Thyroid groups, led by Thyroid UK, have worked in partnership to design a survey with various questions about CCGs’ prescribing practices for T3. This is an ENGLAND only survey and the data has been requested by Lord Hunt.
NB: This survey ends at midnight on 19th November 2019 as it has to be analysed and sent with comments on the NICE guidance on thyroid disease.
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PLEASE complete this survey by following this link:
Would love to have completed this survey but I was refused Liothyronine in December 2018 and again June 2019 and it appears I fall outside the parameters of the survey.
However I now have my genetic test results ( showing that I have the DIO2 gene polymorphism) and I have been taking self sourced T3 for 3 and a half months ( and feel much better for it) so I'm hoping I'll be more successful when I see the endocrinologist again in December.
I am very fortunate to receive T3 on the NHS and have had a look at the guidelines for the survey and I cannot complete it as I do not FORTUNATELY meet any of the criteria. However, my GP warned me a couple of years ago that "the powers that be" would probably tell them to stop prescribing it at some point but in the meantime we would try to "fly below the radar". I notice that my health record contains a note referring to the "discussion that T3 may be withdrawn". I am still flying below the radar but it has made me very nervous about contacting my surgery about anything. I take a deep breath and cross my fingers every time I submit a request for a repeat prescription. I am just trying to keep my head down and lie low! Not a very nice position to be in.....but certainly better than all of those who have either had it withdrawn.....or cannot get it in the first place. Keeping a watchful eye on the CMA inquiry as I feel that if there is a positive outcome to that we will have a stronger leg to stand on.
ITT SURVEY - Have your say on the new NICE Guidelines 
