came off HRT a few years ago and some physical symptoms returned along with mood changes, I had weaned myself off of progesterone first and then oestrogen. It was when I had been completely free of Oestrogen for about a month that my problems started.  Perhaps if I try again I will reduce oestrogen first but continue with progesterone to see if that feels better?

Take care ladies.

K.

[DottyD68]

Hi Kathleen.

I hadn't considered coming off Oestrogen first, that is a thought? As I'm on the combined patch I will be coming off both at same time. I didn't get on with Utrogesten on a continuous basis - it was just about tolerable on a 2 week off/on basis. That's why I moved to try the patch as GP insisted I should be on continuous at 55.

Let us know how you get on. X

[Lesred]

Hello girls

This is so interesting, and like JoannFran I feel a lot better knowing I’m not alone! Kathleen I’ve followed your journey and you have my commiserations, also those emotional ( and I get physical) surges of anxiety are horrible, I really have to tell myself sternly that nothing awful is happening to me and it will pass. I am feeling suitably relaxed after acupuncture, it’s lovely but unfortunately isn’t a permanent fix! I must admit though that being post menopause and therefore always on a continuous regime I was never able to work out which hormone was giving me the most bother, I suspected progesterone but then when I increased oestrogen symptoms changed again.

How I would love to be able to experiment with smaller amounts of both hormones but progesterone makes that virtually impossible. JoannFran I really like the sound of bio identical hormones but as they are not regulated I would be too nervous to try?

It’s really helpful to discuss and know we can’t be all that weird! It’s just medicine has not progressed enough YET, she says with a very teeny bit of hopefulness …


Les x x

[DottyD68]

Hi Lesred,

I am another fan of Acupuncture. I have my monthly fix (more frequently sometimesif I need a boost) and I feel fantastic afterwards. I'm not sure if it is a placebo effect but I don't care - it works for me! The lady who does it is lovely and we always have a great chat about what's going on in the world and it's effects on the environment/inhabitants. She is passionate about chinese medicine and very knowledgeable about how we ladies are affected during this phase of our lives. Not for everyone. I know, but a great compliment to western medicine in my opinion. X

[Lesred]

Hi Dotty

Absolutely agree! Acupuncture gets me out of that slight circle of panic that nothing is working, which as you say maybe a placebo but if I can trick my brain and it works, brilliant!

Les x

[Northerngirl]

Hi Joannfran,  I stopped all my HRT last December due to a scare and investigations, biopsy etc. I don't know that I feel better but I definitely don't feel worse.....I honestly don't think I ever got the correct HRT for me and I tried for over 10 years. I don't think I'll ever try again.
Do what feels right for you and good luck x

[JoannFran]

HI Northerngirl

Thank you for replying.  Glad you don't feel any worse off of HRT, makes you realise that sometimes it's not the answer for everyone.

At the moment I feel better without it and if that continues then I'll stay off (although never say never and if I feel I need to try again, I will).  Funnily enough I've started to bleed today, exactly 28 days since the HRT withdrawal bleed, so I'm obviously still producing my own hormones enough for a period.  Maybe I just tried it too soon.

Good luck to you too x