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[duffed]

I've been taking Tostran gel for the past year or so, along with 300mg utrogestan and evorel 75 patch

My recent blood test came back with Free Androgen index of 26.4% (Serum testosterone 9.5 nmol/L and SSHB 36), which is a huge leap from a testosterone level of 1.2 nmol/L In July 2024. I know my hormones were tested again in March and August this year, but I don't have the results for these - only that the march one was described as unremarkable in a letter.

 is Tostran gel alone enough to do this, or does this mean I likely have an underlying condition? I've been using 1 pump every other day, probably 3 times a week generally. I've not seen anyone else with such a high FAI so wondering whats going on.

I've got a doctors appointment booked to discuss the results, and assuming I have to stop using the gel.

I have primary ovarian insufficiency, and know I have adenomyosis if that's relevant.

[bombsh3ll]

Do you have any clinical signs of overtreatment with testosterone?

In the first instance when a blood test is grossly abnormal like this without explanation or clinical correlation, the best thing to do is repeat it.

Make sure you do not apply testosterone gel the morning of the test, and that you have showered since last applying or handling it.

If you had normal results in march and august (which begs the question why are you testing it this often) then it is unlikely anything has changed so dramatically in that short space of time.

[duffed]

Thanks for your reply - I get my hormone profile tested frequently I think because I'm only 35, so have been under the consultant gynaecologist at the hospital, they test all my hormones each time I visit and they've been tweaking the hrt its only recently been handed over to the GP to prescribe instead, Its possible the last test from August was abnormal but I wasn't told about it I suppose.

My blood test was on a Friday morning just after the school run, and I had last used the gel on the Wednesday so I'm pretty sure there wasn't a contamination.

I don't feel like I'm showing any outward signs - I've got no new body hair growth, my hair has been falling out less than it used to, If I really stare in the mirror I have a very fine blonde moustache but my partner can't see it  (or he's just very wise!), and I think I've always had that. I've got sex drive and sensation - but that's the reason I'm taking it in the first place, as when I was prescribed it was because aged 33 I'd lost sensation and interest in sex. I've always had a pronounced voice box, but that's the only masculine feature I think I have. 

[duffed]

Had the Gp telephone appointment today (which they asked me to make), and it was absolutely useless.

They would not give any advice about if I should stop using it and just kept saying they didn't think they needed to do anything and that I should ask the specialist.

I was asking if its possible I have a health problem causing the elevated levels, as they seem so much higher than other menopausal women using Testosterone, but he didn't seem to think that query was anything to do with him.

I'm now feeling quite stressed. The consultant is almost impossible to contact outside of appointments so it could be a few months before I get seen again, and in the mean time I'm meant to figure out by myself if I should keep taking it or not.

[Hurdity]

Hi duffed

So sorry to hear about the poor treatment you have received  about your very high testosterone level. Yes it would be unusual and as bombshell my first thought was that it is so extreme ie so different from the last one and so way out of range that it MUST be repeated.

Also the fact that you havent been given your other blood test results.

So here is what I would do:

1 INSIST on being given your previous blood test results - it's no good the specialist handing you over to the GP if there isn't any joined up thinking on your treatment and condition (POI). In my practice (rural SW England) we have access to our online records and most surgeries I think have this facility.  I always look at my results for anything or any consultation, online afterwards. That being the case maybe your records have been transferred to your GP. If you can - have a look. If not then contact the admin person at the hospital and ask for those earlier ones. Remember this is YOUR data and YOUR body and you should be given them

Once you have this you will be in a better position to know if it has been gradually increasing or increasing suddenly. However if it has been satisfactory up until now then maybe it is a sudden increase and even while waiting for this:

2 INSIST on another blood test. Whatever your GP says. Was the blood test carried out at your GP surgery by your GP? If so then it is their responsibility to follow up on an abnormal blood test so I would if possible speak to someone else in the practice and try to arrange another test. If they dont want to arrange a test then if they are absolving themselves of responsilibity for your care and only taking on a prescribing role - then they MUST do something about the abnormal test - ie refer you back to the hospital - that is their job not yours but of course you can hassle them - though it's terrible that you have to.

3 If the blood test was carried out through the specialist consultant - then it is their job to follow up and either repeat the blood test or investigate further.

You've probably heard of Polycystic ovary syndrome (which is associated with high androgen levels) which has some links with POI but as I understand that the former can lead to the latter not the other way round - but I'm no expert! Also if your androgen levels have not been high up until now, and you don't have androgenic symptoms then this is probably unlikely - but something to ask at least.

Try not to stress and depending on your answers to the above make the appropriate contact. The administrator or secretary at the gynae department should be able to advise if necessary?

Incidentally how much Tostran are you using?  It may well be that dose is too high though as you are young perhaps not?  My only observation is that your oestrogen dose is quite low for your age - if you rarely ovulate? And the progesterone dose is unecessarily high though there may be a medical reason for that? Possibly because of the adenomyosis?  200 mg per 4 week cycle should be sufficient. I am in my 70's and I have a 75 mcg patch though I don't absorb brilliantly at my age!

All the best and hope this helps - do try not to stress!

And please keep us posted!

Hurdity x

[duffed]

Thank you for your message! I've managed to speak to the consultants secretary at the hospital today, and have emailed over screenshots of my test results, they are going to see if they can catch the Doctor to take a look at them. I think the GP should have sent them directly rather than getting me to email photos, but I have faith the consultant will tell me what I need to do - either to alter the dose, stop the gel or go back to the gp to explore other causes.

I use one pump of tostran every other day - and to be honest I often forget and skip a dose. There's no way I've been accidentally overdosing, as its not fiddly like with testogel where you have to measure it out.
I don't have periods anymore, but had a lot of bleeding once I started HRT, which is why I take 300mg progesterone now- 100 and 200 wasn't enough, just seem to be quite sensitive to estrogen. The 75 dose was enough to stop my symptoms and my levels get checked every few months so I think its the right dose for now. My ovaries are likely still producing a little bit of estrogen themselves, so in future we'll probably need to up the patches but if we did it now the bleeding is likely to start again, and the only good thing about having POI is being able to wave goodbye to periods much sooner!

I use the nhs login to check results, but I can only see letters from my consultant to the gp and any test results carried out by the gp, not ones from the hospital. I don't think my gp can see these either.  The consultant will be able to compare my previous results at least, but I will ask if I can see them too!

I'm still under the gynaecologist at the hospital for POI monitoring, they've just handed over the job of prescribing to the Gp if that makes sense. This set of blood tests was ordered by the GP as they prescribed the last bottle of Tostran, and was carried out at the local community phlebotomist - the Gp clinics in our area don't do bloods themselves and everyone goes to this hub for it instead.

I have of course googled all the issues it could be - PCOS is a possibility, I always had irregular periods in my fertile life, often twice monthly, but I'm not particularly hairy. I had two pelvic scans this year, so don't think I have cysts on my ovaries. The other thing I wonder about if its an adrenal gland issue, this is what I really want to be ruled out.

[Hurdity]

Thanks for the update and hope you manage to get some answers. Sounds like you're well on top of things anyway!

Hurdity x

[duffed]

I heard nothing for 2 weeks until I put in my repeat prescription request for the rest of my HRT, which the GP rejected as it wasn't clear from my notes what to do about the blood test results. This triggered the GP to send an advice and guidance request to the hospital, and they got back a few days later saying to stop Tostran gel for now and retest in a month. Clearly something the original GP should have done!

I don't think the GP should have stopped the rest of my HRT, and am currently trying to get it back. All my communications to the gynaecologist have been ignored so far, queries I've submitted to the GP just seem to ignore the fact they've stopped my oestrogen and progesterone and just talk about the testosterone only. I'm currently using estrogen alone as I had patches left, but without any progesterone protection as I ran out of this - and I'm so worried about going without - I had lots of bleeding earlier in the year and had scans to check lining etc so I know this isn't good, but I also need to stay functional and be able to work (I'm self employed, so I can't stop even when I feel like death).

[bombsh3ll]

I would put in a written complaint, this is clinically unjustified, and ask for an urgent appointment with the GP most experienced in women's health face to face.

Unfortunately you may have to self fund treatment in the interim depending on how much you have left, but it is better than going without.

[duffed]

Its so exhausting having to fight for basic care isn't it? I've put in another prescription request and sent another medication query to the pharmacist at the gp and hoping that prompts some action. The Gp only has emergency appointments available and the receptionist isn't keen to let me have one for hrt. I will issue a complaint if its not in this week, I just don't want to complain if that's going to cause them to be less inclined to help me?

 I'm happy to pay for the hrt, its more about how to access it at all -would i need to find a private gp, or would an online pharmacy dispense it?

Thank you for responding, its all sent me into such a confusion and panic.

[bombsh3ll]

I would go to an online private menopause clinic if you are able to afford it.

Also I wouldn't be so timid with your GP,  you need to be more assertive and demand a face to face appointment on the grounds that essential treatment which is keeping you physically and mentally well enough to work has been inappropriately abruptly and unilaterally withdrawn without any discussion or consideration of the impact on your health.

It is no good just meekly slipping them prescription requests.

Often it is when they realise they are dealing with an equal, someone articulate and educated who has agency over their health and will not accept poor care, that you are treated with a bit more respect, and it shouldn't be the case, but it is.

[duffed]

Well if anyone is interested in the drama I had a response to my request saying I was triaged as needing a a telephone call in 4 weeks.

I put on my big girl pants and called and politely asked to speak to the manger, the receptionist didn't let me do this but did book me in for a telephone call within 1 week instead, which is better I guess?

I did say it doesn't seem right for me to need to suffer for another week for something that isn't clinically necessary, and she said the specialist had stopped the hrt - which they haven't! I got her to reread the letter from the specialist,. She said the call next week was all she could do.

I'm waiting to see if the current prescription request is rejected and if it is I said I will need to call back to make a formal complaint, as it doesn't seem right that I've not been given any advice or explanation of why the hrt is being withheld, and haven't even been told to stop.

I also called the gynaecologists secretary again and left a voicemail asking if they could send a letter to clarify the guidance, or prescribe themselves directly to me. But they very rarely respond to me so I'm not holding my breath.

[bombsh3ll]

I would submit a formal complaint in writing at this point, detailing all the points you have made here, including a copy of the gynaecologist's letter.

I would send one copy to the practice manager and lead GP, one to the health board and one to your local MP.

This is a lot harder for them to ignore than just speaking to a receptionist on the phone who isn't clinically trained and is essentially just firefighting, fielding calls and trying to fend off as many patient contacts as possible.