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Author Topic: Tibolone withdrawal  (Read 7118 times)

KiltedCupid

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Re: Tibolone withdrawal
« Reply #15 on: October 10, 2019, 07:59:47 PM »

That's difficult for you. There should be more options for women who don't do well on bio-dentical hormones like very low dose synthetic hormones. And women should be able to make there own choice. But that's different discussion all together.

Yes, I entirely agree.
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suzysunday

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Re: Tibolone withdrawal
« Reply #16 on: October 10, 2019, 08:44:31 PM »

Tibolone caused  endometrium thickening with me to 5mm and bleeding.  I  was on it 18 months.  The bleeding stopped within 24 hours of stopping it and the thickening normalised in a few  months.  Scared me to death at the time.  That was  a year ago. OK now.
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KiltedCupid

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Re: Tibolone withdrawal
« Reply #17 on: October 11, 2019, 09:22:09 AM »

Tibolone caused  endometrium thickening with me to 5mm and bleeding.  I  was on it 18 months.  The bleeding stopped within 24 hours of stopping it and the thickening normalised in a few  months.  Scared me to death at the time.  That was  a year ago. OK now.

Suzysunday - I always understood that up to 5mm was acceptable on hrt. Anything over is cause for concern.
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suzysunday

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Re: Tibolone withdrawal
« Reply #18 on: October 11, 2019, 11:05:23 AM »

I thought it was maybe 4 and half mm, not sure. Think it was borderline. They certainly took it seriously, hysteroscopy and all.
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Hurdity

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Re: Tibolone withdrawal
« Reply #19 on: October 11, 2019, 04:56:49 PM »

Hi suzysunday - yes I remember your situation. 5 mm is only just over the limit but in your case this was sufficient to cause bleeding. It may well have resolved but with an HRT like that you would probably have had to take extra progestogen probably - to stop the bleeding - in order to continue with it - which kind of defeats the object of that particular type?

Hi Kilted Cupid – I know you didn't advocate anyone trying it but I was just sounding a note of caution as this forum is read by hundreds of women every day and the fact that your consultant said it was OK may suggest that it is in fact OK or within normal parameters of prescription – which it isn't!

To anyone else reading this – Tibolone isn't like normal HRT where you have oestrogen and a progestogen – it is a compound which breaks down into other compounds which broadly act like oestrogens progestogens and androgens. Although the mode of action appears more or less balanced on the dose available - 2.5 mg - changing this by addition of more oestrogen will upset the balance and could cause endometrial hyperplasia (abnormal thickening) and then bleeding etc.

The link to the info I read a few years back (showing endometrial thickening as side effect for some women) which decided me against Tibolone does not exist any more, and I think that document is no longer on the web. Nevertheless as I understand ( and some other data report this) that there is a small risk of endometrial thickening on Tibolone so personally I would not want to add any extra oestrogen. If your gynae or doc has advised this and is prepared to scan you regularly then that's great!

Also re doubling the dose – I could find the paper on this – and the results (from short term trials) showed little difference in response (in terms of flushes etc) between 2.5 mg and double dose 5 mg but the latter was associated with more bleeding hence the 2.5 mg dose was considered the best one. https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1111/j.1471-0528.2002.02020.x

Like I said gynaes recommend all sorts of treatments to private patients who are paying and can therefore be monitored for any non-standard treatment - and pay for this individualised service.

As for Studd – of course he is very eminent – but - well – as you are new you won't know that his regime has been raised many times and caused much controversy.  I know it's not the subject of this thread – and I only put it in as an example of a (private) gynae recommending something that is not standard and maybe questionable re endometrial safety for all women (according to his own research!). Suffice to say there is no question that the 7 day prog regime as a general principle is too low to be used as standard by all women. In fact from what some women have recently reported I think he now prescribes 10 days – due to adverse effect on endometrium from some of his patients (I recall reported on here?).  Individualised regimes are great for those who are prog intolerant or suffer from reproductive depression but need to be supervised.

Those without extra funds rely on NHS treatments and the research that has gone into them – even though we dearly wish for more research, greater variety and individualisation!

Hurdity x

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KiltedCupid

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Re: Tibolone withdrawal
« Reply #20 on: October 11, 2019, 05:13:18 PM »

Macca65 - I hope your withdrawal isn't proving too problematic. Good if you could post your experience for any others considering stopping.
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Macca65

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Re: Tibolone withdrawal
« Reply #21 on: October 14, 2019, 09:35:35 PM »

Well kilted Cupid,
So far so good, I stopped my tibolone 4 days ago and feel ok , but it's probably still very much in my system!
I'm taking fluoxetine already for my mood so this will probably help.
I'll keep you all posted.
I'm going to ask my GP to refer me back to the menopause clinic and see what my options are.
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Alicess

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Re: Tibolone withdrawal
« Reply #22 on: October 15, 2019, 05:05:58 AM »

Hi Macca65,  glad to hear you're still feeling ok 🌷
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suzysunday

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Re: Tibolone withdrawal
« Reply #23 on: October 15, 2019, 11:46:40 AM »

Yes all the best macca,.  Hope you continue to feel better.  It's tough getting through it all. X
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KiltedCupid

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Re: Tibolone withdrawal
« Reply #24 on: October 15, 2019, 03:45:40 PM »

Well kilted Cupid,
So far so good, I stopped my tibolone 4 days ago and feel ok , but it's probably still very much in my system!
I'm taking fluoxetine already for my mood so this will probably help.
I'll keep you all posted.
I'm going to ask my GP to refer me back to the menopause clinic and see what my options are.

Great news. I didn't have any problems, I hope it's the same for you.
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KiltedCupid

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Re: Tibolone withdrawal
« Reply #25 on: October 18, 2019, 07:58:39 PM »

Hi Macca - think I may have just posted on your prog intolerance thread and maybe that's why you've stopped Tib? I tried Tib for the same reasons, without success.

How are you feeling coming off it?
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Macca65

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Re: Tibolone withdrawal
« Reply #26 on: October 25, 2019, 01:41:20 PM »

Hello again girls,
I've now had two week without tibolone and feel surprisingly ok.
The night sweats aren't as bad as I thought they would be and they don't wake me up👍🏼
My main problem is lack of a memory!!
A gold fish would look like einstein compared to me!
Think it's possibly that I'm not sleeping too well , it's very broken and I'm wide awake in the middle of the night.
Hope this will pass .
Tried to get some indivina from the docs and can't get it anywhere,
So looks like I'm gonna stick with taking nothing HRT wise.
Wish me luck.
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KiltedCupid

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Re: Tibolone withdrawal
« Reply #27 on: October 25, 2019, 07:44:37 PM »

Good to hear it's going well Macca, suppose it's just wait and see now. Have you asked your gp what you're options are?
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Macca65

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Re: Tibolone withdrawal
« Reply #28 on: October 26, 2019, 12:41:38 PM »

Yes but she hadn't a clue!🙄
I've been referred back to menopause clinic so left in limbo until then as my GP said I've tried everything and she doesn't know what to do next!😂
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