Anyone experience bad joint/muscle pain post thyroid removal?

Posted by gillsden @gillsden, 5 days ago

Hi - This may be a strange question, but I had half of my thyroid removed two and a half months ago. Lab work showed that the other half is not doing it's part as far as hormones and I have started Synthroid. I understand that it could take some time to reach a therapeutic level. I am wondering if it is possible for hypothyroid symptoms to get worse while waiting for the replacement hormone to work. The pain in my joints and muscles are severe enough to impact my day. Before I contacted my physician I wanted to touch base with everyone here because you have been so helpful in the past.
Thank you!

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@skipeak

I had my thyroid out now 2 tears ago due to Hurthle cancer. It came back in my neck region about 4 months ago as well as moved to my 8th rib. I had focused radiation to both areas in August. Now for the last 4 weeks my leg muscles and joints seem to ache all the time. Not sure of the cause yet. I have a meeting at the Mayo next week for my PET/CT scan to see if the radiation worked. I was going to also ask is these new ache pains part of this health challenge.

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I have Hurthle Cell Carcionoma as well, and opted for a total thyroidectomy in June 2023, a decision I came to after meeting three surgeons. She said this was her recommendation because until you get the nodule out, you don't know if it's malignant, and that my Hashimoto's should be gone with the gland out. (The gland can grow back however). I have always battled and continue to battle a significant number of migraine headaches along with muscle and joint pain due to arthritis that I can't seem to get under control. For the headaches, I have been seeing a neurologist and getting treatments. For the other pain points, my Rheumatologist is suggesting a low dose Naloxone since other medications I've tried do not work. I did have extreme pain in my neck about 6 weeks back and my physical medicine doctor said I was having a flair up in my neck and gave me a steroid pack and PT prescription. Hasn't helped and now I'm going to be getting an MRI of my neck. I also have been eliminating gluten (not good for Hashimoto's) as best I can, cutting back on sugar as best I can, exercising more and alternating ice & heat to pain areas. Maybe some of this will help you if you're not already doing it. I am curious, how did you find out the cancer came back, and maybe tell a little bit about your back story, I'd be curious to understand how you got to this point. I know Hurthle Cell is sneaky, and since that's what I have too, I can't help but feel paranoid when something is different with my pain and overall health, especially when I have aches in my bones. I am praying for you and your doctors to help you through this!

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I was diagnosed with hurthel cell carcinoma with a TERT mutation in July of 22. I had my entire thyroid taken out as well as 17 lymph nodes in late Sept. The size of the nodule was over 5.2 cm in size and up against the trachea and nerves. My surgery was about 9 hours. He was very careful and tried to get it all. I went on levothyroxine and in Dec same year I had RAI treatment. I had my blood work every three months and was good with baseline numbers up through April of this year but then my TG started rising. They redid the test in June and my numbers were still increasing so they did a Pet/CT scan and found a tumor in L Trachea area and the R 8th Rib. I had radiation in Aug in both areas and now I will be getting Pet/ct scan next week at the Mayo Clinic in Phoenix. Up until this point I was being treated in Denver but have moved to Arizona so I now will be having the Mayo pick up my care. The reason for radiation was both tumors were to small for surgery. Hopefully these test next week will be positive showing that the tumors are gone. I am now diagnosed with stage III cancer sine it left my neck area. I do feel more tired than usual now and my body ached more than it use to prior to the radiation.
Hopefully will discuss with the doctors next week. I’m not sure if this was the info you were looking for but my prayers are with you and I know first hand this is both stressful and a pain to deal with.

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Hi there,
Years ago I had a modified radical neck dissection with total thyroid removal. I ached in every part of my body for a very long time. It seemed to go forever! It impacted me greatly. The oncologist said it was a common response. Not sure that helps but I believe if you inquire, the reply may be similar. The body goes thru a real trauma. Hugs 🤗

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