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Author Topic: ME/CFS and HRT, please help!  (Read 5828 times)

PollyEm

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ME/CFS and HRT, please help!
« on: March 30, 2016, 12:26:28 PM »

Hello ladies,

I'm new to this forum and have just signed up. Is there anyone out there who has ME/CFS and is on biodentical hormones? I have had ME/CFS for 18 years and have had relapses over the years, but nothing like this since experiencing perimeno/meno symptoms, it's been a nightmare.

The perimeno symptoms started 2 years ago at 45. I had blood tests done back then and the results suggested perimenopause. I tried synthetic hrt but couldn't tolerate it. I also tried biodentical hormones too but gave up. Then last year all the meno symptoms disappeared and I was well for 9/10 months and back to normal. Then the symptoms returned at the end of the year in December and I believe that this has again exacerbated the ME/CFS symptoms. I have had another relapse, functioning is down to 10%.  I am trying the biodenticals again out of desperation and am currently taking Oestrogel 2 pumps daily. I have been on this for a week and have an appt booked to see my Gynae next week to discuss the progesterone side of therapy. I struggled with this side of therapy whilst on it before. Is it normal for meno symptoms to disappear for months and to then return?

Any advice would be much appreciated.

Many thanks.

PollyEm
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babyjane

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Re: ME/CFS and HRT, please help!
« Reply #1 on: March 30, 2016, 01:16:41 PM »

Hello PollyEm  :welcomemm:

I don't know about HRT because I never used it but there are many other ladies who can help you with your questions there.

I was diagnosed with ME/CFS in 2001 and got recovery to about 65% by 2005.  I now know my limits and can generally cope without too many problems but the things that will cause me problems are stress and the menopause.  I am also hypothyroid and I was warned that it would be difficult to keep my levels stable at the menopause and this was the case.

I am now post menopause and my last two thyroid blood works have been much more stable so I do think the perimenopause is quite disturbing to our bodies and also to our minds. If you also have an underlying chronic condition then it all becomes a very difficult balancing act.

Hope you enjoy the forum.
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PollyEm

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Re: ME/CFS and HRT, please help!
« Reply #2 on: March 30, 2016, 03:21:41 PM »

Hi babyjane

Thanks for your reply. Do you feel better now that things have settled down hormone wise? And do or did you take any and alternatives to HRT such as supplements or homeopathy? I'm so desperate to start feeling well again, it's been 3 months now and I've been in bed for most of the time x
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babyjane

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Re: ME/CFS and HRT, please help!
« Reply #3 on: March 30, 2016, 04:05:50 PM »

yes I think so thank you, I usually recover from an event in a few days now whereas it used to take me a few weeks.

All I used was St John's Wort to stabilise my moods and Vagifem for vaginal atrophy/dryness. I am so very sensitive to chemicals - drugs, alcohol, household cleaners, hair dyes that I tend to sidestep anything that I don't need.  Fortunately my menopause was manageable and I always thought I could try HRT if it got worse but it didn't so I left well alone.  I have great sympathy for ladies who do not cope well with it all.  I think if I had periods cramping and flooding everywhere it could well have been a different story but I had a hysterectomy in 1997 so I never really knew where I was in the process until the flushes started.  As these have dwindled a lot I suspect I am post meno now, I am 59 years old.

My 50s weren't very easy and I am hoping my 60s will be better.
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Hurdity

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Re: ME/CFS and HRT, please help!
« Reply #4 on: March 31, 2016, 09:47:22 AM »

Hi PollyEm

 :welcomemm:

In answer to your question - during peri-menopause when your hormones are fluctuating - symptoms do come and go unpredictably. Some women try alternative treatments at this time - but because your body is continually changing it is difficult to say of these, what works and what doesn't.

There is an article about peri-menopause here which you might find helpful:
http://www.menopausematters.co.uk/article-perils-of-the-perimenopause.php

Have you been given any cause for your ME/CFS? Aside from post-viral conditions and depression, low thyroid, low oestrogen and/or low testosterone can also cause these symptoms but docs do not necessarily test for them all. In fact women on here have been given this diagnosis when in fact they needed hormones! It must be so debilitating for you.

I hope you start to feel much much better on the gel - but have you also had your thyroid tested - and do you have any other symptoms which could indicate low thyroid function? Also very few doctors test for testosterone - and in my case, as an example I was going to be referred for fibromyalgia testing due to ongoing tiredness and muscle pains, but I went to a private gynae who gave me some testosterone ( I also had low libido) and it has certainly helped hugely with the muscle pains, and to a certain extent with the tiredness. Just a thought - although I am sure you will have left no stone unturned if you have suffered for that long. Just that it seems the medical profession doesn't always make that leap - and think of hormonal solutions - when it comes to women.

Homeopathy is simply placebo and most of the alternative treatments for menopause have insufficient evidence as to their efficacy. The best thing you can do is what you are doing - ie replacing oestrogen in the most natural way possible ie transdermal estradiol - in your case using the gel. When you start the progesterone - the most "natural " one is utrogestan - micronised progesterone - but this can cause tiredness because it has to be taken in large doses - which might not be ideal with your condition. The next best one is dydrogesterone which used to be available as Duphaston  - but i don't think it is obtainable in UK now. Otherwise it will have to be one of the synthetic ones - but hopefully you will be fine with these - although possibly try the utrogestan - but on a cyclical basis so you don't have to take it continuously. I presume you are still having periods?

Hope this helps :)

Hurdity x
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Smokey

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Re: ME/CFS and HRT, please help!
« Reply #5 on: March 31, 2016, 04:23:29 PM »

Hi PollyEm

I do not have ME/CFS but have MS and my main symptom is fatigue which I guess may be similar to you, why they call it fatigue I'll never no I definitely don't feel just sleepy, more like exhausted after doing simple things.

I am 50 next week, and have been on Hrt for five years after bad symptoms some of them not the norm except for some of the lovely ladies on this forum
Of course.

My doctor actually reduced my Hrt from 75 patch to 50 and I think it does effect how you feel if you have some other illness as since then I'm exhausted much more and am starting to feel ill.

I am usually ok doing things around the house etc if I pace myself but at the moment I'm exhausted just making a cup of tea!
I'm fed up with the doctors not knowing what their talking about with regarding Hrt I wanted to increase from 75 to 100mg not reduce it I've already got fuzzy heads and heavy heads creeping back in unless it cause I'm now on cont patches with have progesterone in them continuously.

I've been referred to meno specialist which I'm waiting for a phone call from to book an appointment. I'm thinking of asking to try the oestrogel/Ultrogestan Hrt and see if it suits me better as the dosage is easier to adjust yourself.

I also have under active thyroid too, but apparently my levels are normal, but trying to get sense out of docs receptionist is impossible. Waiting time on phone is 60 minutes, let alone getting to speak to a doctor!

I hope you get on OK at your Gyne appt let us know how you get on.

Ann x
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PollyEm

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Re: ME/CFS and HRT, please help!
« Reply #6 on: April 06, 2016, 09:18:29 PM »

Hi ladies,

Thanks for getting back to me and sorry I haven't got back sooner. I've been exhausted tbh. Ive been using the oestrogel for 9 days now, the hot flushes are subsiding but I'm just so tired. Could this be a side effect?

Thank you both for your replies Hurdity and Ann. I got diagnosed with ME/CFS years ago. They tested me for everything back then and I saw so many different medical professionals and spent sometime in hospital. A general physician actually diagnosed me in the end and said that I had developed ME/CFS because I had had glandular fever when I was 20. I did recover from that but then got some gastric bug when I was 29 and never recovered. I was very unwell at first and have had relapses since then, but nothing like this since the hormones started going haywire. I am now 47. Ann, I hope you have more luck trying to get an appointment and please let me know how you get on. Hurdity, I haven't had a period for almost a year now. I had bloods done in 2014 and they suggested that I was peri. I had more done 2 weeks ago and they suggest I am now postmeno. My Dr checked my thyroid and that came back normal. I am going to see my Gynae on Friday to discuss the progesterone side of the therapy and will also speak with her about the testosterone. Thank you again and I will let you know how I get on x x
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Smokey

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Re: ME/CFS and HRT, please help!
« Reply #7 on: April 07, 2016, 01:47:06 PM »

Hi PollyEm

I've just got my gyn appointment 9th of May.  I did put an extra patch on again to go back to my original Hrt dose of 75mg with the hope of feeling better, mind you I'm still exhausted, but taking it easy with just reading etc.
I'll let you know how I get on at my appointment in May.

I've never had my bloods done to see where I am with regards to the menopause. Should I ? My periods were spaced out when I was about 43/44
So not sure where I am now. Would the testerone be for libido? I think I need some to if I can get it! Glad your thyroid is ok, mine apparently is in the normal range but not sure if normal is normal for me, if that makes sense!

I decided the Conti patches I was on are not for me as apart from spotting and light period every two weeks found the Northestone was causing me constant fuzzy heads so changed back to sequil method at moment just got a few patches left to last me until gyn appointment.

I will let you know what I'm prescribed .

Ann x
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PollyEm

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Re: ME/CFS and HRT, please help!
« Reply #8 on: April 08, 2016, 11:11:24 AM »

Hi Ann,

Yes I would definitely get bloods done to check the hormone levels. That way they then know exactly what to prescribe.

Good luck and will let you know how I get on.

x
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