Anyone else had thyroid tissue regrowth after a total thyroidectomy?

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!

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.

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?

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! They can’t guarantee it isn’t thyroid cancer without removal of the masses but he said he isn’t wanting to rush removal due to where it’s growing they could cut my vocal cord and leave me on calcium tablets for life and if they remove it and it isn’t he would’ve caused those issues for no reason. I’m going for some form of scan again in a couple of weeks (he said technical but I have no idea what that means but he gave me a number to ring if I had questions so I’ll ring and check on that) and then they’ll do another ultrasound in a few months and if it’s still growing bigger then he said they will remove it then. Not really sure how to feel.

I had a complete thyroidectomy in 2005 . Never was good at taking the replacements . I got an ultrasound after Covid pandemic. I have a whole thyroid ; it grew completely back . They pulled my records too . I thought I was the only one lizard like …

I had a total thyroidectomy in 1997, mine grew back as well. I had biopsies of the tissue and it came back as normal thyroid tissue. The new endocrinologist didn't believe I had a total thyroidectomy and asked me to get the records from the surgery. My thinking was yeah right, from over 20 years ago, it's lucky if you find records from 10. I'm supposed to have another ultrasound as well. Mine isn't growing normally, it's more in the left side and back behind my ear area, very strange.
I hope and pray all was well with your situation.

I’m having a very similar situation… I had a total thyroidectomy back in ‘99. My thyroid has grown back but not normal. It looks deformed and has grown back strangely. Unfortunately the nodules seem to be growing (per recent CT scan of my chest for another condition). I’m going for an ultrasound tomorrow. Hopefully I won’t need another surgery! 🙏

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.