Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[SarahJayne]

Morning Ladies

Popped my first Tibolone this morning and I’m eagerly awaiting the results.
Main meno symptoms were low mood (extremely low), hot flushes and absolutely no libido- zero😢. I’m 55, life is miserable atm.

I did have a bit of a battle with my GP, the area I’m in doesn’t prescribe it. After consulting a colleague, I received a text saying she would prescribe it. Local pharmacy has to order it in specially.

I suppose this is less of a question and more of a ‘why is it seemingly underused?’
From reading the threads on here, it seems to be a very good option. Especially for those of us that don’t tolerate progesterone very well. The risks seem to be the usual HRT associated risks. Which makes me wonder am I missing something serious?

If anyone is interested, I’m happy to update as time goes on. I read the previous diary that another member, very helpfully, posted.

[Fizwhizz]

I hope you have good results and I’d be interested in updates please. I’m struggling with low mood, feeling flat, generally apathetic etc. I’m on transdermal HRT incl testosterone but just don’t seem to be absorbing it well. I’m now looking at other delivery options including Lenzetto, Sandrena, Tibilone and Bijuve. Thanks

[Violetta808]

Hi SarahJayne, I hope everything is going well so far. I’m one of those on Tibolone - since April 2024, and very happy with it. It took about a week to start working on my post-meno symptoms and since then I have felt really good both physically and mentally. No side effects, no bleeding.

Tibolone has been around for decades and is very safe but isn’t prescribed much because a) it’s oral and b) it’s an entirely synthetic steroid. The ‘gold standard’ of HRT has become transdermal bioidentical hormones so Tibolone has fallen out of favour with some and is seen as outdated. Louise Newson was negative about it recently in an Instagram post (her comment was based on a snippet of a report that relies on outdated advice and is behind a paywall anyway). Which IMHO is disappointing and a somewhat careless approach considering how influential she is.

As we all know the guidelines for HRT haven’t been properly updated for years and much of the advice is still based on the old data that was promulgated 20 years ago and caused the HRT scare.

For me, the many benefits far outweigh any (vanishingly small) potential risks. I hope it works for you - please feel free to ask me any questions if you like.

[Fizwhizz]

Hi SarahJayne, I hope everything is going well so far. I’m one of those on Tibolone - since April 2024, and very happy with it. It took about a week to start working on my post-meno symptoms and since then I have felt really good both physically and mentally. No side effects, no bleeding.

Tibolone has been around for decades and is very safe but isn’t prescribed much because a) it’s oral and b) it’s an entirely synthetic steroid. The ‘gold standard’ of HRT has become transdermal bioidentical hormones so Tibolone has fallen out of favour with some and is seen as outdated. Louise Newson was negative about it recently in an Instagram post (her comment was based on a snippet of a report that relies on outdated advice and is behind a paywall anyway). Which IMHO is disappointing and a somewhat careless approach considering how influential she is.

As we all know the guidelines for HRT haven’t been properly updated for years and much of the advice is still based on the old data that was promulgated 20 years ago and caused the HRT scare.

For me, the many benefits far outweigh any (vanishingly small) potential risks. I hope it works for you - please feel free to ask me any questions if you like.

Violetta,

Can I please ask what symptoms you had and the Tibolone helped with?

I’m a poor absorber of transdermal oestrogen and am really struggling with low mood and feeling flat. Having tried higher doses of oestrogen without relief so far I’m wondering what are my next options.

Thanks

[Violetta808]

Hi Fiz

Of course: First, Tibolone really helped with my mood. I was functioning OK but felt low-level sad and kind of lost, but I’m now back to feeling much more optimistic about life. I believe that is due to the androgenic component.

Other ‘brain’ symptoms I had were frequent headaches (resolved almost immediately - that is the oestrogenic component I believe) loss of libido and lack of response. Though I still don’t have much libido, response is greatly improved, and I can live with that.

Physically, it has reversed the aching feet in the mornings, and the vaginal and vulval dryness (I don’t need to use topical oestrogen anymore).

I didn’t have sleep problems and only experienced a few hot flushes which had stopped, so can’t comment on those symptoms. Generally it has helped me feel normal again, and with no side effects.

I suppose you could try adding in testosterone to your current regimen which may help with mood but I don’t have experience of that.

I only ended up on Tibolone as a last resort due to side effects on conventional HRT but there’s a lot to be said for getting everything in one small daily tablet.

[SarahJayne]

Hi Violetta and Fiz

I’m on my 5th day and I can’t really discern any noticeable difference, that can’t be put down to placebo effect from knowing I’m taking something. Sleep is a bit disrupted, but that happens anyway. I do have a warm face, but I may have a bit of a cold.

I’ve just read the paper that Dr Newson was using when she made her comments. If you’re interested Google Louise Newson Tibolone and a LinkedIn excerpt comes up with a pdf link to the paper listing all drugs that should no longer be prescribed. The paper states “When hormone therapy is chosen, despite its adverse effects, the most reasonable option is an oestrogen- progesterone combination, used at the lowest possible dose and for the shortest possible duration.” It’s not even correct, one newer research paper showed that it actually lowers the risk of breast cancer unless you’ve already had it.

Had to have been written by a man. “Despite its adverse effects”. What do they think we’re going through with the menopause? That is so problematic, and makes me so angry.

Not to mention that up to a fifth of GP’s salaries are from pharmaceutical companies (and no, I’m not suggesting Dr Newson is compromised at all, she’s done a lot for menopausal women). And I know this is a controversial topic, there are obviously and necessarily close ties between the two and by and large benefits patients but is there, perhaps, a conflict of interest on occasion?
I’m guessing the new gold standard will be outdated in a couple of years, and so it goes on…

Sorry, gone off topic.

I’m going to continue on Tibolone and I will update. I had read as many papers as I could before asking for it, so I’m reasonably well informed and I know my body and what it does and doesn’t tolerate, it seemed the best option for me.
If it does little or nothing, then back to the drawing board, I guess.

[BarbieAnn58]

Hi Sarah Jayne, I would stick with your tibolone. I was prescribed it by a young GP when I was 55, after suffering with low mood, poor sleep pattern, low concentration levels and VA symptoms. I stuck with it and took it for 5 years, I found I had more energy, definitely less moody and weepy, concentration and ability to sleep improved massively. Interestingly I had a high cholesterol too! and over time it came right down. I work shifts in the NHS, and I don't really know how I would have managed the last few years without. Sadly have come off it recently, cold turkey, after a vaginal bleed and increased endometrial measurement of 6.5mm, feeling a bit lost without any HRT now and symptoms returning. Keep us posted with how you are doing!