Hello.
I’m very glad this forum is here because I could use advice. Diagnosed with papillary thyroid cancer, I had a complete thyroidectomy and neck dissection in September of 2022, and radioactive iodine treatment in December of that year. I haven’t been the same since then, even now, close to three years later. The surgery and radiation took a toll, but it was the levothyroxine that messed me up the most. I got very sick in early 2023 after I was raised from 150 mcg to 175. I was fatigued and foggy. I had trouble thinking and communicating well.
I tried T3 but it was more than I could handle. I found a new endocrinologist and went down to 150 mcg levothyroxine. I tried T3 again, and again I stopped. I stayed on just 150 mcg levothyroxine for all of 2024. I wasn’t back to my old self, but it was the best I’d felt so far, if only because I was stable at the same level. But my TSH was 1.85 and my new endocrinologist said I was risking a recurrence by not suppressing cancer enough, so I added half a 25 mcg levothyroxine tablet every morning, to be on 162.5 mcg daily. I haven’t been doing as well. My TSH is now 0.78 and my endocrinologist says it’s still risky. I went up to 175 mcg but I couldn’t tolerate it.
I wish I knew how big a risk I’m taking with my TSH at 0.78 or higher after year three. I met another endocrinologist, the fourth I’ve consulted with, who said the suppression is not considered as big a deal anymore, and most people seem to be fine with a TSH under 2. I don’t know who to believe.
I have two more years until I reach the five-year mark and don’t have to worry about hormone suppression. I’ve heard I will adjust to levothyroxine eventually, so I’m holding out hope for that. Or perhaps I should try Armour Thyroid.
Thanks for reading, I’d be grateful for any tips.
