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EndocrineWeb Community Advice

Cancer and nearly clueless....

From: mayera80 - 9 years 43 weeks ago

I had a total thyroidectomy Novemeber 17th, the doctors said they found papillary cancer. I'm completely lost as to what to expect. I'll be 30 next month and this just seems so overwhelming. I know that I have to take calcium and that after I've healed up more I have to take the radioactive iodine pill to make sure there isn't more cancer. My endocrinologist says he's waiting for the thyroid hormone to be almost completely out of my system before starting me on synthroid. Since the surgery I've been having a hard time with the pressure on my throat and my legs have been cramping like crazy. I've heard rumors about early menopause, headaches, muscle cramps, bone density problems... Is there anyone that can shed some more light on this for me??


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Dear Amanda,

I would suggest that you read up on hypocalcemia: and the Parathyroid glands....they probably removed them by accident with your thyroid surgery. This can upset your entire body's functions, and since they have you on calcium, thats probably the case, and you will have to take it for the rest of your life.

The best way to manage the symptoms I have found is to eat something with high amounts of calcium in it every few hours. Dan Active 4 oz. probiotic Immunity Drinks (in the yogurt section, has 20 percent RDA per drink. My pain and spasms are reduced when I eat enough calcuim containing foods OFTEN.

Some of the symptoms of hypocalcimia are:

* The most common sign of hypocalcemia is what is called "neuromuscular irritability." Your nerves and muscles, which are directly related to blood calcium levels, may spasm or twitch.
* If your blood test results indicate hypocalcemia, you may notice muscle cramps in your legs or your arms.
* The symptoms of hypocalcemia you experience may relate to how fast or how slowly the fall in blood calcium levels occur.
o If you have long-standing low blood calcium levels, you may notice no symptoms of hypocalcemia.
o If you have an "acute" or sudden drop in your blood calcium level, you may notice more twitching.
* You may notice, with mildly lowered blood calcium levels, numbness and tingling of your fingers and toes.
* You may notice that you are depressed, or more irritable if you have mildly low hypocalcemia.
* With severely lowered blood calcium levels, you may become confused or disoriented. Your heart muscle may contract irregularly due to the electrolyte disturbance.

Also, go and read all you can about the function of these parathyroid glands that they now have probably removed.

I am in the same situation as you, getting very little information from my doctors and must rely on my own research so that I can help manage my symptoms, ask the right questions, and demand proper care by qualified doctors!

If you do not have an endocrinologist specializing in the thyroid...then get one, fast! I have heard there might be injections you can take to keep your calcium levels stable, much like a diabetic must take insulin. Check into it. I believe that Dr. Norman talks about this on the website, and also on videos he posted on You Tube.

Good Luck,

Is this good advice?

I had it five years ago and it's highly curable,the worst thing is the diet. You will have to take thyroid meds for the rest of your life in the morning but I feel great, I work out and run 3 miles every other day. Nothing to worry about! It's up there with skin cancer as far as being curable goes. If there is a cancer that you had to pick, if that makes sense, this would be the one to pick. No Chemo or radiation, you drink an ounce of an iodine drink; it tastes like water not too bad. Just make sure you do your follow ups with your doctor to regualte your medicine; every 6 months or once a year. If your on the no iodine diet, then that would be the cause of your cramps. I just wanted to let you that after 5 years, I've forgotten that I've even had cancer; keep your spirits up, have a nice Christmas and try not to worry :)

Is this good advice?

I had papillary cancer three years ago and had to have radiation..It may be the best cancer for being curable, but it is not easy to not have a thyroid by any means.