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NHS muppetry - need advice

654 views 27 replies 8 participants last post by  Wildkid 
#1 · (Edited by Moderator)
So, long story which I'll try to make short...

Had a really low sex drive for years. Poor erections, would often lose it in the time it took to put on a rubber etc. Low energy too, although I didn't really know much different.

NHS doc kept trying to prescribe SSRIs and said unlikely to be testosterone related as I had a sizeable beard (wtf!). Managed to get a test done and he said it came back negative.

Went to Leger Clinic and Dr Savage immediately said it looked like textbook low T and said happy to trial. Made a huge difference! Basically gave me back my life.

He wrote to my GP who again said no but agreed to do my bloods. When I changed GP they asked why I was going private and agreed to treat me on the NHS.

Two years later, I've moved surgery and they've immediately said I need to be referred to a consultant endocrinologist. I'm not hopeful!

My original reading was 9nmol, which puts me at the bottom of the 8-12nmol 'borderline' range where treatment can be considered - <8nmol is classed as conclusively deficient by my understanding.

Problem is that the NHS lab which my previous doc used had 8nmol as the threshold. I've done my research and the British Society of Sexual Medicine advise that 8-12nmol is treatable. So does an old NHS TRT guideline document I found from Barnsley PCT, published before the NHS was all centralised. If you look at the recommendations on the Nebido website (in the 'for doctors' page) it also says the same 8-12nmol range.

Problem is that I'm worried they'll go by the outdated <8nmol. I expressed this concern and my new doc said I might have to go private if I want it. I can afford this but I hate the idea, especially in the current financial climate where employment can be less than secure. Also because I feel that I'm a genuine candidate.

So any advice on how to play this?

It'd be one hell of a coincidence if my symptoms had just miraculously vanished shortly after starting TRT, but of course my doc will likely just doggedly follow the procedure and 'treat the numbers rather than the symptoms' as Doc Savage puts it.

If they stop my TRT, I'm wondering whether I should go back and explain that all my symptoms have returned and ask them what the next step is, put it in their court. But I'm worried it'll just go down the whole lifestyle/depression path again which is bullshit as I still had the problems when training Thai boxing 4x a week and being extremely fit etc with low bodyfat.
 
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#2 · (Edited by Moderator)
I would stand your ground on this. They're wasting their own resources and causing you stress.

You tested low enough according to bssm guidance that you deserved a trial of trt. You went on trt under the care of one of the most experienced mens sexual medicine doctors in the UK who is on a UK advisory panel and the symptoms went away. You've not mentioned any negative side effects which would warrant seeing an endo. It just seems gratuitous. Did you change docs because of moving house or something? Sounds like your previous doc was a keeper!

Might be worth getting dr savage to write to this new GP and see if they back down? He's more experienced in matters of TDS than any endo at a local hospital who in my experience are always diabetes specialists.
 
#4 · (Edited by Moderator)
To be honest you're in the same boat as so many others and it's extremely difficult to get TRT on the NHS, especially over 8nmol. You should absolutely exhaust all efforts with them before going private but honestly in my experience, it's just a s**t show with them, despite guidelines and suggestions Of trials In the borderline range.

I'm also with leger. £190 year. sustanon £140 year so £330. I Gave up on NHS And thought f**k it. Gp agreed to do my bloods which I saw as a success.
 
#26 ·
To be honest you're in the same boat as so many others and it's extremely difficult to get TRT on the NHS, especially over 8nmol. You should absolutely exhaust all efforts with them before going private but honestly in my experience, it's just a s**t show with them, despite guidelines and suggestions Of trials In the borderline range.

I'm also with leger. £190 year. sustanon £140 year so £330. I Gave up on NHS And thought f**k it. Gp agreed to do my bloods which I saw as a success.
How often do you do your blood test and what is your dosage and levels?

330 works out less then 30 a month if NHS put you on gell you pay 2 presproctions so around 20 anyways 10 extra to maximise the benefits is worth a short I was thinking after 1 year or so once you find you balance and learn to know your body you could get pharma grade ugl and drop the clinic that will drop your expenses to around 100 par year if not less
 
#5 ·
Thanks guys, really appreciate the advice.

It'd be an easier pill to swallow if I was conclusively outside of the NHS treatment range, but I've read a few NHS docs as stated above which put me in the treatable range - aside from the Barnsley PCT one I found another which had the healthy reference range as 10-30 nmol.

What I'm not sure of is whether the NHS have a standard reference range now they're centralised, which would make it pointless asking for a second opinion - previously it depended on which doctor you saw from what I've read, and what the range used by that PCT was.

Knowing I can be treated for £330 is comforting though. When I was with Leger they did my consultations over the phone due to the distance and didn't charge me (only paid for initial consultation and the sustanon). I had assumed it would usually be a fair bit more expensive.

My new GPs reason for reviewing it was that according to him it can't be prescribed without the approval of a consultant endocrinologist and that Dr Savage was 'just a GP with an interest in TRT'.
 
#6 ·
Thanks guys, really appreciate the advice.

It'd be an easier pill to swallow if I was conclusively outside of the NHS treatment range, but I've read a few NHS docs as stated above which put me in the treatable range - aside from the Barnsley PCT one I found another which had the healthy reference range as 10-30 nmol.

What I'm not sure of is whether the NHS have a standard reference range now they're centralised, which would make it pointless asking for a second opinion - previously it depended on which doctor you saw from what I've read, and what the range used by that PCT was.

Knowing I can be treated for £330 is comforting though. When I was with Leger they did my consultations over the phone due to the distance and didn't charge me (only paid for initial consultation and the sustanon). I had assumed it would usually be a fair bit more expensive.

My new GPs reason for reviewing it was that according to him it can't be prescribed without the approval of a consultant endocrinologist and that Dr Savage was 'just a GP with an interest in TRT'.
You could always go down the route I've gone mate. I initially got my own blood test done to find out I'm low on T. I went through the NHS but didn't want to have to wait months to be put in touch with an endo so I ended up booking a private endo for £225. He then prescribed me onto TRT and is now forcing me through the NHS.

I've spoken with my local NHS GP and she is more than happy for me to self administer at 125mg of sustanon every week rather than their usual approach of 250mg of sustanon every 3 weeks and I've just kept her update with what's going on with the private endo until it switches over.
 
#7 ·
So, long story which I'll try to make short...

Had a really low sex drive for years. Poor erections, would often lose it in the time it took to put on a rubber etc. Low energy too, although I didn't really know much different.

NHS doc kept trying to prescribe SSRIs and said unlikely to be testosterone related as I had a sizeable beard (wtf!). Managed to get a test done and he said it came back negative.

Went to Leger Clinic and Dr Savage immediately said it looked like textbook low T and said happy to trial. Made a huge difference! Basically gave me back my life.

He wrote to my GP who again said no but agreed to do my bloods. When I changed GP they asked why I was going private and agreed to treat me on the NHS.

Two years later, I've moved surgery and they've immediately said I need to be referred to a consultant endocrinologist. I'm not hopeful!

My original reading was 9nmol, which puts me at the bottom of the 8-12nmol 'borderline' range where treatment can be considered - <8nmol is classed as conclusively deficient by my understanding.

Problem is that the NHS lab which my previous doc used had 8nmol as the threshold. I've done my research and the British Society of Sexual Medicine advise that 8-12nmol is treatable. So does an old NHS TRT guideline document I found from Barnsley PCT, published before the NHS was all centralised. If you look at the recommendations on the Nebido website (in the 'for doctors' page) it also says the same 8-12nmol range.

Problem is that I'm worried they'll go by the outdated <8nmol. I expressed this concern and my new doc said I might have to go private if I want it. I can afford this but I hate the idea, especially in the current financial climate where employment can be less than secure. Also because I feel that I'm a genuine candidate.

So any advice on how to play this?

It'd be one hell of a coincidence if my symptoms had just miraculously vanished shortly after starting TRT, but of course my doc will likely just doggedly follow the procedure and 'treat the numbers rather than the symptoms' as Doc Savage puts it.

If they stop my TRT, I'm wondering whether I should go back and explain that all my symptoms have returned and ask them what the next step is, put it in their court. But I'm worried it'll just go down the whole lifestyle/depression path again which is bullshit as I still had the problems when training Thai boxing 4x a week and being extremely fit etc with low bodyfat.
I would stand your ground on this. They're wasting their own resources and causing you stress.

You tested low enough according to bssm guidance that you deserved a trial of trt. You went on trt under the care of one of the most experienced mens sexual medicine doctors in the UK who is on a UK advisory panel and the symptoms went away. You've not mentioned any negative side effects which would warrant seeing an endo. It just seems gratuitous. Did you change docs because of moving house or something? Sounds like your previous doc was a keeper!

Might be worth getting dr savage to write to this new GP and see if they back down? He's more experienced in matters of TDS than any endo at a local hospital who in my experience are always diabetes specialists.
I'm afraid his GP isn't going to care how experienced Dr Savage is...or at least the vast majority of GPs won't

The 8 nmol cut off point is there to save the NHS money...pure and simple...and as long as that benchmark exists it will be exploited to keep Dr's under budget...compounded of course by a massive lack of knowledge in British GP's

Apparently there is something to do with Aston Martins which disproves what I'm saying, but I'm not sure what lol

@Nautilus if they stop your trt mate I wouldn't even bother fighting it...unless of course you want to go through months of feeling like crap

Self administer an inform your GP. They still have a duty of care to ensure you do this safely
 
#10 ·
Ok, so as an update I've received a letter from my new GP saying 'as expected, the endocrinology unit do not support the use of testosterone supplementation in this case, but they are happy to have a meeting to discuss this and will hence be sending across an appt date.'

So, firstly, I'm wondering if it's even worth taking a day off work and losing £200 to have a meeting which will be unlikely to go anywhere. But I'm also keen to hear their reasoning. If they don't support the use of testosterone in this case then what treatment would they suggest for a low sex drive and ED caused by low testosterone? At one point, when I was training Thai boxing 4x a week, I had close to 10% bodyfat and was incredibly fit with a good diet and 8 hours sleep a night, so I don't think lifestyle factors were likely an issue. Also had all my bloods done and checks for thyroid, pituitary etc.

What frustrates me is that I've got three NHS docs on my phone which state that 10-30 nmol is a healthy level, and when I was first told my levels were ok (before going to see Leger Clinic) I was only 0.3 nmol above the cutoff - I was at 9 and cutoff was 8.7.

My main worries are affording treatment should I lose my job in these unstable times, or worst case scenario, accidentally killing somebody in my truck and going down for CD and not being able to get NHS treatment - a highly unlikely but possible scenario.

I don't understand what their reasoning is. Am I supposed to just accept a life without sexual function despite their own documentation telling me I'm deficient and the fact I'm clearly showing symptoms (and have a diagnosis from one of the best in the UK)?
 
#11 ·
If they don't support the use of testosterone in this case then what treatment would they suggest for a low sex drive and ED caused by low testosterone?
I'd put good money on it being viagra (and/or clomid) to be honest. That's what they suggested for me, Stating More sex = more natural test, that's true of course but is that a long term solution? And is it as efficient as injectable test? Maybe not... but it could be the solution for some and would save a lifelong commitment of injecting. That said you can get viagra OTC now and for £200 you could get alot of it :lol:

Good thing is you are taking all things into consideration and weighing up the best option here. It happens all the time with the guidelines and numbers. Although some get lucky, generally if you're above their "range", you're hitting the same brick wall that everyone does.

I don't want to say your only option is private TRT (or using a UGL) at this point, as doesn't sound like you've completely exhausted options with the NHS. But it's probably something you should heavily consider. That £200 which may result in nothing, is more than one years leger membership.. but that's a drop in the ocean when you consider it's a lifelong commitment.
 
#12 ·
Thanks for the reply mate.

I suppose what frustrates me too is the fact that people get treated for all manner of things on the NHS (cosmetic things like boob jobs etc) but losing the ability to have sex/feel good isn't seemingly enough in this case.

On the other hand, I can see why they wouldn't want to open the floodgates on this as it could be very expensive if they started treating loads of guys, but I think it's hard to argue that low test isn't the problem. It's the lack of consistency that really gets me - reading NHS docs that tell me I'm deficient but then being told my levels are fine despite clear symptoms which resolve with administration of TRT.
 
#13 ·
I suppose what frustrates me too is the fact that people get treated for all manner of things on the NHS (cosmetic things like boob jobs etc)
Good luck with your treatment but the above statement isn't true. "Boob jobs" done on the nhs are restricted to women who have had trauma injuries or cancer or if extremely large breasts are causing problems and so on.
 
#15 · (Edited by Moderator)
Ok, so I've had the appt with the consultant. Could do with some opinions, although fairly sure I know how I feel.

Lots to mention but will try and be concise.

- He said 125mg per week is an 'extremely high dose' and when questioned said he would prescribe 250mg every 3-4 weeks usually.

- Doesn't like Sustanon and prefers gels due to less peaks/troughs (a fair point).

- I mentioned I'd tried gels and felt good but found them a pain - couldn't apply before bed as worried about transferring to my gf, couldn't put on first thing as go to gym before work (needs to be left on skin for hours). Ended up training before applying which meant was always struggling with energy/determination on squats etc.

- Asked about Nebido and he said maybe but wouldn't be on 10 week intervals, would only allow every 14 weeks.

- Biggest concern is that he wants to get another 'natural' reading despite already having had one before starting trt. He said he wouldn't stop me cold turkey but would wean me off on gels. He said it wouldn't take weeks/months but likely several years!

- I'm 39 now and don't want to feel s**t for several more years after losing most of my 20s/30s and finally feeling good the last few years. Also, I worry he maybe just wants to get me natural again and cut me off totally.

- I asked about BSSM guidelines and showed him the NHS guideline document saying 8-12 nmol should be considered for trial if symptoms present. He said something about all having their own assays.

I'm not really convinced by this guy. He's a diabetes expert too and I wonder how many TRT patients he's actually treated before. He seemed very wary too. Said it was for me to discuss with my doctor, but doc has made it clear he'll do what this guy says. Felt a bit like pass the hot potato to me.
 
#16 ·
Ok, so I've had the appt with the consultant. Could do with some opinions, although fairly sure I know how I feel.

Lots to mention but will try and be concise.

- He said 125mg per week is an 'extremely high dose' and when questioned said he would prescribe 250mg every 3-4 weeks usually.

- Doesn't like Sustanon and prefers gels due to less peaks/troughs (a fair point).

- I mentioned I'd tried gels and felt good but found them a pain - couldn't apply before bed as worried about transferring to my gf, couldn't put on first thing as go to gym before work (needs to be left on skin for hours). Ended up training before applying which meant was always struggling with energy/determination on squats etc.

- Asked about Nebido and he said maybe but wouldn't be on 10 week intervals, would only allow every 14 weeks.

- Biggest concern is that he wants to get another 'natural' reading despite already having had one before starting trt. He said he wouldn't stop me cold turkey but would wean me off on gels. He said it wouldn't be weeks/months but likely several years!

- Main concern is that I'm 39 now and don't want to feel s**t for several years after losing most of my 20s/30s and finally feeling good the last few years. Also, I worry he maybe just wants to get me natural again and cut me off totally.

- I asked about BSSM guidelines and showed him the NHS guideline document saying 8-12 nmol should be considered for trial if symptoms present. He said something about all having their own assays.

I'm not really convinced by this guy. He's a diabetes expert too and I wonder how many TRT patients he's actually treated before. He seemed very wary too. Said it was for me to discuss with my doctor, but doc6has made it clear he'll do what this guy says.
NHS will only take you soo far mate.

Some people have more success than others but it depends on the dr you're dealing with.

If you've got no success with the NHS and they won't allow you to deviate from their regime then you might have to dip into your pocket and go to a private endo or a TRT company.
 
#18 ·
I think you are overthinking it. Applying testosterone gel in the morning won't impact on your performance in the afternoon. Endogenous hormones fluctuate. If exogenous ones fluctuate a bit it won't matter. Mingster and Aqualung who post in here have 12 and 14 week nebido protocols respectively and they are fine.
 
#19 ·
The problem was more that I'd be washing it off soon after application if I put it on before gym first thing in the morning. But if I waited and put in on later I'd have to do my morning sesh without having applied for 24 hours, by which time my energy levels had dropped.
 
#23 · (Edited by Moderator)
Well, against my wildest expectations my GP has decided to just continue prescribing me Sustanon!

I did not in a million years expect this as the endo was very clear that he doesn't recommend Sust and my doc had originally said he would follow endo's instructions. However, endo said it was ultimately up to me to decide with my doc, although it did seem like he was offering me limited choices (basically, taper it down over two years to get a natural reading, using either gels or Nebido every 14 weeks with no boosters/frontloading).

I happened to speak with a different doc at my surgery who listened to me and seemed to understand my points. He eventually said "I'm just going to continue prescribing your current medication, but there's a small chance the trust may tell me it's not amongst the recommended treatments."

Two prescriptions in and no problems so I'm thinking I may just be amongst the lucky few (touches wood).
 
#25 ·
I think the issue was that I never had approval from an NHS endo to go on test (went private then my family/childhood GP just agreed to put on NHS when I moved back to hometown).

I think with the endo having agreed to prescribe TRT in some format (admittedly a crap one) my GP felt less wary about continuing to provide.
Just read the history on this.

Great that you managed to get sorted. I felt for you having to go through the nonsense before.

I went start to private as my levels were 11nmol and I knew, even with all of the symptoms I was physically feeling, that the NHS would be a struggle.

D
 
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