At Today's appointment I was told some things that seem a bit contradictory to the messages on here. I'd be interested in any thoughts.
•antibodies can't be controlled through lifestyle changes. They are what they are and can't be got rid of. So gluten free won't affect antibody levels or how unwell the hyperthyroidism will make me feel. He suggested diabetes, thyroid, MS and coeliac are on the same spectrum, and triggered by the antibodies attacking different parts of the body- but that going gluten free if not coeliac was probably pointless and those hyperthyroid patient probably got better over time as part of the natural course of the disease. (See next point)
•the overactive thyroid gland will just burn itself out over time (usually happens within 18 months hence this is the suggested time for using carbimazole before coming off it) at which point the hyperthyroid patient will inevitably become under active and need levothyroxine. It was suggested that only 10% don't follow this pattern- I'm in the 10% apparently!
• RAI is their preferred option now I have 'relapsed' (or by my interpretation- taken off carbimazole too suddenly)
•that it will usually only take 3 months to get the levothyroxine levels right after RAI and that will be my dose for life.
I asked for studies of long term carbimazole use so I could better understand the risks- he said there weren't any- and I suggested it was because of the lack of patients who are allowed to go down this route... he agreed. At the end of the appointment I said I wanted to do at least another 12 months with carbimazole and monitor the situation. This was agreed to- which I am grateful for.