Effects of RAI (I-131)

Melo0576 Member Posts: 10


I had a total thyroidectomy in 2018 followed up with radioactive iodine (radiation in a pill) 2 months after. Now, 6 months later I’m still feeling side effects that were allegedly suppose to be “temporary.” My saliva glands swelled and it’s so painful and gets worse when I chew. My nose has a permanent nasal drip and hurts. The dry eye is unbelievable. I understand side effects 6 weeks later, but 6 months later and I lose my taste buds!? Anyone else experience this? Does it ever stop? I also wish doctors would stop saying “it’s the best cancer to have“ because it’s misleading. At my last ultrasound they found 3 remaining nodules that can’t be removed because it’s in the tissue bed of neck. They are microscopic (Ranging from .3 and .5 and I guess I don’t have to worry because my thyroglobulin levels are really low (.2). Hopefully I’ll get feedback. I was curious about experiences of others. Please share! @—)—


  • mayirsi
    mayirsi Member Posts: 2 *

    Hope you are doing better! My doctor said there was no research to support sucking on lemon drops during radioactive iodine therapy. I did not know I would have to drink like crazy and stayed up the night before making preparations to be gone. I didn't drink as much as I could at first b/c I had to sleep a bit. It was a miserable experience. Afterward, I had swollen glands like you described. Antibiotics helped, but then I had thrush. Antifungal meds worked. 8 yrs. later, the only side effect from radioactive iodine is permanent dry mouth. I have some saliva, but I always have dry mouth to some degree and never eat anything dry without a drink nearby. I pray you are doing better and your symptoms have subsided.