Anyone experience bad joint/muscle pain post thyroid removal?

@gillsden
Thank you for your response. Yeah was on hydroxizine but not so good if you have a tendency of afib. 😞Trying a healthy dose of gabapentin. Helps but brain fog…

@julesjpm
Hi - I am sorry you are going through this. It’s been a year post surgery for me and things are awful. Endo doesn’t care about how feel only numbers. I want to comment on the insomnia. It was awful. Wide awake for days, weeks. I was a zombie. Someone mentioned Hydroxizine and I mentioned it to my doctor (not Endo). It has been a complete game changer! I don’t know if that’s a help but I wanted to pass it along. Still working on the aching pain. Has anyone had any experience with the mineral supplements I see advertised for thyroid dysfunction?

I have had major intolerance to thyroid replacement. Now on Tirosint. Major night sweating and insomnia even after lowering dosage from 125 to 112 now at 100 with same symptoms over a course of 11 mos. What to do

Im awfully sorry to hear about your mom. I've lost both my parents now. Its really hard. I was my mom's care giver also. So I stayed very stressed out. Still have trouble with it. My body was adjusted to her so I don't sleep well. Im sure its hard on you also. Im sure your tests will come back fine. Please have them run all the tests I listed below. You may be surprised to find out that these symptoms could be your thyroid or parathyroids. It also affects your joints and inflammation. You could possibly be on medications that you don't need and that may be why you feel you need a bigger dose.
You seem to have all the symptoms I had including the burning mouth. I had little blisters in my mouth and toung. Now that all the thyroid and parathyroids are gone the burning is no longer there. It affects all your hormones. They removed my thyroid which was about 4 times the size it should have been. Also two parathyroids that are supposed to be the size of a grain of rice and both of mine was 1.5 cm. I also had really bad heart palpitations which are now gone. Its going to take 3 to 6 months for my body to adjust to it being gone and my medication starting to work properly. There's TSH, FREE T3, FREE T 4, TPO ANTIBODY, TG ANTIBODY, REVERSE T3, CORTISOL AND A 24 HOUR CALCIUM URIN TEST. Unless they do all of these tests your results will come back normal. They ran my top 3 tests they always run before I went into surgery to prove a point. They came back showing my thyroid was totally normal. I hope this helps some. Im sure everything will be fine so try not to stress.
God bless you 🙏🏻

Thank you! I am in the process of working with a new Rheumatologist to determine if some of my “side effect issues” are related to another cause and will ask about this gland….apparently Hashimotos Thyroiditis is often found with other autoimmune diseases. My father had Celiac Disease, however the Celiac test came back negative…whew!!
I am currently under a lot of stress due my mother passing (I was her care giver) and was having A LOT of issues. My doctor recommended increasing my Levoxyl one more day to 6 days per week (50mcg); I had been taking it 5 days per week. When I change medication I often feel the results very quickly and I felt some relief right away. It has now been about 3 weeks and I am having an increase in the negative side effects again (some of which include: burning mouth, terrible itching, body aches, headaches, weight gain, hair loss, insomnia, extreme fatigue, poor focus and shortness of breath). Prior to increasing my dosage, my blood work had been in the normal range, however the TSH was at the top of the normal range and my T4 was at the bottom end of the normal range.

I had thought I could wait the 6 weeks for my next blood test before having my dosage adjusted again, however the symptoms are too hard too manage; and since they are increasing I am not under the impression it will improve once my body adjusts….the burning mouth is similar to having just eaten an extra spicy serving of Buffalo wings!!!…and its all day long! I will more than likely have to reduce my Levoxyl to 50 mcg 5 days per week again.

Unfortunately, during this time I also went for a routine Coronary Calcium Screening (which was good) but had a finding of a 3mm lung nodule. Since there seems to be an association with Hurthle Cell Carcinoma and lung cancer it is hard not to be concerned. I am scheduled for a PET/CT and blood work next week, so I am hoping it’s, “No big deal.”

The only thing that I say about this whole “Thyroid thing” is that symptoms can change fairly quickly and you have to pay attention and not just assume it’s nothing. From what I have read, many issues can factor into the equation, so it can be difficult to get regulated on medication. Many people seem to take Synthroid and do very well on their dosage, however if you have a sensitivity to side effects from medications it can be much more challenging. I do not have any known allergies however sensitivity to medications is another story….which is why I try and have the lowest dose possible.
At the end of the day, quality of life is the most important thing so people should not just assume the issues are part of the package of thyroid disease….keep asking questions and keep trying to find the balance of treatments that work for you. Good Luck!

You have two glands one on top of each kidney. My surgeon said if you have hashimotos that they both need to be removed. They regulate your hormones, metabolism and a lot of other things. Simpler to the parathyroids. So you may want to ask your doctor about a cortisol test. That will tell them if they are bad.

Hi
I had a modified neck dissection and thyroidectomy. I ached terribly! I honestly thought I wouldn’t be able get up in the morning. My oncologist explained it as a huge “hit” to the system and because hormones are involved it really messes with you over all. Plus, in my case, adjusting to synthetic hormone, all takes time for body to adjust.
Hope that helps. Best of luck.

I only had 1/2 a thyroid removed too. Then it made my hypothyroid so I've been on levothyroxine for 30 years. It worked right away and I didn't have joint pain. So I was about 32 years old when I got 1/2 removed.

@tmckinney5, having unresolved medical issues is so tiring. I can understand your despondency and am so glad that your endocrinologist gave you hope.

If you would like to get a second opinion at Mayo Clinic, your physician can make the referral or you can self refer. Here's where to get started: http://mayocl.in/1mtmR63

I have had some back pain since they took me off armor thyroid. My throat gets sore in the area of my remaining half thyroid and I do sleep a lot. Something is off here.