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[renee]

Hi ladies

I started Tibolone 5 weeks ago, Im getting spot bleeding which I know is initially normal but the other side effects Im not sure about and wondered if any ladies on here on Tibolone can relate....leg sweats, sleep anxiety, bloating and the weirdest dreams!!

Im also taking levothyroxine and fluoxetine.

Thanks ladies xx

[Sooze]

Hi,
If you go to  https://www.menopausematters.co.uk/forum/index.php/topic,33626.msg539296.html#msg539296
You'll find the diary I started last October, actually need to post an update while I think of it as not been updated since the beginning of May.

There have been a number of others who have tried it too but some have not managed to continue due to various side effects, or they have found that they have not had the relief of symptoms that I have had. 

I went on it having only been on Vagifem for a few years, and I don't take any other medication, so have no idea whether it's efficiency can be reduced due to interaction with other medication.  I'm sure others have views/opinions based on their experiences.

If you search for Tibolone and you should find lots of feedback.
HTH,
S

[renee]

Hi Sooze

Iv had a good read through all the comments on your link, helpful and suppportive advice given. Cant see anything on leg sweats or bad dreams.

Might phone doc on Monday to get a bit of advice, I space my doses of thyroxine with hrt and prozac. Some nights my bed is soaking with the leg sweats and my dreams wake me feeling anxious.

I also feel a bit hungover but no alcohol involved (pity) hee hee.

Im bleeding again today so ye think I need a bit of doctor to patient advice!! Again haha

Thanks anyway and hope all is well witj you xx

[Annie0710]

THe dreams could be the progesterone effect that Tibolone gives

[renee]

Could be Annie...I phoned my doc today but she's on her holibobs.

I woke after a 12 hours sleep and felt so tired and sweaty!!

I'm not sure if it's the HRT or if it's causing my Levothyroxine giving me side effects. Iv been on thyroxine for 11 years with no probs.

Bit confused....but maybe it is the Tibolone. 😅

[Annie0710]

I Started off really well on it but then I was getting my typical high oestrogen effects, wired, racing heart, jittery etc so halved the tablet, but then I got the aching joints, night sweats etc 

[renee]

Yes Anne I'm getting the racing heart sometimes through the night....

That's a pity that no matter what strength your taking, your having some kind of side effects. So, are you still taking Tibolone? X

[Annie0710]

No i couldn't tolerate the aching muscles and joint pain, so started on oestrogel and Tostran

[Pollyanna]

I've just had a chat with my GP about trying Tibolone.   I'm 56 and been on estradot for 9 or so years...I'll admit that the past year I've dabbled in expensive compounded HRT via the Gluck clinic in London.   Way too expensive to keep going back for consultations just in order to tweak the prescription.  As Estradot is bio identical anyway and the lozenges I was prescribed made me feel awful, I decided to save money and explore other things instead. 

Cut to the chase..... I'm going to try Tibolone as, if it doesn't suit me I can always go back to the estradot.   I'd eventually settled on 25 mcg as I'm very slim and have a low BMI so any higher than 25 made me feel like I could sleep, standing up!  In fact as I write this I'm fighting sleep. 

We're all different so it's really not ideal to compare with anyone else (as with anything in life).  I'm interested in seeing how the Tibolone effects my energy levels as I've always had good energy but the oestrogen has zapped me a bit.  Yes, it's a balancing act for all of us, isn't it?    I've also got very dry eyes when I try higher doses of oestrogen (a common side effect).   

I appreciate that the tiny amount of testosterone in Tibolone (which I need for energy) may increase the bit of chin hair I have.. urgh!.... but as my GP said... 'if you're not happy on it, then you can always go back to the estradot'.     

I do remember when I introduced progesterone last year, my hair was in fantastic condition.   Hahah... I was seriously depressed though.    Progesterone is a funny old hormone.   My hair sheds a lot now.  It never seems to grown past a certain length.  It is coloured and I do take care of it but it would be lovely for it not to fall out as much.   Yes, I'm sure there are many others out there nodding in agreement.   

I guess the deal breakers with Tibolone (for me), would be 'depression, hair loss/growth on face, or noticeable weight gain.    I'll admit that in the research I've done this past weekend (looking at medical research papers, not chat sites), it would appear that yet again, it's a split as to people who love or hate it.   Much like Marmite! 

I was certain that i would have to wean myself off of the estradot, but my GP said that I should just give myself a few clear days from my patches and then start the Tibolone.     It's awful isn't it... waiting for something to happen?   

Has anyone noticed increased chin hair growth?  Or, increased hair growth on head? 

[Annie0710]

Tibolone is notorious for @ 10lb weight gain

I had energy on it and NO facial hair.  What was remarkable for me was orgasms, they returned and were great but no increase in libido

[Pollyanna]

Urgh!.....weight gain.

It would seem that most drugs do this. HRT, or not.
When I increased my oestrogen patch to, just 37.5 mcg, I had awful fluid retention, puffy face and feet. Could do my jeans up.

But then, not everyone gets this...apparently.

I'm keeping fingers crossed. X

[Sooze]

I've lost maybe 5lbs but I've gone from almost no exercise pre Tibolone to 4 times/week almost every week and look like I've lost more because I'm getting more toned.  I've lost a lot of the 'sweet' cravings I used to get and am eating healthier too. 

I had no energy for exercise before - my routine was work - eat tea - collapse in a heap.  Now I'm like I was 10+yrs ago, so much energy.

Re hair growth, I've luckily never had a 'chin hair issue' and my body hair has always been sparse & fine, even more so since peri.  Again I would say what hair I do have is growing a bit quicker, more like 10yrs ago, but I'm not getting any new sproutage.

I think I've been one of the lucky ones who's won the 'Tibolone lottery' with the combination of good effects vs side effects to be honest.

HTH,
S

[Pollyanna]

That's great news Sooze.   Ha, I found myself tentatively taking 1/2 Tibolone just now, but perhaps I should take the full one.  I think I'd read so many horror stories about the drug, even though I know logically that we all respond differently.

Your experience is inspiring and of course it makes entire sense that if Tibolone gives you more energy and motivates you to want to exercise more then you will keep weight down and tone up.   For the past few years, apart from long bike rides, I had lost interest in exercise... and most other things.   I know it was to do with my mood and menopause as prior to that I had always been into fitness. 

You don't mention your age and, did you have a hysterectomy also?   

What side effects have you had? 

Such great news that you're happy on it.  I'm' looking forward to some positive change with this.  x

[Pollyanna]

Thought I would post my experiences of this new HRT.  It's been so interesting reading Sooze's. 

Well, it's only Day 2 on 2.5mg, but already I have noticed some changes. I decided to take it in the morning but I found that last night, I wasn't able to sleep for ages.  Not exactly 'wired', but rather just 'awake'.  Consequently this morning, I was tired.  I'm thinking it's probably as simple as my body readjusting to it.

A noticeable (already) positive is that my face looks like it used to.   That sounds bizarre and I can't put my finger on what it is but I am convinced that I was sensitive to the oestrogen in the patches and found that my face would swell.  I'd also get itchy eyes and swollen glands.  All was checked out but considered to be an allergy to the yam.   

Not so good is that already, I'm struggling to get my jeans done up.  Belly very bloated.   Again though, I think this is just an adjustment thing.  i remember 9 years ago when I started on patches, I blew up and felt awful for a month or so. 

I get really distressed when I collect loads of hair from the shower every morning and my hair is breaking off quite badly, which i know most definitely is hormonal.   I'm hoping that the progesterone component of the Tibolone will help with that. 

Oh... ha.. also looking forward to (new and improved) libido coming back again. 

[Sooze]

Pollyanna,
No, not had any surgery and currently 53. Before starting Tibolone, Sept 2016, I'd been off systemic HRT since March 2012, and just on Vagifem. Looking back I think this was a mistake for me & I feel I've lost 4yrs + to the crap that is post meno. I'm so grateful for my amazing husband who put up with everything, not knowing things were going to get better again. And boy are they better