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.
Hi ByeByeBowtied30ad4 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
