Thyroidectomy: What to choose based on 70% cancer probability?

Hi Colleen,
Thank you for reaching out to me for an update on the removal of my thyroid. I was truly so nervous about getting this done! They have been watching two nodules for me for six or seven years. I am with the Boston hospitals, which are wonderful. Over the last few years, the nodules have grown. They were on the right side of my thyroid. There was a very tiny one on the left side of the thyroid, but it was too small to biopsy. I had a biopsy of the two nodules on the right in 2021. They had grown but were fine. I had an ultrasound in Feb and the test showed that they had grown and changed, so I needed another biopsy. The results came back as cancer on the nodules. My endocrinologist, along with the dr who did the biopsy, sent me to a wonderful surgeon at Brigham and Women’s Hospital in Boston. He was kind, caring, and highly regarded for his expertise in this type of surgery. He assured me that I would do “great”! He was right! I recovered very quickly from the removal of my thyroid. He called my husband after the surgery and told him that I had made the right decision to have the entire thyroid removed because there were additional nodules present that the ultrasound had not seen. He had given me a choice to remove half of the thyroid or the entire thyroid. Because there was an additional nodule starting to grow on the left side, I made the decision to remove it all. I have to say that after two days, I felt great! I am feeling like myself now, taking the one small thyroid pill every morning, and I have my energy back. I am so grateful that this cancer was discovered before it spread to the lymph nodes. My recovery was great and I credit my surgeon for a job well done!

I can so relate to you! The side effects, the NORMAL blood test prior to finding the nodules, the list goes on. It's crazy how the thyroid can wreak such havoc without any signs of issues! It seems until you get it out, especially for hurthle (oncocytic) cell you really don't know. Wishing us all the best of health moving forward!

The way I see it, if we need to take medicine, we need to take it. But if everything affects how much or how little hormones your body produces, it is hard to figure out how to figure out a dosage for
medication. The body mechanics would be a changing system and the medication is a constant. It is helpful if you keep a symptom diary with the medication and dose. I have been told that most people start medications and don’t have any concerns adjusting to it. But, if you start to notice issues and don’t feel right, you should consider the medication and dose first. It should be noted, I have had a history of side effects for medications….. no real allergies just not tolerant to medications; so issues might just be related to that. My father, Aunts and Grandmother had issue with several medications so it could just be some type of an intolerance. The doctors told me that most people do fine on medication so don’t worry. Good luck!

I saw this comment after I replied to the first. I’m sorry. That must have been very difficult to hear. I wish you the best.

It sounds like you have been/are on a roller coaster. I haven’t even had surgery yet and from what everyone is saying it sounds like the medication is the worst part. Thank you for your reply. I appreciate it. Take care!

I forgot to mention…. Prior to surgery, I had a large right sided nodule but my blood tests were ALWAYS normal. No signs of any thyroid disease! Post surgery, I was diagnosed with Hurthle Cell Carcinoma and they said I had Hashimotos Thyroiditis….. the thyroid seems to be a very tricky organ!

Yes! I have been dealing with that too! My doctor says the same thing. It is hard to know if the issues are due to Thyroid, side effect of medication, or some other cause. The ONLY thing I have been able to figure out is that subtle medication changes can have BIG effects. The range of “normal” is significant. When my TSH is very low I have very bad side effects. When my TSH is midrange, I am still having side effects but they are “ better.” High doses of Synthroid were very bad and Tirosint made me think I was having a stroke! I am currently on 25mcg of Synthroid 5 days a week….. feeling “ better” but still too many side effects to say I feel good. ( blood test next week might give us a clue on what to try next) One of the odd side effects is internal tremors….. I feel like I’m shivering inside yet no tremors outside. Joint and muscle pain, leg cramps, insomnia and being unfocused seem to still be here too but less extreme. I have appt with Rheumatologist in a few weeks; Dr wants to see if something else is influencing this. I don’t know, but whenever I went off the medicine ( due to extreme reactions and pain) the issues went away for a while. It is a tricky situation! My thyroid numbers fall in the normal range; you have to go by both thyroid numbers AND your symptoms and how you are feeling. My first Endocrinologist just kept telling me we want to keep your TSH low to prevent cancer and kept increasing my dose of medicine. I could not take all the side effects… I had to change doctors because she kept increasing my medication and I just kept feeling worse. Definitely advocate for yourself. Good luck!

Hi All - The longer I wait for surgery the more questions I have. Has anyone experienced symptoms of thyroid disease even though their labs have all been normal. My doctor said that isn’t possible but I truly feel like I have all the symptoms and my labs have always been normal. Thank you for your input!

That’s so great to hear! If you are able to keep in touch in the future, I’m curious to see how the medication is working for you Take care!

Thank you so much! I feel completely back to myself after the thyroid surgery one week ago today. I was conflicted as to whether to get half of the thyroid removed or the entire thing. I chose to get it all out. I am so glad that I did because my surgeon found additional nodules when it was removed that had not shown on the original ultrasound. Thank you for your post and for thinking of me.