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[Night_Owl]

[My HRT regime is ultra low dose patch - 25mcg Estraderm cut in half with a further slice taken off.  So about 10mcg twice per week, plus Utrogestan 100mg x 10 nights, v-route, every 6 weeks.  Twice yearly endo scans that the Meno Clinic insist upon - even on this low dose regime.]

I'm highly progesterone intolerant and get so fed up with how it affects me - so decided to have (another) break to see how my body would react.  I have tried to come off before and each time gave in and returned to it.

Bearing in mind that I am / was on only a teeny tiny dose of estrogen - this still happened after about one week of no patch.  Initially I felt good and a surge of energy, then this:

* Hugely depressed, crying, feelings of panic and dread
* Crippling 3 day migraine - worst one I've had for a long time
* Night sweats much worse - I've never been free of them, even on high dose HRT years ago - but they returned drenching, sweating from backs of knees etc
* Insomnia - awake for hours after each night sweat
* Immediate eye discomfort, dry itchy eyes
* Dark eye bags
* Bladder urgency worse
* Hair loss increased massively - and tingling scalp (which I know is Telogen Effluvium - shedding)

After about one month of ZERO quality of life - and becoming increasingly unbearable for my partner to live with me! - I stuck my tiny patch back on.  I just couldn't persevere much longer.  The depression became so difficult to cope with.  The hair loss so distressing.

The very next day my eyes felt better and about 3 days later the other symptoms started to lessen.  Don't get me wrong, I still have symptoms on the low dose regime, but to a more "live-able" extent.

This begs the question often discussed on here - if the body becomes this estrogen dependent, how on earth can you get off it?. 

It's akin to being an estrogen junkie!  A jibbering wreck with out it.

I can't imagine being 65 and still taking HRT and enduring vile progesterone side effects, twice yearly endo scans.  Or being 65 and trying to come off - with the terrible night sweats and worse migraines etc, coping as an older person.

[At my next meno clinic appointment, I'm going to discuss all this and maybe ask for an Endocrinologist referral, as the withdrawal effects seemed so extreme.]

The herbals don't work for me.  The only slight relief I get is from magnesium and inositol.

Caught between a rock and a hard place?

I know we often talk about coming off - it's something that a lot of us worry and think about - would love to hear any experiences of those who have managed to come off and stay off.


Night_Owl
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[Joyce]

I'm only on oestrogen. However, I was a jibbering/blubbering/ sweating wreck when I came off it a few years back. GP put me back on it again. Eventually put on patches by meno specialist. Estradot 50 had me jangling, so down to 37.5. Then reduced about a year ago to 25. Beginning of the year I started halving the 25s. Also added in starflower caps. Have flushes a few times a day, but not too horrid. 2 weeks ago I ran out of the starflower & thought I'd give it a go without them. But yesterday bought more, as flushes doubled in quantity & were a bit stronger. So hopefully will benefit soon.

[bramble]

I was on low dose pills and stopped gradually over 6 months (pills). Apart from a few odd flushes and broken sleep for a few weeks after stopping altogether, it has been fine. I am still toasting at night in bed. I have noticed a dramatic drop in energy and stamina levels.

Bramble

[CLKD]

One can't become oestrogen dependant as our bodies naturally make this although it does lessen as we age.  Your HRT should be stabilising what your body lacks  ……… hence the symptoms when you stopped!  You are going through the Mill  :big hug: ………..

Have you read the menus, left of screen?  Also, Hurdity makes really good posts about HRT so if you look for her name under 'members' above you can follow her responses to others. 

I never really understood my body and how it works  ……… I knew how my hormones affected me during the years so could keep a diary for cycling patterns. Then I could sort my social Life.  Then PMT struck in my mid-30s  so contacted NAPS who were really helpful in suggesting a regular eating pattern. 

It's not called 'the change' for nowt  ………. <sigh> - one thing to check is thyroid function!

Are you State side? 

[Dancinggirl]

Hi Night_owl
I came off HRT over 9 months ago but still using local oestrogen for vaginal/bladder problems. I think I've coped quite well this time( had a 3 year break in my early 50s which was ghastly) but I am in a slightly less stressful time in my life at the moment. My flushes have not been too bad but I do get too hot at night and I'm not sleeping well so feeling very tired a lot of the time.  I'm not ruling out going back on a very low dose the same as you.
If the progesterone makes life difficult then perhaps it's worth trying some of the other options? Have you thought of trying some of the other drugs that reduce sweats etc. - they tend to be ADs. I have a colleague at work - like you feeling dependant on HRT but was not really getting much relief from sleepless night, depression and flushes - and her GP has put her on Citalopram alongside HRT and she is feeling so much better.  The hope is she can gradually come of HRT completely. Have a look under 'Prescribable non HRT' to the left of this screen.
If you are getting bladder problems you can always use local oestrogen  (e.g.Vagifem) that would probably help with this - you don't need to use progesterone with local oestrogen.  DG x

[Hurdity]

Hi Night_Owl

Haven't heard from you for a while and so sorry to hear you are still having problems after all these years.

Re coming off - as you know I am still on it and all I can say is I tried to reduce from 50 mcg to 37.5 mcg last year and my flushes started to come back so I didn't bother to wait and went back up to 50 mcg. I do fully expect to be on oestrogen for as long a time as I can cope with it and if my general health does not suffer. I am hoping to continue until 70 if I can bear to keep on with the progesterone and if I live that long.

There can't be many who have such a severe reaction to such a small reduction in oestrogen as you do and I would agree a referral to an endocrinologist would be beneficial as there could be something else going on, which has not yet been detected.

What puzzles me is why you need such a high dose of progesterone for such a low dose of oestrogen - but I remember your reasons, and wonder if this might have changed now that you are probably post-menopausal and therefore your lining won't thicken so much? How has your lining been on this regime? As you may remember I now take Utrogestan 200 mg 12 days per 6-8 weeks v route, but this is for 50 mcg oestrogen.

One thing I can't remember if we've discussed in the past but my GP has given me some norethisterone tablets which she recommends I take once a year in case my lining thickens on the Utrogestan (it thickened last year but probably due to my cycle). I haven't taken them yet because it gave me bad migraine when used on a patch,  but I wondered in your case whether, as it is such a powerful progestogen, whether you or your gynae have considered this? If you get bad side effects from the progesterone anyway, would they be worse on the norethisterone? If not you should be able to take this less often - although I gather that there can sometimes be more cramping on the withdrawal if the lining has thickened.

I am sure we will have talked about this at length a few years back, but I wondered if it was worth revisiting - to minimise the progesterone time?

 

Hurdity xx

[Night_Owl]

Thanks for your comments ladies.

My brain is poggled today so this will sound a bit garbled.

Hurdity, at last scan, endo had increased slightly at 6mm.  As you may recall, the reason for the high prog : estrogen ratio is because in the past I developed 10mm v.quickly when re-starting after a break, albeit on a low dose - and had to take two courses of prog in quick succession - assume the meno clinic are wary of this previous occurrence.  As I recall, I was v.ill on norethisterone and really wouldn't want to touch it.

Unfortunately I don't tolerate meds well in general and that includes ADs - I've tried quite a few in the past including Citalopran - they all made me feel wretched and worse.  At next meno clinic appointment in August, I will see if there are any other options I can explore.

I'm difficult to treat as in general my bod doesn't accept meds readily.

I think it's just my luck to get such an extreme withdrawal reaction from a small dose - must be so highly sensitive to fluctuations.

My mother is terminally ill with multiple health issues including lung fibrosis from Rheumatoid Arthritis, so it's likely I have a predisposition to auto immune conditions.  I think the stress of her worsening condition is impacting.

As an aside, went for an eye test yesterday and told the optician about my dry eyes (then mentioned dry mouth) she recommended a GP test for Sjorgrens Syndrome.

I'm going to stop now as I sound like a hypochondriac!

It is difficult to work out where meno ends and other issues begin.

Maybe I would fare better in time with HRT withdrawal.  It always reverts back to the prog problem.  I seem to go round in circles!  It's good to hear that others have come off and stayed off.

Thanks for listening.


Night_Owl
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[Hurdity]

Hi again Night_Owl

Yes I do remember about your endo thickening and wondered if it was still an issue.

So sorry to hear about your mother too and of course that will be affecting you.

I don't think there is anything I can say to help - except that in your position I would seriously consider a hysterectomy at this point - after several years of suffering, which I know is not ideal and quite extreme but sounds as though it could improve your well-being overall, so that you didn't feel so ill on the prog and then not have to withdraw from the oestrogen. I am sure this will have been suggested by your gynae ?

Take care 

Hurdity  x

[Night_Owl]

Thanks for your thoughts.

It's weird how on ultra low dose I still seem to get some endo thickening.  The womb estrogen receptors seem to pick up on it.

Many times I've thought about hyster - meno docs have said there is no guarantee I will feel better.  I may but then I may not.  I could feel worse and for some women it can make migraine more severe and exacerbate existing bladder issues - then there's no going back.  Too much of a gamble?

Hurdity, it's good that you're settled on your regime and the migraines aren't too severe.  You found your tolerable solution.  Long may it continue.  Does your GP offer a yearly endo scan?

Stellajane, I so agree with your theory.  I will never stop questioning why some women have less sensitive biochemistry and their bodies can cope with changing hormones.  How can the female form vary so much?!  I am the same - my body doesn't like change of any sort - or medications - and usually responds immediately and angrily.  For example, when I first started on this long road searching for a tolerable HRT, the first I tried was Elleste Duet - within a few days I went up two dress sizes and none of my clothes fitted me.  My GP at the time was surprised and said, "most women are fine with it".  On Femoston I nearly passed out at work and had to be sent home in a taxi!  Again the GP said the same thing.   When I was taking nothing but Vagifem (the discontinued higher dose) I experienced breakthrough bleeds then a major bleed and ended up having a biopsy.

I guess we are both a tad disappointed with failing to stop HRT - again.  After a month without estrogen, my OH said I was behaving like a junkie on withdrawal.  Maybe try at another time ... later on in the journey.  I will report back meno clinic recommendation(s) after my next appointment mid-August.

SJ, how often are you planning to use the dreaded Utrogestan?


Night_Owl
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[Rowan]

My advice to any woman is to never have a hysterectomy unless it is absolutely necessary, you could be swopping one lot of problems for 

another, even if its just the removal of the uterus.

[CLKD]

  ………. so much for 'within normal limits' 

Sorry to hear about your Mum's ongoing problems.  Do you get to see her at all? This of course will impact on how you feel!  One more stressor on top of the hormone problems.

[Night_Owl]

Silverlady - true, hyster is too much of a gamble - and I could end up worse and then what.

Migraine complicates further all of my hormone imbalance issues.

SJ - I feel the same that I'll never get over this - and find balance.  So disappointed that 8 years down the line my body hasn't managed to sort itself out.  I only have to see the box of Utro to give me the grumps! 

I so need to be well - as I have a lot to deal with right now with my elderly parents.

CLKD - mum is terminally ill with lung fibrosis and the stress is massive.  I spend three days every week with my parents (65 miles away from where I live) - dad had a double by-pass and valve replacement earlier in January then developed complications, long story.  He is my mum's carer - and me.  Between us we are muddling through.  They are now receiving help from a community matron and the respiratory consultant has referred mum for Macmillan nurse care, a hospice doctor visited her last week, which was v.upsetting.  It's devastating to see her deteriorating and the breathlessness getting worse - it breaks my heart when she says how frightened she feels and my attempted words of comfort seem so lame - I can't imagine how awful it is for her - she is slowly suffocating.  It's a vile hideous disease.  We all have to face these inevitable situations in life, I'm trying to just get on with it, keep practical and not look too far ahead - but it's so so tough.  I hope to call in all the professional/medical support I can get to get help her/us through this.


Night_Owl
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[Night_Owl]

Thanks SJ for sympathies.  I think my mum's illness and the aftermath of dad's heart op is taking its toll, possibly the stress is making my hair loss worse.  On top of everything else, I get so anxious about driving nowadays, particularly on the M25 - and being away from my partner for 3 days every week.  But they need help so it has to be done.

I used Oestrogel for about a year, unfortunately it made the migraines much worse due to the way I was absorbing it, even in equal divided doses I got peaks and troughs, and the clinic decided patches were better for consistency.  All the time it's  battling with trying to treat migraine as well as meno symptoms.   

Only on the tiny dose of less than half 25 Estraderm patch and twice yearly scans will the clinic allow me to take Utro 100 every 6 weeks.  If I increase estrogen then I would have to lessen the gap, and increase to Utro 200.  I do prefer not having any withdrawal bleed as is the case on this low dose regime - in the past on higher estrogen I had bad period type pain on withdrawal of prog.  The clinic are strict with their instructions - told that it's not now that I will develop womb cancer if I don't take enough prog, but years down the line.  Hmm. 

Blimey, reading over this, I sound like such a problem case and 'difficult to treat' - I'll shut up now! - thanks for listening.

Night_Owl
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