Liothyronine removal scare

I know a lot of us on here are very scared by the news to stop prescription liothyronine. I believe that it won't be removed with the cuts. It does not have an alternative drug. It's t3 and levothyroxine is not t3.

They keep saying it is not a blanket ban. So I guess we all have to state our cases individually.

As well as being still scared. I feel very betrayed. Because I accept and have always accepted that

1) with limited NHS funds then research for better drugs for hashimotos and other causes of hypothyroidism is low priority compared to other illnesses

2) that many GPS do not have enough knowledge in the area. That they are only human and have probably therefore prioritised their limited time for education in other areas.

3) that medical knowledge is limited and always progressing and some doctors forget this and think they know everything about each illness. Again human!

4) so from all above I accept that I have to "treat" and educate myself. Again all thanx to this site. To whom I owe my life. I am quite happy to do this as millions of people miles worse off

5) I accept that I have to be embarrassed and ashamed that I take a drug that costs 40 to 50 times as much as levothyroxine. the latter being the drug that doesn't convert to t3 in my body.

6) I accept that the drug company supplying yhe NHS costs 30 to 40 times more than if bought from other companies. Though itupsets me that our beloved NHS is paying above the odds

But I CANNOT ACCEPT that the drug I SURVIVE on could be denied me by the NHS. "FREE at the point of care cradle to grave".

11 Replies

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  • Poppppy,

    I don't feel guilty because the MHRA and NHS have allowed Concordia to price gouge until Liothyronine is priced out of the NHS drug budgets.

    I didn't ask to have thyCa and require a thyroidectomy and I believed that I would be well on Levothyroxine. It's not my fault that I wasn't and that I need Liothyronine (T3) in addition. It's wrong that I should be expected to live some sort of half existence because the medication I need to feel well has become expensive.

    It's all very well for NHSCC to say that it won't be a blanket ban on Liothyronine but they don't say how one is expected to appeal withdrawal? The consultation is still under review until later in the month but practices are rushing to withdraw prescriptions.

    I believe withdrawing Liothyronine is a breach of the fundamental principle that NHS provides care free at the point of need.

  • Hi thank you for your reply. Yes you are right. And in your position having had thyroid ca I would not feel guilty ever either.

    I think I am saying that in all the bad things sad but swallowed in the treatment of hypothyroid patients. I can't swallow this. the irony is beyond belief ; The fact we have been left alone to suffer and treat ourselves . I feel like saying you have forgotten us so far so PLEASE carry on forgetting about us.

  • Hi

    Embarrassed or ashamed, my answer to that is why should I be, I pay income tax. I ordered a proscription for 28 x 3 20 micro grams of Liothyronine this morning and nothing was said to me, I see my endo Wednesday 12th April and I will ask about this ban.

    All the best

    Frank

  • Please let us know what your endo says. I will ask mine too in may.

  • Hi

    Just back from seeing my Endocrinologist, she was running 25 mins late, so it was a quick visit, I asked her about the restriction on prescribing liothyronine ,she was surprised that I knew, she asked me if my GP practice was prescribing liothyronine without any problems for me, I answered I haven't had any problems, she said I wouldn't have any changes in my treatment or medication, I then asked her for a prescription and she gave me a months supply.

    Regards

    Frank

  • Bad business practices are not for us to feel ashamed of, but I do hope those responsible feel ashamed.

  • I was prescribed T3 by a private Endo as Thyroxine makes me itch unbearably. My GP told me he couldn't prescribe it for me on the NHS as "they " won't allow him to. This was over a year ago. Clemmie

  • I am so sorry that your gp couldn't prescribe it. I hope the source you get is helping you. Take care and thankyou for reply

  • I have just been prescribed T3 by my doctor.I was on it previously for 15 years,then asked by my doctor to try levo on it's own because of the cost. I asked to be referred to an endo first,and she said I could go back on T3 if levo alone didn't suit me,provided my doctor would fund it.I spent 4 months trying different dosages of levo,then half of the T3 dose I was on.I did not feel well during this time,so my doctor agreed to put me back on my original dose. She said she just had to justify that I really needed it,so I think everyone needs to stand firm and insist on seeing an endo, as they are the only ones who can agree to it being prescribed.

    I don't feel guilty at having it prescribed,there are a lot of people getting drugs that are more expensive, and I have worked and paid my taxes for 40 years and never claimed benefits of any kind.

  • Thank you. I'm glad your persistence paid off.

  • Hi Poppppy, nice post and replies. I feel no guilt at all, we deserve to be well and surely it's up to the Government to do something that prevents drugs from being patented so that the price can be exorbitant. That's out of our control but within theirs so the way I see it is that the pricing is the Government's choice but our thyroid problems are not choice.

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