Everyone knows that iron is part of a balanced diet. It delivers oxygen through hemoglobin to the entire body. Typically, we absorb between eight and ten percent of the iron from the foods we eat. Individuals with hemochromatosis absorb five times that amount which is way too much. It is problematic when iron cannot be excreted because the metal can reach toxic levels in tissues of major organs which impedes functioning and brings on disease. “In most cases, people do not know they have it,” says Sandra Thomas, president and founder of the American Hemochromatosis Society.
The excess iron can become dangerous if unidentified. “It stores in vital body organs like the heart, pancreas, liver and joints and the patient starts experiencing medical problems like diabetes, arthritis and liver cirrhosis,” says Thomas. This does not mean there is always a correlation but around ten percent of diabetics have diabetes because of the underlying condition of hemochromatosis and do not realize it. With symptoms such as fatigue, joint pain, arthritis and cardiac problems, it is easy to see why it can be confusing to both doctors and patients alike. “You absolutely have to have the tests. We cannot just guess based on symptoms,” emphasizes Thomas.
It is hard to believe but the Center for Disease Control and Prevention has said that patients can see as many as three doctors before getting accurately diagnosed with hemochromatosis. They have also found that patients are misdiagnosed with this condition sixty-seven percent of the time. Medical schools are teaching a myth by educating new doctors that hemochromatosis is rare and only occurs in older men. “This disease used to be known as the half-century disease because nobody got it until after fifty years-old but that is old thinking. We now know with newer studies that patients get this in their twenties, thirties and forties as well,” says Thomas.
The good news is that the screening tests are simple. “There is serum iron which is a blood test. The second test is TIBC, which stands for total iron binding capacity. The third test is serum ferritin which tells you how much stored iron is in the body. For a complete picture, all three are necessary,” says Thomas. There is also a DNA genetic test that can be done with a blood sample or cheek swab kit from a direct access testing lab like healthcheckusa.com. “The kit can be sent to your home. You take a little brush that looks like a mascara wand and rub the inside of your cheek with it and mail it back to the lab,” says Thomas. This determines whether you have the gene mutations. “When you have one mutation, you are a silent carrier and do not develop the full-blown disease. When you have two, you are at high risk for developing it,” says Thomas.
There are other reasons someone can have iron overload such as having too many blood transfusions. Some ethnic groups, such as Caucasians and those with European ancestry, are at higher risk. “We believe that this mutation originated in Norway and Ireland. Sometimes we call it the Viking gene,” says Thomas.
Prevention comes down to lifestyle choices. “Abusing alcohol, taking vitamins with iron and eating a lot of red meat can cause excess iron storage,” says Thomas. Dietary modifications can be made for those with hemochromatosis. They need to recognize that heme iron, found in meat, is absorbed easily while non-heme iron, found in plants and supplements, is not. Grains, rice, nuts and beans are helpful because they aid with digestion and stop the absorption of non-heme iron. Tea and coffee can be good because they have tannins which decrease iron absorption. Fruits and vegetables like spinach contain fiber and antioxidants and are also great. Sugary beverages, foods high in animal fat and shellfish should be avoided. Vitamin C supplements should be limited to 200 milligrams per dose because they can promote iron absorption.
Treatment basically involves getting iron levels back to normal. This is done through therapeutic phlebotomy or blood removal which requires a doctor’s order. “There is nothing wrong with the blood and that has finally been recognized by the Food and Drug Administration,” says Thomas. Regular blood donation is recommended every eight weeks though individuals with severe iron overload may need to give more frequently. Once iron levels become normal again, maintenance therapy begins in which a pint of blood is given every two to four months for life.
If you suspect that you may have hemochromatosis, bring it up to your doctor. Do not let him brush off the subject by saying that you are healthy, look great or do not have a family history or blatant symptoms. “Say something vague like you read about it in this magazine or a friend told you about this article so it carries the weight that is needed,” advises Thomas.
