Hi Folks, this is my first post, though I have been following most days since being diagnosed with autoimmune hyperthyroidism in February 2016. I have learnt a huge amount from this site, for example to ask to get B12 tested (sure enough I was deficient), and to go gluten-free,
Though my thyroid levels have never been very high, I have very high TPOab antibodies - >1300 last May, >600 this February. I have been taking carbimazole from the start but I still have had a very rough 18 months, and the thyroid clinic have not managed to keep my T4 and FT3 in range, it fluctuates between being underactive and overactive when the most microscopic adjustments to dosage are taken - ie at 12.5 I go overactive and at 15mg underactive.
I will be seeing the endocrinology consultant in a couple of days and I am expecting that his next step will be to propose RAI, a prospect that does not appeal to me. Can anyone give me any advice please? One particular worry for me is about the antibodies - I have had (fairly mild) thyroid eye disease, which I have been told is inactive now, but I wouldn't want to trigger that off again.
And also....as the thyroid went askew I developed muscle spasms and burning pain in my neck, back, and shoulders, and I also became extremely fidgety. It has been very disabling and I am being treated by a neurologist for it. He tells me that with antibodies as high as mine the brain can be affected, but (hopefully) that it will be temporary. It is always far worse when my FT3 is too high, but it never really goes away. Has anyone else out there had anything similar?
Any advice is very welcome. I suppose my current big question though is how best to bring down those antibodies and what happens to them when you have RAI?