Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Gilla999 on December 11, 2023, 07:34:49 PM
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Hi all - i'm 3-4 years in to perimenopause (now age 44) and i've been on HRT for 2.5 years, initially quite a high dose of Lenzetto but now down to a 25 Evorel patch and Utrogestan sequentially.
I've noticed that there seems to be a pattern over the last 3 years whereby my Estrogen level will rise tor a few months at a time and then decline for a few months (I have regular blood tests that track with the symptoms I experience as a result). I am still ovulating every single month (I test every month) but when i'm going through a 'downturn' the low Estrogen symptoms are bad enough to cause debilitating night sweats and 3am insomnia. Then when my Estrogren rises I suffer from really bad allergy / immune system related problems (for example severe urticaria for 6 months last year, chronically itchy eyes and prickly skin). There seems to be a very fine line with what Estrogen level my body can tolerate in either direction. I am desperate for all of this to be over with, so that I can have a steady level from which to work from!
However given that I might still have another 7 years or more left of this, I wondered how other people are managing their ups and downs of Estrogen. Do others also have periods where it increases for a few months then decreases again? Do you have to keep adjusting your HRT to compensate? Curious if this is a standard experience to need to go up and down all the time!
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Yes @Gilla999 - exactly this!!!
I’m still on lenzetto plus Mirena but only a single spray - however at times of the month my oestrogen falls rapidly giving me the night sweats, hair loss and worsening brain fog.
I had terrible urticaria a few years ago but that seems to have calmed down.
Unfortunately all advice seems to be to only ever take a consistent dose - but sometimes I feel like I should up the lenzetto dose for a week or so every month to counter the oestrogen plummet but not take too much at other times which will probably send me wild!!
So hard to know what to do. My GP friend thinks I should take 2 sprays continuously but it scares me as I got breast density increase when I tried it 6 months ago.
You’re not alone in this rollercoaster!
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25mcg of estrogen is an incredibly low dose for someone this early into peri-menopause. The younger you are, the higher the estrogen level you need to be symptom-free - so you likely need at least 75-100. One approach to fluctuations is to take quite a high dose to override those fluctuations. You should have a blood test done ideally during your period (when your own estrogen is always going to be low) to see what you are actually getting/absorbing. My hunch is your symptoms are due to your own body's fluctuations and you aren't really getting much at all from a 25mcg patch.
When dealing with fluctuations during peri, that's one reason for the relatively high doses of estrogen: Your own body's fluctuations are going to be much less impactful if you have a steady and relatively high dose from HRT. My Newson dr says estrogen usually needs to be 400-600pmol for women to be symptom-free during peri. That is much higher than the doses most doctors tell you you should be happy with, which can be around 250pmol. So one approach to the fluctuations is to take MORE estrogen. Your own body shouldn't make much of a difference then, to the overall levels.
But if you are getting side effects then from too high estrogen, you could either take additional utrogestan to compensate for the higher estrogen - or you could go off piste a bit and adjust your estrogen dose as you suggested. To be able to do that, you will need to get more from the doctor because it's easier to be prescribed 75 and reduce that for a while, then to be prescribed 25 and use up your HRT too fast.... So get onto a higher prescription, either way, if you want flexibility.
@Tootsie there's no problem with 'breast density' increase. Younger pre-menopausal women naturally have more dense breasts because their estrogen is naturally higher. In the way way, taking estrogen will make breasts more dense often as well. Why does that scare you? It's nothing to do with breast cancer and it's not a risk factor. The fact is that younger women have lower risk of breast cancer than older post-menopausal women who have lost their own estrogen... Sounds to me like you still have worries about taking HRT at a sufficient dose to be helpful, and you'd be better off addressing those worries and laying them to rest than staying scared of taking enough estrogen.
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Thank you joziel- I always thought it was the other way round, less oestrogen the younger you are!
I don’t get any symptoms in pelvic area, it is purely brain, hair and cyclical night sweats. Libido only makes a rare appearance once in a while.
The breast density piece - you are right, it just made them feel like I had silicone….literally. I felt embarrassed.
I will try and get a gyno consultant appt again - and see if private healthcare will fund it. I haven’t had any hormone screens so no idea where the levels are now.
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Hi ladies, thanks for your replies!
Joziel with your Doctor from the Newsom clinic - are they talking about Day 21 levels with those numbers? If so then I'm in the right range - at the moment it's been 400/500 for the last couple of months - but this is low for me and still causing low E issues at certain times of the month when E is natually at its lowest. I seem to do best when it's around the 600 range on Day 21. The problem I face is that my own Estrogen levels aren't stable - they go up by circa 400 pmol for a couple/few months at a time, then plummet right back down etc etc. So it's been really challenging to find a way to adjust my HRT in a way to cope with those swings, particularly because as soon as my Estrogen levels start to creep too high (whether through HRT or endogenous) I have horrendous allergy / immune system issues (urticaria, palpitations, wired/stimulated feelings, rash all over my face and body).
Tootsie, as you say it's also the peaks and troughs within a cycle which are challenging, and for me the answer doesn't just lie in increasing my dose, as I have found too much to be equally as problematic as too little. I haven't ever found that higher doses "smooth out" the fluctuations, but as Joziel says this is said by a number of doctors - haven't seen the science behind it yet though ;D
I'm probably just complaining about what every other woman in peri goes through, it's just exhausting having to try to counteract an ever-changing target. Cannot wait until ovulation is all over with and there's a steady state to work from!
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Hi Gilla99, sorry this was so so troubling. I think the only bright spot is that it's easier to manage in meno though it can be fraught getting there. I've been on hrt for 5.5 years now and pretty much stabilised now. I've only had fluctuations within a cycle though, the only long term effects have been a decline in my own oestrogen and need to increase hrt. If you can tell yourself when oestrogen is low would it help to have a bottle of gel and top up with a part pump as you need it?
Although they say you need less oestrogen as you get older that hasn't been my experience. Perhaps I'm not old enough yet but every time I try to reduce my symptoms return.
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@Tootsie78 the breast tenderness should subside as your body gets used to the dose of estrogen. That can take a few months. But you should be reassured that as annoying as it is, it isn't a sign of anything harmful.
And no, usually you need more estrogen, the younger you are. It's the very elderly women who can usually be just fine with one pump or half a pump. Low libido can also be caused by low estrogen, it's not always about testosterone.
@Gilla999 the Newson dr is talking about general, overall levels. They don't pay any attention to different parts of the cycle once you are on HRT. I think they would try to maintain that level throughout the cycle in a stable way. However, she also said that some women can need up to 1000pmol before symptoms go - everyone is different. And yes, those big swings are the problem is peri - that's why you want a high enough level from your HRT to override those, so that even when your body conks out, you have enough estrogen from HRT to keep the symptoms away. This might mean that it's very high when your own body decides to contribute but that's not a problem if it's not causing symptoms for you. If it does, you could reduce your HRT for a while...
At least we have HRT... imagine what it would be like trying to ride this out, without it...
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If you're still ovulating regularly then it's not possible to have a consistent level of Estrogen throughout your cycle - average normal swings can be from 80 pmol on day 3 up to 900 pmol on day 21 (of a standard 28 day cycle). Consistent levels to aim for are only viable once you're post meno and no longer ovulating (or at the very least in late stage peri where you're only ovulating infrequently).
You're right though Joziel - I genuinely don't think I'd be here anymore if HRT didn't exist! I have a friend the same age as me who went post meno without even realising it and it blows my mind a little, considering the extent of the issues its caused me and I'm only about 5 years in ;D
Sheila, thank you for the reassuring words. I know everyone has their own unique journey, but I do sense that once I have a stable level to work from it will be much easier. The swings are causing me such issues I've even been offered chemical menopause on tbe NHS, but too scared as yet to take that gigantic sudden leap. As you suggest, until I'm post meno I suspect it'll just be a case of winging it and increasing and decreasing my HRT as needed.
Thanks everyone for your kind replies!
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Right, the point isn't 'to have a consistent level of estrogen throughout your cycle' - after all, your own body never had that even when cycling, with massive fluctuations throughout the month.
The point is that when it drops to nothing, that isn't zero or incredibly low - because the amount you are putting in from HRT prevents that. In turn, that means the amount you might have at other times of the month is a bit higher. But really that should be okay, because it's what your body is used to...
If you want to totally stop the fluctuations from your body, just go on desogestrel POP (mini pill). It will suppress everything your own body is making to very low levels. I was on it for 10 years to prevent endo...
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Yes and perhaps a constantly high dose works well for some people - I guess there must be a reason why there is a 'line' that younger women need higher doses. It's just unfortunately not the answer for everyone, some people can't tolerate high Estrogen levels equally as much as low. There's still so much they don't understand about individual women's reactions to hormones.
Yes, I gave the POP pill and the normal Pill a really good go right at the beginning of this journey, but they weren't the answer for me. HRT fixed the low E issues back then almost immediately, it's just the rises and falls every few months that I now get which are hard to manage (especially when you have equally bad issues with high E!) but this is what peri is all about I guess. Just got to soldier on and pray for it not to last too many more years :)
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Hi Gilla, sorry you're having such a frustrating time with E fluctuations. I posted about this a little while ago. I'm 46 and have been on HRT for a year, 25mcg gradually increasing to now 50mcg Estradot plus utrogestan half the month. For the last couple of months, I've had a recurrence of awful low-oestrogen symptoms in the week before my period - broken sleep, night sweats, tearfulness, tinnitus. I whacked on an extra half patch (so taking me up to 75mcg) for those weeks and felt better in myself, then went back down to 50mcg as my cycle restarted. I know we're not advised to change doses throughout the month but honestly, I feel like when we're still in peri, a more carefully titrated dosage would be beneficial for some of us (if modern medicine could just catch up to our needs!). I have considered going up to 75mcg permanently but I actually feel good on 50 for most of the month so I really don't know if it's worth upping the dose continuously. As you have said, it's so difficult dealing with a moving target. Commiserations!
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Peri, that sounds like a v sensible way to do things.
@Gilla, I didn't mean try the desogestrel pill instead of HRT, I meant as well as it: The desogestrel would stop what your own body is doing and then you just add in the hormones with HRT. Desogestrel is approved to be used alongside HRT anyway, for contraception reasons, so if you want to try it and see if it stops the fluctuations, that would be a valid and kosher thing to try. It's like a less drastic form of chemical menopause...
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Peri that is really interesting - thank you for sharing! Did you have any issues / withdrawal side effects at the point of reducing back down to the 50 dose? I too am having the biggest problems when my E is at my lowest (which for me is now the first week of my cycle instead of before my period), although also have a separate issue of my E generally deciding to go high for a few months, then fall off a cliff for a few months and on and onnn! I can and do of course try reacting to those changes with HRT increase/decrease, but I don't find that's necessarily an immediate fix and it's just exhausting having to constantly tinker with your dose because of your own fluctuations.
Joziel interesting that you say that - last time I saw my NHS meno doctor she suggested that one step before Zoladex (chemical meno) could be using the POP alongside HRT as the Progesterone part, so as you say I'd switch off the ovulation and a degree of the fluctuations. However she said to me that the POP is only licensed for use with HRT at double the strength of the normal POP dose. I haven't had a good reaction to synthetic progestins in years gone by when trying the Pill, so feel like it would potentially be a disaster. But as you say, it is definitely something to think about trying if things do get really bad as the years go further on. As a side note, the only synthetic progestin I ever did ok on was when I tried Zoely for a few months at the start of my peri journey - it is (I think) the newest generation Progestin there is; nomegestrol acetate. I wish that had been invented in the years when I needed contraceptive as I had barely no side effects from it at all (it just wasn't enough Estrogen once I got to Peri to deal with the low E issues).
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I think your NHS meno doctor is a bit confused there, or things have gotten lost in translation...
Basically the POP isn't licenced to be used as the progesterone part of HRT (at all, single or double dose). However there is some evidence/research to show that double the dose works as the progesterone part of HRT.
But that's not what we're talking about - it would be using HRT just as you are now, with utrogestan, and adding the POP in as well. It would be the same usage as for women who need the POP for contraception whilst on HRT, which is given at the single POP dose - not the double.
You actually don't need the doctor on board with this now because contraceptive pills are available over the counter (or are about to be I think?) so you can just stay on HRT from the doctor including the utrogestan - and get yourself some desogestrel.... I was on this for a while at first because I have endo and the utrogestan wasn't enough to suppress the endo, so I was put on the desogestrel POP as well. When it all settled down again, I increased the utrogestan and stopped the desogestrel - and I've been okay since.
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Interesting!! Hadn't thought of that as an option at all. I do suspect I wouldn't do well on synthetic progestins just from past experience, but definitely something to bear in mind trying if the mad fluctuations do get really consistently unbearable as my journey goes on. Thank you for all your feedback Joziel :)
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Hi Gilla. Like you, I also can’t tolerate synthetic progestins…and trying to find a solution is exhausting! To answer your q: no, I haven’t noticed any significant withdrawal symptoms when going back down to the 50mcg dose. I know this strategy is a bit rogue but I can’t see it doing any harm, and it seems to be doing at least a bit of good in that tricky premenstrual week. I’m still dithering over going up to 75mcg permanently but I think I’ll stick to this for now…