T3 and ndt

[Olsbird]

Does the NHS (theoretically) have t3 and ndt available on prescription? Is the battle to find someone who will prescribe alternatives to levo? Or can you just not get it at all? Thx.

[TupennyRush]

You may be able to get t3 of you find a sympathetic endo. Ndt is not so easy, I get mine on private prescription but a friend who's been taking NHS prescribed ndt for over 10 years since she started on it as part of a trial of alternatives to levo was told a year ago that the endo was only allowed to prescribe it for a few more weeks then it would no longer be available. She managed to get 1 years worth on prescription but has just been refused any further ndt so is now getting it on private prescription

There may be a few ccgs still allowing it but unlikely.

BTW - I have seen two NHS endos; one of which described ndt as dirty and unregulated; it's snake oil and I shouldn't take it the other who was interested as she'd never met anyone taking it but still didn't think it was as good as levo

[Olsbird in reply to TupennyRush]

Thanks! Cannot tolerate more than 25 mcg of levo and even on that I'm having hot flushes which I never had before. Now have referral to endo as (useless) gp finally acknowledged defeat. Guess I'm just trying to gear up for the next battle 😥. I know it may be my low ferritin (but it's taken me 4 months and 4 GPs to take that seriously ). Like banging your head into a wall...... I really envy those people who just take levo and their life is revolutionised !!

[Olsbird in reply to TupennyRush]

Btw how do you get a private prescription. Is it from an endo and you pay. How much? Thx.

[TupennyRush in reply to Olsbird]

Hi

I saw a private endo, took along my results (I was tested for the di02 gene defect and I have it - see Thyroid UK for more info) and a paper that shows a study that people with di02 mutation do better with t3.

I paid for the appointment and blood tests. It was a while ago but I think it came to around 500 quid all together.

I pay for the ndt, I'm on an alternating dose of 2 and 1.5 grains (1 day one the next the other) and it costs a little over 100 quid for 100 days.

My GP (who is great BTW) agreed to write up my private prescription if it was signed off by an NHS endo (my private endo works in the NHS but let's not go there) so I saw an NHS endo (the one who said ndt was dirty etc) who did sign off the ndt as the private endo I saw is a Prof plus highly respected and she didn't want to be contradicting him even though her opinion is that ndt is somewhat akin to homeopathy.

So, I now get a private prescription from my GP (with a bit of coaching the first time as they can't be done on the computer system so he had to hand write it and the grains thing caused some confusion) which I then fill from a pharmacy recommended by thyroid UK. I did try getting it at my local coop pharmacy but they quoted around 175 quid more than the other.

I'd suggest getting scientific papers on T3 and taking them to your NHS endo appointment. My second NHS endo commented that she was impressed that I took these and not 'some stuff from a non medically qualified person just printed off the internet'. As a result of the information I handed over (on ndt and t3) she did further reading and will hopefully be more sympathetic in future. It didn't hurt that she had seen my private endo in his NHS work and respected him which then made the ndt more palatable for her (I think my first NHS endo is a lost cause!)

Not all NHS endos are t4 only merchants. NHS endos who also do private appointments may be more sympathetic. My private endo has stated that he's not allowed to prescribe ndt when working in the NHS but that he is happy that it provides better outcomes for some patients.

So good luck but if you're going the NHS route I'd suggest asking for T3

[Olsbird in reply to TupennyRush]

Thanks. Actually got bupa cover but the guy I'm seeing does NHS work also.

[quiet-hawk-5989 in reply to TupennyRush]

What is the name of the endo please who might be sympathetic. My GP has just stopped prescribing...

[Heloise]

Hi Olsbird, some people here have had accommodating doctors who won't prescribe T3 or NDT out of some sort of fear but WILL monitor them if they want to purchase their own hormone. These people acquire what they want as both are available and not too expensive. If you think you are ready to do that you can ask for recommendations. I'm not in the UK myself.

[Olsbird in reply to Heloise]

Thanks. I have no faith in my gp. I'm about to change surgeries but to be honest Im not holding my breath 😥

[silverfox7]

Someone on another group posted a list a few days ago of thyroid meds dispensed on prescription. It was very long so they can do but most won't either I suspect because they dont know anything about it, the money isn't there though won't admit to that. It's about time there realised that the Internet is far searching and we have access to it! Silly me we are told to take no notice of the Internet and of course we all do what we are told!