Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: Violetta808 on April 08, 2024, 07:23:11 AM
-
Is anyone here taking Tibolone? How do you find it? Any hints and tips?
I’ve just been prescribed it at my hospital follow up because of bleeding on conventional HRT from some small submucosal fibroids (everything was biopsied and benign).
The consultant said Tibolone is a non-bleeding HRT alternative, though I have read that one of the common side effects is… you’ve guessed it… bleeding!
Should I take the full or half dose to start? (The reason is that, with hindsight, I’d definitely have eased into HRT on a 25 mcg oestrogen patch rather than the standard 50.)
I’ve been off HRT for six weeks (I was told to stop following the hysteroscopy investigations). Apart from the return of frequent headaches and some dryness creeping back (everywhere!) I still feel mostly ok.
I’m bit concerned about the androgenic effects of Tibolone as I’ve been prone to hormonal acne, but I could certainly do with a little more drive and energy.
Thank you all!
-
I took it for 18 months a few years ago. It caused some bleeding which put me off, though they said I could have continued. It gave me bad acne for a while. It did improve libido but didn't really make me feel more energetic.
-
Thanks Suzy. Did the acne settle while still on Tibolone or did you have to stop taking it for it to clear? It’s a miserable condition. Not something I still want to be worrying about in my mid 50s!
Interesting about the bleeding. So it’s definitely not quite the magic bullet for everyone.
I guess all I can do is try it and see how it goes.
-
Yes the acne did settle down while still taking it. I took for 18 months before the bleeding, which stopped when I stopped the tibolone. Generally it didn't make me feel as great as I'd hoped but we all react differently. It's worth trying. I don't know if I read it's only recommended for a year, not sure.
-
Violeta808,
Here’s a link to my 2016 diary when I started it https://www.menopausematters.co.uk/forum/index.php/topic,33626.msg539296.html#msg539296
I came off it at the end of 2019 because it had stopped being as effectively for me. It was good while it worked, but there were some odd side effects and I’ve found Sandrena, Utrogestan plus testosterone much better for me.
HTH,
Sooze
-
Hi Sooze - thanks for the link. I'd not found that thread from searching the forum so that's really interesting reading. It sounds promising if not perfect (but then what is!)
I've not actually started the tibolone yet, because the prescription got lost between the hospital and pharmacy, or maybe they just forgot to send it - honestly, I can't even! However it's finally got through and I'm going to pick it up in the morning.
In the meantime, I've been sticking on 1/3 of an Everol Conti patch the last couple of weeks. I woke up with a headache (one of my more annoying post-meno symptoms) on my birthday and thought - sod this. I don't know if it's so low a dose as to be practically placebo, but it's not brought on any bleeding, and I managed to have a couple of glasses of wine at a work do last night, which would usually mean a headache, and felt fine this morning. Ideally I'd like to go up to a 25mcg dose and see what happens but I have a review in three months so should give the tibolone a go in the meantime.
So maybe there's something there to fall back on if the tibolone doesn't suit - but I'm going to try it.
-
I hope it works for you.
-
Just an update as I’ve finished my first month of Tibolone.
To recap - I had a bumpy start with conventional HRT (Everol Conti then Everol + Utrogestan) all of which made me bleed a lot, hence investigations on 2-week pathway, and hysteroscopy, and discovery of fibroids, and gynaecologists giving conflicting advice, and all the associated stress and worry. I also realised (once I stopped) that I was feeling very bloated and water-retentive on it.
So I eventually had a follow-up appointment and the consultant suggested I try Tibolone.
I don’t want to jinx it, but so far so good. I’ve had no side effects at all, no bleeding, no boob-ache, nothing. At first I even wondered whether I’d been given a placebo sugar pill as I felt nothing different… except now the menopause headaches have gone, VA is well under control and I feel more normal and ‘myself’ than I have for a long time.
To be honest I was a little dubious about taking a synthetic steroid but it seems to suit me and has been so much more gentle than conventional HRT, and there's a lot to be said for the convenience of just having to swallow one tiny pill every morning.
Fingers crossed that Tibolone continues to work for me, and I hope this is a positive message to anyone else wondering about trying it.
-
Thanks Violetta808 for the update. I've got to be honest I'd not heard of Tibolone until now. Is it still HRT?
I'm so glad it is working for you because I know you had a tough time with all the investigations etc the same as me.
I'm wondering if this is something I should maybe consider as I never seemed to be able to get my HRT right,even after 10 years of trying numerous types. I stopped all HRT in December and touch wood so far so good,I still have some symptoms.... but it's the VA that is starting to bother me now. I've got ovestin but honestly I don't know what is safe to try anymore. I'm so anxious now about starting anything new....before my scare I'd have tried anything as long as the NHS said it was safe but now I'm so scared about my womb lining getting thick again and having to go through all that again.
-
Hi Northerngirl
The most useful short description of Tibolone I've found is from an Australian site (the NHS one is a bit basic and out of date).
Tibolone is a synthetic steroid which has oestrogenic, progestogenic and androgenic action. The drug is metabolised into three active metabolites, two of which bind solely to the oestrogen receptor, and a third which has affinity for the progesterone (preventing endometrial hyperplasia) and androgen receptors. The oestrogenic effects are exerted mainly in bone and vagina and are responsible for control of vasomotor symptoms and prevention of bone loss. In limiting the conversion of oestrone to oestradiol, tibolone may reduce the oestrogenic effects in breast tissue. Tibolone has androgenic effects in the brain and liver; both by reducing SHBG and by weak stimulation of the androgen receptor.
Note it actually prevents endometrial hyperplasia which is really useful if you have bleeding issues on conventional HRT or very twitchy fibroids like I do.
So is it the VA that is the main issue for you now? I'm not surprised you are anxious about taking HRT again after all the stress that consultant put your through with his needless catastrophising, and if you feel you don't need systemic HRT perhaps you'll be OK on just the topical treatment, but maybe you need the pessary too. I needed both and was using vagifem and ovestin for a couple of years and never had any bleeding problems – until I went on the patches. Also my elderly mum who'd had breast cancer was prescribed ovestin for her VA by a very enlightened GP (she died aged 94 and not of anything to do with breast cancer). So it's probably as safe as anything can be in this world...
It's definitely worth asking about Tibolone though. Personally I'm really glad I've tried it.
-
Hi, thanks for your detailed reply....it's definitely something I'll look into. But like you said I think I'm maybe okay without systemic HRT....at this point anyway.
Think I'm going to have to stop being a wuss and start using ovestin.
I noticed on one of your earlier posts that you were suffering with "dryness everywhere " which is definitely an issue of mine, not just VA it's everywhere. So I'm just wondering if the Tibolone has helped with that for you?
It's very difficult weighing all the pros and cons isn't it.
Thanks again Violetta808
-
Dry eyes, ugh! But that’s also due to age and years of wearing contact lenses. Also at menopause my gums started receding, when before it was never an issue. Don’t know if that’s linked but I’ve seen others’ posts about gums and teeth here and wondered. I think I meant I felt dried out generally too, ie achy joints and headaches. That’s definitely improved.
I would use the vagifem - when you’re ready! You could always insert it part of the way up so it’s not right next to your cervix and less likely to get inside. You’re not being a wuss though. You’ve had months of serious worry and it takes time to process all that.
-
I’ve been on tibolone for nearly four months and it’s going really well. I just had a follow up at the hospital (following hysteroscopy and biopsy earlier this year for post-meno bleeding) and have been discharged.
I was quite sceptical about taking tibolone at first as I’d read very differing opinions, but I’m thankfully one of the lucky ones. For me, it’s ‘just right’ and has made me feel normal again with no drama and no side effects – none of the bleeding and bloating from patches, or the spaced-out feeling I got from utrogestan.
I asked the consultant various questions about the safety of being on it long-term as it’s oral and a synthetic hormone. In his opinion I can take it as long as I want or need to, beyond the age of 60, and that clot/stroke risks were minimal.
While I don’t feel like I did five years ago, a lot of life has happened in that time and I wasn’t expecting to turn back the clock. However I do feel much more resilient and motivated to do positive things and look after myself. I wonder if my mood is better as a direct effect of the tibolone on my brain, or because it’s sorted out my physical symptoms, particularly the VA and frequent headaches, or a bit of both?
I realise on the menopause scale of no symptoms to absolutely awful I’ve had it relatively easy, but it was bad enough for me to seek treatment and join this forum when conventional HRT caused me new problems. Of course we are all unique in what works for us, but based on my experience, if anyone is considering trying tibolone and it’s medically safe to do so, I would encourage them to give it a go.
-
Thanks for sharing this! I'm glad it's helping you and it's always good to hear positive experiences.
I am on the combined pill presently but when the time comes to move onto menopause licenced therapy I am very interested in tibolone for myself.
I don't want the mess, faff, expense and unreliability of transdermal products, and a single pill providing estrogen, androgen and endometrial protection in one sounds fantastic.
-
I don't want the mess, faff, expense and unreliability of transdermal products, and a single pill providing estrogen, androgen and endometrial protection in one sounds fantastic.
[/quote]
What mess?!
..you take one sachet out of your fridge, tear top, take out, stick onto your chick, and done. For three or four days..
Where's a mess in it..?!
-
I am going to have app with gynaecologist in my local NHS meno clinic tomorrow morning to discuss Tibolone, my GP couldn’t prescribe it herself, so made the referral for me. When I mentioned Tibolone to my GP, she looked scared, I think they are very careful with prescribing synthetic tablets to those who are 50+.
-
That's bonkers, I would argue that all the antidepressants, statins, blood pressure medications, antibiotics for urine infections and painkillers for osteoporotic fractures being prescribed are far more synthetic!
Regarding the mess with transdermal I meant the gels mainly however the surgical dressings that I had to buy to stick over the patches to keep them on leave a sticky mess on your skin especially if you've showered in it!
-
I don’t think Tibolone is a choice, as well as antibiotics, statins, antidepressants… there is a reason why you ask to prescribe them. I am not sure if “I don’t like the mess with transdermal” can be considered as a reason.
-
I did have some choice in the sense it was either no HRT, fibroid surgery/hysterectomy, or tibolone. Hobson’s choice! That said, it’s without a doubt the most effective and straightforward form of HRT I’ve taken and knowing what I know now I would have chosen it from the start.
Tibolone has been used safely for decades but because transdermal, body identical hormones are now regarded as the gold standard, I don’t think GPs are taught much about it these days, unless they have a particular interest in menopause. Tibolone is designed for use in postmenopausal women so most of us who take it will be 50+. If one is otherwise healthy it’s no more risky than any other form of HRT.
-
When I mentioned a choice I meant the case when you were able to take body identical HRT. This type of HRT always comes first. To be honest even after more than a year trying different forms of body identical estrogens, which made me completely ill and not able to function, I never was offered Tibolone. It is higher risk drug and medical professionals are aware of this. My GP practice doesn’t prescribe it at all, if I want to try it I have to talk to meno specialist.
-
I just have talked to a very nice lady and she is writing to my GP right now to let me try Tibolone. So I need to go back to my GP.
-
This is excellent news AngelaH. Fingers and toes crossed it works for you as well as it’s working for me. I hope the meno specialist is able to reassure (and educate) your GP practice.
-
Thank you Violetta, I can’t really predict how my body is going to respond to it, but don’t think it can be worse than body identical HRT, which made me completely disabled.
Well, NHS as an organisation is full of rules and instructions, doctors should follow them, otherwise they can find themselves in trouble. I do believe some GP and nurses are trained to work with menopausal patients, but it looks like we don’t have them in my local GP practice, so all cases like mine, cases which can’t be treated with body identical transdermal HRT should be treated in meno clinics.
-
Hi everyone, I am just back from my GP surgery, they have got letter from the hospital and a receptionist passed information to GP, so somewhere around Tuesday I can collect it from pharmacy. I am very impressed how NHS services are improved in my area. That was my second referral to meno clinic and I waited 4 weeks for appointment, it could be done even in 3 weeks if I could answer the phone call a week earlier to make an appointment but they called me when I was at work and I couldn’t answer the phone. They also do Saturdays and Sundays appointments, so is very convenient for those who work Monday-Friday. I had to wait about 7 weeks for an appointment, when I was referred first time.
-
Hello and I am back now after being on Tibolone for 7 days. I would like to ask those, who use this drug, does it actually provide 24 hours stable effect on the body, when it settles? I notice it works in different phases for me, each phase has its own time and duration, and it’s possible it links to when (time of the day) you actually take your tablet. For the past 3 nights I completely lost my night sleep. Before Tibolone I didn’t have any sleep problems at all. I feel like δ4-tibolone component is taking over during night time and it keeps me awake. Does anyone have the same experience? I know it’s a very early stage of the treatment, but I am trying to understand how this drug works.
Thanks.
-
Hi Angela
Good to hear you’ve started it but sorry your sleep has gone awol. In my experience it is a very stable drug with no ups or downs, but obviously we all react differently to different things. When I was on oestrogen + utro I definitely had noticeable cyclical side effects, but not with tibolone.
From the stuff I’ve read online, your liver breaks down the tibolone very quickly into the three metabolites - within around 90 mins – and the stronger of the two oestrogenic molecules has the longest half-life. It is supposed to give you more 'energy' so perhaps that is something to do with disrupted sleep.
Are you taking it first thing in the morning? That’s what I was advised to do.
How are you feeling on it otherwise?
-
Hi Violetta808,
Thank you for your reply, I managed to put it right eventually, after 3 sleepless nights I realised that I took Tibolone in the wrong time, I started taking it the mornings, around 9.30 am, and after I changed time to the evenings about 10.00 pm, it started working for me in the right phases, I sleep during night and keep active during day now. So what is actually happening to me. I did a little bit research on how Tibolone works, 2 estrogens 3α-hydroxytibolone and 3β-hydroxytibolone reach the full active state in a 1.5 - 2 hours after taking a tablet, and δ4-tibolone, which acts as progesterone and testosterone reaches the full active state only in about 7 hours after taking a tablet. My body is highly sensitive to sex hormones and that was the reason why I couldn’t take HRT. Being highly sensitive means my body reacts severely on the slightest changes in hormonal levels. In a 2 hours after taking a tablet, estrogen phase took the place, it left me feeling tired, spaced out with foggy brain, after that about late afternoon I suddenly started feeling very energetic, my brain was working properly and I felt quite normal. That was the time when progesterone and testosterone phase took the place. This phase continued through the night causing insomnia. When I changed the time and started taking a tablet in the late evening before going to bed, estrogen phase moved to night time making me sleepy throughout the night, progesterone and testosterone phase moved to early morning, so now when I wake up I feel full of energy. This phase continues through the day.
Yes, you are right, we all are very different and ours bodies react differently to same treatments. HRT did not work for me at all, it made me feel worse than I was before taking it. With Tibolone I definitely feel better now.
-
16 days now since I started Tibolone. All things are going well, I feel quite stable, no problems with night sleep since I started taking Tibolone at bedtime. No side effects. Feel very naturally balanced.
-
Hi Violetta808,
Thank you for your reply, I managed to put it right eventually, after 3 sleepless nights I realised that I took Tibolone in the wrong time, I started taking it the mornings, around 9.30 am, and after I changed time to the evenings about 10.00 pm, it started working for me in the right phases, I sleep during night and keep active during day now. So what is actually happening to me. I did a little bit research on how Tibolone works, 2 estrogens 3α-hydroxytibolone and 3β-hydroxytibolone reach the full active state in a 1.5 - 2 hours after taking a tablet, and δ4-tibolone, which acts as progesterone and testosterone reaches the full active state only in about 7 hours after taking a tablet. My body is highly sensitive to sex hormones and that was the reason why I couldn’t take HRT. Being highly sensitive means my body reacts severely on the slightest changes in hormonal levels. In a 2 hours after taking a tablet, estrogen phase took the place, it left me feeling tired, spaced out with foggy brain, after that about late afternoon I suddenly started feeling very energetic, my brain was working properly and I felt quite normal. That was the time when progesterone and testosterone phase took the place. This phase continued through the night causing insomnia. When I changed the time and started taking a tablet in the late evening before going to bed, estrogen phase moved to night time making me sleepy throughout the night, progesterone and testosterone phase moved to early morning, so now when I wake up I feel full of energy. This phase continues through the day.
Yes, you are right, we all are very different and ours bodies react differently to same treatments. HRT did not work for me at all, it made me feel worse than I was before taking it. With Tibolone I definitely feel better now.
Wow I didn’t come across this information when I researched Tibolone, thanks for sharing! I started Tibolone a couple months ago, and came off it briefly to go back to body identical as I had a return of flushes. For one reason or another I didn’t seem to adjust to the body identical (too much oestrogen I think) so I’m giving Tibolone another go because I don’t think I gave it a proper chance to settle. I like the energy and personal sensation Tibolone gives me, it also helps with lubrication. I also found that generic Tibolone is not strong enough, I have to take Livial so my GP agreed ro name it on the prescription.
Glad you found a way to take it to support your sleep, may it long continue! Hope mine works out…
-
[quote author=AngelaH
Wow I didn’t come across this information when I researched Tibolone, thanks for sharing! I started Tibolone a couple months ago, and came off it briefly to go back to body identical as I had a return of flushes. For one reason or another I didn’t seem to adjust to the body identical (too much oestrogen I think) so I’m giving Tibolone another go because I don’t think I gave it a proper chance to settle. I like the energy and personal sensation Tibolone gives me, it also helps with lubrication. I also found that generic Tibolone is not strong enough, I have to take Livial so my GP agreed ro name it on the prescription.
Glad you found a way to take it to support your sleep, may it long continue! Hope mine works out…
Hi Furyan,
To be honest I couldn’t find that information in English language resources, but I did search in my native language too and this is how I came across this information. I now have finished full 4 weeks of treatment, I had couple of days when I felt like Tibolone stopped working for me, so I still expect some instability. I still have hot flashes too, but energy level is so good and night sleep as well. I intend to continue 3 months and see what happens. Anyway I can’t go back to body identical HRT because it made me feel too sick, my body couldn’t function at all. I was sold Tibolone, when I just started using it, I felt like it was too strong for me, from the second day it started making significant changes to my body, mentally and physically and I even started thinking about changing to a smaller dose, but closer to the end of the month I noticed its effects became weaker. Theoretically it should not be any difference between Tibolone and Livial, but it can be a good idea to ask and try Livial next time.
Good luck with your treatment , I hope it will work for you!
-
[quote author=AngelaH
Wow I didn’t come across this information when I researched Tibolone, thanks for sharing! I started Tibolone a couple months ago, and came off it briefly to go back to body identical as I had a return of flushes. For one reason or another I didn’t seem to adjust to the body identical (too much oestrogen I think) so I’m giving Tibolone another go because I don’t think I gave it a proper chance to settle. I like the energy and personal sensation Tibolone gives me, it also helps with lubrication. I also found that generic Tibolone is not strong enough, I have to take Livial so my GP agreed ro name it on the prescription.
Glad you found a way to take it to support your sleep, may it long continue! Hope mine works out…
Hi Furyan,
To be honest I couldn’t find that information in English language resources, but I did search in my native language too and this is how I came across this information. I now have finished full 4 weeks of treatment, I had couple of days when I felt like Tibolone stopped working for me, so I still expect some instability. I still have hot flashes too, but energy level is so good and night sleep as well. I intend to continue 3 months and see what happens. Anyway I can’t go back to body identical HRT because it made me feel too sick, my body couldn’t function at all. I was sold Tibolone, when I just started using it, I felt like it was too strong for me, from the second day it started making significant changes to my body, mentally and physically and I even started thinking about changing to a smaller dose, but closer to the end of the month I noticed its effects became weaker. Theoretically it should not be any difference between Tibolone and Livial, but it can be a good idea to ask and try Livial next time.
Good luck with your treatment , I hope it will work for you!
Thanks AngelaH - reading the information you shared kind of makes sense as you describe your experience. I mean, the body appears to break the tibolone compound down into metabolites as it sees fit, which can’t be the same every day surely? So this might account for variable effects at times? Good that you’re waiting it out to give it a real chance. My GP reminded me today that we need a good three months at least to embed its effects and any side effects in the beginning may simply be because we changed something and the body kicks back.
Yes, strange thing about the difference effects of generic and branded, but I definitely didn’t imagine it. I am a little more sensitive to things anyway, being neurodivergent, so that could be why I felt even the subtler differences.
I hope it works for you too - do post any feedback if you think it’s worth sharing please, I’ll do the same :)
-
I mean, the body appears to break the tibolone compound down into metabolites as it sees fit, which can’t be the same every day surely? So this might account for variable effects at times?
I hope it works for you too - do post any feedback if you think it’s worth sharing please, I’ll do the same :)
It’s very hard to say for me how my body uses metabolites, Tibolone delivers the same dose every day, but I can clearly feel ups and downs, mainly from estrogen side, the same time high energy level remains constant, I slept deeply tonight for 10 hours :o and when woke up had so much energy like 20y.o. I like my light body now, I can jump and run like before. I eat horrible amount of ice cream and don’t put on weight. :o
Yes, I continue to explore and I share any interesting and useful information here. :)
-
Just found this chat as my GP has suggested stopping tibolone now that I’m 60+ It’s been great for me and although I stopped for 3 months I’m back to square one with night sweats, sore joints and bones, tiredness, no energy, low mood etc. So I’ve started taking it again. Any idea how long you can be on tibolone? I need to see my GP soon so any info would be appreciated
-
Hi Peggy - just seen this. At my three-month follow-up I asked this question of the hospital consultant gynaecologist (who prescribed the tibolone in the first place). He said it’s safe to keep taking it after 60 as long I want or need to (obviously contingent on being otherwise healthy, having annual check-ups etc). My GP agreed.
I think the traditional age 60 cut off is due to the tiny increased risk of blood clots from oral hormones (as opposed to transdermal) that rises with age, but it’s one of those recommendations that is a hangover of years-old guidelines, like the outdated one only to take HRT at the lowest dose for the shortest possible time.
-
Thanks for the info. I’m seeing my GP in a week or so and feel as if I may need to persuade them to continue my prescription. It does seem that there are benefits for heart and bone health to continue 🤷🏻♀️ I hope so anyway
-
I had to stop taking tibolone last year for a few months because of the side effect of bleeding. Stopping it was awful, they just stop you dead with no taper, so you go straight into having every symptom of menopause at once.
After a scan I was post meno for sure and was allowed tibolone again, what a relief!
I love tibolone for many reasons, while I was given it for entirely the wrong reasons, told by the locum GP it was completely safe and a good alternative to normal HRT which she thought was dangerous. I read this forum and realise it's not true what she said!!
Anyway I still have a monthly bleed which isn't a period but identical to a period, so who knows what it's called.
I was post meno over three years ago.
Why do doctors call HRT dangerous when you never hear them using that word for any mens' medicine, like statins for example?
-
That's me been seen by the GP and she seems ok with me carrying on taking Tibolone as long as I'm aware of the increased risk of stroke and my BP and general health are ok. Weighing everything up at the moment I would like a better quality of life with hrt. I stopped for 3 months and every symptom gradually got worse - night sweats, disturbed sleep, tired, no energy, sore bones/joints, poor motivation, brain not coping with usual challenges and zero libido. After 2 weeks back on tibolone I am starting to feel more normal and all of the symptoms are getting less. I have no idea how long I'll be able to use hrt but it works so well for my quality of life.
I've not had any bleeding with tibolone except at the very start which was slightly concerning. And I got some headaches when I first started but that all stopped after a short while. I hope that the current research will find out more about hrt use in the over 60's but I'll keep taking it for now.