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Author Topic: Anyone taking Tibolone (Livial)? - a positive update  (Read 29148 times)

AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #15 on: July 26, 2024, 07:03:48 PM »

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+.
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bombsh3ll

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #16 on: July 26, 2024, 08:20:51 PM »

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!
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #17 on: July 26, 2024, 08:43:04 PM »

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.
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Violetta808

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #18 on: July 27, 2024, 08:43:59 AM »

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.
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #19 on: July 27, 2024, 09:07:04 AM »

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.
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #20 on: July 27, 2024, 09:49:17 AM »

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.
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Violetta808

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #21 on: July 27, 2024, 10:45:13 AM »

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.
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #22 on: July 27, 2024, 02:58:55 PM »

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.


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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #23 on: August 02, 2024, 11:34:34 AM »

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.
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #24 on: August 16, 2024, 12:42:50 PM »

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.
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Violetta808

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #25 on: August 19, 2024, 05:06:02 PM »

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?
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #26 on: August 20, 2024, 10:22:28 AM »

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.
« Last Edit: August 20, 2024, 10:24:17 AM by AngelaH »
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #27 on: August 24, 2024, 04:44:22 PM »

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.
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Furyan

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #28 on: September 05, 2024, 09:32:15 PM »

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…
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AngelaH

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Re: Anyone taking Tibolone (Livial)? - a positive update
« Reply #29 on: September 06, 2024, 07:57:47 PM »

[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!
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