Anyone else had thyroid tissue regrowth after a total thyroidectomy?

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

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!

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. 😣

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.

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.

Wow! It is definitely a stressful situation! I would assume the GERD is acting up due to the stress of not really knowing what is going on and thinking some of the worse scenarios…..I have GERD too and it definitely reacts to stress! Some of your issues may be coincidental and not related to the growth so TRY not to get too worried about them; swallowing concerns might just be related to the GERD. Try not to worry too much about the radiologist scan with the needle biopsy…it’s the same as a regular FNA. I actually thought it was kind of cool…..the doctor is able to see where they put the needle to take the sample from…..it seems like a much more accurate way to due FNA! When I was being considered for RadioFrequency Ablation, the first needles for the FNA were filled with blood too; they just put the needle in a new location and did an additional test and then sent the material out for Affirma testing. I don’t know if Affirma testing is used on other areas or if it is just thyroid, however it is supposed to be a very good prediction for cancer. The waiting and not knowing is definitely tough! However, on a brighter note, the treatment options and surgical techniques have advanced significantly since your thyroidectomy was done, so you might have options you had never heard about. Radio-frequency Ablation, Cyberknife surgery, endoscopic surgery, etc….techniques and treatments have evolved, so once you find out what is going on, the treatment options might help to reduce the stress. Try to remain positive…scar tissue can really muck things up so you don’t want to assume the worse and get yourself all stressed out when it could be related to scar tissue. Sending positive thoughts your way! Good Luck!

Thank you for your response. I'm suppose to have a core biopsy tomorrow but i have a slight fever and I've been hacking (coughing) for four days and unable to sleep and I don't have an appetite so I don't know if I can have the biopsy tomorrow. I don't think it's good to have a biopsy with all this congestion and heavy coughing. I will probably go into urgent care to see if they can tell me what it is. I tested negative for covd twice. Hope this isn't related to the mass they found. I feel it could be pneumonia.