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Author Topic: At a loss as to what to do .  (Read 1139 times)

pepperminty

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At a loss as to what to do .
« on: September 04, 2024, 02:48:30 PM »

Hi ladies,

I am hoping someone will be able to advise me. You know what it is like when you are feeling awful and overwhelmed and you need a bit of advise a reassurance, or suggestions for a way forward. I have been on Femosten1/10 for a number of years without too much issue really.  I am assuming my current issues are HRt related as it happens around the same time monthly.

I have been diarising daily to get a accurate more picture of my health, and this has been going on for a year, in its current form. It appears that each month to a greater or lesser degree from day 7 of the just estrogen bit to day  14 /16,  I feel dreadful on and off .  I start to feel a bit tired and under the weather after a week of estrogen only. Then it progresses where I feel a bit ill more regularly throughout the day until I am physically incapacitated .

It starts with my tummy being bloated , a bit of anxiety - I can manage that .
Then by day 13/16 I am nauseous, bloated, breathless on exertion and have what I can only describe as funny turns.  - on a bad month I have an episode where I vomit continually around that time  ( only stopped by anti sickness medication) and I have diarrhea always - can't get off the loo. My heart rate goes up just before all this happens and during  I feel dreadful. I can only lie still when it is at its worst and I am unable to speak or open my eyes without vomiting.
This lasts anything between a couple of hours and a day. Then the next day I am exhausted . The nausea and increased heart rate are the worst.

I cannot go on like this every month.  I  have absolutely no control, or idea when exactly it will happen  except that it could be any day between day 8 of the estrogen and day16, where I am on the loo and nauseous and or being sick . It appear to be at its worst when on the estrogen part? I get the odd bit of anxiety and feeling crap generally , but I can manage that.

I am not on a high dose. I take an extra bit of estrogen each day , but I am still not on a medium dose, as yet.

I eat well, hydrate well, and do relaxation.

Can anyone give me any suggestions or advice please? All this is getting me down.


Pepperminty xx
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CLKD

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Re: At a loss as to what to do .
« Reply #1 on: September 04, 2024, 03:05:43 PM »

I admire your perseverance as I would have stopped the regime long ago.

Even if it's cyclical, those symptoms seem OTT.  Nothing should make you that ill/sick.

Who is prescribing your HRT?  Which symptom did you want to ease 1st B4 you began ?
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pepperminty

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Re: At a loss as to what to do .
« Reply #2 on: September 04, 2024, 03:15:41 PM »

Hi,

I have taken HRt for many years  and it is only the last year that this has progressed to these symptoms. I used to get a bit achy on day 23, but that was it. I am with the NHS menopause clinic. initially I just kept on hoping it will eventually stop , as things do tend to change throughout menopause etc. But this hasn't. My GP says it is " just menopause". 

PMx
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sheila99

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Re: At a loss as to what to do .
« Reply #3 on: September 04, 2024, 03:47:21 PM »

I think you need a more knowledgeable gp. It's possible it's oestrogen related but it could also be that you've developed a reaction to femosten. Personally I would change hrt, transdermal is safer anyway and the breathlessness, nausea and funny turns are a bit concerning.
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CLKD

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Re: At a loss as to what to do .
« Reply #4 on: September 04, 2024, 04:26:43 PM »

Go back to your GP and explain that nothing is 'just' or 'only'  >:(

As suggested do consider changing your regime, hopefully via a dedicated menopause clinic, there are waiting lists both in the NHS and private sector. 

No treatment other than chemo should make a person feel that ill!
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bombsh3ll

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Re: At a loss as to what to do .
« Reply #5 on: September 04, 2024, 04:35:52 PM »

I think there are a couple of issues here -

One is the symptoms of bloating, vomiting and alteration in bowel habit, which even though they appear cyclical, warrant investigation with blood and stool test and possibly an ultrasound.

It is difficult to attribute that to hormone therapy that you have been taking for several years.

Second is to consider changing to a different hormone therapy, particularly considering whether you would be better on a continuous regimen given the cyclicity of your symptoms.

Any clinician who thinks something is "just" menopause is probably not the best fit for you. This is dismissive, and the symptoms you are describing are not characteristic of hypoestrogenism.
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pepperminty

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Re: At a loss as to what to do .
« Reply #6 on: September 04, 2024, 04:36:59 PM »

I think you need a more knowledgeable gp. It's possible it's oestrogen related but it could also be that you've developed a reaction to femosten. Personally I would change hrt, transdermal is safer anyway and the breathlessness, nausea and funny turns are a bit concerning.

Hi Sheila,

Thanks for replying

my GP did tests initially (all normal) and said it is one of those things related to menopause , and just to put up with it really. Trouble is I do have days when I feel good. That is interspersed with usual aches and feeling a bit crap. But Having these symptoms I mentioned in my post is getting a bit too much now. I can't go out. The breathlessness is only a few days a month, and I have no energy, and my heart races on exertion. On the good days I race around no problem.

When the tummy problems  are bad I have to take anti sickness meds to stop the nausea or when I am actually being sick. It usually always starts with an upset tummy,going to the loo and feeling very strange.
Perhaps I should try the NHS lead on HRT in our area first - I can go privately and see what he says?
I don't know if it is the HRT , but it happens more after 1 week of the estrogen when I am on the second week before I start the progesterone phase.   
I have put up with this for so long, I don't want to put up and shut up anymore. Every time I see the GP , I have to wait so then I am well again and I feel they don't believe me. Or are not really concerned as my test results always are ok. Low iron though.

I am such a positive person normally , but I am terrified with having to live like this and no one getting to the bottom of it. Sorry to moan , but I am not feeling my usual i will be fine / it will pass self at the moment.

PMXX
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pepperminty

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Re: At a loss as to what to do .
« Reply #7 on: September 04, 2024, 04:45:07 PM »

I think there are a couple of issues here -

One is the symptoms of bloating, vomiting and alteration in bowel habit, which even though they appear cyclical, warrant investigation with blood and stool test and possibly an ultrasound.

It is difficult to attribute that to hormone therapy that you have been taking for several years.

Second is to consider changing to a different hormone therapy, particularly considering whether you would be better on a continuous regimen given the cyclicity of your symptoms.

Any clinician who thinks something is "just" menopause is probably not the best fit for you. This is dismissive, and the symptoms you are describing are not characteristic of hypoestrogenism.


Thank you for your reply Bomsh3ll,

I have had a recent fit test and all ok. I am regular every day.  I do think I probably need to take the plunge and change to continuous to see if that is any better. Not sure whether to go with continuous Femostem ( that would be slightly lower amount of estrogen than my regime now ( I top up estrogen currently) or to go transdermal and change completely. I can't use the harsher progesterones  as they don't agree with me.

PMXX
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bombsh3ll

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Re: At a loss as to what to do .
« Reply #8 on: September 04, 2024, 05:08:22 PM »

Certainly changing to continuous is worth a try.

You don't need to lower your estrogen dose- femoston comes as 1mg/5mg tablets, and whatever you are currently topping up with you could continue.

Or you could try micronised progesterone, either oral or vaginal, with your estrogen of choice.
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pepperminty

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Re: At a loss as to what to do .
« Reply #9 on: September 04, 2024, 05:25:49 PM »

Certainly changing to continuous is worth a try.

You don't need to lower your estrogen dose- femoston comes as 1mg/5mg tablets, and whatever you are currently topping up with you could continue.

Or you could try micronised progesterone, either oral or vaginal, with your estrogen of choice.

Thank you - that would mean that I would be taking both the 1/10 low dose and  and the 1/5 conti ultra low dose  together each day to make up the dose I am currently on?  Perhaps I should try this first and see and then if it doesn't change anything or i get worse then go to transdermal?

Thank you again for replying, when you feel crap and foggy headed it's hard to make sense of it all.

PMXX
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bombsh3ll

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Re: At a loss as to what to do .
« Reply #10 on: September 04, 2024, 06:49:00 PM »

I wouldn't take a continuous and a cyclical preparation together.

If you need 2mg of estrogen you would be better taking 2x 1/5mg femoston daily.

Or 2mg estradiol alone with micronised progesterone, an IUS or (off label) desogestrel 150mcg.

Whilst adding extra estrogen with the same dose of progestogen is not generally done as theoretically the progestogen may not be sufficient to oppose the higher dose, this can be done with an annual scan for endometrial monitoring, and is best done under specialist supervision.
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pepperminty

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Re: At a loss as to what to do .
« Reply #11 on: September 04, 2024, 07:04:27 PM »

I wouldn't take a continuous and a cyclical preparation together.

If you need 2mg of estrogen you would be better taking 2x 1/5mg femoston daily.

Or 2mg estradiol alone with micronised progesterone, an IUS or (off label) desogestrel 150mcg.

Whilst adding extra estrogen with the same dose of progestogen is not generally done as theoretically the progestogen may not be sufficient to oppose the higher dose, this can be done with an annual scan for endometrial monitoring, and is best done under specialist supervision.


Thank you,

I am on between 1.5mg of estrogen and 2mg - I go up by a quarter of a tablet and I am not quite 2mg yet . The progesterone for 2 mg and 1mg  is the same dose with sequential.

So I thought that I would try the a. Ultra low dose

Femoston conti low dose   Estradiol 0.5mg, Dydrogesterone 2.5mg   and the


FEMOSTON CONTI*   1 mg estradiol & 5mg dydrogesterone daily together.

And if that doesn't work I could go up to the 1mg conti  x 2.

I am assuming the NHS would agree to that.

I am not sure we can get separate desogestrel 150mcg.

PMXX

 



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