Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: sheila99 on April 28, 2018, 10:12:42 PM
-
Looking for suggestions please. My GP won't prescribe testosterone even though I have the symptoms and it is allowed by NICE. She referred me the local meno clinic - waited 3 months - saw someone who knew less about it than I did - referred to the actual meno clinic - no appointment yet but not for at least 3 months. I don't know if they will prescribe it or not but 6 months is an unacceptable time to wait, so I intend to go back to the GP again. If she still refuses how do I escalate it? Particularly interested to hear from anyone who has been in this position and been successfull.
I could go private but don't see why I should for something that should be prescribed on the NHS.
-
GPs do not have to prescribe testosterone as it is not licensed for use in women.
-
Catch 22. They won't prescribe it because it isn't licensed for women, and the manufacturer's won't get it licensed because GPs don't prescribe it. Looking at the guidance for unlicensed medicines which puts the responsibity on the GP I can't blame them for refusing. Seems I'll have to throw in the towel and book a private appointment.
-
Has your blood test showed that you are low enough for a GP to even consider it?
Also: how did you go to a Meno clinic that actually, wasn't ? Did you tell your GP!?!
It would be un-ethical for a GP/consultant to prescribe something not recommend for women by NICE . Off Licence may work but pros and cons must be explained so that a patient can make an informed choice. I was told that testosterone would lower my voice.
-
I feel sorry for you sheila99, I'm in the same position.
I'm struggling to find a GP in York who understands anything about menopause and its treatment. I know much more than my very young female doctor.
@CLKD NICE allow for it to be prescribed to women, the link to the page is here: https://www.nice.org.uk/guidance/ng23/chapter/recommendations (Section 1.4.8 ). The prescription amount is much lower for women than men, but women who have not yet hit peri produce twice as much testosterone as estrogen. The amount should not affect your voice. Btw blood tests are not a reliable way to test as the levels fluctuate and it needs to be done by an expert as there is a formula to follow. I'll try to find it.
-
:thankyou:
-
Also: how did you go to a Meno clinic that actually, wasn't ? Did you tell your GP!?!
GP says she referred me to the meno clinic. Seems it was actually a general gyno clinic so the doctor I saw there has referred me to the real is the meno clinic. Perhaps I'm cynical but it appeared to be merely an exerceise in massaging the statistics (I am getting more and more cynical the more I know about the lack of meno treatment!).
I suggested testorone level test to the GP but apparently they don't do that either. No surprise there - if it showed I was low they might have to do something about it!
-
sheila99 - it sounds like manipulation to me from where I'm sitting. I would be writing to the Practice Manager, copy to that particular GP about the waste of public money!
How are you today?
-
CLKD, I think it's the hospital at fault here not the GP, perhaps a long wait for meno clinic so they give you an appointment with anybody so they can say they met the timescales. I had an appointment with a different GP (not the meno 'specialist' who was unavailable) so now I have oestrogel and utrogestan. Ha ha, progress via the backdoor! ;D Had problems getting patches to stick so think I was under-dosed.
Feeling really rough now, I haven't been to bed before 1:30am for the last 3 weeks as we're lambing. Only 3 left to lamb so hopefully not for much longer.
-
I agree 100% we shouldn't have to go private although I eventually decided to as it seemed to be the only way to get access to expert advice. My HRT was increased and it was suggested I try testosterone as my levels came back low and high SHBG and I have all the symptoms of low testosterone. It took me ages to take the plunge and go for it and it annoyed me that there was no support and that I had to travel a long way to find a good doctor but I'm so glad I did even though it was expensive. In fact I wish I'd done it years ago rather than going though all the stress and upset of trying to get support in my local area during that terrible time. Things are slowly improving for me now. I hope eventually gp's will catch up but I couldn't wait any longer.
I hope you manage to get testosterone or at least the opportunity to see a doctor on the NHS open to women using it.
Keep us updated Sheila
Good luck
Robin
-
sheila - a referral from the GP is sent to a specific Consultant's Clinic.
-
Hi sheila99
Testosterone testing is not always (necessary to be) carried out before prescribing T as doctors should go on symptoms - the most obvious being lack of libido (provided the woman is not taking other meds which can reduce this eg oral HRT or some ADs) coupled with lack of energy, muscle fatigue and general lethargy - other reasons having been ruled out eg vit/mineral deficiencies, underactive thyroid etc. I gather it is normal practice - or should be - to monitor T levels once T therapy is started just to check on over-dosing - especially as response time can be a matter of months.
The test for T in women is not sensitive, as I understand it is the same test as used for men and therefore less accurate at the bottom of the scale - which is where women will be.
@CLKD NICE allow for it to be prescribed to women, the link to the page is here: https://www.nice.org.uk/guidance/ng23/chapter/recommendations (Section 1.4.8 ). The prescription amount is much lower for women than men, but women who have not yet hit peri produce twice as much testosterone as estrogen. The amount should not affect your voice. Btw blood tests are not a reliable way to test as the levels fluctuate and it needs to be done by an expert as there is a formula to follow. I'll try to find it.
Also the usual measure I believe, is total testosterone which is not a reliable indicator oof bio-available T since much of it is bound to SHBG (google this!). A good doc should also measure SHBG and the formula I found on the web is for the Free Androgen Index (FAI) which is: Total testosterone x 100/SHBG (measured in the same units). Even so as you say, one test alone is not really indicative but as I said monitoring after starting T is important.
I did have a private consultation to obtain T but this was before the NICE Guidelines made provision for it to be prescribed off-licence. I am lucky to have a GP who will now prescribe it on NHS and I got my box of Testim today - should last me at least a year ::). The inequitability of the system is appalling....ie some can and some can't access this treatment on NHS.
Hurdity x
-
Hi Hurdity I'm thinking of asking about testim as even though I'm doing ok on the Oestrogel and vagifem I've still no libido( I'm talking years)I'm really tired and exercise does knacker me.my blood tests are abnormal apparently and vit d is too low so I've got gp in morning,what would I ask for as they're even more clueless than I am and as I've said before everything's a battle.any advice would be appreciated thank you.xx
-
Get the VitD levels upped Daisydot, my GP prescribed capsules to be taken for 3 months and after 5 weeks I felt so much better. Let us know how you get on.
-
Daisydot.... you need to ask if your GP will prescribe testosterone for lack of libido, but as you had so much trouble getting hrt I would doubt that they will prescribe it!
-
Good advice ladies thank you it'll be an interesting appointment again I haven't slept all night stressing myself about it I really despise going now for anything it's only because of blood test results I'm going or I wouldn't bother,it's ridiculous.xx
-
Good luck Daisydot x
-
Thank you Robin xx
-
I managed to see a better GP yesterday, at least she knew what I was talking about when I mentioned utrogestan and estrogel. She also agreed to prescribe Testim, BUT...it's on amber alert! I'm not sure if this is a surgery or Health Authority thing. It means only the consultant can prescribe it. Has anyone else seen that?
She's going to write to the Consultant and ask for permission to prescribe it. So, fingers crossed but it still feels like I'm going to have to go private. I'm having to take time out of my PhD as the brain fog is unbearable and I just can't do academic work at the moment :(
-
CLKD you are not referred to a named consultant in our area and you get no say in choices,it's a referral to PCOC where it's pot luck you'll get a decent gynie,they do massage the system I've just had a phone call offering me a cancellation for Thursday but I've been passed around since December waiting and hoping I'd get seen by a meno specialist which I ended up paying to see in January.ive accepted the appointment as I'm a lot better prepared now than I would have been before going private.let the nhs pay this time I still have issues gp is not helping with.x
-
That sounds to me like covering waiting times then Daisydot. I know that patients can ask for specific consultants in other areas if the Health Authority will pay.
What's PCOC?
-
It's a collaboration of gps and specialists services where the specialist is usually working in a local medical centre say two days a week and the other days working in the local hospital I don't really get why because if they're available at a gps health centre then they are available to work in the hospital.my husband was referred for a heart check and saw a specialist nurse not a cardiologist as you would expect,massaging numbers or waiting times his appointment still took 13 weeks to happen.I was told I'd be seeing a gp with a special interest in women's health not the gynie I'd requested so I'm going on Thursday and I'm expecting him/her to be bloody good and not waste my time or my private consultants time and I will not be going against the advice of my private consultant,should be an interesting day.by the way it's not about ease if access as far as location goes as it's the other side of the city compared to my local hospital,it was the same with the eye consultant I saw and funnily enough my follow up with him is at the hospital,I don't understand the logic to this.
-
I saw a gynae today who has prescribed T but it was an NHS appointment and the script he gave me was a private one which would have cost me £43. He said he would write to my GP to prescribe this on a regular basis. I took the script to my GP and asked can it be changed to a NHS script they ummed and why and said they would let me know. This same GP ignored the fact I had lichen sclerosis and other menopausal symptoms so I can see a problem with him prescribing Tostran. If he doesn't then I will take the tactic that he ignored my LS. Never investigated my low mood but just threw anti depressants at me. Or tested my thyroid thoroughly either. All menopausal symptoms. And if I can get away with it sexism, ageism etc. He even laughed at my UTIs everytime I went in with a sample over a 2 year period. I've just been left and left until I went to a proper doc who specialises in menopause and got the help that I needed. I will seriously slam this GP surgery.
-
I have the solution - http://www.overcountertest.com/ Tongue firmly in cheek, it looks a bit strong to me. I don't really want a beard & a deep voice. Found this by investigating trans hormones. Male to female hormones available over the counter, female to male - you've guessed it - prescription only! Why am I getting a complex?