Tibolone stopped working

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Hi. I am 50 and have ben taking Tiboline since May 2015. The first few months it was brilliant. I could sleep better, no hot flashes or night sweats and libido was amazing. But the last 3 months things started changing. It seems that my body got used to it and I have bad insomnia again, night sweats are back , libido gone low. I am still taking it and hopping that it will work again. I did put on a stone in weight, lots of facial hair and in my legs too. My hair roots on my head have gone really curly . Has anyone experienced that ?

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34 Replies

  • Posted

    I would go back and discuss with your Doctor Sue...
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  • Posted

    Dear Sueli50:  Hi there, I am 70, have been off of Tibolone for 4 months

    now, but now that you speak of your hair going curly, I remembered that

    my hair got very wavey at first, then very curly........I thought it was because

    I had lost lots of weight, and then lost my hair in parts and then it grew back very very wavey and then curley.......I put it down to menopause,

    never thinking it could had of been the Livial, my hair was that way for

    about 3 or 4 years and then went back to being normal again.  I guess

    you could say it was the Livial.  I also got more fuzzy hair on my jawbone

    which I had to pluck out with twizzers every day, just a few, .......but I think

    this too is part of menopause and has nothing to do with hormone pill, I

    think some women who do not take hormones have this happen too.  I also

    have been diagnosed with breast cancer and have since gone off of Livial,

    but have discovered that there was a study done in 2009 where they have

    put woman on Livial, plus tamoxifen and raloxifen to "help prevent" breast

    cancer in old women.......Interesting.......I must ask my oncologist what she

    thinks about that.  Do you think that maybe you are forgetting to take

    Livial everyday and have skipped some days??  I did that some times

    and would start to spot a little blood and once I remembered to do it

    every day the spotting would go away.....anyways........what I want to say

    is that Livial has been wonderful for me, and I would suggest you stick it

    out........your libido will get better and hot flashes should go away......but

    if you are stressed out, you will get insomnia........I do not remember 

    Livial letting me sleep better........I wish you all the very best....G

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    • Posted

      Thanks for your reply. As I stated before my bleeding and spotting still continue on after 10mths. I have maybe one week with no spotting, sometimes 2 but then I have periods like bleeding very Painfull. This happened when I was taking Femoston , except that I had bleeding only once every month . I still have hot flashes several times during the night echo have keeps me awake and libido went back to non existent . I will definitely need to see the gynaecologist again.
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  • Posted

    Hi. I only stayed on livial 3 months after oophorectomy at 40 for those symptoms. In that time I put on 2 stone and my hair frizzled. I would say it did stop sweats and insomnia. I have now moved onto the gel that you rub on before bed and I feel much better tho I'm still stuck with weight not shifting even tho I'm on slimming world and being really good. I think maybe some of us are just going to suffer with this at menopause. I'd go back to your Gp and see what they suggest. Good luck
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    • Posted

      I am kind of thinking to stop taking Tibolone. It is not doing me any benefits at all. I am still having on off bleeding and hot flashes .
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    • Posted

      I sympathise. Hope, if you stop taking Tibolone, you find some other way to restore your androgens... For me, that was the reason to start taking it. Synapause worked well against the dyspareunia and hot flashes, but did nothing for my libido. By the way, I still hope that taking tibolone twice a day (125 mg with breakfast and another 125 mg at dinnertime) will do the trick, so i won't need to up my dose after all. The stuff wears off in 7 hours, so...
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  • Posted

    Hi. I've had the same experience and decided to up my dose (from 250 to 325 mg). Can't say if that will help, since i started to only a week ago, but maybe that's an idea for you too? Some persons will break down a substance in less time than others, so they'll need more in order to achieve the same result. For testosterone (the libido thing in tibolone) this is a known fact. Also, it takes some time for your body to counteract the tibolone, so after a few months, when it has reached its maximum effect, this effect dies down a bit. I suspect the facial hair that has grown won't be replaced by new hair either, unless you up your dose, since that too is an androgene effect.
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    • Posted

      Thanks for your reply. I take Renitidine for Reflux , an anti- acid like Omeprazole. I wonder if taking it is the cause of stopping the benefits of Tibolone . I still bleed and it is like a period , very Painfull . Hot flashes still present and night sweats all night long. I hardly sleep. I am going back to doctor. Please let me know it increasing the dosage worked for you.
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    • Posted

      Sueli50, Hi there, I also take the same pill that you take for

      my tummy, 2 times a day and it does not interfere with my

      Livial when I took it, have you checked to see if your Tibolone

      has not expired, and are you taking Livial (trademark), my doc

      insisted that I take Livial and to beware of other tiblone marks

      because he said sometimes quality control is not so good, but

      that was because I was in Central America.  I think you should

      go back to the doctor and see whats what........I only spotted if

      I forgot to take my dosage, but not like a full period and never

      painful.  Anyways ..........now I am off Livial and going for radiation

      treatment for cancer and all I hear is ..........here in the States

      they no longer give you HRT, and I reply like a broken record,

      "It was the best thing that happened to me to take Tiblone".....

      then they repeat that breast cancer in States is down because

      women don't take HRT that much.......then I read my favorite

      book on Suzanne Sommers (whom had breast cancer) and all

      the hormones she still is on in spite of cancer......so you really

      do not know whom to believe.......but definitely I would go back

      to my gynecologist and see why you are still bleeding?  All the

      best to you. G

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    • Posted

      Thank you again. You really helped me ! I did suspect it was the brand I am taking! When I started Tibolone I brought it from Brazil , a good laboratory and it worked brilliantly ! I had it for 5 months! Then my GP here in Uk prescribed me this one in a white box with no laboratory name etc. When I stopped to think about it , It is exactly the amount of time that my hot flashes came back!! I am calling my GP tomorrow and demand him to prescribe me the proper Livial. !!! I will let you know the outcome . Thanks again!
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    • Posted

      Glad to be of help Sueli50, my gynecologist was adamant about

      that, so I guess in some cases the quality control is not so good

      and probably had less Tiblone than was required.  In Central America there is a big price difference between Livial and the

      generic Tiblone, so I guess there is a reason for that........???

      Hope all goes well with you.  Sincerely, G

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    • Posted

      roos de geer, Hi there, are you telling me that the libido thing

      in Livial is testosterone?  So now that I am off Livial, and my

      libido has sank, I can get it up again with testosterone?  Are

      there any foods with that?  I know I have to be careful, because

      I could grow hair on my chest heh....heh......not a pretty sight.

      But I will tell you that after leaving Livial now for 5 months the

      peach fuzz I had around chin has left, and I did not get depressed, but I do feel different.......the Livial makes you kind

      of shine more, and gives you more energy.  Yesterday my

      oncologist said that the lack of HRT or estrogen hormone makes

      you foggier in the head, and not so vibrant........oh well, and so

      it is...............G

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    • Posted

      Hi georgina . That is right! Livial has testosterone which is why it improves libido! The first few months I took it it transform my life. I could sleep , I had no more hot flashes and my mind was how I used to be! Energy, lots of libido, i Was more cognitive. The my GP in uk gave me a generic brand which did not work at all. I am going back and demand to have Livial, the proper Tibolone thing.
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    • Posted

      That's right. The libido thing is testosterone. I would prefer to have the estrogen and testosterone seperately as well, so you can find out the right dose of each, but no testosterone medicine is available to women, so... 
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    • Posted

      I just read on my white box of Tibolone tablets : it is made by Glenmark pharmaceuticals Europe ltd. anyone use this brand in uk? Any comments or benefits from it?
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    • Posted

      I can't remember, I usually ended up with the box that said

      Livial 2.5mg tiblona made by Schering-Plough and it cost 

      just a few cents under U.S.50.00, but it does not say in what

      country it was made in.  The box is white and the letters are

      in tourqoise (light) and darker tourqoise.  It that what you get

      in the UK?  This is sold in Central and South America. 

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    • Posted

      Sueli50, hi there again, I just checked my white and tourqoise

      box made by Schering-Plough and it is made in Brazil, and it

      cost about US$50.00 the box, sorry about that, I just reread

      the box and caught that it was made in Brazil.  This is the good

      stuff, because it says Livial on it.

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    • Posted

      What time of day do you all take (took) your tibolone? I thought at night was best, because that is when your body is used to making testosterone, but now i think, that makes your body 'lazy' and it's better to spread the adminstration over the day.
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    • Posted

      I take before going to bed. I will change times then. I went to see the chemist and good news! He said that NHS can pay for Livial but the GP must write it down on my prescription . I booked an appointment on 15/03. Hopefully I will sort it out soon.
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    • Posted

      I have taken my Livial when I get up in the morning, or later

      on in the late morning....yes it sure is good stuff!!!  I was Wonder

      Woman, and sure do miss it, but have never taken at night time.

      I think they say you have to take the same time every day, my

      gynecologist said to take when I got up and I guess so I would

      not forget, like brushing your teeth??

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    • Posted

      Yes, very good stuff!! I'll drink to that!!  BTW, one of you ladies 

      recommended to me, can't remember who she was, but to use

      coconut oil for dryness, specially now that I will be taking an

      estrogen blocker which will dry me up like a prune, ........and the

      oncologist gave me a phamphlet on things of what to expect and

      what to do about it, and sure enough coconut oil was in the

      phamphlet......I know you ladies don't need it, but just want to

      let you know that that is good stuff too!!! All my very best to

      you Sueli50, and am so glad that if you insist that you will get

      the real McCoy!!! Good talking to you and roos de geer!! May

      God Bless You Both!!! xo G

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    • Posted

      Hi I upped mine to 3.7mg 3 days ago as it stopped working and up to now I feel alot better I take half a tablet in a morning half in an afternoon then an extra half about 6/7pm I feel really good

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