NHS England updated their guidance on the prescribing of liothyronine (T3) in July 2019 - sps.nhs.uk/articles/updated...
The new guidance states that T3 can be prescribed to hypothyroid patients who have unresolved symptoms on the standard medication, levothyroxine, but that it should only be initiated by a thyroid specialist.
However, we are aware that in some instances, patients have not been able to access T3 and in a recent meeting with Lord Hunt, he requested that we gain information about Clinical Commissioning Group’s (CCGs’) prescribing practices since the updated NHS England guidance.
Thyroid UK has been working in partnership with other thyroid organisations to design a survey asking various questions about the prescribing practises of your CCGs.
NOTE: This survey will end at midnight on 19th November 2019 as we want to analyse the results and send them with our comments on the draft NICE guidance on thyroid disease.
Please complete this survey by following this link:
I'm afraid not. The guidance relates to England only so we wanted to show how many CCGs are not allowing prescribing. We may well do another separate one for Scottish Health Boards though.
I can't ask for T3 yet anyway, only just had a levo increase which may hopefully be enough this time, after over a year of fighting for more (Like Oliver Twist, lol).
I buy my own T3, and have done for years. Recently a new GP told me that I’d better keep doing so as I can get it cheaper than the NHS! That isn’t really the point, though, is it. The NHS should be buying it for at least as cheaply as I can.
I am seeing a private Endocrinologist in the hope of treatment for a lifetime of CFS/ME. Saw my GP today who warned me that she might prescribe T3 !!! Which was an interesting comment. At nearly £280 a pack if I am prescribed it I will be looking for help to buy it online.
I'm not eligible for the survey as I started on liothyronine nearly 6 years ago.
At my appointment in September, the endo said that the national (presumably NHS England) position was that they can't initiate it for any new patients unless they submit details of a special case and it's approved. Apparently feeling ill on levothyroxine isn't a strong enough reason. I'm happy to provide details of the consultant, etc if that helps.
Thanks Lyn, went to see endo yesterday, said he is happy for me to source t3 but he can’t prescribe it as he is not allowed to and says they don’t believe t3 helps. He says it’s like having a cup of coffee you get a buzz for a short while then go down again and it can affect heart and bones.
That does happen to some people (feeling better initially) but for a lot of people they continue to feel better. More research needs to be done on why this is happening. It could be because it's not a slow release T3 which would be nearer what the body actually does.
I've been trying to access the survey this evening to complete it but Survey Monkey tells me it's closed. There should be another 2 hours yet as it doesn't end until midnight. How can I access it please?
I scheduled it to close at 12.12am so it's possible it's a time difference problem (they don't tell you that). I'm afraid I can't open it again as it may interfere with the analysis.
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