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Discussion Starter · #1 ·
I just wanted to reach out for some help! In 2017 I was diagnosed with thyroid cancer and they took out my right thyroid hoping that the left would be OK. It wasn't. 2 months later they went in again and took out the rest. The dr nicked one of my parathyroids off and had to reattach it with a bit of my thyroid. I struggled for 3 years trying to get my calcium regulated but to no avail. I now take 2 calcitriol daily and 4 oscal daily. Now I'm prepping for my RAI treatment and I came across this website. I have had so much pain since my surgery and I have gone to a rheumatologist and an endocrinologist and they keep sending me back and forth and say the other dr will help me. I seriously hurt all day long some days it's so bad I lay on my couch all day. Other days I have muscle spasms and am as weak as a kitten afterwards. I've been told it could be lupus or my low calcium, but the past year it's always been around 8.5 so I don't know. Has anybody else had trouble with joint and muscle pain after thyroid removal?
 

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What are your thyroid levels like? It can be tough to manage the thyroid levels without a thyroid (or mostly without). Often people in this situation benefit from T4 and T3 medication. Either taking synthetic versions of both (such as Synthroid for T4 and Cytomel for T3). Get your FT4 and FT3 tested along with your TSH. Another alternative is taking natural desiccated Thyroid or NDT such as Armour Thyroid. Armour seems to be the best brand nowadays so make sure they don't give you the generic. NDT is not often used by conventional doctors.

Low calcium can be caused by a underactive parathyroid. I'm not familar with treating that. However, I would keep looking for a higher quality endocrinologist. Often this requires going to a big city and looking for the best ones. Especially ones that specialize in thyroid and parathyroid. Check out this website for finding a thyroid doctor that is more likely to be decent: Patient-Recommended Thyroid Doctors (U.S.)
 

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My tsh is 0.185
T4 is 1.35
T3 is 84
I see Dr Chase Hendrickson in Vanderbilt
That's total T3 and not free T3. Need the ranges also as they can vary from testing site to testing site.

TSH is a bit low but hard to say with all you have going on. If your FT3 is low and your FT4 is high, that can cause annoyances like anxiety, tremors, etc.

I would really check on underactive parathyroid. I'm not familiar with it, but on google it said something about taking calcium and vitamin D. Make sure you take your calcium (if you do) 4 hours away from your thyroid meds.

Often people without a thyroid end up with low FT3 because the thyroid isn't helping out at all providing T3. Those of us still with a thyroid (even if we have hashimotos) may still be getting some help. That's why people without a thyroid, or people who have had their thyroid mostly destroyed by hashimotos, or radioactive iodine do best to take some T3 with their T4. I've seen this pattern often, and I've even seen endocrinologists acknowledge this fact.

Your doctor on paper looks good. So I'd ask about adding some T3 meds but also what to do about the parathyroid issues. Don't be afraid to get second opinions though. I find there is a large variance in quality when it comes to Endocrinologists. Especially on issues beyond diabetes. It's unfortunate.
 

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Another thing to consider just in case. Biotin really messes up thyroid labs (Vitamin B6). Check any multivitamins or other supplements to ensure you don't have that in them. If you do, just hold off taking those 3 days before the test. You can then start back on them after the test.
 

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Discussion Starter · #6 ·
Thank you so much you have been very helpful. I go to see endocrinologist next month for labs again so I will definitely mention this to him.
 

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i had cancer diagnosis six months ago. thankfully i was first stage. still i was very scared.
had to do radiation and chemo therapy. i learned that it is more painful for the others to watch us suffer . it was very depressing for me. after recovering from cancer i had to depression therapy . it is called expressive therapy for depression. it is the best .
expressive therapy for depression
 
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