I am starting this link because I just got kicked off of a support group for people like me. I was accused of lying and just drawing a scar on my neck instead of really having surgery. Yikes! I was told I could NEVER do the things I said I did. Like run a marathon.
A little background. I had a total thyroidectomy in December of 2008. I had Graves Disease, a tumor on thyroid gland, and several "funny" spots of calcification in my thyroid. My Endo recommended I have the gland removed. After seeking out the most experienced thyroid surgery in Anchorage, AK I scheduled surgery. I was told that there is a 1% chance of winding up with hypoparathyroidism due to damage of the parathyroid glands that are 4 rice sized glands that live behind the thyroid. Lucky for me, all 4 were damaged beyond repair so now I must live with both Hypothyroidism AND Hypoparathyroidism!
Hypoparathyroidism is a rare metabolic disorder. Those pesky little things actually do a lot for you. They control the calcium levels in your body. If your body needs calcium (an essential electrolyte) then it "leached" it from your bones to get into your blood stream. This disorder affects everyone differently and is rare so even the medical field doesn't know what to do with us! Fortunately for me I have a GP who LISTEN'S to me and let's me experiment with different dosages and types of calcium and vitamin D combos.
I learned about the effects of this disorder very quickly. I had been training for a marathon prior to surgery. My surgeon said it would be ok to do the event as scheduled. (12 days after surgery, crazy I know) I made it to around mile 18 and things got very ugly (well the wheels usually start coming off the bus there anyway for a "normal" person!) Fortunately my husband had decided to stay with me for that race. (Gotta love him he was worried about me!) I had horrible cramps in my legs and I was living in what I can only refer to as a "brain fog". I really did not think I was going to make it. (This was marathon number 10 and up to this point I had not not finished an event I started.) My husband carries Tums with him because he can get cramps too. He decided to start feeding them to me. He thought that since Tums have Calcium maybe they would help. Boy did they! I was able to finish the race. Certainly not my fastest time but crossed the finish line all the same.
Thanks to Tums I am able to keep on doing endurance events with my disorder. It's not easy but I am learning how to cope. This disorder has taken a lot of things from me but I will not sit back and just let it take complete control of my life. This disorder effects people differently and that is what makes it so difficult for the medical profession to handle. What works for me does not work for someone else. I still have issues every day that I deal with because of hypoparathyroidism but I push on.
