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[Emmasky]

Hello there. This is my first post and I’d be very grateful if anyone can shed some light on my query. 

Has anyone come across the change in testosterone level guidance updated in May 2022 by the British Menopause Society?  See the monitoring section of the Testosterone replacement in menopause tools for clinicians document on the BMS website. Link below.

The updated range is based solely on levels being within 0.50 - 2.60 nmol/L, whereas before it was to keep the free androgen index (FAI) within the female range of below 5% (calculated using testosterone divided by SHBG x 100). 

For example my last test was:
plasma testosterone level 3.6
SHBG 129.8
FAI = 2.77%
So previously having the FAI of under 5 was normal but I am now considered too high as my testosterone is over 2.6.

I assume this must lead to a future recommendation of changing the dosage of androfem and Tostran etc accordingly.  If not many of us taking testosterone could now be considered technically too high based on these new guideline levels.

Is anyone else aware of this and/or have you been effected by these changes.  Other than the BMS website I can find no reference to this.

https://thebms.org.uk/publications/tools-for-clinicians/testosterone-replacement-in-menopause/

Due to this update my GP has now stopped my testosterone prescription of 1 pump of Tostran on alternate days  ( I am still on 2 pumps Oestrogel and Utrogestan daily ).

It seems like a backward step as I had just found the perfect balance after about 4 years of trying various different types and combinations of HRT.  I started testosterone at a private clinic and then got a referral to an NHS menopause clinic for continuation of testosterone prescribed off licence by my GP.

Thank you in advance if anyone can support me here as feeling rather frustrated and alone.

[Flan747]

Hi Emmasky, yes I’m under Menopause care and my specialist reduced my dose as they now go by the total T only and mine was slightly higher than normal even though my FAI was really low. They follow the guidelines which I suppose is a good thing to protect us. I’ve stopped it for now due to trying to work out if it is the T that is causing my anxiety? Probably not but trying every different regime to find an answer!

[sheila99]

Grrrr  As if we didn't have enough trouble getting it already. I'm on 1 pump Tostran every other day and it's the right dose for me too. I didn't get the numbers from my last test but I wonder if it's a way to make sure even fewer women can get it.
So does anyone know how many days to stop it for so the blood test shows some but not too much?

Flan - my anxiety was oestrogen deficiency, I don't think it's a known symptom of testosterone.

[Flan747]

I think you’re right Sheila, will slowly introduce it again, it was just an idea instead of keep increasing the O? X

[Hurdity]

Hi Emmasky

 

I wasn't aware of any change in BMS guidance and if this has changed then it's because it was omitted previously. In fact now I come to think about it, there maybe wasn't anything about monitoring before which of course there should have been.

This is all very difficult because there is no licensed T product on the market available through NHS for women.

We are women and the most important thing for us is to keep our total testosterone levels within the range for women. The Female Androgen Index is an additional measurement and is helpful for libido because a lot of testosterone is bound to a compound known as SHBG, so the FAI acts as a proxy measure for free testosterone, which is not measured in NHS tests.

So I would say both are important - but I would ask for retest also.

Also from what I recall the guidance from the Chelsea and Westminster clinic used to be to take Tostran 2 x per week as a starting dose and the guidance is now 3 x per week. Tostran is more concentrated than  some of the other T gels. I use Testogel 1 % but this is not available any more so when I run out I will have to go to a stronger one...

It really is a poor show isn't it, that there is STILL no product available licensed for women!! We need proper research and MUCH weaker preparations so that dosing can be more accurate with different quantities of gel, and adjusted more easily so that we can both feel good and remain within range.

Why can't you just reduce to 2 x per week? Gradually eg reduce to 3 x per week, then 2 x.

Also if you have a retest - your result is likely to be higher if it was taken on the day you applied the T gel - and also may depend where you applied it and how? Which part of the body compared with where the blood was drawn from.

Hope this helps and all the best - let us know what happens.

Hurdity x

[Emmasky]

Thanks Flan and Sheila.

Yes I have found the menopause journey to be two steps forward, three steps back. And just when you think you’ve got it sussed someone comes along and moves the goalposts!

When I was started on estrogen and progesterone I immediately felt so much better. No more hot flushes, night sweats, anxiety, low mood, insomnia and aches and pains.  But I still wasn’t 100%.  It was the testosterone that was the missing piece and improved my brain fog and stamina.  I can now read a book again and play four sets of tennis rather than two.

So to have it taken away is hard, particularly as I’ve never felt better!  So I’m still taking it but a slightly lower dose of one pump every three days as suggested by my private meno clinic.  I have about a two year supply of Tostran left - I’m hoping that by then more research will have been carried out and Androfeme will be available on the NHS and therefore the GPs will be confident, knowledgeable and willing to prescribe it. 

I don’t think my GP is best pleased that I’m still taking it but I’m unable to get a FTF app to discuss in depth. I. Not totally comfortable with this as I like to work with them but have to put myself first.  My own research and gut feeling tells me to continue as I have no (negative) side effects and can find no evidence of what harm it could do long term.  Unless anyone has any different views I’d be very grateful to hear.

Thanks again, it nice to be able to discuss it with others as I don’t know any women within my circle of friends and family that take testosterone as part of their HRT regime.

[Emmasky]

Thanks also Hurdity. You make some very good points - most helpful.  I shall continue with my lower dose and it’s true that blood tests can certainly vary and we should also be mindful of our symptoms x

[violetbat]

My gp insisted on another blood test before reissuing me with trostan. He told me not to apply the gel at all on the day of the test.
When my levels were initially tested the report came back as normal BUT when I consulted the lovely ladies here and understood how to interpret it it turned out that my levels were very low.
Of course no one has bothered to get back to me with the latest results and that was over a month ago🤔

[Emmasky]

Hi Violetbat
I understand the frustration so take control yourself - since November 2022 you can now gain access to your own current and historical medical records, including blood test results, prescriptions etc….
I’ve attached a link here, it’s done through the NHS app, you may need to complete an agreement form at the GP too for the full records.

https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-get-your-medical-records/

Everyone should do it !