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Author Topic: Tiolone??  (Read 6381 times)

Chi chi

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Tiolone??
« on: October 31, 2016, 10:11:56 AM »

Last time I posted I had decided to come off HRT as I didn't think it was actually improving anything, I have since gone back on it  ::) i think I lasted maybe a couple of weeks without?
I'm now wondering if Tibolone would be an option for me? As some may know I've been on oestrogel (4 pumps) testosterone and utrogestan for approx 3 yrs now with very little change in symptoms  :-\
I've tried different birth control pills none of which helped and some actually made things worse!
I feel like I'm no further forward with HRT and just can't tolerate the prog part.
I'm prob clutching at straws but at this moment in time I'm willing to try anything!
I'm 42 and a smoker my main symptoms are low moods, anxiety, aches and pains, loss of libido, dryness down below, practically everything BUT the flushes.
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Mary G

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Re: Tiolone??
« Reply #1 on: October 31, 2016, 11:10:18 AM »

Chi chi, I would say that tibolone is definitely worth a try.  It has a steroid type hormone which apparently produces some testosterone.  A doctor I met in Spain thinks it's great and it is widely used there.  I haven't tried it myself because of my migraines but I have been tempted.

One added bonus, it is bleed free!  So give it a try and please report back with you findings. 

Good luck!
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Chi chi

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Re: Tiolone??
« Reply #2 on: October 31, 2016, 11:15:45 AM »

Thanks MaryG,
I just wonder how is it "different" to regular HRT? How can it help if bio HRT hasn't?
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Mary G

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Re: Tiolone??
« Reply #3 on: October 31, 2016, 11:30:14 AM »

Chi chi, perhaps this product will succeed where others have failed because if its steroid content.  I'm no expert but I believe tibolone is different from other types of HRT so you have nothing to lose by trying it. Many women take it for years.

Just out of interest, do you think you other regime would have worked if you hadn't had to take the dreaded progesterone? 
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ardee

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Re: Tiolone??
« Reply #4 on: October 31, 2016, 11:42:45 AM »

I've changed to Tibolone 2 weeks ago and feel a lot better.  Try it and see.  You can always go back if it doesn't help.
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Dancinggirl

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Re: Tiolone??
« Reply #5 on: October 31, 2016, 11:58:23 AM »

Chi Chi - Tibolone works in a very different way to normal HRT and, when I tried it, I found it great - my only real problem was the acne - I already suffer with spots (even now) so unfortunately the Tibolone made it far worse.  EVen Utrogestan made me come up in rashes on my face!!! Tibolone will be well worth trying - it worked great for the flushes within a few days and I slept like a baby at night - felt generally good apart from the horrible spots. DG x
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Chi chi

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Re: Tiolone??
« Reply #6 on: October 31, 2016, 12:54:27 PM »

Thanks everyone  :) I just wasn't sure if it would be a possibility for me as I don't do well on any kind of prog (even the Mirena) and as its synthetic I thought it would be the same as birth control pills which I can't take as I'm a smoker.
MaryG- I'm not sure as for most of the time I've been on HRT I've only had a few goes with the utrogestan which have left me feeling low for months after!  :-\
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Dancinggirl

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Re: Tiolone??
« Reply #7 on: October 31, 2016, 03:55:38 PM »

Chi Chi - Tibolone isn't a progesterone so could be a good things to try.  DG x
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Dawncam

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Re: Tiolone??
« Reply #8 on: October 31, 2016, 04:16:43 PM »

Hi Chi Chi - I was on hols with a group of women last year and one of them was on Tibolone - she absolutely raved about it, said she'd never felt better. I'm really interested in this as I too have had the gel, T, utrogestan combo for over a year and apart from moving to equivalent dose patches, I'm still using the same protocol with very meh! results. Like you, I don't have the daytime flushes, but everything else, in fact, joint pain is worse!

Please report your findings if you decide on this route.

Dxx
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Chi chi

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Re: Tiolone??
« Reply #9 on: October 31, 2016, 04:57:54 PM »

I've just read that it's only for woman who have been through the menopause?? Is this right? :-\
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Otes73

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Re: Tiolone??
« Reply #10 on: October 31, 2016, 05:20:30 PM »

I had 6 months on Tibolone and felt great other than headaches which is why I stopped. I was gutted as really improved my energy levels and hot flushes etc. I had to take it in the morning otherwise it did keep me awake. I've now started on oestrogel and no headaches but definitely doesn't give me the get up and go Tibolone did!
I've started on testosterone gel yesterday so hoping this will give me a boost!
My understanding of Tibolone was it was for after hysterectomy or post menopause but I could be wrong?!
Definitely worth a go if you're offered it though.
X
« Last Edit: October 31, 2016, 05:25:17 PM by Otes73 »
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Hurdity

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Re: Tiolone??
« Reply #11 on: October 31, 2016, 05:47:46 PM »

Yes Chi chi as Otes73 confirms, it is chiefly for post-menopausal women as it is a no-bleed HRT. There is another thread on this just started by Sooze in Personal Experiences:

http://www.menopausematters.co.uk/forum/index.php/topic,33626.0.html

Here is the product info on it:
http://www.medicines.org.uk/emc/medicine/8552

This is taken from the mode of action section:

"Following oral administration, tibolone is rapidly metabolised into three compounds, which all contribute to the pharmacodynamic profile of Livial. Two of the metabolites (3α-OH-tibolone and 3β-OH-tibolone) have oestrogenic-like activities, whereas the third metabolite (Δ4-isomer of tibolone) has progestogenic and androgenic-like activities.
Livial substitutes for the loss of oestrogen production in postmenopausal women and alleviates menopausal symptoms. Livial prevents bone loss following menopause or ovariectomy
."

One side effect is thickening of the uterus.

From the same document:

"The available data from randomised controlled trials are conflicting; however, observational studies have consistently shown that women who are prescribed Livial in normal clinical practice are at an increased risk of having endometrial cancer diagnosed (see also section 4.8). In these studies risk increased with increasing duration of use. Tibolone increases endometrial wall thickness, as measured by transvaginal ultrasound."

I don't think it is suitable for you as you are still peri-menopausal?.

Hurdity x
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Dawncam

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Re: Tiolone??
« Reply #12 on: October 31, 2016, 06:55:20 PM »

Oh what a pity Hurdity - I thought it provided progestogenic effects too. Apparently not. Does that mean you'd have to take additional prog?

Dxx
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Chi chi

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Re: Tiolone??
« Reply #13 on: October 31, 2016, 07:56:14 PM »

Just my luck!  ::) :-\
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Mary G

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Re: Tiolone??
« Reply #14 on: October 31, 2016, 08:35:06 PM »

Dawncam, you don't need to take progesterone with Livial (tibolone).  Many women take it for years without having any problems so don't be scared off if you feel like giving it a try.  My gynaecologist has mentioned that she has quite a few patients who take it. 

Chi chi, where are you in the menopause?  Is it worth running the tibolone idea past a specialist anyway just to get their opinion?  You are a patient of Professor Studd I think?  Because you can't take any progesterone at all and have reached the end of the road on this, why not at least get some professional advice and if they say no, you haven't lost anything by asking. 
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