My Illness and Me(republish for Living with Disabilities and Chronic Illness Groups)

For many years I was very sick and didn't know why. I had a splitting headache all the time. I felt like I had a constant sinus infection which in turn caused severe nausea. My muscles were always sore, no matter how long I rested. My heart would race up to 180 beats a minute. I was irritable and cranky. I couldn't walk more than a few blocks at a time without being winded. If you said 6 words to me and asked me to say them back to you, I couldn't. I had no attention span, no energy and things were only getting worse.

I went to the doctor several times. I had blood work done, was told it was an infection, took antibiotics way more than anyone should. Still I was sick. I went back to the doctor, still they didn't help me.

After 6 years of hell, my throat started to visibly swell. I typed my symptoms into a search engine on the internet like I had done dozens of times before, to no result. But this time I added the words "swollen neck."

That afternoon I got a doctor's appointment and told them what was wrong with me. Grave's disease and hyperthyroidism. Don't freak, it isn't deadly if caught and treated. Unfortunately, I had it bad and for many years.

Grave's disease is an auto immune disorder that causes your own immune system to attack itself and your thyroid; hence the neck swelling. My thyroid blew up to 10 times it's normal size virtually over night. Bear in mind that a normal thyroid is the size of a walnut. I felt as if I had swallowed a baseball.

The doctor sent me for an uptake test the next day. What that means is I had to go into a part of the hospital that is behind a steel door, take a small cup with a pill in it, from a man wearing a full body lead apron. There were no less than 5 yellow hazard signs in this room. I was told not to touch the pill, just swallow it quickly without letting it touch the inside of my mouth unnecessarily. Stay away from children under the age of 17 for 48 hours and come back the next day. I then swallowed a radio active pill.

The following day I returned to the aproned man, who then made me lay on a large, weird plastic table with a large, plastic, funnel shaped hood above it. I was told not to move or breathe too deeply; easy stuff after swallowing Chernobyl.  For about an hour this machine hummed and droned over my swollen neck.

After that test I had blood work done to measure the amount of thyroid hormone pumping though my blood. Again, easy compared to the other tests.

A few days later I went in for the results. It seems the thyroid is a sponge for radio active material. It doesn't build up anywhere in the body like it does in the thyroid. The sicker your thyroid is, the more radio active material it absorbs. When I asked the doctor how much of the radio active poison my thyroid absorbed, he replied, "All of it."  Not what I wanted to hear, but I just wanted to get to the wellness part. I then asked about the blood work; another shock. Normal thyroid range is 210 to 440, mine was 2200. No wonder I was so sick.

Now everything was starting to make sense. All of my symptoms could finally be explained. I understood that this is not curable. But it is treatable. I finally had hope of feeling well. That didn't last long.

My doctor put me on propylthiouracil or PTU for short. I took 27 pills a day for 3 months. It helped immediately, but unfortunately it nearly ruined what little of an immune system I had left. I developed a nasty sore in the back of my throat that had to be biopsied; not fun when the anesthetic doesn't take. I had a cold for 3 months straight and finally told the doctor I need to see some one who knew what they were doing.

So, off to a endocrinologist I went. For sure NOW I would get the proper help, right? I was impressed when I walked into his office. He was Harvard educated, had written countless articles, was published in all the important medical journals. What a relief.

What a quack. I saw him for a year. He put me on methamizole which is the only other anti-thyroid drug out there. It worked great at first and the cold went away. The sore came and went, but was not enough to bother me. But then after about 7 months, my hair started to fall out by the hand full. I went in to the doctor right away and told him something wasn't right. I was starting to feel ill again, my hair was falling out, I had lost 30 pounds with out even trying. I wasn't complaining about the weight, but my hair! I had long thick hair my whole life! Make it stop, Doc! You know what he said? "Don't worry about it. It will grow back someday."

I vowed never to see another fucking doctor again. I went home and started researching every article and publication and book that had any thing to do with my disorder. It wasn"t much. I could only fill a small folder with the info I found.  I moved on to real people with the same disease. What did they do to help themselves?

I started taking vitamins, cut sugar drastically from my diet; I also cut overly processed food, junk food, fast food. I started walking more. I started taking a copper supplement and within 3 months I was off the methamizole.

I did go see another doctor, but after one visit and him telling me he wanted me to have my thyroid destroyed with radiation, I was out of there.

I wish I could say that was the end of it and I am cured. But I can't. Even as I sit here typing, my heart is racing and I have a headache. The symptoms are all coming back again. I have upped my copper and will start watching my diet closer. I will try to exercise more. Maybe I will call my insurance company and see what new endocrinologists are on the menu this year... maybe.