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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@avawein I want to connect you with @millis who shared that they had regrowth as well in this comment: https://connect.mayoclinic.org/discussion/frustrated-could-i-have-small-fiber-neuropathy/?pg=1#comment-604361

I also found this and thought you may find it valuable.

- Thyroid tissue remnants after "total thyroidectomy":
https://pubmed.ncbi.nlm.nih.gov/19735611/

Despite their skepticism, did they share what it could mean for you?

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@amandajro

@avawein I want to connect you with @millis who shared that they had regrowth as well in this comment: https://connect.mayoclinic.org/discussion/frustrated-could-i-have-small-fiber-neuropathy/?pg=1#comment-604361

I also found this and thought you may find it valuable.

- Thyroid tissue remnants after "total thyroidectomy":
https://pubmed.ncbi.nlm.nih.gov/19735611/

Despite their skepticism, did they share what it could mean for you?

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Hi Amanda. Thank you for the links. The doctor reassured me that an ultrasound was better for imaging thyroid tissue than a CT scan. A biopsy will provide answers whatever the outcome so I should know more this week.

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@avawein

Hi Amanda. Thank you for the links. The doctor reassured me that an ultrasound was better for imaging thyroid tissue than a CT scan. A biopsy will provide answers whatever the outcome so I should know more this week.

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Hi Ava, I was wondering if you had an update about the thyroid biopsy?

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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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@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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Welcome, @heatherbezzz. Did you have another ultrasound in the meantime? Any updates on the regrowth of thyroid tissue and what steps are next?

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hi everyone, i have just learned that my brother had his thyroid grow back, had it taken out approximately when he was 50, so he had 2 thyroid surgeries. no one really remembers, he is no longer with us, had a stroke at 52, was wondering if that thyroid surgery had anything to do with his thyroid surgeries. thank you for listening. lilyann

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i just now found out about my neck and soft tissue ultrasound. malignant neoplasm of the thyroid gland (hc). so my next visit will be with the surgeon on january 3, 2023 thanks for listening. lilyann

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i have not read anything about thyroids growing back. i guess that is why you have to dig really deep and really to people on these forums. thank to all who post. so much more believable than what is written, they make it sound one two three, so now, its really not that simple. the other question is, if they open you up and the air hits the cancer and spreads more? so many questions and not enough answers. thanks everyone. yes, i do sound crazy, just got the results however, not surprised as to what i have read and it all falls in line. lilyann

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@colleenyoung

Welcome, @heatherbezzz. Did you have another ultrasound in the meantime? Any updates on the regrowth of thyroid tissue and what steps are next?

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I just had the ultrasound yesterday. Lung issues took priority. I will update when I hear from the docs. Pray you're doing well.

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@lilyann sending prayers your way.

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