Anyone else had thyroid tissue regrowth after a total thyroidectomy?

Posted by avawein @avawein, Sep 12, 2021

Hi All. In 2004 I had a total thyroidectomy for nodules that were suddenly growing quite rapidly (non-cancerous). Two years ago I was diagnosed with a neuroendocrine tumor in my terminal ileum which was surgically removed. In the last month, they found two stable tumors in my liver but the CT scan and subsequent PET scan also showed what appears to be thyroid tissue (3+ cm long) in the left thyroid bed. My doctors showed skepticism that I had a total thyroidectomy but I have records to prove it. Has anyone else had thyroid tissue regrowth after a total thyroidectomy? I have a biopsy scheduled in two days. Thanks.

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@catmama

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!

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

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@molly0102

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.

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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?

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@colleenyoung

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?

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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.

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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

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@khd003

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

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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. 🙏

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@littlelion

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.

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Hi! I’m just now seeing your post … can I ask how you are doing now? Did you end up needing another surgery? Praying that all is well! 🙏

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@amiramonet

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 …

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I felt the same! When they first called (after a MRI) to tell me that I needed to follow up with my endocrinologist about a “mass on my thyroid” - I told them but I don’t have a thyroid! I couldn’t believe it had grown back. Felt like something from a sci-fi movie…and of course it had to grow back with multiple nodules again. 😣

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@heatherbezzz

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.

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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! 🙏

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@khd003

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! 🙏

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Hi @khd003, I thought I'd check in. What did you learn at your ultrasound? Crossing my fingers that you don't need follow-up surgery. How are you doing?

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@molly0102

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.

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First, I am a 52-year-young survivor of papillary ca of thyroid. Despite a total thyroidectomy in 7-72, some thyroid tissue has regrowth. But according to ultrasound, nothing malignant, so far. I'm grateful that my surgeon opted to do such a radical surgery, despite the after-effects of years of depression, anxiety, need to eat within a 6-8-hour fast period, periodic need to monitor dosage of Synthroid which changes during the aging process, as does the need to head off osteoporosis & bone breakage as a petite woman without a thyroid gland. Why am I grateful for such a radical surgery that took me 2 years to recover from just the initial after-effects in my late 20's? The total thyroidectomy taught me how to take care of myself on 3 fronts: physical, emotional, spiritual. The pain & suffering I experienced motivated me to stand up and speak up to medical practitioners who were more interested in their bottom line than in my health care. Exercise, nutrition, & self-advocacy became tools of health care that I practice daily to maintain wellness. Meditation, prayer, & support groups for family members of chronically ill patients have taught me how to be there for myself when others are not. I do not give away my trust to people, places, or overprescribed medications as I used to in my youth & middle age. That surgeon removed the source of cancer in my body, 52 years ago. That was a big loss & big gain at the same time. Without the pain & suffering that followed, I would not have changed from a victim to a victor, from a doormat to an abusive 1st husband to the tiger I am now who is learning how to be kinder & gentler with everyone, especially myself. Hope this helps you with the overall big picture of post thyroid surgery. My biggest accomplishment to date: Learning how to accept reality, advocate in partnership with trustworthy m.d.'s for holistic wellness, and pay my life experience forward to others in need. Welcome to the club of thyroid surgery survivors & thrives. Know that you too can heal yourself from cancer & many other chronic or life-long illnesses simply by taking care of yourself BEFORE you sacrifice your health, sanity, life itself for others who are out for themselves not you. If I am not for myself, who is for me? If I am only for myself, what am I? If I do not take action now, when will I ever take action? Hugs & healthy, happy New Year! Trudy

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