For someone like me who has had to have blood transfusions from anemia—low iron—hemochromatosis seems like a foreign concept. However, for 1 in 300 people, too much iron in the blood can be a big problem. [1] Hemochromatosis is the most common genetic disorder affecting Canadians, and the stats are likely not too far off for Americans as well. [1] While not terribly uncommon, hemochromatosis is not detected in typical blood work—for example, often a blood lab panel will test for hemoglobin, which does not account for all the iron in the body. More specific blood tests for hemochromatosis are easily run, but your doctor may not run them routinely. [1] This blood test counts the overall iron in your blood—not just that which is transporting oxygen (hemoglobin). [1]

Hemochromatosis is a genetic disorder—if you know someone with hemochromatosis who is in your immediate family, such as parents, siblings, or children, you should be tested. [1]

Symptoms of Hemochromatosis

Too much iron in the blood may cause fatigue, depression, abdominal pain, joint pain especially in the fingers, sexual changes (impotence for men and irregular menstruation or early menopause for women), and darkening or discoloration of the skin. In the long-term, type 2 diabetes, hypothyroidism (under-active thyroid), heart disease, or liver disorders including liver cirrhosis (inflammation) and cancer of the liver. [1]

Sometimes you may not have symptoms, or may have mild symptoms that you have yet to consider as needing medical attention for—this is why it is important to be aware of any family history of hemochromatosis, to avoid long-term effects of the disease.

How is Hemochromatosis treated?

Early on, blood must be taken out of the body to decrease the overload of iron. Once iron levels are stabilized, regular blood donations can be given—a treatment that does good for people with hemochromatosis, and for those needing blood transfusions. [1]

While excessively restricting dietary iron does not always help, it may help for people with hemochromatosis to consume less sources of animal-derived iron (meat), which are more readily absorbed by the body. These items do not need to be cut out completely, but scaling back may be helpful. Avoiding alcohol can also help to keep iron levels lower, as well as avoiding shellfish, which may carry a bacteria that thrives on iron, and may become deadly to those with hemochromatosis as it multiplies in an iron-rich environment. [2]

Things that may help

If you don’t have hemochromatosis but have concerns, you may ask your doctor to run a simple blood test for hemochromatosis. This is more important if you have relatives with high iron levels.

Learning about hemochromatosis can help to manage the condition. The Canadian Hemochromatosis Society has created an app called Iron Tracker, which can help people with hemochromatosis keep track of their health. If you have hemochromatosis, an app such as this, as well as wearing a medical ID bracelet for hemochromatosis in case of an emergency, can help you stay on top of your health.