Refused T3 by GP - not unexpected

I am soooo angry and need to get this off my chest.

After nearly 5 years of this thyroid journey starting with the usual T4 medication which made me very ill (I would like to add that I had clearly had thyroid issues for many years beforehand and hadn't been diagnosed), I ended up seeing Dr P and ordering T3 online.

This worried my family and eventually after ordering for a couple of years and not being properly monitored, I got a referral from the GP to see a consultant endocrinologist. He said that I must only take T3 and wrote to my doctor to that effect.

I have since seen my GP and he clearly doesn't approve but I have asked for the T3 to be presribed. He said he would check with the CCG but that he was only asking because I have the fault DI02 gene.

I have found out today that they haven't approved the prescribing of T3 and now I look an idiot because I said Id take it to my Primary Care Trust, obviously now realising they are the same as the CCG.

What do I do? Im fed up ordering it online and not being monitored.

3 Replies

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  • Numberone1,

    Get your GPs reasons for refusing the treatment your NHS endo recommends in writing. If the endo's hospital is a part of the same CCG as the GP practice it doesn't make sense for the endo to be recommending T3 if the CCG has banned prescribing of it. Even if your GP has contacted the CCG you may be able to appeal the decision on the basis of the endo's recommendation, DIO2 impairment and how ill you become on Levothyroxine.

  • Ive just had a call from my GP himself saying that all the CCGs will be refusing prescribing T3. He said it wouldn't only be on cost but on safety! I told him I would be more of a cost to the NHS i I had to take T4. He has suggested I write to them and appeal and that they can be liberal in their views if I take it further. This I shall be doing.

    He said the bordering endocrinologists in another area have all taken T3 off their list of treatments.

    However, he has said he his happy to monitor me. That he wants me to be safe....thats a joke when he has the knowledge that Im ordering it online. He is also going to look into doing a prescription for me which I could order elsewhere from ie someone on here said about Germany which would only cost about £300 a year to them.

    What do you think?

    He also expects the endo to have something to say about me not having it prescribed when he has clearly recommended it.

  • Numberone1,

    It's not relevant that endos outwith of your CCG have stopped prescribing if your CCG is still prescribing. I posted 20-year and 17-year observational studies reviewing safety of T3 in my PM. Your endo has taken responsibility for recommending T3 and your GP should be taking note of the specialist. It is not acceptable for your GP to decide T3 is too expensive. If he wants a cheaper option than UK Mercury Pharma he can take personal responsibility for writing a named patient basis prescription for French Sanofi Aventis Cynomel or German Thybon Henning T3.

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