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

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@ameliajones

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

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

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@bevr

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

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@khd003

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. 😣

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

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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.

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@chastp

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.

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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!

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@chastp

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.

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This is so hard! I am sorry you are going through this.
Hoping the new CT gives some direction. I know its frightening, but try to keep calm and relaxed. Stress will only increase your symptoms and anxiety. Try some deep breathing , breath in to count of 5 and out to count of 10.
Get some time in the sun and please at least drink protein shakes to keep your health up . Let us know how your CT goes.

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I'm truly sorry you're going through this too. I had my thyroid out due to cancerous nodules. Biopsy was definitely an experience but after surgery I felt so much better. Was having swelling & swallowing issues before surgery. Was better after. I was placed with a speech therapist that helped me with swallowing & speaking. A true godsend! I suggest you ask your Dr about starting that. It'll give you more confidence over the situation. And relaxation techniques as well. Try doing breathing exercises & get outside if you can. Taking one day at a time & focusing on the good things in life is what gets me through. Good luck to you & let us know how things go. You are not alone! Reach out!
God bless!

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@koh

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!

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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.

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@chastp

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.

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Oh no! Running a fever is not good for any procedures….I tend to think they might just postpone the procedure for a week until you are feeling better. There are a lot fo cold-like viruses going around (RSV is a big one in my area) so it might be something like that and not necessarily related to your situation. You should definitely call the doctor and tell them you are sick….it does not seem like a big deal to postpone a test for a week so you can get over the infection, but the doctor will let you know. I hope you feel better soon.

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