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[Twistedwitch]

Hi everyone. I am currently on Tibolone and have been for the past 18 months. It has been an absolute godsend and i feel fantastic. I was experiencing some slight spotting so went to see the practice nurse who told me to stop taking it and sent me for an ultrasound and an internal exam. All came back normal but i was off it for 4 weeks. During this time i felt terrible!
I had a call with her today and she said i should go onto patches and gel instead of Tibolone as they are stopping prescribing it. I have tried patches in the past and they really irritate my skin and leave welts for days. I also did not really get on with them as i had to change every couple of days and i forgot a few times. I didn't feel half as good as I do on Tibolone. I asked her if there was anything else that was just one pill in the morning, like Tibolone and she said no. She has agreed to keep me on them until December but says they need to take me off them soon due to them no longer being prescribed. She said she had spoken to the HRT consultant at one of the hospitals who was surprised i was even prescribed it. For context - i went for a private consultation before I had it as I could not get an appointment at my GP and i was told to try Tibolone - it has been an absolute game changer.  I cannot find anything anywhere about it no longer being prescribed and I am upset that I have to come off it and there is no alternative yet. Does anyone know if this is correct or if there is an alternative? thanks!

[bombsh3ll]

I don't think it is an availability issue, it sounds like they have just arbitrarily decided to stop prescribing it.

Ask to see a GP and put forward your case for taking it.

Ultimately however if your local NHS trust has decided to stop funding tibolone, you may have to self fund it if you want to continue.

Fortunately it is cheaper to buy tibolone than separate estradiol, progestogen and testosterone.

There are several online pharmacies who will oblige, or you could see a private specialist to get a prescription.

[Twistedwitch]

Thank you. They have not given me a reason for not prescribing it other than they are stopping. I will make some enquiries and see what i can do. Thanks again 

[Violetta808]

I’m pretty sure tibolone is widely available (I hope so - I’ve been taking it 6 months myself and I agree it’s brilliant)

I think many medics are wary of prescribing it because it’s a synthetic steroid taken orally and therefore considered old fashioned.

My own GP told me the practice always prescribes patches, gel etc as a first-line HRT and only prescribes tibolone if it's recommended by a consultant gynaecologist, as it was in my case (I was prescribed it by the hospital following investigations for bleeding on regular HRT).

Like bombsh3ll says you can buy it privately, though you shouldn’t have to, if it works best for you and you have no health contraindications.

Re other HRT in oral form, there is Bijuve, which is a bioidentical combined oestrogen-progesterone that’s taken as a daily pill. But that’s all I know about it.

[bombsh3ll]

Also something they may try to argue is "increased stroke risk" with tibolone.

The study in question, looking at older women, showed 3/1000 strokes in the placebo group and 6/1000 strokes on tibolone.

That is a difference in absolute risk of 0.3 %.

[flo69]

I'm not aware of any plans to change tibolone prescribing but it's banned in the US due to fears athletes might use it, so women are just left to suffer!!!

The first doctor to give me tibolone was a grumpy locum who told me I couldn't have the bioidentical HRT because I might become allergic to it (I argued how ridiculous that was to no avail), my only options were tibolone or indivina so I arbitrarily chose tibolone and it is fantastic for me.

At first I had tummy pains, other than that I'm good and hardly need to use my vagifem, I don't always get that item on my prescription and it was essential before.

It is a tablet that makes you feel awake and alive again, I take it in the morning so it doesn't affect my sleep. I no longer get hot flushes or really any noticeable menopause symptom, I even have fake periods every month which are just the same as real periods except if you call it a period they get flustered because my notes have the date of my last period as over three years ago!