Anyone experience bad joint/muscle pain post thyroid removal?

I have felt more body pain also. My back and joints are perpetually sore.

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 🤗

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.

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!

I had a total thyroidectomy Oct 21. I am on levothyroxine 137. I have no pains. I am posting just to record a different outcome than yours.
I would see your endocrinologist, but have labs done first.
Hugs.

I had a nodule that they were monitoring. The doctor at the cancer hospital did not think it was cancerous and I did not want to have surgery unless necessary, because of the potential voice issues. He said the nodule was soft and not cancer, however it was crushing the area and causing other problems due to the large size. When I had surgery the doctor discovered that it was cancer…Hurthle Cell Carcinoma. I was told incidentally during my follow up that I had Hashimotos and then it has been confirmed several times.
I was referred to a rheumatologist due to my difficulty with side effects to rule out another influence….I went for two visits to a rheumatologist who turned out to be extremely unorganized. She repeated the same blood work twice by accident (within two weeks!) and didn’t do the tests she was going to do; and then tried to read another persons results to me even after I told her that the date of the blood test was not right. She ruled out a few other autoimmune diseases and arthritis, but thought I had a connective tissue issue….she did not say what that was. I have been unable to get copies of my blood tests.
I am going to ask my new Endocrinologist for name of a new Rheumatolgist; I thought it would be best to get one that she uses in the clinic. I am hopeful! Thank you

I am so sorry to hear all that is happening to you.Thank you for your response. Please send updates. Take care!

So very sorry you are going through this. I hope your issues are resolved soon. Hugs.

I'm glad to hear that you ate listening to your body and not just one doctor's opinion. Good luck to you!

Thank you. I changed doctors when the doctor stopped listening and continued to want to increase medication to “keep your TSH number very low.” Tirosint gave me an extreme reaction where I thought I was having a stroke and the next doctor wanted to try the liquid version…..I had the same extreme reaction! I have had my doctor tell me how everyone seems to tolerate Synthroid well, when I told her about my side effects. I do not trust a doctor who does not listen to their patients side effects when the side effects interfere with living. I trust doctors who listen to their patients and try to come up with possible solutions. When the medication was stopped and the issues went away, I concluded that the medication was causing the reaction. Unfortunately, I need to take medication but have had a lot of difficulty getting a medication and dosage that helps with hypothyroidism without causing the negative side effects.
I should mention that I have had a history of having side effects from medications, as did my father and Grandmother, so I assume it’s something genetic. I do not tend to take a lot of medication unless necessary and am only on Levoxyl 5x’s a week; so any reactions would be associated with this medication.

I continue to see the Endocrinologist at the cancer hospital, who is trying to help me get my medication regulated, however I am not having as much success finding an endocrinologist outside of the cancer hospital. I am hopeful that the specialist with Hashimoto will put me on the right path.