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EndocrineWeb Community Advice

post total tyhroidectomy

From: dawn - 5 years 45 weeks ago

I had a total thyroidectomy last year due to papillary carcinoma. couple of months later i had inpatient radioactive iodine done and was then started on synthroid. i have been having trouble ever since. first started with aching bones and the dr found my vitamin d was 10. then i started getting tingling arms and hands and the dr then found my calcium was low. he started me on vitamin d and calcium supplements and now those levels are good. ive been having trouble with daily headaches, sweating and muscle cramps. the endocrinologist suggested maybe it was sleep apnea but i had an overnight oximetry done and that was normal. the dr lowered my synthroid from .2 to .175 and it helped with some of the sweating. i should note that when i was on .2 synthroid my tsh was .01. after he lowered my synthroid to .175 my tsh is .00. can anyone tell my why this happened. i thought when he lowered my synthroid my tsh would go up a little but it didn't.

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I had papillary carcinoma 3 years ago. A month after being diagnosed, I had outpatient radiation. They also started me on synthroid and I had the same problems you mentioned above only my face also swelled up and everytime I would wake up in the morning my ears were swollen and it took 1/2 a day for the swelling to go back down. I went to a new endocrinologist and he started me on Cytomel; which is an old medicine used after a thyroidectomy. He said that most people only have a partial thyroidectomy so they only need the low dose of synthroid. However, when you have a thyroidectomy and radiation it kills every bit of thyroid cells you have so you need something stronger to keep you going every day.
Also, my body temperature is always low when my ths levels are low. That is one way you can tell if your thyroid is on track.
I don't know if that helps or not, but I wish you the best of luck in life. It's so hard to keep everything at the normal levels and it makes life hard from day to day struggling without a thyroid. I totally disagree with whomever said thyroid cancer was the best cancer to have. It may have been easy to cure, but the every day aches and pains and numerous testings you have to do are not easy by any means!

Good luck

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I had the same thing done two years ago. Everything was fine until I had the I131 treatment. I gained 14 lbs. in two weeks while off synthroid. They said not to worry the weight will come off when we get your levels back right. My TSH level when I entered the hospital was 62 it was another 24hrs before I got back on meds. I also began having trouble with calcium levels even though I was taking 1600 of calcium. I am now taking 3000mg and 1000IU of vitamin D and can bearly maintain 8.0 calcium level they say it's no big deal but what about the long term affects of being low. I have gained 35lbs. since this all began and I am just not the same person and so frustrated when nobody wants to listen. This cancer is usually caused from radiation exposure and I work in the emergency department it also can cause your gallbladder to die I also have had that removed since then Is there any hope cause I don't see it and I have an oncologist, a radiation oncologist, and even saw an endocrinologist and nobody will listen to me

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In 1967 I had metastatic pap.thryroid cancer. I had a total thyroidectomy and parathyroidectomy. I had surgery after for metastasis. don't give up hope keep searching for the right endocrinologist. I will be 67 this month, ride a Harley and work out for 2 hours 5days a week at our local gym.

I still have tetany at times also have had several kidney stones...calcium.I take 1,000 mg Vit D daily plus calcitriol once weekly. hang in there find the right Dr. for you . G.

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Well looks like I will have to go farther for the right doctor. I wish I had the energy to work out that much. I envy you. I work three 12 hour shifts a week and have a three year old which I know drains me down but I have never not been able to keep up till I had the surgery. Gonna keep looking thanks for the hope

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