Anyone else had thyroid tissue regrowth after a total thyroidectomy?

I had my thyroid totally removed in 2010. I’ve had GERD and have been on Prilosec for years and now Protonix. I’ve had a lot of heart burn and tickling in my throat etc. Now I’m finding out my thyroid seems to have regrown in the left side but also down to my sternum manubriim. I had a CT scan in October 2023 then my surgeon just suddenly left the practice. I got a needle aspiration biopsy and the specimen only contained blood. No tissue. So then I had to wait to see my new surgeon and he has now ordered a new CT scan for tomorrow. And then an interventional radiologist will do a biopsy using the CT to guide him. I’m actually quite scarred. It sounds like the surgery will be very invasive and difficult and since the surgeon saw a large 4CM mass in a difficult spot back in October he is very concerned it could be a worse scenario. My thorax is being pushed to the right because of the mass. When I had my thyroid removed they found a minimal carcinoma and I wondered why they didn’t follow up much closer because I have had the symptoms for a long time and been treated for GERDS when it’s something related to my thyroid regrowth. I haven’t been able to sleep much because it seems my throat is getting tighter and tighter and now I have congestion in my throat causing some panic moments. I tested for Covid and that was negative. I’ve lost my appetite because I ‘m worried I’ll choke. I will write more after I get results from tomorrows CT scan. Wish I was more hopeful.

Can I ask what type your nodules show? (Assume you had biopsy)

Do you mind who was your surgeon removing the lump? Thank you,

Hi @ameliajones, was the growth non-cancerous? Did you have to have further treatment? How are you doing today?

In 2016 I had a complete thyroidectomy. By 2018, both lobes of my thyroid had grown back.

First, I am a 52-year-young survivor of papillary ca of thyroid. Despite a total thyroidectomy in 7-72, some thyroid tissue has regrowth. But according to ultrasound, nothing malignant, so far. I'm grateful that my surgeon opted to do such a radical surgery, despite the after-effects of years of depression, anxiety, need to eat within a 6-8-hour fast period, periodic need to monitor dosage of Synthroid which changes during the aging process, as does the need to head off osteoporosis & bone breakage as a petite woman without a thyroid gland. Why am I grateful for such a radical surgery that took me 2 years to recover from just the initial after-effects in my late 20's? The total thyroidectomy taught me how to take care of myself on 3 fronts: physical, emotional, spiritual. The pain & suffering I experienced motivated me to stand up and speak up to medical practitioners who were more interested in their bottom line than in my health care. Exercise, nutrition, & self-advocacy became tools of health care that I practice daily to maintain wellness. Meditation, prayer, & support groups for family members of chronically ill patients have taught me how to be there for myself when others are not. I do not give away my trust to people, places, or overprescribed medications as I used to in my youth & middle age. That surgeon removed the source of cancer in my body, 52 years ago. That was a big loss & big gain at the same time. Without the pain & suffering that followed, I would not have changed from a victim to a victor, from a doormat to an abusive 1st husband to the tiger I am now who is learning how to be kinder & gentler with everyone, especially myself. Hope this helps you with the overall big picture of post thyroid surgery. My biggest accomplishment to date: Learning how to accept reality, advocate in partnership with trustworthy m.d.'s for holistic wellness, and pay my life experience forward to others in need. Welcome to the club of thyroid surgery survivors & thrives. Know that you too can heal yourself from cancer & many other chronic or life-long illnesses simply by taking care of yourself BEFORE you sacrifice your health, sanity, life itself for others who are out for themselves not you. If I am not for myself, who is for me? If I am only for myself, what am I? If I do not take action now, when will I ever take action? Hugs & healthy, happy New Year! Trudy

Hi @khd003, I thought I'd check in. What did you learn at your ultrasound? Crossing my fingers that you don't need follow-up surgery. How are you doing?

I’m having a very similar situation… I had a total thyroidectomy back in ‘99. My thyroid has grown back but not normal. It looks deformed and has grown back strangely. Unfortunately the nodules seem to be growing (per recent CT scan of my chest for another condition). I’m going for an ultrasound tomorrow. Hopefully I won’t need another surgery! 🙏

I felt the same! When they first called (after a MRI) to tell me that I needed to follow up with my endocrinologist about a “mass on my thyroid” - I told them but I don’t have a thyroid! I couldn’t believe it had grown back. Felt like something from a sci-fi movie…and of course it had to grow back with multiple nodules again. 😣

Hi! I’m just now seeing your post … can I ask how you are doing now? Did you end up needing another surgery? Praying that all is well! 🙏