Anyone experience bad joint/muscle pain post thyroid removal?

Go to Mayo!! I think you’ll be very glad you did…

2019 I had a Thyroidectomy d/t Graves Disease. Afterwards I kept breaking out in hives and feeling horrible for years. The brain fog, muscle/joint pain, nausea, anxiety, along with my bodies inability to stabilize my TSH levels, was making me lose my mind. I was sent to Immunologist without any answers, just more meds. I finally went back to my Endocrinologist and she realized I was allergic to the binders in the pill form of levothyroxine. Things have improved since starting me on Tirosint but I still am having trouble with random hives, my ears still turn bright red/hot feeling, and muscle pain. It’s worse at night in bed and I struggle turning side to side without pain that feels like I have worked out for 10 hours straight. The severity does come and go. It’s so weird. I feel like I can’t take anything without waking up with hives or having a reaction. It’s so hard to pinpoint triggers. At one point through all this I just wanted to be done because the doctors were horrible. I lost myself and who I was in the depression of it all until my endocrinologist gave me hope and listened to me. I wish I could find answers as well. She recommended me to go to the Mayo Clinic but I am tired of let downs and no answers.

Thank you!
I am trying different meds and combos. I have been working with a functional medicine Dr. but have an appt. with an endocrinologist in late January. I worry he won’t have answers for me.
Years ago I had to stop drinking coffee because I started to have a bad reaction. I switched to tea. After about 2 years I had reactions to it. Then I switched to a different tea and again in about 2 years had reactions, I only occasionally have them now and I am not bothered.
So the extreme reaction to the thyroid meds and to any kind of serotonin boosting antidepressant all fit the pattern. As I look back at my 30 years on thyroid meds I have realized that my bloodwork said I was good but I’ve always had the hypothyroid symptoms, can’t lose weight, depression, low energy and brain fog. I’ve really never had relief. So it makes me wonder if my cells have used the meds and now they are rejecting them ☹️
I will be interested to know how your medicine adventure precedes!

I can relate to the issue with the side effects! I will mention that when I tried Tirosint I had an extreme reaction….I thought I was having a stroke! I was told to stop it immediately and within a few days I felt much better. Considering how long it takes for the medication to get into my system, the immediate improvement after stopping it made me think I had an intolerance to their formula. When I changed Endocrinologists, the doctor wanted to try Tirosint again and attributed my issue with the pill form; he stated, “You did not try the liquid version.” I tried the liquid version and shortly after starting I started having the bad reactions again and once again I had to stop taking it and immediately felt better. When I was researching Tirosint, I noticed several posts about needing a much lower dose due to it’s lack of fillers and my dose had been the same as my Synthroid so maybe that was why the reaction was so severe.
I take one medicine so any side effects would be related to whatever I am currently prescribed. As of now, the 50mcg of Levoxyl 5 days a week seems to have the least of the negative side effects. I just started splitting the days off from medication, to see if this helps. I have an appointment to go over my results next week so I will see if I can reduce it further or if I need to go to 6 days a week. One of the odd things with my side effects is that I seem to have more symptoms of Hyperthyroidism, yet I have Hypothyroidism. Since I have 1/2 of my thyroid my hope is that it will pick up the slack and I can manage with the lowest dose possible to minimize side effects.
If you are taking several medications, maybe the issue isn’t the changes in the thyroid medication but a change in one of your medications….maybe they changed what they use for filler. There is a compatibility site on the internet where you can put in your medications to see if they are compatible. The side effects associated with some very common medications could be playing off each other. I recently had a meal with Soy Beans and then felt extreme weakness and tiredness ….I had forgotten about the impact of Soy on thyroid. So many variables when you have an issue with side effects!
Since you took your medications for a long time without issues, I would tend to think it might be a change in the formula that caused the issues for you. I have a long history of side effects with medications, as did my father and Grandmother, so I tend to think it’s related to my history. On a good note, it motivates me to use old fashioned remedies for common ailments! Good luck!

My soreness was after my partial thyroid removal.

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.

Thank you for replying 😊

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.

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

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!