The thyroid condition is treatable, but it does require daily medication. As mentioned in previous post, your blood is tested every single month, and you see your doctor every 3 months(every month for the first 3 months post infusion)
so signs of ITP are checked for every month & thyroid every 3months.
You mentioned the treatment center is 1-2 hours away? This could be a hassle for you! I understand the desperation to find treatment at any cost, but being in the study is a very very involved process.
My study site, along with genzyme, have coordinated with a home health company that comes to my home/job every month for the blood draw, so this saves on time & energy going to the doctors.
But, as I've posted, I was often sick with respiratory infections for the first 9 months after infusion...So i was always stopping by their office to get checked out, chest xrays, and scripts for antibiotics. IF you had these problems, the study site would be responsible for taking care of you with all these related problems...but because it's so far away you might end up seeing a local doctor...but then you'd have to pay for it!!!
My neuro doc continues to be very positive about the results he's seeing and reading. He tells me of new scary side effects (most recently a death involving a blood clot) but reassures that these things would be detected as long as I'm reporting everything I'm feeling. Which I do, via email whenever I feel like it. So a good relationship with your study site is really important. I trust my team & so far they haven't let me down.
It's a huge decision, I know how you feel! Also, after all your deliberations and paperwork and pre-infusion tests, you could be randomized to the Rebif arm!!! (of course at that point you could refuse, or get free rebif for a few years)
Keep up the good fight!!