HRT should include testosterone: discuss

[hippospot]

I am able to get testosterone (Tostran 2% gel, 3 pumps a week) via a private menopause clinic but not on the NHS.

I remember Davina saying in her documentary that women lose three hormones during peri but HRT only replaces two. This is scandalous, right?

I can no longer afford to see my private menopause specialist, I am post-hysterectomy (I paid for it myself as NHS would never have funded it for my PMDD). I feel good on Oestrogel and Tostran but now face not being able to continue with the Tostran.

Anyone else in this situation?

Whilst I hate being ordered to discuss and would not normally respond.... on this case I will. Testosterone for women is not licensed by the UK's regulatory authorities and is only available privately. Which is why you can't get it on the NHS.

I get Tostran from my NHS GP. If you can get referred to a menopause clinic OP then they will possibly direct your GP to prescribe it.

It's possible to get on the NHS depending on your GP, get a letter from your private consultant, and give it a try.

@SpeckledlyHen I do understand it's not licensed and that's why I can't get it.

I'll be interested to see if this changes in future now that menopause is being discussed more openly and women are lobbying for better health care to deal with peri symptoms.

@GreenManalishi Even with a letter from my consultant, my NHS GP won't prescribe it, unfortunately.

I've tried using only Oestrogel but with testosterone I have more energy, sleep better and have a libido. Granted these are not life-threatening but they massively increase my quality of life.

Is there another GP you can see or change to locally? Or will your private consultant see you less often and issue more cheaply for you?

If it helps anyone, in Turkey you can buy Testogel over the counter in pharmacies (£44 - ish last purchase)

Not available to purchase OTC in Spain/Croatia or Greece though - IME so far.

Last year I think the Newson Clinic thought it might become prescribeable at GP level in UK sometime this year…..waiting for news….

What about changing your brand of testosterone? I go to a private menopause clinic and was given the choice of what you have (expensive) or testogel which comes in little sachets and you have to apply 1/8 a day. I chose this because it is so much cheaper - just under £25 for 15 sachets. So £75 for approx a year's worth.

I use the same testosterone, very cheap and easy to apply. I was offered choice of the more expensive pump or the sachets and took the cheaper option.

It’s wrong to have no choice but to go private but I do think for menopause you get a much better service, unsurprising I suppose🤷‍♀️

I get testogel on the NHS

My NHS Gp suggested adding it in after trying regular HRT so its not true the NHS won’t prescribe it. Seems like different Trusts have different recommendations which is a pain.

OP I’ve just remembered something that might help, I had to say my libido had vanished to get the menopause clinic to prescribe this. They wouldn’t do it the first time for brain fog, just sex drive. Go figure that my partner’s needs are seemingly more important than me being able to do my job. (Ironically my partner has very little sex drive so no problems there)

Unfortunately it does depend on where you live and your GP. Each area will be guided by a local formulary saying what drugs can be used in the NHS and may impose other restrictions, saying what conditions they can be used for or if they can be prescribed by GPs or specialists (usually easy to find on Google if you know your local CCG /Trust/ ICB).

Because it is being used outside of it's license the prescriber also has to be willing to take on full responsibility for it's use. The company haven't submitted any data to the regulators to say it's safe/ effective for use in menopause or tested what doses should be used etc. Some GPs are reluctant to prescribe for that reason.

It's unfair but that's how it is, not just for HRT but for many other drugs too.

I get Testagel from my GP on the NHS. My GP made it clear to me that she could only prescribe it for libido and was careful to explain the consequences of it not being licensed. I have found it very effective for libido 😁but also for brain sharpness/brain fatigue.

I don;t understand why it’s not licensed: it is in plenty of countries and there don’t appear to be any obviously significant side effects. I suspect other issues are higher up the NHS agenda.

I've just been told I can only have it for libido loss (I don't have a partner and don't have this) but not for the other much more significant symptoms including joint pain that has impacted exercise, night sweats and anxiety which my hrt isn't managing along with other symptoms. My bloods show low testosterone but I can't have it on the nhs. This seems to me a policy that so deeply flawed. Why should sex drive be prioritised over other symptoms? And if I go private is this something that is going to take a bit of a wait? I'm not even sure where to start to sort this. My gp has told me I can go private to 'see if testosterone helps'.

@marlowe5 I just said I had lost libido, I mean I have but it isn’t an issue for me. I wanted it for the other things you say. I felt I had to play the system.

Yep. My problem is I told the gp I hadn't. I'm now going to have to invent an immediate relationship which has progressed rapidly I think. It will be so obvious!

My GP suggested it for tiredness. I’d never mentioned libido.

Unfortunately, so far it doesn’t seem to be having much affect on either.

@marlowe5

When I got a prescription for testosterone due to low libido, I was not in a relationship either. My loss of libido related to the fact that I couldn’t achieve orgasm through masturbation.

Apologies if TMI!

My GP offered testosterone to me some years ago when I was mid-peri. I chose not to have it at the time, and never went back to ask again. I don't know whether it would have made a difference or not.

Trying to get doctors to take menopause symptoms seriously is the real issue, and until we've got that sorted out, it isn't going to help matters by adding another issue.

@LadyCathdeBourgh can you let me know which clinic you used as the Superdrug service charge me £18 for THREE sachets! Thanks in advance

No. It should most definitely be considered as part of HRT but it doesn’t work for all women. It is better to get oestrogen and progesterone levels balanced and then add on the testosterone if it is felt it’s needed.

I felt significantly worse after starting testosterone and had awful side effects - acne, grew chin whiskers and became extremely aggressive. Did nothing for mental clarity or libido and I stopped it after 6 months.

For some women it’s the holy grail, but for others (like me) it made things worse.

All bodies are unique and will need different combinations. We should be expecting to be offered an HRT package that includes all options to get the right mix on a personal basis.

@MyaStorm I go to a private menopause clinic in the South West. Happy to pm you the details if that's your area. They use an online chemist called CloudRX for their prescriptions.

You can see your GP. Tell them you have low libido and would like to try testosterone as you’re on HRT and that hasn’t sorted the issue out.

If they say they can’t prescribe it, ask to be referred to a menopause clinic or gynaecologist so they can prescribe it. If they say they won’t do that, ask them how you can access the NICE guidelines, which are that testosterone should be made available off licence on the NHS. Take a copy of those guidelines with you if needed.

If you want to tell them you have had it prescribed privately, you can. Ask them if they will prescribe it for you on that basis, as you’ve already been assessed by the private clinic. They might want evidence - letter etc which you might have to pay for.

Dont be fobbed off. If they won’t progress it for you, ask who you can speak to about it further as you understand you are entitled to be considered for it under NICE guidelines.

An update: my GP referred my situation to the local gynaecology dept who authorised the prescription of testosterone because I'd had it prescribed privately previously. All good.

That’s good news. Sense prevails.