Dear Dr. Roach: In a recent letter to you, I saw hemochromatosis mentioned. I was diagnosed in 1992 (at age 32). My liver was 90 percent saturated with iron. I had lost 40 pounds (down from 170 pounds) and was very anemic.
The prescription was weekly phlebotomies (a pint per week) to drain the iron from my system. My anemic condition was improving weekly, despite the blood draws. I gained the 40 pounds back in approximately 45 days.
You would not want to witness my eating habits — eating and drinking all the wrong things!
The phlebotomies continued at this rate for two years, then gradually decreased. I eventually got to a stable 36 percent hematocrit (considered normal for my condition). This was over the course of eight years.
My parents were both tested for hemochromatosis, along with my father’s siblings, and all were negative.
Since then, I am no longer getting phlebotomy, and my blood level and iron levels have stayed normal. Keep in mind the hemochromatosis is considered a lifetime condition. Multiple specialists have been unable to determine why I no longer need phlebotomy.
Dear D.E.: Primary hemochromatosis is caused by the body absorbing too much iron for its needs. The gut can normally regulate iron absorption so that if you don’t need it, it won’t absorb it.
In hereditary hemochromatosis, that regulation doesn’t exist, and the gut absorbs as much as possible.
I can think of three possibilities to explain your situation.
The first is that the original iron overload you had was not from hereditary hemochromatosis. Having neither parent with diagnosed hereditary hemochromatosis makes this more likely. Massive, repeated oral iron can overwhelm the gut and cause iron overload. Rarely, some blood disorders (such as sideroblastic anemia), liver disorders and systemic diseases (such as porphyria cutanea tarda) can cause iron overload in the absence of hereditary hemochromatosis. Repeated blood or iron transfusions can also, but I’m sure you would have told me about that.
The second possibility is that you can no longer absorb iron properly due to a new condition. The most common cause is celiac sprue, but some dietary factors reduce iron absorption, such as phytate (found in bran, oats and rye fiber), high dietary calcium, soy protein and polyphenols (in tea).
You would have to be taking in a LOT of these to counteract the effect of hemochromatosis.
Finally, you could be losing iron. By far the most common cause of hidden or “occult” bleeding is in the GI tract, usually from a colon polyp or other abnormality.
I recommend that you see your doctor for celiac sprue testing. You also should have a colonoscopy if you haven’t had one recently. You also might consider genetic testing for hemochromatosis.
Email questions to ToYourGoodHealth@med.cornell.edu.