Thyroglobulin rising post-thyroidectomy

Hi revrose! I've had the RAI treatment twice (once for treatment and imaging, once just for imaging) so hoping I can answer some of your questions based solely on my own experiences (I had a lot of the same questions post-op a few years ago).

My first suggestion would be to ask your doc why they didn't recommend any further imaging. They may have a good reason, but you never know if you don't ask. That being said, it seems odd to me that they didn't have you do any follow up (my cancer was isolated to one lobe of the thyroid according to pathology and they still had me do RAI).

My experience of the RAI wasn't bad (the diet you have to stick to in order to prep is the worst part in my opinion). My course of treatment the first time was 30 mCi of I-131 (the isotope of radioactive iodine that I believe is used for treatment and imaging) and imaging a few days later. I didn't have to stay in the hospital, just couldn't be around other for the first 48 hours after taking the radioactive iodine pill (which wasn't easy with four roommates and one bathroom - I was a grad student when I got diagnosed). I had 2 thyrogen shots before taking the pill (I was told this was so I didn't need to stop taking my levothyroxine) and I think the shots messed with my appetite (a possible side effect). As for the risks of taking a radioactive material, DEFINITELY consult with your doc on that. My brief scan of the literature gave the impression that risks of developing secondary cancer are low, but of course never zero, and seem to be correlated to the dosage of radioactive iodine that they give you. There's a page that mentions it on the American thyroid association website called "THYROID CANCER An increased but small absolute risk of leukemia can be attributed to radioactive iodine therapy for thyroid cancer" (it's a summary of a meta analysis of folks with 5-16 year follow ups) if you want to look, the forum won't let me post a link to it.

Personally, I would advise you to get a second opinion if you're starting to question your doctor. I would also recommend that you question your current doc about the lack of follow up. No one can advocate for your body like you can, and you have every right to ask all the questions.

Wishing you all the best,
M

@mc93, what a helpful post for @revrose
I notied that you wanted to post a link to the study you referenced. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Allow me to post it for you.

- An increased but small absolute risk of leukemia can be attributed to radioactive iodine therapy for thyroid cancer https://www.thyroid.org/patient-thyroid-information/ct-for-patients/april-2019/vol-12-issue-4-p-13-14/

hang in there. Going through a similar thing in our family.

Curiosity, I had herthel cell thryoid cancer 3.5 years ago. The initial byopsy was inconclusive. They did a partial thryoidectomy and remove half the thryoid. It was determined it was cancerous and went in and removed the other half a month later. I believe they took out 1 lymph node to test to see if the cancer had spread. They determined it had not spread to the lymph nodes. After the surgery, I had 1 round of radioactive iodine treatment(believe a pill?) and I believe a scan a couple days or week later. I have been getting blood tests for the past 3.5 years every 6 months and all the markers were good. In particular the Thyroglobulyn IMA was < 1 every time until this recent blood test. This test 9 months after my last test had all the markers as before except the Thryglobulin IMA. It suddenly jumped up to 6.1. from < 1. Could this have been a bad test from the bloodwork company or could this be more indicative of some thyroid material left behind that has suddenly started to grow? From what reading I found the 6.1 reading for the Thyroglobulin by IMA is on the high end of Normal(with a thyroid? Please correct me if I am wrong. It seems odd to me that I would go from 0 to the high end range if what I read is correct. My appointment with my ENT who found the cancer and did the surgerty with consult of an endocrynologist is scheduled for 2 weeks from now.

The answer to your question is it is possible to have a very small amounts of cancer that was left behind even after being treated. Please ask your endocrinologist any questions that you have I know for me after I asked my questions I felt so much better!!! Wishing you the very best of luck going forward!!!

We know I had small amounts of cancer left behind, because the tumor was wrapped around my thyroid. I had two lymph nodes removed during the total thyroidectomy Oct '24. Post op I had 35 radiation with chemotherapy.
My point in chiming in here is that every 3 months I am checked with ultrasound and blood tests.
And, you had dozens of lymph nodes removed? Ask where they were.
Second opinion may be wise since your follow up was not diligent.
Take care.

@kmlnj I had my thyroid cancer many many years ago like 25 years ago maybe more. but I do know that my thyroid cancer was wrapped all around my vocal cord and the thyroid . I also had a right left neck dissection and 24 lymph nodes were removed and about a third of them did have cancer in them. I had one round of RAI and hung in there one day at a time!!! for many years my endocrinologist kept my TSH level was very low just in case it started coming back it went multiply very fast so we kept it pretty pretty low for a long time and thank goodness 25 years later my numbers are still good thank the Lord!!! I almost forgot to mention that the variant of thyroid cancer that I had was very very aggressive it was called diffuse
sclerosed variant. I wish you the very very best of luck going forward and investigate as much as you feel it is necessary.