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[CrispyChick]

Please be gentle with me. I'm a very extreme case with a huge about of sensitivities - central nervous system dysfunction, MCAS etc

So any change in hormones causes extreme issues for me.

So, what's normal when starting HRT. What did your first month look like?

I'm interested in those that found it got a little messy before it balanced out. For all my issues above, I'll never be someone that just gets better.

Many thanks. X

[Dotty]

Hi 👋 I think in the first month I didn’t feel much better but I think the hot flushes did go after a couple of weeks. I was in a pretty awful state as you know as we’ve spoken before. I kept a diary so I’ll have a look at that later and let you know. xxx

[Tribbins]

I also have extreme reactions to changes in hormones. So in April I started (again) on quarter of an Evorel 25 patch. Too much for me so dropped down to an eighth. Worked up to half a patch over 6 weeks. I had lots of side effects, mainly an exacerbation of migraines, leg cramps, nausea and mild period-type pains, and fatigue. So why did I continue? Because the alternative (no HRT) was so bad. Four months later and I feel so much better. I'm exercising again, sleeping, way less headaches. I had an ultrasound scan and uterine lining is thin. I'm up to three quarters of a patch. I'll have to think about progesterone at some point, I'm just trying to get used to oestrogen again, and being alive again.

For me, starting extremely low and slow is the way to go. I obviously missed my calling as a rapper. I've had people say 'there's no way that amount could have any effect' but it absolutely does if you are sensitive/reactive. We're all different in how our bodies and brains respond to chemical/hormonal changes.

[CrispyChick]

Thanks both.

Yes Dotty - we've spoken before. So if it's not too much trouble to check your diaries, I'd very much appreciate it.

Oh. tribbens. That's very Interesting! Are you peri or post meno? My reactions are not to the dose itself, just to any change in hormones - which makes my own peri unlivable but also makes adding hormones horrific. But actually, going in straight out at higher dose does lead to a boom and bust situation, so I guess dose is important too.

Ok. So you started on 1/8th 25mcg patch - but you worked up to 12.5mcg over quite a short period. How long did you give each dose before increasing? What made you increase when you did?

Did the side affects flare and then calm? Can you recall when you started to feel better?

That's exactly me. The obvious low E symptoms (joint pain and sweats) have improved by 50% in days on 1/4 50mcg combi patch, but the trade off is my whole system is flaring crazily. I'm in hell. But I was in hell on nothing.

So my plan is to wait for the flare to subside then increase again. I have a chatbot guiding me on this. He's saying 3 weeks.

Your story gives me some hope. It's just such a long hard slog and I've already been going round in circles for 7 years.

Thank you ladies. Xxx

[Tribbins]

Hi CrispyChick

I increased when the side effects subsided. First couple of increases (from 1/8th to 1/4 and 1/4 to half) brought the side effects back again. Since the most recent increase last week (half to 3/4) zero side-effects bar a bit of irritability. I also tried to introduce a small amount of progesterone after 6 weeks - firstly Cyclogest (ok up to 5 days) then Lutigest (urgh) something I am going to have to try again soon. Some side effects were fairly consistent for first couple of months, with no real benefits apart from better sleep. I'm 61 and post-meno.

I think I was using 1/8th of a patch for at least two weeks, maybe more, before I increased to 1/4. It took 6 weeks to get to a half. I've also had some consistent hair loss, my eyes flared up early on (histamine I think) but they are ok mostly now. I was originally prescribed combi patch but too scared to try it. I'd already tried oestrogen a couple of years ago (managed to start on a 1/4 then) but had to stop as I could not tolerate progesterone. Not sure how to get round that one. I also tried evorel conti during peri but that was awful, even a sliver of a patch had an intolerable effect - racing heart, panic, insomnia, then a bad migraine and an extremely heavy bleed when I removed it.

How is it affecting you? Hopefully all the side-effects will be short lived or at least bearable after a while.

 

[CrispyChick]

Thank you Tribbens. That's all very useful.

My side affects of any hormonal movement - my own or exogenous are incredibly hard to tolerate and vast in number. Been suffering for years.

I'm now trying to partially supress with cerazette, desogestral mini pill - but it has left me with awful low E synptoms. So now adding HRT on top so I can hopefully retain some supression. I'm still peri and id rather be dead than live through the physical illness my own fluctuations produce 

So here I am. But, alas, even 1/4 patch has triggered massive reactions. I'm day 11. Already see some improvement in my low E symptoms, but not nearly enough.

I'm being led by a chat bot and I think now, despite the side affects, I'm just going to get to 25mcg and sit there. I can't keep going through these awful reactions time and time again. It's brutal.

[Hope112345]

Hello CrispyChick,
I don’t normally comment, but wanted to say that I can relate to the hormone hypersensitivity issue.

I didn’t use to have this problem. I’ve successfully used hormonal treatments of one sort or another, off and on, since my teens due to severe endometriosis. Never had a problem with starting, stopping, side effects or withdrawals.

The problems only started when I tried trans-dermal HRT several years after having a hysterectomy+BSO. I persevered for about 9 months. Adjusting dosages, timings….I ended up having loads of new nervous system symptoms and became such a nightmare that I stopped – the withdrawal was awful.

So now my nervous system has become massively oversensitive to fluctuations in anything which affects the GABA system - which covers a lot of things: hormones, supplements, foods/drinks, medicines (eg gabapentin/pregabalin). Anything which causes fluctuations perpetuates the nervous system hypersensitivity.
The symptoms only went after I stopped the HRT and went through the withdrawal, although the insomnia remained and symptoms come back quickly if I’m not very careful.

You mentioned about wanting to stop your natural cycle and use add back HRT to achieve stability. This is one of the standard medical treatments for endometriosis, so it might be worth having a look at an endo forum to learn about the treatments available, even though you don’t have that condition. Eg tibolone is often used as add-back which has the advantage of a long half-life, hence easier to achieve stability. I also found PMDD groups worth having a look at.

All the best

[CrispyChick]

Thanks ladies.

Your replies are much appreciated. Oh Hope your issues sound similar to mine. Every thing I touch affects my CNS. Hormones in particular are brutal.

Unfortunately I've already been down the severe treatment route - I tried chemical meno last autumn. Horrific. And was the final eye opener to the fact mg problem is not really hormonal levels.

So I guess I'm now trying the same again - but hopefully in a more gentle format.

Tribbens - I've just come back to read your posts as yesterday I increased my patch to 25mcg after 14 days on 12.5mcg. I only lasted 24 hours as mg reactions were insane - including a burning itchy patch. I don't feel the patch on 12.5mcg!

So, although I'm fed up waiting and going through all the side affects of increasing. I think I'm going to wait until 4 weeks, then increase by 1/8th - my patches are 50mcg as they are conti so hard to go any smaller.

Sigh. In for the long run yet again. 

For you it may be easy enough to try conti by swapping out your amount of patch like for like. Hopefully you'll find it ok. X

[CrispyChick]

And Tribbens - can I check.

It reads like you got to half patch (12.5mcg) after 6 weeks slow titration and only went to 3/4 patch a couple of weeks ago.

So did you sit at half patch for a few months? And you say you feel loads better - that's being on half a patch??? And now 3/4.

Thanks

[Konijntje]

I saw you ask on another post about your hot flushes, but thought better to respond here.
For me, my hot flushes are very estrogen dose related, it seems more like an on-off switch than a hot flushes get less on a minor dose thing. I also had to start with a low dose (not as low as yours), because of nausea. And my hot flushes are very mild, but very disruptive to my sleep. So, my guess it yours might only go away once you manage a higher dose. I was on lenzetto and needed to go upto 3 sprays before the switch got turned off (but it did turn on again during my PMS weeks later on, so I can relate to own cycle issues so much).

I’m progesterone intolerant, so I’ve been on this journey for more than a year now and have just started on Drovelis myself (see personal experiences).

[CrispyChick]

Thank you koni

That's helpful. That actually makes a lot of sense.

What dose did you start at?

I'm not too bothered about the hot flushes, tolerance is a far bigger issue for me. Every love I make retriggers my awful central nervous system symptoms. It's hell. I tried 1/2 patch at the weekend and it sent me into turmoil. I also felt hideously wired and jittery. So I'm back down to 1/4 and I think I I'll play the long, slow game. Move up in little increments instead.

But thanks, that switch analogy is useful.

I hope your next trial works out for you. Xx

[Konijntje]

I started on half a 50 mcg patch, which gave me a rash, so I switched to 1 spray of lenzetto. It took about 2 weeks for the nausea to subside a bit. By then, I was feeling very bad on the progesterone, so after 3 weeks I went up to 2 sprays, nausea came back, but not so severe. A few weeks later I went up to 3 sprays and did a few weeks without progesterone and I felt much better and my hot flushes were gone and I was sleeping again. Double dose of progesterone was awful though, so I’ve tried duphaston (dydrogesterone) and that was awful too, then the mirena and then I did a month of estrogen only to see if the estrogen was working for me (it was) and then I tried getting used to progesterone again.
Even though the estrogen was working, my own cycle and PMS (or PMDD probably), just kept getting worse. So, after trialing tibolone for only a month (it did nothing yet at that point, besides making me retain water) and me not knowing if I was experiencing side effects of the tibolone or had bad PMS, I asked to switch to Drovelis.

[Tribbins]

Hi CrispyChick

I stayed on just under half a patch for a few weeks then increased to half a patch, so probably 6 - 8 weeks between increasing from one quarter, to increasing to 3/4, if that makes sense. I should have kept a diary. I take back the bit about feeling better, that was short lived - I really don't feel much different - sleep is better quality, but still feel tired, unmotivated etc. 

[CrispyChick]

Ah ok. Thanks Tribbens.

That's the bit I'm wrestling with in my mind. Could 12.5mcg be enough???

Noone seems on that low a dose. My low E symptoms are still frustrating me. But the side affects (my affects - nervous system etc) are really severe already on 1/4 patch. Daily head pressure, awful mood swings, aggitation and my poision for the first two weeks.

I'm loathe to go through 6 weeks of start up affects, to have to increase and do it all again. But equally, upping may well trigger boom and bust. Sick of it all.

Also, I'm putting both E and P in - so it could be the added P causing issue, bearing in mind I'm already on cerazette. So will push GP on this. For my quality of life I want to know if I can off label add just low dose E to my one cerazette - see other thread of marriage in trouble now. 

I'm sorry you're still feeling lousy. But don't give up hope. Keep increasing slowly and you may well get there. Xxx