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Tibolone question

9 replies

Shallysally · 21/09/2021 09:32

I’ve been on Tibolone for 6 weeks now. Had review with GP at 4 week point, all was ok, feeling much better and GP agreed to prescribe indefinitely.

This last week the joint pain is back, it’s affecting my sleep. Also feeling pretty shoddy mentally. Feel really low, although there are other factors that are contributing to that so not all meno related.

So has anyone else experienced this please, is it likely to improve or should I speak with GP again?

Not sure if Tibolone dosage can be increased, and given the associated blood clotting risk as opposed to transdermal route not sure I’d want an increase.

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JinglingHellsBells · 21/09/2021 09:55

Out of interest why were you put on it? it's not first choice type of HRT and usually reserved for women with 'unusual' needs.

The preferred type at the moment is transdermal estrogen (patch or gel) and micronised ( natural) progesterone.

Any reason why your GP avoided these?

Shallysally · 21/09/2021 10:13

My maternal grandmother had breast cancer, I seem to remember goofing and not sure if Tibolone has lower risk factors for that?

I did query it with GP when I collected the prescription as am aware that transdermal is route of choice usually now.

I’ve had a real battle to get the HRT, been asking for it for probably 3 years, but because of family history of cancer and blood clotting disorder I’ve been told no.
It was only this time when I said I need quality of life rather than not having HRT that they prescribed.

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Shallysally · 21/09/2021 10:14

Haha, Googling even, not goofing!!

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JinglingHellsBells · 21/09/2021 11:31

Hmmmm...based on what I know, and your history, you are on the wrong type. Tibolone has no reduced risk of BC. But in any case, meno specialists would not really place any importance on one older family member with BC- they look for 2 close relatives, a mother and sister.

At the moment, the preferred choice for anyone with blood clotting history ( assume you mean family not yourself) is transdermal. In fact it's now the default choice for ALL women.

Likewise, micronised progesterone (Utrogestan) is shown to have no risk of breast cancer for at least 5 years' use.

You might like to go back and ask for that.

I came across this today- the authors are menopause specialists who run the meno clinic at the Chelsea and Westminster hospital London. Panay has carried out a lot of research himself.

www.guidelinesinpractice.co.uk/womens-health/top-tips-hormone-replacement-therapy/352771.article

It's guidance for GPs and drs but worth reading. Bear in mind the stats quoted are from 2010 and are now out of date as many of the types of HRT used then are no longer first choice in the UK.

Shallysally · 21/09/2021 23:59

Thank you @JinglingHellsBells. Had a telephone appointment with GP today, she says I need to wait another few weeks to see how things go. Booked appointment for 3 weeks time.

Yes, family history of blood clotting. I know, I was surprised when was prescribed the Tibolone.

I’ll have a read of the article too.

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JinglingHellsBells · 22/09/2021 07:51

@Shallysally If there is a strong family history of blood clots (stroke, DVT etc at a young age with close relatives) you should NOT be on tablet form HRT. This is in all the guidance to drs.
I suggest you see an different one!

Shallysally · 22/09/2021 08:32

One of the reasons GP was reluctant to prescribe HRT previously was family history. My Mum and her mum have exactly what you describe above, DVT at young age (30’s)

It’s another think I queried and was told it’s only a risk factor if it is me who has history of this.

Trouble is there are just 2 GP’s at the practice now, and neither have a women’s health speciality, the GP who did retired some time ago.

I feel that at my next appointment I’m going to state that I’m concerned about the tablet form and just say why am I not on transdermal.

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JinglingHellsBells · 22/09/2021 08:51

Well that seems odd.

If you have no risk of DVT as it's not you but your relatives, why doesn't she give you transdermal HRT?

Tibolone is not straightforward HRT (don't know if you have Googled it, but maybe do that?)

It's a synthetic type of HRT (compared to body identical) and is made from types of estrogen and progestogens.

It's only for women post meno as otherwise it can cause irregular bleeding.

Shallysally · 22/09/2021 09:12

Yes I have googled it, that’s why I queried with GP.

I am post menopausal, so at least that aspect is right!

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