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Author Topic: Stopping HRT :/  (Read 5191 times)

MegnB

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Stopping HRT :/
« on: April 24, 2018, 09:00:27 PM »

I've come to the conclusion that HRT and I are not getting along very well. I  am on prescription combination #5, and I've been waking up 4 + times a night, soaked through in full panic attack mode and left wandering the house until the adrenaline wears off. I actually feel as bad or worse than I did before I started treatment. I'm so discouraged. I haven't slept more than 3/4 hours in over a week and look and feel like a complete train wreck.

My new doctor says to take 5 days off every month (that was news to me as I've always taken it continuously) and I'm going to try to just stay off.
I started keeping a diary of symptoms so I can compare with being on HRT/off HRT.

Anyone else have a trial run of stopping HRT? Did you stop completely or wean yourself off?
Thanks for listening to me moan.  :-\
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Dancinggirl

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Re: Stopping HRT :/
« Reply #1 on: April 24, 2018, 09:29:32 PM »

Which HRT are you using? Is this HRt a continuous regime - so progesterone with oestrogen everyday?
What symptoms are you trying to control? How long have you been using this HRT?
It's fine to just stop HRT - weaning off won't necessarily make things easier although physiologically doing it gradually can seem better. DG x
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MegnB

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Re: Stopping HRT :/
« Reply #2 on: April 25, 2018, 07:32:53 AM »

Hello Dancinggirl :)

Yes, it is a continuous regime. I can only give you the last prescription as I've binned all the previous. I started on patches, but I'm allergic to latex, so those were out. I have autoimmune issues that play with my liver enzymes, so no pills for me. That left me with gels. The latest is Biest .1% (.02 estradiol/.08 estriol) twice a day and 5% progesterone (.5) twice a day. Vagifem as well (probably won't stop that). The next thing on offer is Pregabalin :/.

I've decided on just stopping and tracking symptoms. How long does it take to leave your system completely?
Thanks for taking the time to answer. I really appreciate it.
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Dancinggirl

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Re: Stopping HRT :/
« Reply #3 on: April 25, 2018, 07:43:11 AM »

Stopping to reassess things is probably a good idea. Using progesterone all the time can be an issue for many women as it can give PMT and low mood etc..
I would continue with Vagifem though as this won't absorb systemically and is essential to support the urogenital atrophy.
I suspect you are not in the UK as the systemic hormonal treatments you are being prescribed are not normally offered here?
Hormone levels should drop fairly quickly once you stop HRT.
You haven't told us what meno symptoms you are trying to control? If it is low mood and anxiety that are your main issues, did this all start when meno hit? DG x
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MegnB

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Re: Stopping HRT :/
« Reply #4 on: April 25, 2018, 07:52:31 AM »

I started the different regimens in the UK, but moved to Switzerlanda few months ago. The docs here in Switzerland just prescribed the same regimen minus the testosterone.

I started HRT because I was having over a dozen, soaking hot flashes a day, topped with panic attacks and incredible levels of anxiety. I would classify myself as a lifelong anxious person, but never sought treatment or medication. I honestly thought I was going insane. The GP I saw was fabulous and suggested I start HRT. Initially, everything settled. The anxiety all but disappeared, the hot flashes lessened to under 4/5 a day, I slept well. Magic. Liver numbers went haywire, went to patches, allergic to the latex in the patch, went to gel. I think my body hates me playing with hormones. I couldn't take bcp either.

I don't have any idea why it all went to <searches for poo emoji>. Now I'm back to 8/10 hot flashes a day, wake up 3 times a night in a full sweat and panic, hot flashes all day long (feel nauseous, wonder why I feel nauseous, panic attack, hot flash, rinse, lather, repeat). And this is ON HRT?

I could live with a few hot flashes a day, no panic attacks that wake me in the night, 6 hours sleep. That's all I'm asking  :)  :'( :) :'(
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Dancinggirl

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Re: Stopping HRT :/
« Reply #5 on: April 25, 2018, 09:15:14 AM »

I think finding the right balance is very tricky but I do think too much progesterone is probably why you are struggling.  Using sequential HRT will mean putting up with monthly period (sometimes one can get away with longer cycle but that bring erratic bleeding).

If patches are a no, no for you, and oral hormones are not ideal, then have you considered the Mirena with separate Oestrogel  as nothing will be going through you liver and you can adjust the amount of oestrogen you use to suit your need. I had the Mirena with Oestrogel for over 4 years in post meno and found it the least problematic of all the HRT regimes I had tried (I'd had 25 years of HRt use due to POF). Here is the section from this site all about teh Mirena:
Mirena is a levonorgestrel (type of progestogen) releasing system which sits inside the womb, gradually releasing the progestogen into the womb. It is licensed in the UK and Ireland as a contraceptive agent, for treatment of heavy periods and, from August 2004, also for the progestogen component of HRT. It can be used in both the perimenopause and postmenopause and it is particularly useful for:

Persistent progestogenic side effects from systemic HRT despite changes in type and route of progestogen.
When contraception is required along with HRT in the perimenopause.
When withdrawal bleeds on sequential HRT are heavy, after investigation if indicated. (see WHEN TO BE REFERRED )
With Mirena in place, systemic estrogen alone can be taken as the Mirena provides adequate protection of the womb lining and the estrogen dose and route can be tailored to meet the individual's needs.

Progestogenic absorption throughout the body is minimal so reducing progestogenic side effects. The effect of Mirena on the womb lining can significantly reduce bleeding and when used as part of an HRT regimen, in time, 30 to 60% of women have no bleeding at all. Although Mirena used for contraception is licensed for 5 years, the license for use for the progestogen part of HRT is currently 4 years.


Your alternative would be to try a AD or SSRI which will often give relief from flushes, anxiety etc however these are an oral drug which can bring digestive issues and other side effects. Nothing will be perfect - it is trial and error I'm afraid.
Take this break from HRT, keep a diary, have a good look at your diet and exercise regime to see if you can tweek this to improve things a bit and make sure you practise relaxation techniques to cope with the anxiety, panics and lack of sleep.  After 2-4 weeks then see your doctor to discuss further. 
DG x
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MegnB

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Re: Stopping HRT :/
« Reply #6 on: April 25, 2018, 08:45:26 PM »

Thank you so much, DG.

I vaguely remember the gp offering a mirena but I worried about all the side effects I googled  :). Might be time for another look.
In the meantime, I'll keep a diary, keep up my workouts and pray for a miracle. I won't add anything else into the mix for now.

Thank you for the info about the progesterone too! That's the one thing they've been playing with a bit all along!


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Optimist

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Re: Stopping HRT :/
« Reply #7 on: April 25, 2018, 09:42:43 PM »

Hi MegnB you sound like me a few months back. Have trialled many hrts and the progesterone always produces side effects like you sound to be having. Last conti hrt-femoston 1/5 gave me night sweats back, waking 4/5 times a night completely wired, excessive urination despite vagifem helping. Now I'm on the Mirena and oestrogel and like DG has said I seem to be doing okay (apart from a blip with manufacturing problems recently but that's a different story) now back on track (fingers crossed) & the beauty of the oestrogel is that you can titrate your dose up/down to suit you. I'd defo recommend if you're having progesterone  side effects xx ps re the stopping-o recently had to stop oestrogen as the oestrodose they gave me as s substitute caused lots of problems so GP said stop for 2/3 days to get out of your system then start again when oestrogel back in stock. It stopped my chronic headaches within 2 days and I then started off low on the oestrogel with a back up patch til I weaned off patch and back on 3 pumps of oestrogel. Gave my body a bit of a break and I felt okay. Over xmas when conti hrt really bad side effects I had only oestrogen fog 2 weeks and felt fantastic but  need the progesterone for womb lining protection. Glad I took the chance with Mirena xx
« Last Edit: April 25, 2018, 09:47:46 PM by Optimist »
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bramble

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Re: Stopping HRT :/
« Reply #8 on: April 26, 2018, 03:13:45 PM »

I weaned myself off over 3 months and then it was another 3 months before it was all out of my system. That was the way the doctor recommended. Had been on a continuous regime for quite a number of years.

Bramble
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jillydoll

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Re: Stopping HRT :/
« Reply #9 on: April 26, 2018, 03:48:39 PM »

Hi megnb.

I stopped my hrt (femoston conti ) last October, after being on it for around
6 months, couldn't put up with the headaches anymore, I managed to get through
Xmas, but then in January started to get symptoms again, really low mood, anxiety
through the roof, not sleeping that good, so I put myself back on it again, February 3rd,
And found I started to feel better after about a week or so.
I was also taking an antihistamine everyday to help with the anxiety, which now I've stopped,
due to dancinggirls advice, because they were giving me migraines.
Since I've stopped them the hrt is doing what it supposed to do , I still get low mood,
And headaches nearly everyday but I think they're getting better, and I feel better too.
I will carry on with the hrt for as long as I can. I just can't cope with everyday life
struggling like I was.

So yeah, if you feel like you want to stop, then stop.
You know your own body, and especially if you think it's not doing you any good.

I also have an autoimmune disease of the liver. ‘PBC'
But my gastroenterologist told me he was ok with me going on hrt.
As far as I know it hasn't caused any problem, but I'm due to see him next month.

Good luck hope everything goes good for you.

Jd x
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MegnB

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Re: Stopping HRT :/
« Reply #10 on: May 02, 2018, 08:55:35 PM »

Sorry! Been a busy week!  Thank you so much Bramble, jillydoll and Optimist for your comments. I really appreciate you taking the time to share your regimens and thoughts. I had no idea about the progesterone, but the waking in the night to pee 4 or 5 times and rolling panic attacks finished it for me :D.

I have to say (I stopped a week ago), I feel better. I have fewer hot flushes during the day (4 or 5 instead of 10) and I don't wake up as often at night. No panic attacks, just my old friend, general anxiety. I'll take it. We'll see what week 2 looks like :D. I plan on getting information about the Mirena, but I want to see how I feel at the end of a month without HRT.

Bramble, did you ever go back on HRT? Did you ever find something that worked for you? Optimist, have you had any issues with the Mirena at all?
jillydoll, they keep blaming my elevated enzymes on the HRT. I'm up for a re-check at the end of the month, so we'll see if not taking the HRT makes any difference at all. I predict no.

Thank you so much ladies, I really appreciate the support. I've moved recently, and have trouble managing the healthcare questions in a foreign language.
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Optimist

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Re: Stopping HRT :/
« Reply #11 on: May 02, 2018, 09:17:17 PM »

MegnB
I think the Mirena has been the least problematic bug I'm having to use 4 pumps of oestrogel to counteract any side effects (mostly elephant peeing constantly!) seems to be under control with the 4 pumps (touch wood!) and I also take a magnesium supplement at night that I feel really helps. I spotted for first 2&1/2 months but that seems a lot better too now. The only real problem I've had as such was when the oestrogel was our uf supply and I was given oestrodose-a very poor supplement for me and caused chronic headaches and general nig feelinv right. Back in oestrogel and seems okay so far. Fingers crossed! Let us know what you decide. Progesterone is a big bear for a lot of women but on other sites they promote utrogestan as a bio identical which some women tolerate well. X
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MegnB

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Re: Stopping HRT :/
« Reply #12 on: May 29, 2018, 05:33:12 AM »

Just an update after being off HRT for almost a month.

For whatever reasons, the hot flashes have almost disappeared completely. Panic attacks that came with the hot flashes gone as well. I can't figure it out. I have to find a way to keep the lady garden in good shape (and not pee every hour). My sleep schedule is bizarre, but the doc suggested I switch my workouts to mornings instead of the evening. <shrug>

For now, I think I'll stay off and just use the vaginal estrogen tabs the doc recommended for VA and skip the rest. Are there any other benefits for taking HRT if you are managing symptoms relatively well?

Thanks everyone. Also @optimist..."elephant peeing." I'm still laughing :D
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Dancinggirl

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Re: Stopping HRT :/
« Reply #13 on: May 29, 2018, 07:07:50 AM »

Hi Megan
So pleased to hear things are settling without systemic HRT. I think sometimes the body simply doesn't want to cope wit hrt any more. I am 62 and stopped hrt 2 years ago and just use local oestrogen to look after my urogenital area. I am mostly relieved not to be dealing with the hrt side effects  - over the years my body to get more and more sensitive and less able to cope with hrt.
Sleep issues have been my worst meno symptom but I am even managing this better by being strict with my bedtime and morning routines. Exercising in the evening is not a good idea as it wakes the body up - the evenings should be about winding down, reducing exposure to light and preparing for sleep.  Your doctor is right about diing the exercise in the morning.
To help
The peeing issues you need to avoid caffeine, alcohol and fruit juices as they irritate the bladder - so stick to water and make sure you drink enough. If your urine is strong and acidic then it makes the bladder want to expel it more often - so drink more water not less. Also local
oestrogen alone may not be enough - you need to keep the flora balance in the vagina balanced so vaginal moisturisers daily are good eg SYLK or the YES products are best. I also use Multi Gyn Actigel for a couple of days if I feel itchy or sore as this will kill bacteria and restore the balance.
Hope things continue to go well.
DG x
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Letmein

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Re: Stopping HRT :/
« Reply #14 on: May 31, 2018, 05:34:07 PM »

I too gave it up after 3 months and that was definitely the right decision for me. The benefit of the oestrogen wasn't as good as I'd hope and was totally counter-balanced by the horrible effects of the progesterone. I kept waiting to finally feel much better but after the third cycle of progesterone, I wanted to cry as I hated it so much. When I stopped, it was a complete relief. I also hated having to remember when to change the patches, take/stopped the progesterone and I realised that I didn't like the fact that I would never know when my period really stopped, and so not knowing if any bleeding was normal of requiring investigation.

Like you, I was surprised that my symptoms didn't come back to nastily and probably because I now know that they are directly linked with the menopause (rather than some nasty illness), I am better able to accept them. Of course things might get worse before it gets better, but I doubt I would want to go back on it.
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