You know I've been in your shoes and feel your pain- I really do. When methimazole sent my liver enzymes soaring (I remember it was a Friday night that I got my labs emailed to me), and the on call doctor told me to stop taking the medicine that night, I freaked out! I thought for certain I was going to spiral into hyper hell again. I knew that my only options were RAI and surgery, and on top of it, I couldn't go back on an ATD to control my levels- I was completely freaked out. Felt like a time bomb and had no idea how much time I had to make my decision on RAI or surgery. I get the fear, the worry, the what if's. Knowing you HAVE to make a decision and not knowing how much time you've got to do it sucks.
What I would say is that, as long as your doctor feels you are a candidate for both surgery and RAI (safety wise, that your thyroid levels are stable enough, heart rate is stable whether with or without the betablocker)— as long as your doctor will support whichever decision you make, and you've done your research, go with your gut. Whatever it right for YOU, might not be right for the next person. The important thing here is having your doctor's support (not necessarily his/ her recommendation though as my endo, like yours, did not recommend surgery- simply bc it is more invasive and there is a possibility of complications- those are very real things, but as far as me, I was a candidate for surgery as my thyroid hormone was stable, heart rate was fine, and I am healthy over all). So, my endo. tried at least 3 times to persuade me to do RAI; he said it was a ‘no brainer’ and said if it was his sister or wife, he would want her to do RAI. I really like and respect my endo., and I still am his patient. He communicates well with me and works with me, listens to me- will order my labs (even the T3 which he didn't feel was necessary at this point). So, we have a good doctor/ patient relationship. That is important. In the end though, we take the advice, do the research, and have to do what is right for us- whatever that may be.
I didn't want to be away from my family with RAI (especially my breastfeeding infant). I too worried about eye issues and radiation in general. Before I knew methimazole didn't work for me, I always leaned towards surgery- not sure why, just did. I knew 1 person who had RAI, she didn't recommend it. Again, I KNOW that it works well for many, many people– just like methimazole works well for many, many people. But, everyone is different, and my gut told me surgery. So, I was fortunate to have a wonderful surgeon and a surgery without complications. Do your research, talk with and listen to your doctor, and then go with what is right for you.
Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).