I have hemo-what? by Charley Sutton

I’ve had trouble sleeping for most of my adult life. I would sleep for an hour and be awake for two. Many times the alarm went off before I ever closed my eyes. I was constantly exhausted. Once or twice a week, I would crash for eight to ten hours straight.

In the spring of 2011, I was driving down Broadway and began to see double. I pulled over into the wrong drive of the two I saw and nearly hit a pole. I began to lose my strength and sense of balance soon after.

I fell while walking, fell out of a chair trying to tie my shoes, and ended up walking with a cane to keep from falling. I went to doctors all over Indiana, and they agreed that something was wrong, but none knew what.

I struggled with it for several months until my family doctor told me he believed I had fibromyalgia. The pain, fatigue, sleeplessness, memory trouble, and weakness that I had experienced are all markers of fibromyalgia.

My doctor took me off all of my medications and started over. He focused on keeping me working, because there were no other viable options for me. He gave me a pain inhibitor, a muscle relaxer, and pain medication.

It worked. Ten years later, I’m still working. About four years ago, I was having trouble sleeping again. Pain kept me awake most of the night. I was again suffering from fatigue and memory problems. My doctor sent me to a sleep specialist.

I told the specialist about my joint and muscle pain. I told her about the fatigue and brain fog. That’s what she called the moments I can’t pull a word from my memory.

She had a thought about what might be wrong with me. She tested my ferritin level. Ferritin is a protein in your body that contains iron. If the level is too high, your body deposits iron in your body tissues causing damage. My ferritin level was 469. It should be between 50 to 250 for an adult male.

This can be a symptom of a genetic disorder called hemochromatosis. I was sent to a hematologist and he ordered a genetic test to confirm that I had hemochromatosis. It confirmed his diagnosis. This disorder, if left untreated, can cause organ damage and eventually death.

There is no cure for this disorder, but there is a treatment that nullifies it. If my ferritin level is above 50, they draw a pint of blood which removes iron and lowers my level.

The doctor had four pints of blood drawn over an eight week period when I was first diagnosed. He reduced it from 469 to 50, scheduled me to be tested every six months, and draws blood if it is over 50. If it is over 200, he has me take a blood test two weeks later. If my level is still high, he orders more blood drawn and a retest until the level is around 50. I will have to do this the rest of my life.

Hemochromatosis, since it’s symptoms are similar to other disorders, often goes undiagnosed. It actually can start causing problems for men in their mid to late twenties. We followed the doctor’s advice about having my teenage son tested, and it confirmed he had the genetic disorder as well. We will have to have his ferritin level monitored when he reaches his mid twenties.

I wonder how many of my physical issues over the years could have been prevented by a simple blood test. I am still diagnosed with Fibromyalgia, but a couple of the symptoms of it are the same as Hemochromatosis. I feel better in some ways since the doctor started monitoring my ferritin level, and I can sometimes tell when it’s high.

If you’re having a blood test done because of fatigue, pain, or trouble sleeping, have the doctor check your ferritin level. For men the effects can start in their twenties. For women it can cause problems after menstruation ends through menopause or a hysterectomy.

Sometimes ancient cures like bloodletting actually aren’t quack medicine. They may have been treating the wrong condition, but it works for me.

~*~

My name is Charles Sutton, and I am a maintenance technician from Peru, Indiana. I’ve been an avid reader for as long as I can remember. I’ve always aspired to write and have put pen to paper for almost as long. As I grow older, finding the time to write gets easier. Join me on my blog at  or find me on Facebook.