Anyone else had thyroid tissue regrowth after a total thyroidectomy?

I just changed the filter from “oldest to newest” to “newest to oldest” and found a lot more recent posts and comments! I will read through now and see if I can find some more answers… It seems like this is not so uncommon! One doctor told me that they probably didn’t get all the tissue with my original surgery. It was also thankfully not cancer, so I didn’t need any other treatment at that time - other then getting on the correct form of hormone replacement. 🙏

Hi - it looks like most of these posts are from a few years ago. I hope you all are doing better!

I had a total thyroidectomy back in 1999… this was due to having a “toxic multi-nodular goiter”. I had multiple nodules… they did a biopsy and it was suspicious for cancer. I was also having symptoms of hyperthyroidism. ..so they removed my thyroid but I didn’t have any other treatment.

I found out in 2017 (after having an MRI of my head for headaches) that my thyroid had grown back! And once again had nodules. Apparently it didn’t grow back all the way and my nodules were small and like “swiss cheese”… so my doctor wasn’t worried about it. I was also dealing with other health problems includes Primary Adrenal Insufficiency.

Well now I just got the results back from a CT scan of my chest - and one of my thyroid nodules has grown to 3.2 cm. I’m going in for an ultrasound tomorrow… apparently that will provide a more accurate picture. I’m just wondering what happened to the people who had their thyroid grow back … did you end up needing surgery again? Or possibly the radiation treatment?

Any feedback is much appreciated!

Thank you!

Karen

Hi Colleen, Since my re-occurrence/radiation in 2014 (initial diagnosis and thyroidectomy was 2010); my schedule for follow up is an annual visit with the endocrine doctor with routine panel of related bloodwork. It typically includes a sonogram as well, since I have also survived six (6) other cancers - all have some kind of atypical character, so an abundance of caution is the rule now.

Welcome, Molly. How was your recovery after radiation? What is your follow-up schedule, i.e., how ofter do you see your endocrine oncologist and what tests are done?

I have an endocrine oncology physician follow my post follicular carcinoma /thyroid cancer.

Hi, IDK if you or any of the other commenters have received any clear answers to their concerns; but here is my experience. I had a complete thyroidectomy due to multiple cancerous tumors. A few years later I had symptoms of a reoccurrence. Doctor did not show much concern since all the typical thyroid levels post surgery and replacement hormones were normal. I sought a second opinion with “Dr. Google” 🙃. I found in rare cases a cancer reoccurrence can be missed if a Thyroid hormone ANTIBODY test is not also ordered. I demanded that blood test; and it was sky high. There is a special scan (I can’t recall what it is called - but it is definitely not a CT nor a sonogram, PET, nor MRI). The scan uses an iodine contrast to pick up thyroid cells, because that’s where microscopic cancer cells could have survived and regrow looking and behaving as a thyroid gland tissue would. My treatment was radiation. Since then I have not had another reoccurrence or regrowth. And now the antibody test is routine. I hope this helps give you some additional information to run by your doctors.

I had removal of my thyroid in 2018.
I’m checked every 6 months and last month they found a regrowth of papillary cancer in my thyroid bed.
It’s why it’s important to be checked every six months
M

I have blood test,and ultra sounds every six month to a year that my endocrinologist orders, then I go over The results with him.

I don’t know what is considered “ normal” for follow up because I am still having difficulty getting regulated on medication. I continue to have frequent bloodwork and ultrasounds, however I was told that once things get regulated I would go to having yearly ultrasounds along with blood work. I am having a lot of side effect issues and pain, so I haven’t moved on to typical monitoring.

Hi Everyone,

I’m new to this forum, as a matter of fact I’ve never actually posted on any forums before. I had total thyroidectomy October 25, 2022 and RAI and the Gamma scan December 2022. I had a nodule on the left side of my thyroid that turned out to be papillary cancer that was discovered by my PCP in late August and was fast-tracked to getting the surgery and treatment. Since then no one has followed up with me for any scans, only blood work (PCP handles). Am I supposed to have any kind of after care treatment like sonogram or PET scans? My PCP told me to call the oncologist, which I did, but they said they don’t do any of that follow up care…does anyone know who should be taking care of this for me? Or do I just need to be my own advocate and insist on having these tests? Thank you for any input or information!