Update: T3 usage & monitoring by NHS

Further to a telephone consultation today my Endo explained that our NHS Trust as discussing the supervising of patients self medicating with T3. He explained that the NHS Trust are concerned that they are liable if they supervise patients such as myself self medicating, unless we buy T3 in the U.K. at a cost of £258.00 per month.

He even explained he’d looked into prescribing T3 for his patients from Germany as a cheaper option however the NHS Trust would still not approve this method either.

The NHS won’t supply T3 purely based on cost and I NEED T3 to survive and have any quality of life like many of us do! I’m upset and scared that if the NHS Trust stop the supervision where do I stand as it gives me reassurance that I’m being looked after even if I have to source T3 from overseas.

The NHS Trust don’t want to pay £258 per month for us yet expect me to with 3 chronic auto immune diseases living off benefits with a daughter to support. My bloods clearly show I don’t convert. My symptoms back this up. Where will this end!!! 😡😤😢

11 Replies

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  • Would this move beyond being supervised by the endocrinologist?

    By which I mean if you self-sourced the T3 and paid for your own monitoring blood tests (money you can't afford, but still probably approx <£35-60 per month rather than £258, depending on your dosage and how often you need to test your levels), would other specialists for the other auto-immune conditions likewise be instructed not to co-operate with you?

  • Why should any of us have to pay for blood tests to monitor our thyroid levels although I know many do on here. Fortunately my GP practice don’t question it and I can go regularly and get my TSH FT4 & FT3 checked - for now.

    However I really struggle controlling my levels so after over 18 months I’m still under my Endo. I’m also under Rheumatology but they don’t specialise in Thyroid disease and wouldn’t help.

    If all NHS Trusts remove supervising patients who self medicate where will this end is what I’ve saying? A lot of potentially really sick ppl being left to fend for themselves who should be looked after by the NHS. It’s bad enough not supplying T3 but to remove specialist supervision is just another step in removing care we vitally need and should be entitled to

  • My first thought, putting the money to one side, is do you have any confidence that they will supervise you in a sensible manner. We read on tis forum of uncounted numbers of endocs going into meltdown over suppressed tsh.

  • My Endo does look after me that’s why he advised me of this today. I’m so ill with lupus and myositis as well now I need the support (as I’m sure many others do also) from all my consultants especially as I get so sick when my TSH is out it has a knock on affect to my other diseases

  • That must be very upsetting. Have you written to your MP about it? The pharmaceutical company must be laughing all the way to the bank. I still don't understand why the NHS can't buy T3 more cheaply.

  • I wonder if they’re tied in to buying from the pharmaceutical companies so can’t source it outside the U.K.? Just seems daft the NHS can’t just buy it from abroad like we do.

  • I agree! Surely it's better for our health to buy German T3 and take the same risks as German people, rather than give up T3, or buy it that extortionate price. The pharmaceutical companies who are allowed to sell to the UK must be worried that they'll have no customers left soon, if the NHS won't pay for it. It's in their interests that UK patients are forced to buy privately from them and not from other countries! Maybe they're lobbying...

  • I have my T3 prescribed by the NHS as Cytomel which comes in from USA via Canada. My Gp is not too happy with the situation as Cytomel is not licenced here in the UK despite it being widely used and licenced throughout the rest to the world. What is very attractive is the price - it costs NHS just £230 per 100 tablets if bought in through one of the specialist thyroid import companies listed on the ThyroidUk website. You just need to use a small independant pharmacist who will use these import companies but Cytomel is one of the leading T3s available in the world. I have now been taking it for well over 6 months and can say that it is a much better drug than most other T3 that I have tried. I have had to accept that Cytomel is not licenced for use here but frankly its a much better option than being ill all the time.

    Heather

  • I’m on Cytomel have been since July but I’ve had issues changing over from uni pharma so still not stable yet as it feels stronger. Your lucky you have a supportive GP as mine doesn’t have a clue so panicked and said he’s not insured with me self medicating and got straight on the phone to my Endo last year.

    Be prepared though that sooner or later if it continues as it has there will be a blanket ban on T3 across the whole NHS.

  • I am afraid it was strong arm tactics with the Gp, he is totally out of his depth and it is me that is accepting the risk of an un licenced drug, not him. I have had to sign my rights away but its worth it for a drug that actually works. This is not self medicating and am already gearing up for the fight to retain T3. I cannot take T4 as I have no TSH (damage from a brain injury 25 ish years ago) and I have Hypothyroidal dementia which means I have to be correctly medicated for my thyroid or the dementia takes over. My dementia consultant insists that I must continue with T3! As I have been on T3 onlyfor well over 6 years I think that indicates that I have a "specialist need"!

    Heather

  • Hello Miss FG

    I would be cheaper to have NDT harmone, have you considered this?

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