#T3 #liothyronine on blacklist

Just had letter from GP to tell me I can no longer have T3 as well as T4 but I can buy it privately from surgery. I'm on benefits and can't afford it at £100 a bottle. Has anyone else come across this problem. I need T3 liothyronine. T4 levothyroxine doesn't work for me by itself. I've seen articles in the press about the millionaire manufacturers of generic T3 who are ripping off the NHS. Any suggestions on way forward with this appreciated

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19 Replies

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  • Hi Levelslass,

    Do you mean paying £100 for Concordia T3 from outside your surgery or do you mean that your surgery's pharmacy can access it for £100. Concordia T3 is about £258 for 28 tablets now so I'm wondering if your surgery can access it from Europe.

  • The GMC doesn't have a role in this, although they might if a doctor is refusing but offering to sell. This is controlled by the local Clinical Commisioning Group (CCG).

    You can make a complaint about the refusal to prescribe based on cost rather than medical grounds. The BTA has issued a supporting document british-thyroid-association... which you can take along. Make a nuisance of yourself and insist. If that doesn't work try to get your MP involved, although you will need to see them rather than write a letter.

  • Hi jimh111 would the reply I had from the CMO giving the guidelines that existing patients should continue to be issued if beneficial, hold any clout here?

    Will MP respond now parliament is dissolved? I'm still waiting for a proper response from mine since April 1st - had a referred to health ministers office 12th, after resending email on 11th, and even after chasing and speaking directly to MP on 21st , and yet another email sent Mon, (BH) got a response - sorry you have not heard back, as parliament now dissolved....blah...blah... Avoidance tactic methinks!

  • CMO? Chief Medical Officer? This should carry clout, although ultimately the local CCG decides on priority regarding spending. The CCGs are under the illusion that stopping liothyronine saves money.

  • jimh111 Yes to CMO and thanks. That is what I had hoped. Worth a try for levelslass and other people who are being refused? I posted a copy of my response on here, a few days ago, for people to refer to. Might need it myself this coming week - when I get blood results !!

  • Levelslass,

    Has your GP practice said why they are withdrawing your Liothyronine prescription? If they are prepared to sell it to you privately it sounds as though it is being withdrawn on a cost basis in which case you should be able to appeal the decision and ask for Liothyronine to be reinstated. Copy your MP on any correspondence with your GP practice and CCG.

    The BTA has issued guidelines to GPs, patients and endocrinologists about switching T3 british-thyroid-association...

    You can buy 180 x 25mcg Greek T3 for around £35 and 100 x 25mcg Turkish T3 for £21 which is substantially cheaper than the £100 per month your GP will charge you privately.

  • If he is buying T3 from Greece or somewhere, and reselling it at £100 a bottle, then he is profiteering, and I don't think that's legal!

  • Well, in Greek pharmacies, yes, but it's still being manufactured, I think. But, that was just an example. Turkey, if you prefer. :)

  • Canada? You can't buy T3 in Canada without a prescription, I don't think. I don't even know if they have T3 in Canada. They don't in all countries.

  • Yes, they do have Cytomel on there, but it's prescription only. :)

  • My pharmacy get me TH from Germany? I don't know how this compares price wise, other than A N Other gets it on private prescription and I think it is costing her c£200 think for 28 tabs... Forgot to ask pharmacist yesterday when I picked mine up!!! Will try and catch him during week.

  • I really can't imagine that Thybon T3 costs £200 for 28 tablets. It would be about €3 in France.

  • GG,

    100 x 20mcg Thybon is €30.15.

  • greygoose I'm not 100% sure it was 28 tabs - chemist just held up box said the other lady was paying about £200 for it. Could have put more tabs in box I suppose. Think he was trying to make me feel guilty about still getting t3 when others aren't...as if I don't already!! That said, if I had been offered treatment at the age of 19 as I should have been, I might not need T3 now at 55!

  • No need to feel guilty. None of it is your fault!

  • Delicious21,

    NHS is supposed to provide treatment free at the point of use but this practice is withdrawing T3 to protect its drug budget. How is that helping the patient?

  • Delicious21,

    What reason, other than financial, can there be when the GP has refused to write a NHS prescription but offered to write a private prescription at a cost of £100?

    I'm not aware the DoH has any influence over CCGs or that they can instruct practices what they may or may not prescribe.

  • Delicious21,

    I don't have any questions. I was answering yours.

  • Thank you for the price information - I had a nagging feeling that my MIL, BILs, and OH were paying a bit over the odds and was dreading the day more family members ('next generation') might need it..

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