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Author Topic: HRT changes a disaster - advice needed!  (Read 2654 times)

Aubrey

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Re: HRT changes a disaster - advice needed!
« Reply #15 on: August 22, 2024, 10:21:24 AM »

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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joziel

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Re: HRT changes a disaster - advice needed!
« Reply #16 on: August 22, 2024, 04:28:42 PM »

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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Twinmummi123

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Re: HRT changes a disaster - advice needed!
« Reply #17 on: August 24, 2024, 06:45:25 AM »

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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Twinmummi123

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Re: HRT changes a disaster - advice needed!
« Reply #18 on: August 24, 2024, 06:48:04 AM »

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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joziel

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Re: HRT changes a disaster - advice needed!
« Reply #19 on: August 24, 2024, 11:56:15 AM »

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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Aubrey

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Re: HRT changes a disaster - advice needed!
« Reply #20 on: August 29, 2024, 09:48:59 AM »

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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joziel

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Re: HRT changes a disaster - advice needed!
« Reply #21 on: August 29, 2024, 11:59:58 AM »

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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Aubrey

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Re: HRT changes a disaster - advice needed!
« Reply #22 on: August 29, 2024, 01:24:14 PM »

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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joziel

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Re: HRT changes a disaster - advice needed!
« Reply #23 on: August 29, 2024, 04:26:02 PM »

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.
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