Thyroid cancer - advice for recurrence and medications

hf005

Hi all,

I have a couple of questions I'd love some insight on from the community. First, some background, I was diagnosed with papillary thyroid cancer in July 2023 at 43 years old. The main tumor was on the right side and it was 2.5cm, there was spread to the left side, but no apparent spread to the lymph nodes. I had a total thyroidectomy in August of 2023, and then RAI in September of 2023. It took some time to get my thyroid medications figured out, but I eventually ended on 88 of levothyroxine and 5 of liothyronine. With this, my TSH was around 1.5 and my free T4 was around 1.5-1.6. I tried other doses, but anything that got my TSH lower than 1 got either my free T4 or free T3 off the charts too high and I felt terrible. Then in November of 2024, my Tg went up slightly, (from 1.1 to 1.6), and more "things" were found in my neck through an ultrasound. Since my Tg went up, the doctor is presuming these "things" are thyroid cancer or thyroid tissue.

My doctor wanted to give me extra levothyroxine when he saw that my Tg went up with the hopes of suppressing whatever thyroid activity/thyroid cancer is causing this. I tried an additional dose of 88 once per week, and it went badly. My symptoms included: horrible headaches, extreme fatigue, night sweats, gassy, and irritability. Am I really sensitive, or is this kind of reaction normal? Also, if I really can't handle much more levothyroxine, why isn't my TSH lower? I know for thyroid cancer they want TSH around 0.5 (or lower), but why can't I seem to get there without feeling bad and having my free T3 or free T4 go off the charts?

Next, I'm wondering about treatment for the remaining thyroid cancer/tissue. Because of where it is located, the doctor didn't do a biopsy. Instead, the doctor is talking to some colleagues to make a plan and will get back to me in a week or two. How much should I worry about this small rise in Tg? Regardless of whether it's cancer or tissue, is this all just heading for surgery? Did anyone take the wait-and-watch approach with a recurrence, if so how long did that last?

Thanks for reading and I'd really appreciate any feedback people can give me.

Thankful4Life

How are you now?

Miles' mom

hi there. While I have not had any medication problems (I only take levo 100MCG), I did have a total thyroidectomy, Then a radical neck dissection and another surgery after that because of a spread to my neck bed. I also had RAI, but can't remember where in all that. It has been going on 6 years since my 1st surgery and I am now 3 years with clean scans. My doctor said low risk of recurrence at this point. Still blood work and ultrasounds, but further between.

It was A LOT in short period of time. So many scans and needles and recovery etc. What helped me through?

1. My solid belief that God knows and He is good.
2. A rocking family (support, support, support!!)
3. An amazing team of doctors (AND NURSES) that proved they cared about me.

To answer your question about wait and watch…if they find a cancer, have the surgery.

:}

Thankful4Life

That's awesome, thanks for answering and yes if they found any cancer I would have surgery as well. So glad you are doing well and that your faith and family helped you through it all.