Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Lolalois on August 15, 2024, 12:52:53 PM
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Hello.....
I've been on HRT for 6 years now and am 52, so probably towards the end of my peri years. I had been on 1.5mg Sandrena for about a year (2mg previously), and 100mg utrogestin vaginally 14 days a month.
I'd had about 18 months of variable blood results, sometimes with high oestrogen (around 1500pmol), but more recently the results are consistently falling, most recently around 300. I know these are only a guide, but I've also felt increasingly symptomatic over recent months, the kind that creep up on you like feeling flat and demotivated, bloating, low sex drive etc.
I talked to my MS about it and she recommended that I try switching to Lenzetto and move to a continuous regime. I decided to try the Lenzetto and settle on that before changing the progesterone, but it was a disaster, I used 4-5 sprays a day in a split dose and had terrible symptoms, much worse than before I switched, the most debilitating of which is insomnia, and I've also had night sweats for the first time, terrible night time anxiety and struggled to function in the day. These are the same symptoms I had before I started HRT, but before it's worked almost overnight. I switched back to the Sandrena gel and upped my dose from 1.5 to 2mg, but still have the same symptoms, I don't seem to be able to get any proper symptom control.
Is it common that this happens as you move through different stages of the menopause? The MS suggested an extra 0.5mg Sandrena (so 2.5mg total), but I'm wondering whether to try oestrogel or a patch? I suspect I'm not really absorbing the Sandrena and would prefer to use a lower dose of an alternative product if it controlled the symptoms - although admittedly that turned out to be a bad plan where Lenzetto is concerned!
It's unbelievable how bad menopause can make you feel, I never imagined it could be like this! I've taken a couple of days off work sick as I can't really function properly at all.
Any advice gratefully received!!
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4-5 sprays at once may well be too much initially.
R U in the US?
Peri-menopause are those years leading up to the last bleed = menopause proper. Peri can be 10 years B4 ..... with many kinds of odd symptoms.
It mayB that your HRT needs a hike. When did U swap back to the Sandrena?
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Thanks for replying….
I used the lenzetto for 5 days splitting the 4/5 sprays morning/evening. I was on 1.5mg Sandrena before swapping so the sprays were roughly an equivalent dose.
I went back to the Sandrena on Sunday, so 5 days ago, and have used 2mg a day which I was on a year or two back. I had cut down to 1.5mg during the phase of fairly high oestrogen.
Maybe it does need to go up more, that’s what the MS is suggesting. Dose changes have worked v quickly for me in the past. And during the period where I had high oestrogen I felt great so I don’t seem to suffer symptoms from that, hence me thinking my levels are more likely too low for me to feel well, rather than too high.
Looking on here lenzetto (like all HRT I guess) seems to work for some but quite a few people seem to say it’s not strong enough. Great product if it works for you as it dries so quickly
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Lolalois the Lenzetto is quite a weak product so especially if you need a higher dose, it often isn't enough.
Have you tried patches? They might be a good thing to go for. I've just had an attempt to switch to Sandrena which failed and saw all my worst symptoms coming back again.
Or Oestrogel is the other option. But you might need a doctor who is happy to prescribe above the licensed dose (4 pumps of gel or 100mcg patch). I see a Newson Health doctor privately who writes a letter to my NHS GP and tells them what to prescribe. Currently I'm on a concoction of 100mcg patch, 6 pumps of gel and 2 Sandrena 1mg sachets a day ;D ;D ;D ;D ;D All that lot only is getting me probably to around 400-600pmol.
If you want to do blood tests at all by the way, try to schedule them during your period because your own estrogen from your ovaries is likely to be lowest then, so you can better see what you are getting from HRT.
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It's not unusual to need more as your own body produces less. It's the amount that's in your body that's important though not the amount you put on your skin unless you run into problems of nhs restrictions. It might be worth trying a patch. Sometimes a different product will be absorbed differently but it may that you're a poor absorber whichever one you use.
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Thanks for the replies, very reassuring.
By way of update, I had loads of symptoms after 5 days of 2mg Sandrena so upped to 2.5mg. I slept well for 3 nights then barely at all last night. I felt sort of ok in myself for the first 2 days at 2.5mg then felt awful since, really low mood, terrible negativity, rage etc. My poor partner, I’m not nice to be around atm.
So now the question is whether to up to 3mg to see if it relieves symptoms at least in the short term. I need that desperately as I’m not functioning well and need to work, I had a couple of days off sick last week as couldn’t face it and needed some space.
3mg seems a big dose to me, although I completely understand that it’s your blood levels that count. I think I’m at that point where having been on HRT for 6 years my own hormones are giving up the ghost so my overall levels are falling.
I’m very open to trying a different gel or patch, anything that works frankly! But I was hoping to stabilise the symptoms first as they’re quite extreme, I’m in a right old state!
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Lolalois, I couldn't get along with even 6mg of Sandrena. I get more from 6 pumps of Oestrogel than 6mg of Sandrena.
Don't be scared of higher doses, we all absorb differently and need various doses to fix symptoms.
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That’s really interesting that you didn’t get on with Sandrena. It’s been good for me to date, but very possible something has changed in respect of absorption, or my background hormone levels which have dropped considerably over time.
I’ve upped from 1.5mg to 2mg for 4 days, 2.5 for 4 days and now 3mg. If that doesn’t work I’ll opt for either oestrogel or a patch.
I’m sure this is ridiculous but there’s part of me that believes a patch can’t possibly be fully waterproof! I love a bath and have one most days. But if they work irrespective of that, having something less ‘spready’ than gels is quite appealing.
Oh the joys of this stage of life!!
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As a side note, I know that insomnia is often attributed to other lifestyle factors than menopause, but I absolutely know the different between a general bad night sleep and hormonal insomnia.
I’m not sure I can fully article it here, but it’s definitely a different beast!
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Only comment I would like to add is that you are upping your doses quite quickly. The body needs time to settle especially as Sandrena is a different formulation to oestrogel. If you go up too quickly you might miss your sweet spot and go from bad to worse. Also re insomnia this can sometimes be from too much oestrogen as well as too little. So for instance waking up a lot is typically low oestrogen whereas feeling wired and unable to get to sleep in the first place can be too much oestrogen.
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My insomnia is very much caused and correlates with the awful nighttime symptoms I've had since 3 weeks after beginning HRT, after which I've never had a normal night of sleep which is completely symptom-free - and that was over 3 years ago now. And I tried stopping HRT for 6 months, but it didn't help. I tried re-starting P only. Didn't help. I tried splicing patches up into micro pieces. Didn't help. The only thing which has helped and means the symptoms are now (at their best) something I can sleep through for at least part of the night, has been getting my E up. And it's not even that high at 325pmol.
The symptoms, by the way, are things like: Heart beating at 95bpm through the night, when my resting pulse in the day is 55. Heart beating so hard I can hear it in my ear and see it in my chest. Inner tremors feeling like I have mobile phones inside me. Hypnic jerks startling me awake just as I begin to drift off. Hands going numb in my sleep, as if the circulation has been cut off - although they are just lying on my chest where they've been all my life. The feeling of an electric current all around my body.
And all that, all night long. So when I say I have 'insomnia', I don't just mean I'm lying awake thinking about what I need to do the next day and not feeling sleepy. I mean that I have multiple physical symptoms which are incompatible with sleep. All this starts when I get into bed and begin to feel like I should sleep. I am symptom-free during the day. (Except feeling like zombie due to lack of sleep.)
The other thing to say is that ironically we began by thinking I must be incredibly sensitive to HRT, since this all started 3 weeks after I began HRT and when I was on a 50mcg patch. Thus began over a year of slicing patches up into tiny 12.5mcg pieces, increasing slowly and all this gently does it stuff. It finally transpired that actually I'm not absorbing the stuff at all and all that was a bollocks waste of time. Since blood tests are so unreliable they didn't really show anything much, they were never very high - but also not that low, not lower than 198pmol. In fact my highest blood test ever was 495pmol and that was on a 37.5mcg patch. I can't get anywhere near that now, on 12 pumps of Oestrogel.
So it took ages for me to work out that my problem isn't that I'm incredibly sensitive, it's that I don't absorb and my body is reacting to fluctuations in my own E which are not being overcome by the pitiful amounts of HRT I'm able to absorb transdermally. But I think I am finally on the right track now....
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Blimey that all sounds absolutely awful Joziel, I don’t know how you’ve coped with that. Really difficult if you don’t absorb well.
I totally hear you when you say the insomnia is oestrogen related, mine is the same. I have had periods of normal sleep when I’ve had higher levels, the problem for me is that my levels have dropped a lot in the last 6 months. In normal times I don’t sleep perfectly at all, but as you say it’s a very different thing when it’s hormone related.
I’m glad you’ve found some respite, I can only imagine the impact it must have had on your quality of life.
I wish I had more pearls of wisdom to offer you, but I’m not as knowledgeable as some people on here. I’m pleased you’re headed in the right direction though, it most be such a big relief.
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Have you had your thyroid checked recently? Hesrt racing and jitteryness can be a symptom of an overact thyroid.
I'm having similar issues, mine don't seem to be oestrogen related but seem either to link to cyclical prog at 200mcg or something else ?? overactive thyroid as I've had a borderline reading for years. Have just persuaded the GP to run a thyroid test but couldn't get an appointment for bloods until the end of the first week of Sept.
It's difficult when we need to stay capable to work isn't it?
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Hi Lolalois, it's pretty shocking how bad the symptoms can be isn't it? Who knew?!
I use Sandrena gel too. I use 2.5 mg.
I started with 0.5 like you and over time as my own estrogen dropped and the symptoms returned, I upped it by 0.5 each time. I use my symptoms as a guide, if they return, I up the dose, and it's worked so far.
I also tried the conti 100 patches but found I had to top up with Sandrena gel to control the symptoms.
The symptoms are caused by the drop but also the fluctuation in estrogen, etc. So consistency in dose and administration is really important. So maybe you just need a higher dose, and a consistent dose.
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Seaside, I've more than had my thyroid checked, due to all this one of the many thousands of things I've tried has been thyroid meds, both T4 and T3 - even though I had a pretty normal thyroid panel with just high rT3 because I wasn't eating properly.
Various dosages of thyroid meds have made zero impact on these symptoms so now I am going through the pain of weaning off thyroid meds, which is not fun at all. I started on 50mcg T4 and 45mcg T3 and I'm now on 25mcg T4 and 15mcg T3. I should be off next week some time.
I've also had an iron infusion despite having a ferritin of 60, which wasn't awful, B12 shots every other day (despite pretty normal B12 result), endless electrolytes and supplements (small fortune on supplements), multiple ECGs, an electrocardiogram and a 24hr catecholamine test. All of it totally fine. So besides MRIs and referrals to neurologists, everything has been explored. Besides which, all this began 3 weeks after starting HRT so it seems obvious that it's caused by hormones in some way. I had also just come off the desogestrel POP at the same time I started HRT and I'd been on that for nearly 10 years, so I think it was just too much hormonal change at once.
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Joziel, reading your post was like reading my own HRT/peri - insomnia journey. Exactly the same night time symptoms destroying my sleep. It's really awful and I feel for you. I actually think I could cope with all the other symptoms but the body agitation and waves of threat system activation through the night followed by surging cortisol and a racing heart? No way can I live with that.
I've also had every test under the sun from an ECG, thyroid to diabetes, but the one thing they will not test for is female hormones because they don't test these in women over 45. It's the rules apparently and they can't deviate even for someone so sleep deprived they've arrived carrying they eyeballs in their handbag.
Estrogen is the answer, I'm sure of it, but getting the balance right is difficult when general practice is so retarded.
I read a paper that shows that a hot flash is accompanied by a surge of cortisol, and the cortisol wakes us up and leads to the prolonged period of wakefulness afterwards. Rising cortisol is what wakes us up in the morning, that's it's function, among other things not related to sleep. So I have found that when a hot one wakes me, I get up, wander around for couple of minutes to burn off some of the cortisol, then I get back into bed & listen to a podcast until I'm calm again. When cortisol is in our system with nowhere to go, it induces worry thoughts, which produce even more cortisol release. So distract until it's passed.
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I'm glad I'm not the only one with these symptoms. But it's weird because all the symptoms I had before starting HRT (classic low estrogen symptoms like VA, brain fog, constipation etc) have all gone. And 3 weeks AFTER starting it, this all began.
I've had female hormones tested many times but it doesn't help because they are always 'okay' and they fluctuate so much during peri - plus some of us need higher than 'okay' to override the fluctuations.
Luckily I'm with Newson Health so can get the high doses I need without convincing my NHS GP.
Best thing for me when I wake up, is to try not to wake up too much - then there's a chance I can go back to sleep again. If I got up and wandered around, I'd be awake the rest of the night...
Last night I felt this huge surge of calm come over me whilst I was working at my computer in the evening. I almost felt sedated by it. It was very weird but perhaps due to the estrogen increase a week ago to 100mcg patch. I slept better last night, although still woke often. I hope things keep getting better...
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Hello.....
I've been on HRT for 6 years now and am 52, so probably towards the end of my peri years. I had been on 1.5mg Sandrena for about a year (2mg previously), and 100mg utrogestin vaginally 14 days a month.
I'd had about 18 months of variable blood results, sometimes with high oestrogen (around 1500pmol), but more recently the results are consistently falling, most recently around 300. I know these are only a guide, but I've also felt increasingly symptomatic over recent months, the kind that creep up on you like feeling flat and demotivated, bloating, low sex drive etc.
I talked to my MS about it and she recommended that I try switching to Lenzetto and move to a continuous regime. I decided to try the Lenzetto and settle on that before changing the progesterone, but it was a disaster, I used 4-5 sprays a day in a split dose and had terrible symptoms, much worse than before I switched, the most debilitating of which is insomnia, and I've also had night sweats for the first time, terrible night time anxiety and struggled to function in the day. These are the same symptoms I had before I started HRT, but before it's worked almost overnight. I switched back to the Sandrena gel and upped my dose from 1.5 to 2mg, but still have the same symptoms, I don't seem to be able to get any proper symptom control.
Is it common that this happens as you move through different stages of the menopause? The MS suggested an extra 0.5mg Sandrena (so 2.5mg total), but I'm wondering whether to try oestrogel or a patch? I suspect I'm not really absorbing the Sandrena and would prefer to use a lower dose of an alternative product if it controlled the symptoms - although admittedly that turned out to be a bad plan where Lenzetto is concerned!
It's unbelievable how bad menopause can make you feel, I never imagined it could be like this! I've taken a couple of days off work sick as I can't really function properly at all.
Any advice gratefully received!!
I am 49, I have moved onto a 100mcg patch, Estrodot from 4/5 pumps of gel as it wasn’t managing my symptoms and the drying time was frustrating. I take utrogesten daily with no breaks as I don’t want to bleed now.
I’m finally sleeping through the night and nearly all symptoms are gone…I also feel like I am at a normal temperature, I actually felt chilly the other day for the first time in years!!
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I'm glad I'm not the only one with these symptoms. But it's weird because all the symptoms I had before starting HRT (classic low estrogen symptoms like VA, brain fog, constipation etc) have all gone. And 3 weeks AFTER starting it, this all began.
I've had female hormones tested many times but it doesn't help because they are always 'okay' and they fluctuate so much during peri - plus some of us need higher than 'okay' to override the fluctuations.
Luckily I'm with Newson Health so can get the high doses I need without convincing my NHS GP.
Best thing for me when I wake up, is to try not to wake up too much - then there's a chance I can go back to sleep again. If I got up and wandered around, I'd be awake the rest of the night...
Last night I felt this huge surge of calm come over me whilst I was working at my computer in the evening. I almost felt sedated by it. It was very weird but perhaps due to the estrogen increase a week ago to 100mcg patch. I slept better last night, although still woke often. I hope things keep getting better...
Just read through your symptoms and I’ve had similar all along with the gel…I could only go up to 5 pumps as that’s all I could get prescribed a month on NHS…crazy. I started in 2020 and no in 2024 finally trying the 100mcg patch has actually stopped the palpitations, the hot flushes (with accompanying cortisol rushes which kept me awake half the night) the terrible anxiety and noise sensitivity, joint pain etc etc etc etc. Of course the NHS meno clinic didn’t even want me to have this dose and I was expected to start chopping away :-\
I really hope you can get your levels up enough to reduce your symptoms.
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Thanks, last night was amazing. It was probably the best (deepest) sleep I've had in the last 3 years. It was lovely and I feel so good today. I still woke at 3.30am and had a wee, but went back to sleep right away and it was deep sleep and good... And I still had some light tremors but was sleeping through them.
I've been on the 100mcg patch for 8 days now. (Along with 8 pumps of gel and 2 Sandrenas which I'm trying to use up - equivalent of 12 pumps of gel!!!!). I will hold here for 4 weeks and then increase to 125 if I still have any symptoms. If I manage to reach Nirvana, I will then decrease all the gel stuff and if needed increase patches.
I didn't seem to be absorbing more than 6 pumps of gel/day but am also anxious to just cut it all in half immediately.... jeeze it's confusing.
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Wow joziel, that is a lot of pumps and patches, it makes me wonder if I'm also not absorbing much and need a lot more. I'll see if I can get an appointment with my GP sometime in the next decade!
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I don't really recommend doing things via your GP if you get to this stage - because they can't/won't help you beyond the max licensed dose anyway.
They can prescribe up to 100mcg patches or 4 pumps of gel, but they won't prescribe more because that's above the licensed dose. They might offer to refer you to an NHS menopause clinic, but the wait times on that can be ridiculous - like 2 years isn't unheard of.
Instead, much better to go to a private clinic like Newson Health. Pay for the initial consult and they write a letter to your GP and tell them what to prescribe so at least you get meds on the NHS.
It is also very hard to make sense of all this during peri using blood tests. Even on 50mcg patches, I didn't test below about 230pmol and my NHS GP seemed to think I should feel great with that and my symptoms couldn't possibly be due to needing more estrogen. She even said 'at some point you just have to live with the symptoms/medicate the symptoms'. (By that point I'd had an iron infusion and B12 shots. I've since trialled thyroid meds which did nothing for this.)
I'd probably literally have killed myself by now, if I had only had access to NHS "care". (In quotation marks there, because really it was NHS negligence, not care.)
On 6 pumps of gel my serum estradiol was 330pmol, which again most people would tell me should be absolutely fine and I shouldn't be experiencing this. (Tested during my period in an attempt to see what I was getting from HRT.) On 12 pumps of gel, my serum estradiol was about the same, 325pmol. So - I wasn't absorbing the extra 6 pumps of gel. Which matched my experience, since I noticed nothing (good or bad) when increasing it.
I had increased since I was on 4 pumps of gel, though. So I was getting more from 6 pumps than 4... but I couldn't get higher with gel.
By this point, I just wanted to trial and see what the heck I would feel like if I got my estradiol decently up into the 450-650 range. I mean, maybe it wouldn't do anything - but it had to be tried. It was what my Newson Health doctor said as well. So now I am going up on the patches and probably down on the gel to 6 pumps again, seeing I can't really absorb more gel than that.
Since I wrote the post above about 5 days ago, it hasn't been consistently that good - but I had another good night last night, sleeping from 1am till 6.45am right through. This is a record for me, over the last 3 years since all this began. It's not 100% right yet though. I think I am going to increase to 125 tomorrow...
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I think my pmol is about 300.
Your right about NHS GP's. Perhaps what they don't appreciate is that if they refuse to prescribe the correct amount of HRT, we'll be coming to them for other drugs, for insomnia, anxiety, restless leg, fatigue, IBS..etc, etc. It's such short sighted care.
I'm glad your sleep is better.
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Yes, it makes no sense for them to dish out all that lot like smarties (when no one suffers from an anti-depressant deficiency...) but to withhold HRT.
I really think all this is in its infancy still and things change sooooo slowly.