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[Petra]

Hello Women!

I have a question about coming off HRT (just as a test run) re how long to wait and see what's what. Here's my recent background for context.

I've been on HRT for 12 years, since age 48. (Yep, I'm 60 now.) Mainly due to just horrible horrible 2-3 hourly drenching night sweats that prevented me from sleeping. Last few years I got down to a very low dose of 25mcg Estradiol patches 2x week, plus 5 mg progesterone (Provera) for two weeks every months for uterine protection (everything is intact, no hysterectomy etc.)

In 2017 I had an 'ablation' under anaesthetic after ultrasound revealed endometrial thickening. Fast forward to this month and two weeks ago I had a hysteroscopy + scheduled D&C after ultrasound revealed (alleged) thickening, which turned out, I think, not to be, but instead some kind of fold in the uterus (a "curiosity" the gynie said, though I don't have all the details yet -- waiting for surgeon's letter, this was what he told me briefly after the procedure).

ANYWAY: on 15 Sept, in prep for the hysteroscopy/D&C, I stopped the HRT partly also to see if I would be OK without it...at last.

Now, 6 weeks on and I'm getting hot flashes (daytime, I don't really care about them) and one drenching sweat in the night around 1-3 a.m. So, yeah, my sleep is going back to the dogs, since I usually don't fall back to sleep after that.

MY QUESTION: Just wondering re those of you who have come off, or tried coming off low-dose HRT if I should wait a bit longer and see if things settle down again before going back on ... is it possible that this is the body still adjusting and the night sweat/s might dissipate if I just hold out longer, or does that never happen and once it's back it either stays this way or gets worse?

[Also, in case you read this far, the gynie said if I needed to go back on HRT he'd put a mirena coil in for the progesterone. Maybe I should make a separate post re women's thoughts on this, but just thought I'd mention it. Thanks all as ever.]

[Corolla]

Hey Petra,
I am 57 and been on various HRT, for 8ish years.
Stopped taking it 5 months ago.
I started on tablets and changed to gel during Covid. My body aches and pains drove me to take the gel and utro but unfortunately I went on a rollercoaster from that point on. No ease in aches and pains but a decline in my mood and anxiety to very low levels even though I adjusted  my doses. The biggest side effect from this regime is that utrogestran was responsible for my mental decline so decided to stop.
Hot flashes have returned and aches still with me but mood is better so will continue on this path.
Good luck to you.

[Petra]

thanks for your comment @Corolla. I am assuming you're still completelly off HRT. Oh...5 months and still the flashes and aches, that doesn't sound good.

I'm not sure I'll be able to hold out that long to see if things settle down. One issue I have is trying to untangle the issues, for example, because the night sweats ruin my sleep, I figure that's just as likely to be the cause of a worsened mood (and, obviously, tiredness) as mood being a direct symptom itself. But who knows!

I don't know about the gel and utrogestan. Not sure we have it here in New Zealand as an option.

Thanks again, and good luck to you, as well.

[flossie fiddler]

I was on HRT from 2013 until late 2019, but supply issues meant I was 2 weeks without it and didn’t feel too bad so decided to stay off it. Very quickly the VA started so started on Vagifem in Feb 2020, then the pandemic hit.

I assumed that all the joint pain I was experiencing was due to inactivity during lockdowns, and that the intense anxiety and mood swings was down to us being in a situation that we didn’t know anything about.

Fast forward to Summer 2022 and my symptoms start to become more pronounced, no temperature regulation, VA, getting worse, joint pain, muscle pain, feelings if someone stabbing me with pins, full body, inflammation, hair loss and more. I happened to stumble across the Louise Newson podcast and realised that all these were symptoms of hormone deficiency. I’ve been back on HRT since August, (I’m 57) and I have my life back.

All the symptoms are gone. I really do you think I will be on HRT for the rest of my life, and that’s fine by me.

[Alice]

Hi Petra,
I'm quite a bit younger than you, so no idea regarding stopping HRT.
I do have a mirena though. I originally had it for contraception and to control my heavy, painful periods. It now is the progestogen part off my HRT.
I personally find it painful to have it put in (the bit where they put it through the cervix), not everyone does though and I guess some of your procedures have been worse.
When I first had it put in I went from a regular heavy period to a few months of spotting, then eventually, no cycle at all.
I don't think it's given me any side effects and it does protect the lining of the uterus really well. The effect is supposed to be very local.
It lasts 5 years, I'm on my second. When it's time to have it changed I think I'm going to trial another form of progesterone as I won't need the contraception and would prefer to avoid the pain, if that doesn't work for me though, I'll just put up with having it done every 5 years.
I hope that helps, of course if you try it, you can always have it removed.

[Petra]

@Alice. That's sooo helpful, thank you. If I wind up going back on HRT, I don't think I'll go the Mirena route. The surgeon's offsider just called me (the Registrar) -- good results from the hysteroscopy, nothing bad going on, yay -- and there was zero to less interest in helping me with my menopausal symptoms, so, yeah-nah. I also looked for some studies and mirena hasn't been studied in women over 65...while the 5 year lifespan would take me UP to 65... hmmm, yeah-nah again.

Really appreciate the intel. Thanks again!

[Petra]

@Flossie Fiddler

Wow, so you stuck it out for over 2 years, and from what you say, the baseline, if there is such a thing, might take years to present after stopping HRT.

The zero temperature regulation is something I notice a lot, i.e. having to switch temperature reg to 'manual operation'. Damn, I am just finding it impossible to untangle the symptoms, as I said...am I grumpy because I'm getting inadequate sleep because of the night sweats, or ... or ... etc. etc. My night sweats are not nearly as bad as they were when I first went on HRT, but I just don't know how long to hold out to see how things settle out. From what you say, it might take quite a while.

Lots of thinking to do. And, again, thank you for your story. I rather think I'll be headed back to my GP before the year is out. (Also, as I'm in New Zealand, summer is just coming, and the change to hotter weather can also throw my sleep off....another confounding factor.)

I was on HRT from 2013 until late 2019, but supply issues meant I was 2 weeks without it and didn’t feel too bad so decided to stay off it. Very quickly the VA started so started on Vagifem in Feb 2020, then the pandemic hit
I assumed that all the joint pain I was experiencing was due to inactivity during lockdowns, and that the intense anxiety and mood swings was down to us being in a situation that we didn’t know anything about.

Fast forward to Summer 2022 and my symptoms start to become more pronounced, no temperature regulation, VA, getting worse, joint pain, muscle pain, feelings if someone stabbing me with pins, full body, inflammation, hair loss and more. I happened to stumble across the Louise Newson podcast and realised that all these were symptoms of hormone deficiency. I’ve been back on HRT since August, (I’m 57) and I have my life back.

All the symptoms are gone. I really do you think I will be on HRT for the rest of my life, and that’s fine by me.

[Alice]

Thanks Petra, it sounds like provera was working fine for you and it's pretty unpleasant being poked about. Good luck with getting back to where you were, sounds like it should in theory be quite simple.

[flossie fiddler]

I think I only stuck it that long because of the pandemic.

Keep us posted as to how you progress.

@Flossie Fiddler

Wow, so you stuck it out for over 2 years, and from what you say, the baseline, if there is such a thing, might take years to present after stopping HRT.

The zero temperature regulation is something I notice a lot, i.e. having to switch temperature reg to 'manual operation'. Damn, I am just finding it impossible to untangle the symptoms, as I said...am I grumpy because I'm getting inadequate sleep because of the night sweats, or ... or ... etc. etc. My night sweats are not nearly as bad as they were when I first went on HRT, but I just don't know how long to hold out to see how things settle out. From what you say, it might take quite a while.

Lots of thinking to do. And, again, thank you for your story. I rather think I'll be headed back to my GP before the year is out. (Also, as I'm in New Zealand, summer is just coming, and the change to hotter weather can also throw my sleep off....another confounding factor.)

[Petra]

Stopped HRT on 15 Sept...so two and a half months...a week ago I broke down and bought a supplement (black cohosh, magnesium plus some other stuff for bones etc.) I dunno, those things have never worked in the past...so what am I even thinking.

Ha ha. It's ALMOST bearable, down to the one nasty drenching sweat a night from which I am getting better and falling back to sleep.

Hormones, eh! Last night I was trying to make a lasagne to freeze for later eating, everything went wrong, everything sucked and I threw a mother of all tantrums and tossed the whole thing in the food recycle bin. Crazy, right. I just LOST IT. Not sure I can blame the hormones totally, OTOH I haven't done anything that mental in years. Felt like a 2-year-old. https://www.menopausematters.co.uk/forum/Smileys/extended/grin.gif

[flossie fiddler]

Oh my, this actually made me laugh out loud. Pre-HRT, I once shoved a fully decorated Christmas tree, complete with fairy lights in the wheelie bin in a rage. It had taken 2 hours to decorate. I nipped out to the Spar shop to grab a bottle of wine and when I came back, one of the cats had trashed the tree, and I had a meltdown.

The next year I was searching in the loft for the Christmas tree for ages (brain fog, obviously) before hubby reminded me that I had binned it, and all the decorations too.   

 

Stopped HRT on 15 Sept...so two and a half months...a week ago I broke down and bought a supplement (black cohosh, magnesium plus some other stuff for bones etc.) I dunno, those things have never worked in the past...so what am I even thinking.

Ha ha. It's ALMOST bearable, down to the one nasty drenching sweat a night from which I am getting better and falling back to sleep.

Hormones, eh! Last night I was trying to make a lasagne to freeze for later eating, everything went wrong, everything sucked and I threw a mother of all tantrums and tossed the whole thing in the food recycle bin. Crazy, right. I just LOST IT. Not sure I can blame the hormones totally, OTOH I haven't done anything that mental in years. Felt like a 2-year-old. https://www.menopausematters.co.uk/forum/Smileys/extended/grin.gif

[Petra]

Oh noooo... I totally get that. Glad I'm not the only one to whom this kind of thing has happened. Wonder what your bin men thought... took me ages to clean up the kitchen after The Lasange Incident, but it was worth it. #hormonerage https://www.menopausematters.co.uk/forum/Smileys/extended/grin.gif

Oh my, this actually made me laugh out loud. Pre-HRT, I once shoved a fully decorated Christmas tree, complete with fairy lights in the wheelie bin in a rage. It had taken 2 hours to decorate. I nipped out to the Spar shop to grab a bottle of wine and when I came back, one of the cats had trashed the tree, and I had a meltdown.

The next year I was searching in the loft for the Christmas tree for ages (brain fog, obviously) before hubby reminded me that I had binned it, and all the decorations too.