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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.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

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Shelley Black-Triboulet | @shelleyaaa1 | Aug 9, 2023
In reply to @amiramonet "I had a complete thyroidectomy in 2005 . Never was good at taking the replacements ...." + (show)
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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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Wow

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Shelley Black-Triboulet | @shelleyaaa1 | Aug 9, 2023

Unfortunately I believe I will be in this category. I had a total thyroidectomy in 2015. Follicular. Intern disaster. Severed my recurrent laryngeal nerve and destroyed the para thyroids to boot. Another story. Anyway I have a sizable lump I just noticed yesterday on my left clavicle area by my throat..,,,, sigh…….. went to my primary today and quickly did the Ponchas Pilate routine- deferring me to an oncologist who is on vaycay next week. Here we go again down this oh too familiar rabbit hole, Alice. Another big sigh. My appt is for Aug 22 so I’m sure it will be diagnosed then. I knew it before and I know it now. Just not sure what I am willing to go through this time. Much more jaded. Medical mafia. Health care is BROKEN. Crap
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tglapin1974 | @tglapin1974 | Aug 7, 2023
In reply to @lilyann "i have not read anything about thyroids growing back. i guess that is why you have..." + (show)
Profile picture for lilyann @lilyann

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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Sorry, regrowth thyroid patients post thyroidectomy. It was ultrasound, not CT scan, that revealed regrowth of so-far normal thyroid tissue after total thyroidectomy. The original diagnosis of papillary carcinoma of thyroid came in late July of 1972, when a surgical resident felt abnormal lymph nodes below the original tumor site that had been diagnosed " benign tumor of the salivary glands". The 2nd biopsy was diagnosed papillary carcinoma of the thyroid which at that time required a total thyroidectomy.

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tglapin1974 | @tglapin1974 | Aug 7, 2023

Yes, I have on CAT scan recently shown regrowth of thyroid after a total thyroidectomy 51 years ago! My current endocrinologist is watching this. So far, no signs of cancer in this regrowth.

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medicalinterest | @medicalinterest | Jul 25, 2023

Yes. I had a total thyroidectomy for thyroid follicular neoplasia, with Hurthle cell tumors about 20 years ago with no complications. Easy surgery and recovery. Then it recurred about 2 0 years later. The Dr. said the surgery sometimes leaves pieces that grow back. Again, I had no complications from surgery and an easy recovery. I have been on Synthroid ever since. I am 87 years old and doing well. My only suggestion would be to insist on all info and reports from your medical team. I was roo compliant.

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csalena63 | @csalena63 | Jul 24, 2023

Wow, I also had my thyroid removed totally in 2004 due to one side being cancerous. I have never heard of tissue regrowth afterwards. I am going to have my self tested to ensure that this is not happening to me as well because I am experiencing pain on the right side of my neck. Thank you for sharing and I’m sorry I couldn’t be of more help.

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amiramonet | @amiramonet | Jul 15, 2023
In reply to @heatherbezzz "I had a total thyroidectomy in 1997, mine grew back as well. I had biopsies of..." + (show)
Profile picture for heatherbezzz @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 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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hello2 | @hello2 | Jun 4, 2023
In reply to @bevr "In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it..." + (show)
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In 2000 I had a thyroid nodule that was growing pretty quickly. The endocrinologist said it was "precancerous" and needed to come out. My entire thyroid was removed. The surgeon said "we got it all", but I was never told definitively whether it was cancer or not. Since then I've been taking synthroid or levoxyl. My T4/T3 seemed OK and I was feeling OK, but I wasn't being followed for any sort of cancer. Last October I noticed a growth in my neck in the thyroid bed. The results of an ultrasound looked pretty scary, but two biopsies didn't detect anything. After surgery in January, the 3.5 cm lump was found to be solid Hurthle Cell Cancer. IRT last week showed a very small invasion in the neck area, and I'll find out if any of it was killed by the radiation in two days. I'm hoping against hope that the radiation worked, because HCC is very stubborn.

In my opinion, when my "thyroid grew back", the lump should have been removed immediately. If my thyroid was completely removed 20 years ago, what else could it be but cancer? Even if non-malignant, you don't want extra tissue hanging around. Additionally, HCC is difficult to detect vis biopsy. Whatever it was, I would have chosen to remove it. As a good friend of mine always says, "why fool around?"

Thanks for listening and good luck everyone!

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By any chance were you taking unithroid? That's what I'm taking since I did have cancer. I had total removal as well. The funny thing is, I requested to have it removed. That's when they discovered the cancer.

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Colleen Young, Connect Director | @colleenyoung | Jun 3, 2023
In reply to @raejones2022 "I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks..." + (show)
Profile picture for raejones2022 @raejones2022

I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks post partial. One year later, more thyroid tissue grew, then I had radiation. Gone for good. Now I just had GIST surgery at Moffitt, Tampa. Rare epithelial sarcoma. Have mutation EXON18 that is resistant to chemo. Only treatment: CT abdomen, chest xray and labs. every 12 weeks. Does this sound reasonable????

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Hi @raejones2022, you've dealt with a lot! Glad to hear the thyroid cancer is "gone for good".

Here is a discussion group where you can connect with other members who have GIST.
- Anyone have experience with gastrointestinal stromal tumor (GIST)? https://connect.mayoclinic.org/discussion/gist-cancer/

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raejones2022 | @raejones2022 | May 23, 2023

I had a partial thyroidectomy, specimen came back follicular carcinoma. Had a total done 3 weeks post partial. One year later, more thyroid tissue grew, then I had radiation. Gone for good. Now I just had GIST surgery at Moffitt, Tampa. Rare epithelial sarcoma. Have mutation EXON18 that is resistant to chemo. Only treatment: CT abdomen, chest xray and labs. every 12 weeks. Does this sound reasonable????

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