GP has been stopped from prescribing my T3 and Clonazepam


My GP has received a visit from a prescribing body a few weeks ago and was told he is not allowed to continue to prescribe my T3 as only a consultant can do this, but he felt that on their next visit he could convince them that he should continue as I was doing well on it, but the answer to that was a definite no. I saw an endo last year who (after prescribing the initial month on a three-month trial) said he could prescribe this for me but that some GPs don't like to, not that he is not allowed to! However, he has been increasing it at my request over the past year. He has now had to write to the hospital asking for permission to continue and we await a response. I doubt he will be given permission as my endo who I saw last year was not keen on prescribing it to me in the first place as she felt it was not proven to be of benefit!

Now I have found that Clonazepam, which I have been taking for the last 25 years shows on my repeat prescription slips as a 'Red Drug Hospital Only'. I take these for RLS, I did wean off these a few years ago and tried every other med my GP could prescribe for my RLS and none worked whatsoever, so back to Clonazepam. I know Clonazepam doesn't work that wonderfully, but at least it keeps me fairly mentally relaxed once I am awake after being woken with RLS and twitches after just three hours sleep. I am assuming he will now have to write to someone (not sure who, as this was initially prescribed by GP) for permission to continue with this. Further, Movicol which I also get a prescription for has also been classified as a 'Red Drug Hospital Only'. I am in a right quandry now. If I can't have T3 I will have to get this on line which I don't feel I should have to, and if they take away Clonazepam what can they replace that with as nothing works, although I can't have Tramadol as GP himself won't prescribe me this.

Lor 7

24 Replies

  • Lor7,

    If an NHS endo originally recommended you take T3 it is quite proper for your GP to take over issuing repeat prescriptions.

  • Yes I know, but she was only letting me have a three-month trial then I was to get another appointment to see her. They did not send me one! So he carried on prescribing them anyway.

  • Lor7,

    Presumably the endo wrote to your GP advising prescription of T3. If so, that should be sufficient for the prescribing body.

  • Not exactly, her registrar who i saw initially, asked him to prescribe the next couple of months then I saw then endo who was rather loath to prescribe T3 at all and 'kindly' said I could have a further 3- month trial and asked me to trail back to hospital for the next two prescriptions, but my GP said he was happy to prescribe to save me the inconvenience.

  • Lor7,

    Perhaps you and your GP can appeal the decision with the CCG pointing out that T3 was originally recommended by an NHS endo. No need to mention trials. If necessary, negotiate continuance of the prescription until a NHS endo can review your prescription and results.

  • Hi Clutter

    Thanks for that, sounds good advice, although I can almost guarantee the endo will not agree to continue with prescribing it.

  • Restless Leg Syndrome is often the result of nutritional deficiencies. Have you had your vit D, vit B12, folate and ferritin tested?

    You could also try taking magnesium - without needing to test - to see if that helps.

  • I was going to mention nutritional deficiencies when I read your post, but I see greygoose has already done so.

    I used to get restless legs and getting my nutrients to optimal helps me a lot. I almost never get restless legs any more.

    The most important things for me, in terms of stopping restless legs is iron and magnesium. It isn't a good idea to supplement iron without being tested first - and you want your levels to be optimal rather than just in range. Regular testing of iron levels is essential if you supplement iron.

    There are lots of different kinds of magnesium supplement and they have different advantages and disadvantages.

    Personally I take magnesium citrate because it acts as a very mild laxative for me, which which I find helpful, and it also makes me a little bit sleepy so I take it before bed.

  • Hi thank you humanbean

    I do take magnesium and it was citrate but I have changed it to magnesium? (can't remember right now) as it is supposed to be better.

  • I would be interested in knowing what you are supplementing with, and at what dose.

    If magnesium hasn't helped the RLS I would suggest you investigate your iron and ferritin levels next.

    By the way, keep taking the magnesium even if it hasn't helped your RLS. It has plenty of other benefits.

  • Hi humanbean

    I take Vit D3 liquid gel caps 5000 mcg (as directed by endo) B12 sublingual, spatone, calcium 500 mcg folic acid, B complex and Omega. All at doses that I have read on here and elsewhere.

  • You haven't mentioned the magnesium you take?

  • Nutri Advanced Magnesium Gylcinate

  • If it provides 100mg magnesium per pill you would need 3 or 4 per day to get the maximum daily dosage from supplements.

    Since you are already taking magnesium for your RLS I would definitely suggest you look into your iron levels. Once you know your levels create a new thread, post your levels, and ask for feedback.

    I hope you find something that helps.

  • 200 mg and I take 6 per day. Has no effect whatsoever.

  • How about your iron and ferritin levels?

    There is another thing I've found which improves my muscle spasm and restless legs, but it isn't necessarily safe for everyone, and for people with some health conditions it could be downright dangerous.

    When my legs are playing up I take one or two potassium supplements - each pill is 99mg of potassium. The daily recommended allowance for potassium is 4700mg, so you can see that a small amount can have noticeable effects.

    One of the things that can lead to low potassium is taking high dose B12 (which I do). Really I ought to be eating foods high in potassium rather than taking potassium supplements.

    But when I have restless legs at 2am I always take the easy way out.

  • Iron and ferritin are good. Have also taken Potassium, but no difference really.

  • I hope you find a solution that works for you. I've run out of ideas, sorry.

  • What rubbish! Your GPcan prescribe T3.

  • He thought that too and told me that he was due to see the guy who had previously told him no and had no doubt that it would be okay to carry on and for me not to worry. But he got a firm no at the next visit, and has had to write to the hospital for permission to carry on. He too is flabbergasted. I live in Bristol, anyone else experienced this?

  • RLS have you tried Magnesium oil massaged in, you could have low magnesium as its Calciums partner IE calcium allows muscle contraction, and magnesium allows it to relax. Magnesium deficiency is very common with restless leg syndrome, plus it's a key nutrient in thyroid disorders too, so you may not need the T3 either if it is that that's the problem, get magnesium and calcium added to your blood test to see where you fall in the range you need to be in the upper 1/3 or higher.

    Other nutrients to get added are D3, B12, Zinc (zinc is commonly very high in hyperthyroidism) also add in Folate/B9 Vit A, also research on Google symptoms of low stomach acid, may help the graves antibodies even with hashimotos too. Also needed for nutrient absorption, healthy bacteria, more than just digesting your food... Hope this helps...

  • Hi Roadrunnergreg

    Thank you for replying.

    Yes I have tried it doesn't work for me. I take Magnesium and Calcium too. I do need the T3 as I have felt far better on it that without it. I also take all the other vits that have been advised. I have a hiatus hernia too, so have to take Omeprazole which does reduce stomach acid but I was taking that prior to being diagnosed as hypo and all my vit levels have been tested and all okay. So who knows what will happen now.

  • Hi Lor7 I too have a hiatus hernia and a Barrett's hernia too, I mention these not to out do you but I've found having a TBSP of ACV (apple cider vinegar) in a glass of water helps a lot and doesn't bother my hernias, I just have to watch meal sizes, more smaller portions is best for me. I also should take omeprazole but find the ACV works best for me. Just thought I'd share my experience....

  • Hi

    Didn't think you were doing that at all. I was always wary of trying Apple Cider vinegar just because of causing problems. Will give it a try. If I don't take Ompeprazole I cannot swallow my food as it gets stuck at the osephageol opening into my stomach and is so extremely painful that I have to (sorry) hawk it back up and then end up with mouth fulls of slobber. It was because of the pain that I sought help. I was first diganosed with acid reflux, when I told them I didn't suffer with heartburn it was advised that my osephagus was so burned I wouldn't feel it. Then when having second endoscopy to check Omeprazole had sorted this I was advised I had a hernia.

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