liothyronine refusal

i was not responding well to levithyroxine and was turning into a zombie. Doctor eventually prescribed a low dose of levothyronine. I understand there is some research indicating that a small proportion of people with hypothyroidism are unable to convert the thyroxine to its active form in their cells so that they do not respond to thyroxine alone, and liothyronine enables that conversion to happen. My life has been transformed. if anyone is interested, I can list the improvements. I can live my life now.

BUT now I am devastated because my GP called me in to announce that the local Health Authority had refused to pay for any more lioythyronine as the suppliiers had put up the price too high. She advised me to buy it myself on the internet. I understand that questions were asked in the Scottish Parliament about liothyronine because of a shortage in Scotland. I have not heard that people have been refused it, once started on the medicine. please, can anyone help me out there? I have paid my taxes but am not wealthy. I do not have private insurance and believed in the NHS. I think situations like this can only undermine our trust in the NHS. What essential medication will be cut next? It's not as if I ever had a choice to either pay for private insurance or the NHS. Anyway, what we want is an NHS we can rely on. IF YOU TAKE LIOYHYRONINE BE WARNED. YOUR HEALTH BOSSES MAY CUT YOURS NEXT. I feel as if I am being tossed on the scrap heap just as my retirement is starting. Are there any suggestions about what action we can take before it is too late for all of us?

20 Replies

  • I take liothyronine alone. I know the prices has become extortionate for some unknown reason but the MHRA state that cost doesn't come into it if we are prescribed medication.

    I would make an appointment to see your MP and tell him that with the addition of T3 it made life bearable again as T3 is the Active hormone our body needs to function properly and that that the Health Authority is denying you the right to a proper healthy life because you were not well when on levothyroxine alone. Also that you will probably be offered medication to control the symptoms, so the costs will add up anyway. First of all, too low a dose can give you heart ailments, diabetes, or worse.

    You can also take a copy of this article to your MP and leave it with him to read. (it states that we need proper doses of T4/T3).

    Also tell him that the Scottish Parliament are considering the inefficient prescribing of suitable thyroid hormones.

  • This is also a link which you can also sign and give your MP a copy of it also.

  • Can you not asked to be referred to an Endo and persuade him/her to prescribe it?

  • Mrsmfw, Request your GP puts the reason your liothyronine is being stopped in writing. I doubt cost will be mentioned because I don't think it is a valid reason for discontinuing a prescription. Attach a copy of the GP's letter Write an appeal to your CCG and cc your MP and ask for them to overturn the decision, saying you have been told it is due to cost and you have been advised to self fund by buying on the internet and attach the GP's letter.

    If the CCG has recommended only endocrinologist's authorise T3 ask for a referral to an endocrinologist but ask that T3 continues to be prescribed until the referral appointment.

  • That's outrageous. Clutters right get them to put it in writing then copy letter up here. We would all like to see. If genuinely they are stopping vital medicines purely on grounds of cost then many people on this forum will be affected and we all need to get involved.

    Ps does anyone know what the actual cost difference is?

  • Churchie, 28 x 50mcg/100mcg Levothyroxine is <£3.00 28 x 20mcg Liothyronine is >£120.00

  • Good grief. Still not a good reason for withdrawing it if people need it

  • Churchie, cost of prescribing isn't a valid reason to discontinue medication.

  • I was told by my doctor that Liothyronine would no longer be allowed. I immediately created a fuss in the waiting room a d he said he would contact the PC.C. Next day he phoned to say it had been approved as I am already taking it and stable. ( actually I self treat with NDT but keep the doc issuing prescriptions as an 'insurance policy' in case I can't get hold of NDT.

    G x

  • My Liothyronine was cut without notice last week, I raised a stink on Facebook & Twitter and got in touch with our NHS Clinical Commissioning Group to state my case and find out why my Liothyronine was cut. A day later the lady called me to inform me that their is an escalation route for the treatment of UAT and if Thyroxine is not working on it's own Liothyronine can be prescribed but you may need to be treated under a Consultant as it is banded Blue if your Doctor feels they can't treat you successfully. I got an email confirming all the details from them to give to my Doctor.

  • Good luck with your fight against T3 being stopped.

    However, in the interim (or maybe long-term depending on how things go) you can get T3 quite inexpensively, off scrip, from europe. Indeed, you can get T3 inexpensively with a script almost anywhere except Britain!

    If you want a stockist PM me.

  • wher do you recommend for getting it in europe? Was going to try Mexico thanks

  • I am not allowed to mention any names of any stockists or their locations in this forum. If you want more information you will have to PM me. Sorry.

  • Hi humphey can you pm me with your contact for cymonel as I have been looking all night and not sure if the site av been looking at is safe

    Thanks angelina

  • the same has happened to me. Saw consultant privately who prescribed Liothyronine 20mg, but My doctor is refusing to give me an NHS script. Where can I obtain it in in EUrope or you said inexpensively in the UK. I have been quoted £280 for a month's supply, 3x 20mg a day. I need help, THank you.

  • mrsmfw - have you seen this thread?

    A solicitor in Sheffield is interested in hearing about people who have been refused T3 or NDT by their local CCG (Clinical Commissioning Group).

    Would you feel able to your own CCG and ask them why they will not fund your T3? The instructions are in that thread.

    I'm the person who is collating the results.

  • I wrote to the head of my GP practice in 2011 asking for a T3 blood test and a trial of T3. I was refused both. The head of my local CCG is that same head of GP practice. I don't know if I kept her reply to my letter (I still have the latter) or screwed her reply into a ball and danced up and down on it in frustration. If it would be helpful I can look through what I laughingly call my filing system?

  • If you can find it easily then it would be nice to add it to the letters we already have. But don't spend too much time delving through piles of neatly (un)filed papers.

  • Willco.

  • I am mystified as to why liothyronine is so expensive in the UK?? I was first diagnosed in the US -- was on T-3 only for about a year and T-4 was slowly added later. But T-# in the US is not expensive -- and is available in sustained-release. Here, I was however offered Armour/Erfa (NDT) on a "named patient basis" and that contains both hormones. I eventually opted to get a compounded T-3 through my old doctor in the US -- because it's relatively inexpensive and it works well for me. Look into Cytomel -- which is the commercial T-#3 time-release available in US & Canada. If you can get that it won't be expensive. Good luck.

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