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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jennyherndon | @jennyherndon | Nov 3, 2023

Thanks for checking in. I went back to the doctor on Tuesday and they are treating the high TSH with meds. I’ll receive ultrasound 3x a year to monitor the thyroid tissue that is still there ( or grew back).

Colleen Young, Connect Director | @colleenyoung | Nov 3, 2023

In reply to @colorado73 "Thank you. Pretty nervous." + (show)

@colorado73, how did the PET scan go?

@jennyherndon, have you met with your doctor in the meantime to learn what's next? How are you doing?

colorado73 | @colorado73 | Oct 30, 2023

In reply to @jennyherndon "@colorado73 thank you. and good luck tomorrow with your PET scan." + (show)

Thank you. Pretty nervous.

jennyherndon | @jennyherndon | Oct 30, 2023

In reply to @colorado73 "I'm so sorry you're facing this. I pray all goes well for you. I have my..." + (show)

@colorado73 thank you. and good luck tomorrow with your PET scan.

jennyherndon | @jennyherndon | Oct 30, 2023

In reply to @colorado73 "I'm so sorry you're facing this. I pray all goes well for you. I have my..." + (show)

Hope all goes well tomorrow. I’m waiting to hear back today on my next steps.

colorado73 | @colorado73 | Oct 29, 2023

In reply to @jennyherndon "Good morning! I am very glad to have found this group. I had a thyroglossal duct..." + (show)

I'm so sorry you're facing this. I pray all goes well for you.
I have my PET scan this Tues to determine what the hell is growing in the thyroid bed! I had my thyroid removed in April & ultrasound shows something large in the same spot the cancer was . Ugh.
Prayers for you!

jennyherndon | @jennyherndon | Oct 28, 2023

Good morning! I am very glad to have found this group.

I had a thyroglossal duct cyst removed in 2005 - no cancer. In 2009 I began to have what I found out were hyperthyroid symptoms with TSH levels at .5. Tests uncovered a large goiter with multiple cysts. I had a ultrasound guided FNA and the liquid/visual showed no cancer. My endocrinologist decided to "watch" it. It continued to grow so I had a complete thyroidectomy in February of 2011 - no cancer - and i was put on synthroid. About 8 weeks ago, my biannual bloodwork showed a sharp increase in TSH - 6.89. The test was repeated to rule out error. I had an ultrasound on Thursday and the results yesterday state "regrowth of thyroid". I'm so scared and confused. I'm waiting for next steps.

colorado73 | @colorado73 | Oct 23, 2023

Thank you. I feel ok these days. Some sluggish others on nerves. But overall I'm good, except tired at end of the day. I have a PET scan scheduled on Oct 31. So hopefully it'll reveal what's going on or it'll show nothing.
Thank you for checking in on me, I do appreciate the concern.

Colleen Young, Connect Director | @colleenyoung | Oct 23, 2023

In reply to @colorado73 "Not sure what is going on with me other than Dr ordered an ultrasound, 6month marker..." + (show)

That is un-nerving @colorado73. Have you had the PET scan? How are you doing?

colorado73 | @colorado73 | Oct 13, 2023

Not sure what is going on with me other than Dr ordered an ultrasound, 6month marker post surgery of removing thyroid. Radiologist sees something growing on right side of thyroid bed, which is exactly where the cancerous nodule was found & removed with the thyroid gland. So now Dr is ordering PET scan pretty quick to determine what the hell is going on! Scared & worried. Any advice? Surgery was April 2023.
I'm on 175mg Synthroid as well.