Iron Overload (Hemochromatosis)

When I was first diagnosed with hepatitis C, back in 1986, the virus was known as non-A-non-B. My own doctor didn’t believe that any such thing existed. Instead, he kept insisting that I was an alcoholic in denial. I had drunk to excess for a brief spell while in college – I admitted that, but he didn’t believe me. He did tell me that my hemoglobin was binding iron – a condition called hemochromatosis, or iron overloadbut, after I told him nobody in my family had the disease, he backtracked, and said it was impossible that I could have it. Hemochromatosis was strictly hereditary, according to him. It wasn’t until 1999 that a different gastro doc suggested I might have hemochromatosis, secondary to hepatitis C. The NIH now says that hemochromatosis often affects interferon/ribavirin nonresponders, but is also secondarily related to hepC – apparently, any person with hepatitis C can develop it. They also say that patients cured of HCV have significantly lower levels of iron in their blood.

Hemochromatosis is a serious disease. (The CDC now calls it Iron Storage Disease) Usually, there are no symptoms in the early stages. By the time a patient develops symptoms, the disease has already been at work, causing further damage to the liver, as well as heart arrhythmia, heart failure, adrenal disease, loss of sex drive in men, diabetes, and changes in skin color (from normal to gray or bronze – hemochromatosis was formerly known as bronze diabetes.)

As my iron and ferritin levels continued climbing upward, my doctor suggested treatment. I told him I had read about iron chelation therapy. He told me that chelation with herbals couldn’t possibly remove the amount of iron accumulated in my blood. He also said that medicinal chelation was dangerous, and had to be done in the hospital. In his thinking, phlebotomy, or bloodletting, was the best way to get my iron levels back to normal. Although it seemed medieval to me, I agreed to try it. Then, I found out how much blood had to be removed: two pints a week for four weeks, or until my iron levels stabilized. I thought, this is a lot of blood. My doctor did the procedures himself, right in his office, with the bag of blood on the floor, so that gravity would do the work. By the end of week 3, I could barely lift my head from blood loss. When I stood up from a chair, I sat back down. I couldn’t stand without fearing I’d end up on the floor – and that’s exactly what happened a couple times. I was lucky to stay uninjured. One day, in my doctor’s office, a nurse tripped over the bag. The accident yanked the needle out of my arm, and the contents of the bag went everywhere. Blood is thick, and hard to clean up. The bag had been nearly full, so it took them over an hour to with the mess. Since the blood was HCV+, the nurse – well, I’d guess you’d say she freaked out. From then on, my phlebotomies were done at the hospital infusion center, which denied my doctor his fee for the procedure. The whole iron overload experience caused me a lot of discomfort, and put me in danger of falling down from blood loss.

What’s the best away to avoid hemochromatosis? Never get it in the first place. This is one more reason to treat HCV as early as possible.

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