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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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kmlnj | @kmlnj | Jan 31 7:36am

Thank you for posting. I had no idea this could happen!!!!!
Which thyroid hormone blood test would show this?

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kathleenmkastrup | @kathleenmkastrup | Jan 31 11:08am

Recovering from a recent high dose of RAI. My mouth, throat, gums, lips are so sore and bleeding. Does anyone have any suggestions as to what I can do to alleviate the pain and stop the bleeding? If you had these same symptoms, how long did it take before you felt somewhat human again and could swallow food?

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leaha3 | @leaha3 | Jan 31 12:07pm

I always wonder if it's necessary to remove ectopic thyroid tissue if it's not showing any signs of cancer. And why is it that a regrown thyroid is seen as something to be removed as well, even when it doesn't show any signs of cancer?
Could it just be that a re-gown thyroid or partial thyroid works or even ectopic thyroid tissue, simply are various ways our body compensates for the initial total thyroid removal? Like someone here said, a lizard that loses its tail just goes and grown another? Why should this be seen as a threat to the patient's health, if no cancer is detected? I'd think it would be great: you might be able to take less levothyroxin or even not have to take it anymore.

So why the repeated surgery to remove thyroid tissue and/or RAI to ablate it? It seems wrong to me.

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2 replies
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mswendeu | @mswendeu | Feb 1 2:00am
In reply to @leaha3 "I always wonder if it's necessary to remove ectopic thyroid tissue if it's not showing any..." + (show)
Profile picture for leaha3 @leaha3

I always wonder if it's necessary to remove ectopic thyroid tissue if it's not showing any signs of cancer. And why is it that a regrown thyroid is seen as something to be removed as well, even when it doesn't show any signs of cancer?
Could it just be that a re-gown thyroid or partial thyroid works or even ectopic thyroid tissue, simply are various ways our body compensates for the initial total thyroid removal? Like someone here said, a lizard that loses its tail just goes and grown another? Why should this be seen as a threat to the patient's health, if no cancer is detected? I'd think it would be great: you might be able to take less levothyroxin or even not have to take it anymore.

So why the repeated surgery to remove thyroid tissue and/or RAI to ablate it? It seems wrong to me.

Jump to this post

@leaha3
I asked it to be removed as it was over my hyoid bone and causing me to have trouble swallowing. The pathology report indicated result of my graves' disease causing it to hyper function.

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Colleen Young, Connect Director | @colleenyoung | Feb 14 4:10pm
In reply to @leaha3 "I always wonder if it's necessary to remove ectopic thyroid tissue if it's not showing any..." + (show)
Profile picture for leaha3 @leaha3

I always wonder if it's necessary to remove ectopic thyroid tissue if it's not showing any signs of cancer. And why is it that a regrown thyroid is seen as something to be removed as well, even when it doesn't show any signs of cancer?
Could it just be that a re-gown thyroid or partial thyroid works or even ectopic thyroid tissue, simply are various ways our body compensates for the initial total thyroid removal? Like someone here said, a lizard that loses its tail just goes and grown another? Why should this be seen as a threat to the patient's health, if no cancer is detected? I'd think it would be great: you might be able to take less levothyroxin or even not have to take it anymore.

So why the repeated surgery to remove thyroid tissue and/or RAI to ablate it? It seems wrong to me.

Jump to this post

@leaha3, these are good questions to which I don't know the answer. Have you had a chance to ask your doctor? Do you have ectopic thyroid tissue or regrown thyroid?

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annabelle426 | @annabelle426 | Mar 5 7:20pm

So I am 56 yrs old and was diagnosed with hashimotos disease which leads to hypothyroidism when I was 13, at which time I was put on synthroid 50 mcg. At the age of 16 my body was not responding so I had a full thyroidectomy and was put on 300mcg. Since then I have been on 300mcg and my levels have fluctuated back and forth. In 2018 I was told I had hyperthyroidism after loosing 100+ pounds in a very short time and my eyes no longer bulged and I had hot flashes all day but I had energy and we tried lowering the medicine but I got super sick I couldn't keep food down and they raised it back to 300mcg. I recently found out I might have a thyroid regrowth but my doctor seems so confused since this is rare and told me to stop my medicine all together for 6 weeks. Only 1 of my thyroid levels is super low and all the rest are great. Any opinions or thoughts please 🥺. ?

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