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 ?
I would go back and discuss with your Doctor Sue...
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
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
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.
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.
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 .
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.
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...
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
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!
I hope this will work for you, but i've taken the same generic brand from the start and at that point it did work.
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
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
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.
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...
Right On Sueli50!!!
hmmm.......so sad.
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?
Hi Sue, how are you? I'm 56 & over a year with no periods, I was on Livial for 3mths, at first it was ok & my symptoms eased but then everything started again(over the last couple yrs I've had & gone through many symptoms in varying intensities) I started feeling swimmy/floaty in the head really unwell & my BP went up so I stopped Livial...has been a week without it now & I feel really awful....it's all back, hot flushed, woozy weird in the head waking in the morning with anxiety, sweaty faint light headed sensations. The anxiety governs everything I do, I feel so awful! I take BP meds & dont react well to antiDs which is what my Dr wants me on. Am trying magnesium to ease anxiety otherwise I don't know what to do or take considering the BP meds.
Keep Well