Anyone experience bad joint/muscle pain post thyroid removal?

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 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.

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

I’m having similar problems. Sensitivities and strong negative side effects to all the thyroid medications. Been hypo for over 30 years, sensitivity is new.
Have you resolved it yet?

Unfortunately I haven’t gotten all the issues resolved, however things have improved. I am currently still on 50mcg of Levoxyl 5 days a week. I had been taking the weekends off, however my new Endocrinologist said that I seem to very sensitive to the slightest medication changes, so maybe the two days off in a row are causing some of the side effects. I am starting a new schedule of skipping Saturday and Wednesdays to see if it helps eliminate some of the side effects. It is tricky!
One of the pharmacists told me that the Pharmaceutical companies can change their formulas and they do not have notify anyone. Changes to the fillers and the location the medication is produced, can be changed and can result in people having sensitivity reactions, however since it is not the active ingredient they do not have to notify people.

I was also referred to a Rheumatologist to see if there is another reason for the negative side effects. Good Luck!

The FDA has to approve any generics so if you search for FDA approved versions of < name brand drug>, you can find the list of them, including the manufacturer, and links to the ingredients list. It is interesting how the fillers / nonactive ingredients vary between manufacturers. But the tough part is how do you know which one(s) you're sensitive to.... I guess we just have to do a lot of trial and error unfortunately

Tirosint has no fillers. It is the only really clean thyroid medicine that I know of. Having medication compounded is another option . That also puts you in control of the fillers. You may need your Dr. to write a letter why you need Tirosint to get it covered.

I’ve tried every thyroid medication and tried all kinds of ways to take it, split doses, nights skip days, very low dose, and I get negative reactions. (Even Tirosint)
Currently my side effects are: extreme heat intolerance, sweating, extreme irritability and heart palpitations even using metoprolol. I feel better when I don’t take any meds but blood shows I am hypothyroid without meds.
I’ve searched and searched for anything written about this and only found one case study.
I am hypersensitive to most depression medications as well. They cause me to tremble within 8 hours of ingestion even just one pill.
I’m hoping to find someone out there that has this too and hopefully resolved it.

This is new. I had been able to take the meds for many years but I can’t say I ever felt my body was using the medicine. I had all the classic hypo symptoms and while my bloodwork looked good I can’t say that I felt well.

Thank you for replying 😊

I had a lot of pain in my legs....cramps, electric shock like pain as well. It was from low calcium. Once I started on calcium and vit D I felt better.