Hi, having had Graves about 15 years and used PTU, I finally had a wake up call that I shouldn't be living with chronic neutropenia for life . I am always around 1.0 neutrophils (2 - 7) and ended up with a viral illness that landed me in hospital for a week which was apparently compounded by my neutropenia (0.4 at the time due to PTU). (carbimazole / meth gives me same issue).
15 days after dropping PTU I have a lifetime high of 2.02 neutrophils. But I can feel myself starting to go hyper slowly.
Because my FT4/FT3 raises rapidly when I discontinue PTU I was instructed to go straight for surgery or RAI by my endo. Surgeon (london, invasive, expensive, private) today recommended RAI based on my history despite assumedly earning more £ from thyroidectomy.
I have mild TED (1 - 2 mm proptosis). Surgeon says using corticosteroids for 3 days during RAI I will ensure no effect on the eyes.
I never wanted to nuke my thyroid - I hoped they would cure the antibody thing so I could avoid the exogenous hormone route. But I guess I'm in a time crisis here. All doctors advised me never to go back on anti thyroid drugs and not walk around with WBCs like I'm on chemo.
If anyone gets the time, questions please:
- Any final reason why I shouldn't do RAI?
- Is he right that he is certain that with the usage of corticosteroids I will not have further TED issues?
- He also said the antibodies usually drop to baseline after RAI, effectively causing a remission. I thought they stayed high perpetually. Is he right? Mine are always in the 300 - 500s.
Thanks to anyone who has any thoughts.
PS I know about the clinical trial to lower antibodies but I am invalid for it.