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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 18, 2022
In reply to @heatherbezzz "I had a total thyroidectomy in 1997, mine grew back as well. I had biopsies of..." + (show)
@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?

REPLY
2 replies
heatherbezzz | @heatherbezzz | Dec 12, 2022

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.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 22, 2021
In reply to @avawein "Hi Amanda. Thank you for the links. The doctor reassured me that an ultrasound was better..." + (show)
@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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avawein | @avawein | Sep 12, 2021
In reply to @amandajro "@avawein I want to connect you with @millis who shared that they had regrowth as well..." + (show)
@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?

Jump to this post

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.

REPLY
1 reply
Amanda Roe | @amandajro | Sep 12, 2021

@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?

REPLY
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