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[Nairn]

Hi

I am off HRT for 6 weeks for some specialist blood tests to be done and 10 days in feeling absolutely terrible - the mood swings are making me feel like a crazy person unable to cope with routine stuff I would usually take in my stride, and this morning at work has been especially bad -in tears most of the day and feels uncontrollable.  Anyone any idea how long this might last  - really grateful for suggestions and any help - I was on Kilofem 2mg.  Hoping its just the 'cold turkey' drop in hormones but feeling terrible today

[Nairn]

Hi Birdy

Its for very specialized thyroid tests as directed by a endro consultant -  apparently HRT influences significantly influences thyroid results and mine are borderline so we need to know if its underactive - and yes it is hell, and I suspect more so to come.  The dryness in intimate areas has returned with a vengeance, which is going nicely with the emotional state!

[Nairn]

Thanks Birdy, actually that's a good point, I'll ask.  However this is one of the top people in the U.K., and he is very clear  - it's going to be hell but I really want the answer so I'm going to stick it out.  However the topical is def worth investigating  - I'll let you know what comes back.

[Nairn]

Hi

It's 6 weeks, and apparently it takes that long for the body to completely rid itself of the hormones (for the purpose of these tests)  - expert opinion.  I've actually just asked him about the topical stuff so I'll let you know.  Been using everything I can think of for the last 10 days and it's not helped!

[Maryjane]

Also stopping HRT cold turkey is known that this should not be done & can cause more problems, should be a gradual process as just stopping is bad practice.

Could also put more strain on your thyroid I would assume due to the over all response to the body & the thyroid doesn't like stress just like anywhere else.

[Nairn]

Hi all

Thought I would update on how the stopping of oral HRT has been going  - it's 8 weeks now.  I'm 52, been on high oestrogen HRT for 8 years and before that contraceptive pill since I was in my 20s to deal with terrible periods and extreme vaginal dryness.  Initially I was on Femonston 2/10 and then due to thickened endo lining I was moved onto Kilofem 2mg as I seemed to need very high oestrogen.  I had to stop due to needing some very specialist endocrinology tests and it takes 6 weeks for HRT to metabolise out of your system.  At the time it was a huge step and I was absolutely dreading it. Kilofem helped with some symptoms such as hot flushes and vaginal dryness but it also made me bleed all the time - to the point where I was worried about where I sat & leaving marks.  I tried most other preps including patches, but unfortunately they did not work for me.

Initially it was very tough going - felt like I had been hit by a truck, and was VERY emotional and up/down, however has the weeks have gone on I have very slowly felt my body coming back to me, and feeling more like ‘me'.  I have a very demanding job and I still had to be able to go to work and function at a high level, so the first few weeks were truly awful.  Initial problems with extreme vaginal dryness, so I have been using vagifem and yes OB plus sea buckthorn capsules (Victoriahealth.com)  and things are returning to normal slowly, but the big difference has been the water my body has been shedding.  I had not realised how bloated I had become, and much to my surprise I have a lot more energy than whilst on Kilofem.  I used to be a keen walker but had pretty much given up as I was so knackered all the time and my joints/legs were super sore - and that is improving massively since stopping the  Kilofem.  My legs and ankles and most other body parts, which had been super swollen/painful have now gone back to normal size, making me realise how bloated everything had been, and I now want to go walking and do exercise, which is a big change, and so far without making any major changes I have lost 8lbs which is great as I have got much bigger the past few years, with not much idea of why! I have also had a lot of stress at work and home with big family issues and seem to be coping better than before, although still a bit fuzzy headed.

The major downside has been the return of nuclear hot flushes with a vengeance  - worse than ever before and dry skin.  Also my hair, which was lovely, thick and glossy on HRT has gone a bit duller.  Sleep is still not great, compounded by the hotness.  I can live with most of it but if anyone has any advice for the hot flushes/improved sleep please do let me know  - tried the usual things.  Libido is still low, but then it has been on HRT for years.

So, I am still not sure if I am going to go back onto oral HRT (and never thought I would ever ever say that) but if I do it won't be Kilofem as I can see now it did not suit me, and I think had I not had to stop I would still be struggling on, so in a weird way it has been a good if very challenging transition.  The tests have now been done, so once I get the results then I can make a decision, however currently I'm not sure if I will go back onto full HRT.

Anyway, I hope this is helpful reading and appreciative of any comments - and suggestions for the nuclear hot flushes and sleep!

[Wrensong]

Hi Nairncat, sorry to say as world's worst sleeper also struggling with these probs I can't help much with advice on coping with overheating & insomnia, other than the very basic using the lightest bedding you can find (I have Fogarty 1-tog duvets from Dunelm), no, or thin cotton night clothes, window open, no alcohol, no heavy evening meals & no exercising within 4 hours of going to bed.  I also keep a pile of refrigerated HWBs beside the bed & pull one in to cool me until my body heat makes it too warm!
 
What I would say is that I have also noticed the profound fluid retention on HRT & that it's the oestradiol component that seems to cause this.  So if you were on a high oestrogen combi that all makes sense.  I'm currently trying a new regime well postmenopause after 15 months off HRT but I find without HRT I pee for England & it's a relief not to have that horrible sluggishness that retaining too much fluid brings.  I'm very skinny so it's not flesh gain that causes those sensations in me. 

If your Endo tests included thyroid (I'm hypothyroid), a thyroid condition may also have a bearing on your reaction to HRT & the fluid retention.

I would say that during the progestogen phase (MPA) of my sequi regime I notice I pass more water, though not enough to redress the gain on the oestradiol alone & on the pernicious Utrogestan (that I cannot tolerate) this diuretic side effect was very marked.  So if you find you need to go back on HRT, it would perhaps be worth trying a different regime to see whether you can find one that gives a better balance & therefore less fluid retention.

I wish you well with it whatever you decide.
Wx

Later edit: sorry Nairncat - I had not seen your earlier posts - I now see the tests were thyroid related.  Please let us know how you get on when you have the results.  Maybe PM me if it might help to chat about any thyroid results.

[CindyC]

Have a look at essential oils for sleep, namely Lavender Peace, Vetiver or Cedarwood.  I definitely found they help me with sleep, just used diluted with fractionated coconut oil and rubbed on bottom of feet when I go to bed.  Research how to use them properly though.

[Hurdity]

I would say that the bloating may be caused either by the fact you are taking oral HRT which iI have read somewhere may contribute more to bloating due to metabolic by products from the liver, but also because of the progestogen. I have read many women talk about this side effect on conti HRt especially. The aching and lack of energy all point to the progestogen.

In your position - aside from thyroid which - if it is not functioning optimally needs sorting out first definitely as Wrensong and stellajane say - maybe if you return to HRT consider a transdermal (patch or gel) with separate progestogen and maybe on a cycle if you can bear it? You are still so young to be stopping HRT and suffering with hot flushes with maybe years to go yet. What are nuclear hot flushes by the way?

Do post your thyroid results if they are borderline - missed that - or start another thread as there are several on here in that position and would be interesting to know and discuss, if you want to that is?

Hurdity x

[Nairn]

Hi All

Thanks for the advice, it's really helpful.  In term of the Thyroid,  my TSH tests were just over 2, my it's my T4 which was very low/borderline and my T3 was super high (odd combo) so they needed to get some specialist advice - and the view from both the local endo and the specialist endo was that HRT does influence thyroid levels so be interesting to see what the outcome is.  I felt absolutely awful on Kilofem, and before that another conti so perhaps I do struggle with the combo of hormones.

To answer your question Hurdity, the hot flushes are hotter than I've ever had before, hence the nuclear naming of them - and they seem to be more frequent.  Patches don't seem to work well on me at all, I find them very uncomfortable and I hate having anything stuck onto my skin, plus I seemed to struggle to absorb them properly.   My lovely GP has given me a prescription for Femonston 2/10 again, which seemed to be the best of the ones I have tried, although it would make me bleed again, but she has asked me to hold off until we get the tests back.  I want to get the blood results back as they are also testing all my hormones & a few other things, so I'm really hoping to get some answers, and then hopefully a way forward, based on evidence rather than best guesses by myself and the GP.   Meantime I am continuing to use vagifem for the dryness, although nothing is helping the flushes.

Welcome any more thoughts/suggestions

[Sammiejane]

Hi ladies

Does Utrogestan or progesterone make u urinate more ! Because I find this when taking Utrogestan but then on estrogen I find I can go more some days and then other days normal then other days I feel like I'm not emptying !

Also those ladies that were on combined pill before changing over to hrt did you find the combined pill better or hrt ?

[Hurdity]

I'm the same as stellajane - pee more on utrogestan especially at night and vagifem also irritates my bladder too but I still use it!

Hurdity x

[Wrensong]

Nairncat, I second Stellajane's comment about your thyroid results being unusual & will be very interested to hear the outcome.

Hurdity, yes it's often said that progesterone/progestogens can cause bloating, but given their diuretic effect I'd thought this was more likely due to their muscle-relaxant properties slowing bowel function?  Though meds with diuretic properties can also adversely affect bowel function, of course!  But Nairncat commented that she had noticed a marked loss of fluid since stopping HRT & attributed her bloating issues to fluid retention.

I do find oestrogen causes me to retain fluid, but that could also be due to its effects on thyroid levels in my case.  Despite being on transdermal, with several patch combos I've had to increase my thyroid meds to compensate for HRT's effects on thyroid binding globulin, which when raised under the influence of exogenous oestrogen, reduces the amount of active thyroid hormone available in the body.  One consequence of this can be fluid retention (another, more sluggish bowel function - either leading to bloating).  It's usually said only to be oral oestrogen that has this effect on TBG, but bloods show transdermal does also lower my thyroid hormone levels.  So before knowing her high T3 result, I'd reasoned that if Nairncat had hypothyroidism developing, the oestrogen in her HRT might have been lowering her available thyroid hormone.  But with Nairncat's low T4 combined with raised T3 level (& confusingly optimal TSH), I'm not sure what's going on.  Her expert Endo's opinion will be important for Nairncat & very interesting to those of us with thyroid probs.

Nairncat - just a thought in retrospect - a high T3 or T4, as in hyperthyroidism, causes patients to be very hot, so that makes me think of your "nuclear" flushes/night sweats, but with overactivity/hyperthyroidism there's usually a very low/suppressed TSH as well & yours isn't.  Please don't worry too much about the thyroid issue though, it will be possible to get you right under the care of a good Endo.

Gosh, how complicated the endocrine system is!
Wx

[Sammiejane]

Hi nairncat

Did u find the contraceptive helped with vaginal dryness ? What pill were u on ?

[Nairn]

Hi Sammiejane

It did, but still was problematic.  I was on cerazette, but the only thing which really sorted out the dryness was the Kilofem, however that was worse in so many other ways !