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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.

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chastp | @chastp | Mar 3 6:06pm
In reply to @koh "Oh no! Running a fever is not good for any procedures….I tend to think they might..." + (show)
@koh

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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Thank you. I thought I would wear a mask and have them test me for covid and what ever and coiugh for them and see what they say because hackying away right after or during the biopsy I would think would not be good for them or me or the test results.

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Lynne Marie | @lbrockme | Mar 5 10:37am
In reply to @chastp "Thank you for your response. I'm suppose to have a core biopsy tomorrow but i have..." + (show)
@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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Just checking in to see how you are holding up. Hoping you are feeling better.

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selfhealing73 | @selfhealing73 | Jul 21 8:39am

Had a TT about 13 years ago and a total hysterectomy 1 year ago. Many hormones fighting each other. I started out being hypothyroid after the Tt which is to be expected. I have taken a high dose of 200mcg synthroid for years. Within the last 5 months I have felt horrible, sweaty hot, extreme muscle aches, joint pain all over, thought I was becoming paralyzed, anxiety, mood swings rapid heart rate, fatigue all the symptoms of hyperthyroid. Which my tsh level is 0.007. They found tt tissue approximately 1.5 cm about 1 year ago. They biopsied it and it is thyroid tissue with no cancer present at this time. I am now extremely hyperthyroid which explains all my symptoms mentioned above. They are wanting to remove this tissue due to my father having tt nodules they watched for years and then they turned into cancer & spread throughout his body ending in bone cancer & eventually taking him home. For some reason God is placing extreme thought & caution on myself whether to have this nodule removed or for to keep up on monitoring the tissue growth, pathology via sono every 3 months. My body has been under extreme stress with many losses I’ve endured the last two years. I truly don’t feel healthy enough to go through another surgery yet. Is God regrowing my thyroid to show he can perform miracles? Any feedback is greatly appreciated & welcome
💛

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2 replies
koh | @koh | Jul 22 7:52am
In reply to @selfhealing73 "Had a TT about 13 years ago and a total hysterectomy 1 year ago. Many hormones..." + (show)
@selfhealing73

Had a TT about 13 years ago and a total hysterectomy 1 year ago. Many hormones fighting each other. I started out being hypothyroid after the Tt which is to be expected. I have taken a high dose of 200mcg synthroid for years. Within the last 5 months I have felt horrible, sweaty hot, extreme muscle aches, joint pain all over, thought I was becoming paralyzed, anxiety, mood swings rapid heart rate, fatigue all the symptoms of hyperthyroid. Which my tsh level is 0.007. They found tt tissue approximately 1.5 cm about 1 year ago. They biopsied it and it is thyroid tissue with no cancer present at this time. I am now extremely hyperthyroid which explains all my symptoms mentioned above. They are wanting to remove this tissue due to my father having tt nodules they watched for years and then they turned into cancer & spread throughout his body ending in bone cancer & eventually taking him home. For some reason God is placing extreme thought & caution on myself whether to have this nodule removed or for to keep up on monitoring the tissue growth, pathology via sono every 3 months. My body has been under extreme stress with many losses I’ve endured the last two years. I truly don’t feel healthy enough to go through another surgery yet. Is God regrowing my thyroid to show he can perform miracles? Any feedback is greatly appreciated & welcome
💛

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Wow! That is a difficult history! Having thyroid tissue growing back is often mentioned, so I tend to think it is more common than we realize…..it seems odd but the body is an amazing organism! Since you changed from “your norm” to having hyperthyroidism, it would appear the thyroid tissue must have caused things to change. Considering your father’s history, it seems like you should follow what the doctor’s say after they monitor it for a little while. The monitoring time will give you the time to feel healthier, in the event they recommend more surgery. Since you are going for frequent scans, the doctors will be able to see if the tissue is growing quickly, which they say is often an indicator of cancer. I wish I knew God’s plan to comment on miracles but he keeps his plans to himself, so we have to try and go with the experts advice and how we feel. It sounds like you have a good plan in place with monitoring and trying to feel stronger before having surgery, so if the doctors recommend surgery, you will be ready. Good luck!

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csalena63 | @csalena63 | Jul 22 8:54am
In reply to @selfhealing73 "Had a TT about 13 years ago and a total hysterectomy 1 year ago. Many hormones..." + (show)
@selfhealing73

Had a TT about 13 years ago and a total hysterectomy 1 year ago. Many hormones fighting each other. I started out being hypothyroid after the Tt which is to be expected. I have taken a high dose of 200mcg synthroid for years. Within the last 5 months I have felt horrible, sweaty hot, extreme muscle aches, joint pain all over, thought I was becoming paralyzed, anxiety, mood swings rapid heart rate, fatigue all the symptoms of hyperthyroid. Which my tsh level is 0.007. They found tt tissue approximately 1.5 cm about 1 year ago. They biopsied it and it is thyroid tissue with no cancer present at this time. I am now extremely hyperthyroid which explains all my symptoms mentioned above. They are wanting to remove this tissue due to my father having tt nodules they watched for years and then they turned into cancer & spread throughout his body ending in bone cancer & eventually taking him home. For some reason God is placing extreme thought & caution on myself whether to have this nodule removed or for to keep up on monitoring the tissue growth, pathology via sono every 3 months. My body has been under extreme stress with many losses I’ve endured the last two years. I truly don’t feel healthy enough to go through another surgery yet. Is God regrowing my thyroid to show he can perform miracles? Any feedback is greatly appreciated & welcome
💛

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I too have had thyroid cancer, and I waited until the thyroid issues became cancerous. I only had the cancer on one side of the thyroid at that time. My doctor informed me that he was going to remove both sides because if one side is cancerous. The other will become cancerous as well. Given your family history, Trust God and get the new growth out of your throat so it will not turn cancerous as well. I was informed by my doctor that on rare occasions thyroid can grow back as well as the cancer. I would not waste time on this. I hope this helps.

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