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[joziel]

@Gilla, I'm really sorry you are suffering like this.

I'm going to say something perhaps slightly controversial, which is that you really question whether coming off E is going to help. I mean, a QUARTER of a 25 patch is what you were on, which is.... 6.25mcg? It's almost impossible that such a micro dose is going to be causing any of this.

As someone else who has suffered (for 3.5 years now) with severe insomnia, hypnic jerks, shaking through the night, heart beating hard and fast, having freezing cold feet when I first get into bed (to the point that I need an electric blanket in a heatwave)....

However, since getting my E up, I am now doing much better than a year ago. Instead of about 2-3 hours of light sleep and being completely dysfunctional and unable to work, I now sleep well until 4am. Then I wake up and often can only sleep lightly till 8am. I still have mild versions of the heart beating hard and fast and the inner tremors but they are much reduced and I can sleep through them. I achieved this by getting my E up to around 330pmol. I need to go higher....

I needed MORE estrogen, not less. I was not absorbing well transdermally. Following advice from my Newson doctor, I need to get between 450-650pmol - and some women need as high as 1000 - to overcome the fluctuations which cause these neurological symptoms and to ensure enough E reaches the brain, where it functions as a neurotransmitter. Regular doctors don't know this.

Whilst on a 37.5 patch my E once was 480pmol - but my own body must have contributed a lot of that. I learnt to only test E during my period, when my own levels would hopefully be low and I would get a better reflection of what I was getting from HRT.

When I was around 280pmol, I was routinely told that everything should be lovely and doctors didn't know why I was feeling this way and it must be something else. Which led to: B12 shots every other day. An iron infusion. A trial of thyroid meds (which I now have to wean off from). And so many supplements trialled.

I really am incredibly sceptical when i hear about women being on about 4+ different psych meds BEFORE getting their estrogen up has been attempted. It's ridiculous. These are serious meds (I am a psychotherapist by the way) with side effects. Estrogen is incredibly safe and whilst it can have side effects, they are not long-term and will stop when dosages are adjusted.

What leads you to think you had a 'big rise in estrogen levels'? Just because your own ovaries produced a surge of estrogen, doesn't mean you should stay on a very low dose of HRT. In fact, the opposite: The greater the surges from your ovaries, the greater the peaks and troughs and the more symptoms you will have. The answer is really to have a very decent level of estrogen from HRT which then blunts the peaks and troughs....

I would urge you to make an appointment with the Newson Health psychiatrist privately. We are not allowed to post links but if you just google "newson health psychiatrist" you will get details up. Hopefully she will be able to take an approach both in terms of optimising hormones and also determining whether you really need to be on all those psych meds...

I'd really urge you to seek specialist help. Yes, it is expensive - but the NHS just can't cope with complex cases like this. The waiting time alone makes it impossible.

[CrispyChick]

Joziel

I'm going to politely disagree with you there. Fir done if us jn peri,estrogen is very much the problem not the solution.

My own estrogen fluctuates anywhere from around 350 upwards (day 21). I take no hrt. This level of estrogen, with very little progesterone in my body, leaves me very unbalanced and ill.

I know this to be the case as I've been round the block for the last 7 years with this. When I tried hrt - the estrogen alone escalated my symptoms. When I tried the mini pill, my E was kept at 220 and I felt so much better. Unfortunately the progestin causes me terrible mood issues. So was not a long term option.

I know you believe you need a lot if estrogen and, for you, you might. But we are very much not all the same.

I am looking at chemical menopause to shut down my cycle (and my estrogen).

We are all very different and the biggest problem we share is lack of help and expertise. 

[joziel]

I totally agree we are all v different Crispy, but given the total lack of research into all this - especially into these weird neurological symptoms - we have to offer our own experiences and lived solutions to people and allow them to sift through it all and see what they haven't tried yet.

For me, I tried no HRT at all for 6 months. The symptoms continued. I tried P only. No difference. I tried phasing in very tiny slithers of patches. Didn't do anything.

So logically the only thing I hadn't tried was to increase E into a very decent range. As soon as I got it up into the 300s, there was a huge improvement in the symptoms - although they are still there in their much reduced way.

So it is all trial and error. But I caution against making any assumptions without trialling and erroring. I assumed I was sensitive to E and spent months and months slicing up patches - when really I just needed to go higher. Try none, try micro amounts - but also try a decent level which many doctors might not want to help to achieve. See what works best. But don't leave a stone unturned when things are this bad. 

[CrispyChick]

I hear you joziel.

Leave no stone unturned. Unfortunately we have to turn our own stones  noone seems able to help.

I think my thinking is gilla has tried high dose E. But I could be completely wrong on that! 

[joziel]

Oh right, well if she has that's that. Unless that was a while ago. When I first started HRT, I seemed to be incredibly sensitive and my symptoms (at night, these weird neuro symptoms) got worse with each dose increase. My old low estrogen symptoms all went as soon as I started it, to be replaced by insomnia and these neuro symptoms. Which I hadn't had, before.

So of course I blamed it on the HRT and thought I couldn't tolerate estrogen and after spending an entire night awake in bed with my heart going 100bpm, shaking, I went to A&E - only to be told everything was normal and I should go to my GP.

I stopped the HRT, very sadly thinking I was going to have to face menopause without any HRT and all those low estrogen symptoms would come back - but at least I'd be able to sleep. Only to find that these night time symptoms and the insomnia didn't go away. So then I had all the low estrogen symptoms without HRT, PLUS all these night time symptoms....

So I restarted the HRT and this time it made no difference. Each dose increase seemed to have no effect. And then I discovered I wasn't absorbing it very well.

So I've no idea what the heck all that adds up to, except to say that my original assumption - that this was caused by estrogen and I couldn't tolerate it and would need to stop it - just wasn't right. I now think it's all caused by hormonal fluctuations, surges from ovaries, unpredictable hormones which are not working in a monthly cycle anymore - and their interaction with the brain. I live in hope I can find some flat-line decent level of estrogen which overrides most of this and that it will get better post-menopause....

[AnonoMiss]

Thanks all for your replies, much appreciated. I don't need to be told it's a rubbish cocktail, I'm well aware... it's come about through repeated bouts of severe hormonal insomnia over the last 5 years and because I can't get off any of them quickly - I have to taper down really slowly - so I get really low and then get another bout and go back to square one. Up until recently I was on very low doses of the Amitriptyline and Mirtazapine, it was only the Trazodone that was at a normal starting dose. But since this bout - which has been worse than I've ever known - I've been desperately trying to fix it and so have put up my Mirtazapine, but it's not seemed to work.

In terms of patches - I know I absorb more transdermally of all things than most and patches have a high variability of absorption between women, so I do think I was getting a notable amount from it... I certainly would feel it if I reduced or took it off (or increased it even slightly). But my Estrogen levels from the weekend's blood test don't really support that there is anything wrong or unusual there since taking it off. My Progesterone level did come back at unusually low, even for the follicular phase at <0.2 nmol.

I'm already way past the stage of becoming addicted to benzos, I've been taking the valium for over a year. Honestly, all that matters right now is that I find a way to get out of this crisis and I will deal with all the tapering and resetting of meds etc later - I've never known anxiety this bad, for this long. It's something very physical going on in my body and nothing to do with anxious thoughts. I've lost over half a stone in weight in just one week, because I literally can't eat or sleep.

@Bombshell, funnily enough I did try Zoely for 3 months right at the beginning of my peri journey. It didn't have enough estrogen in at the time for me to control my night sweats and 3am insomnia, but I seemed to be going through something quite specific then and maybe it could be worth another shot. A hormonal monorail sounds like absolute bliss. The only thing is I'm on day 8 of my cycle now, so it would really need to wait until next month to start it.

@Mariab I have been on HRT for about 5 years and these meds for around the same time, but as I said I had got really low on most of them until this happened.

@CLKD that's reassuring to hear you didn't have insomnia on propranolol. The heart palpitations and ectopic beats are one of my worse symptoms, so maybe I should rely on my Atenolol more. I have requested another appointment with my psychiatrist this week but not sure when it will be. I just feel like I need some kind of strategy to get out of this immediate crisis and that he's not helping me with suggestions for that at all.

perhaps neurofeedback might help to stablise? Something like neuroptimal can be rented and done at home?

You didnt mention if you have histamine or gut issues (everone overlooks the affect they can have on anxiety)?

Also do you know about MTHFR and might you have that? Often low B vitamins and histamine can be and indicator and that can cause anxiety/excaserbate ADHD symptoms etc

[Gilla999]

Ladies, I have just logged on for the first time in a while and seen your replies to my post. I'm sorry for going MIA, especially when you were kind enough to check how I was. I really was in a very dark place - a level of anxiety I've never experienced before - and I ended up just shutting down on life for a while. Ultimately what helped me get better was getting back onto my 1/4 patch and also adding very low dose BHRT Progesterone (during the follicular phase of my cycle). As always I can't be quite sure what was going on, but that combination seemed to help.

However the rollercoaster has in general continued and I can't seem to go for more than a week without insomnia, migraines, generally feeling very ill and all sorts of problems. Things have got worse instead of better since I started peri four years ago and I now feel at a crossroads with what to do. My quality of life has dwindled so much that I'm not able to work anymore, have lost all my friends because I'm never well enough to go out etc etc. I also can't start to reduce the horrible cocktail of antidepressants I'm on that can't be helping, when I keep having insomnia and being so ill all the time.

I think I am going to do as Bombshell suggested and try Zoely again. When I tried it four years ago prior to HRT, I had continued problems with it not being enough Estrogen to get rid of my classic low Estrogen night sweats and 3am insomnia (I read that on average it gives you a steady state of E of 130pmol ish, so hardly surprising!) but I am hoping that if I added a low dose HRT patch on top (which I know people do) it could help with this. I know it takes months to settle though, so don't expect it to be plain sailing, but feel like i can't continue the way I am and need something to reduce the extreme fluctuations I'm getting.

I'd love to hear from anyone that is on Zoely or any other contraceptive pills during Peri and if they've found any improvement.

Thanks again ladies for all of your support - it really means a lot x

[joziel]

If you haven't tried a much higher dose Gilla, then you may well need that rather than the Zoely pill. Unless you need a contraceptive, HRT is a much better choice than Zoely and will give you the option to increase beyond fixed amounts of progestin and estrogen. I can't see that helping you, it is inflexible.

It sounds like your symptoms and situation is severe enough to make it well worth spending £240 on a private menopause consultation and really getting some expert input into what could help you. You can usually get any meds prescribed on the NHS (except for testosterone) so once you've had that consultation, there shouldn't be a further cost for a year. Unless you need to change products or dosages frequently...

[Gilla999]

Thanks Joziel, appreciate the reply. How are you doing these days? I've paid hundreds of pounds to speak to meno consultants over the last couple of years and no one has really been able to figure out why I'm having a particularly bad time of it. I have been told that I probably went on too much HRT too soon and then caused problems for myself further down the line, but who knows.

For the last year I've been under the care of a really good NHS meno doc that I see every few months. Unfortunately increasing Estrogen isn't the answer for me - my Estrogen levels are actually generally high, and I feel much worse when I try to increase my patch. Perimenopause is characterised by high Estrogen and dwindling Progesterone, a very different situation to when your Estrogen levels tail off as you stop ovulating regularly. The huge peaks and troughs that are typical of perimenopause are what are causing me so many problems, in either direction! Zoely would switch off ovulation as a result of the daily progestin, so at least I hope minimise those big swings. The only other option at the moment on the table from my consultant is chemical menopause and add back HRT at a steady level, so again minimising the swings... Zoely is sort of a gentler version to try first. Curious if anyone else in peri has found either the POP or other pills to be of any use!

[joziel]

Oh right.... Can you give some kind of summary of your history, what you've tried and what happened? It's hard to know what to suggest otherwise.

The thing is... Yes, the peaks and troughs of peri cause a lot of symptoms. But that doesn't mean that adding more E always makes things worse. Because it can even out the troughs so you never dip too low. I'm in peri with a really hard time of it (especially at night) and getting my E up is really helping although I'm not symptom-free yet. (I am sleeping better but still not getting much deep sleep, according to both my Apple Watch and my own feeling of how rested I am when I wake up. I feel like I am constantly trying to keep myself under. I am also lightly inner tremor-ing all night. But all this is much better than it was before I increased the E.) But I get that things might be different for you because we are all so individual with this.

I can say, though, that I did try desogestrel (POP) early on in all this, whilst also on HRT - and it did nothing for these symptoms. I had been on it for 10 years before all this started and before I began HRT (to control endo) so when I began to get some endo pains whilst on HRT, I temporarily went back on the POP whilst also on the HRT to help dial all that down again until I could get in with my Newson doctor. Then I was told to increase utrogestan and come off the desogestrel again - which I did and the increase in utrogestan worked with the endo. But I noticed no change to these horrible night time symptoms whilst I was on the desogestrel POP. Which, as you know, does prevent ovulation and make the ovaries more dormant.

I'm so exhausted at the moment with a very deep kind of fatigue. It seems to be about both not being able to sleep properly/deeply, plus I came off thyroid meds about 3 weeks ago so my thyroid function probably still isn't great yet - but hopefully is going to recover over the next few weeks before my 6wks off it bloods are done(!). (Going on thyroid meds was yet another thing I tried to address these night time symptoms, but they didn't help at all. They did speed my metabolism up and I discovered I previously had high rT3 due to not eating properly and regularly. I've fixed all that so I am now hoping to get normal thyroid results including rT3 in a few weeks so I can draw a line under all this thyroid stuff!!)

I'm now on 200mcg Estradot patches and 6 pumps of Oestrogel plus I couldn't bring myself to throw out the Sandrena I tried (I seemed not to absorb it and got really bad after just a few days of it) so I add a sachet of Sandrena in, every morning  (I'm supposed to be able to be on 8-10 pumps of gel but I don't think I can absorb more than 6 pumps as my bloods on 6 were the same as on 12 pumps of gel.) Plus 300mg of utrogestan almost continuously with a 5 day break to allow a bleed. Currently no unscheduled bleeding, no endo, no sore boobs - no high E symptoms really. I need to get bloods redone in a few weeks and that will be interesting, but decided to prioritise the (private) thyroid bloods and focus on that first....

[Gilla999]

I think it shows just how much variation there is among women with absorption - I'd literally die taking that much HRT as I seem to absorb so much (via the skin, not so sure about oral). Even increasing to a full 25 patch makes me feel very, very ill and gave me urticaria/insomnia/all sorts (but then I am still ovulating every month so have a substantial amount of my own Estrogen too). You can sort of understand why even menopause specialists struggle to come up with a suggested path, because there is just so much variability on what works for different women.

I'd imagine coming off thyroid meds will definitely have an impact on lots of bodily functions including sleep, so hopefully once your body adjusts to being off those things will improve for you with the sleep and fatigue. Keeping fingers crossed for you that things start to improve soon!

[joziel]

Thanks yes, things are already much better -  I think due to the increased E.

I am also still ovulating, at least, I was last year because I bought some ovulation pee test things which test the LH peak to find out - and it said I was...

[bombsh3ll]

The advantage of Zoely (or any combined pill) is that it shuts your own cycle down completely so you are not constantly chasing after your body's erratic production of hormones.

I take it primarily for menstrual suppression, and do not need contraception. I skip the withdrawal bleeds and have had no bleeding at all in 2.5 years on it.

It gives you a stable consistent low level of estrogen that if needed you can then tailor as required with additional transdermal patch or gel (I am aware some specialists are doing this but doubt the NHS would prescribe it).

The progestin is NOMAC, one of the kindest with very little off target actions and is very potent at protecting the endometrium, so theoretically could support the estrogen being topped up however your specialist may require monitoring of the endometrium as this is non-standard.

[Gilla999]

Thanks Bombshell - my NHS meno specialist is aware / would be supervising so all good there.

I agree on the progestin - when I tried it previously I had almost zero side effects, having been totally unable to tolerate any other synthetic progestin my entire life. It was only that I kept periodically suffering from low Estrogen symptoms that I gave up, not realising I could top up with a low dose HRT.

One question I have - last time around I felt very much like my own cycle wasn't being fully suppressed, because I would have bad low E symptoms (accompanied by cramps) regularly every 3-4 weeks, which is the same situation I had when ovulating. I lasted for 3 months of packs and then gave up because of it. Did you find there was a bedding in period of how long it took for your own cycle to be suppressed when you started it? In retrospect I've wondered if taking the 4 day break instead of going straight through might have helped my body get into more of a rhythm sooner.

[joziel]

Interesting bombshell. Gilla, let us know how it goes. Maybe you should try the added estrogen to help with the low E symptoms every 3-4 weeks if you get those again?

However you might not get them on Zoely, because it is body identical. The previous pill you took I don't think was Zoely? So it wouldn't have been body identical and it wouldn't have been able to replace E for all the bodily processes that E is needed for. But hopefully with Zoely you won't have that issue as it is body identical...