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Hemochromatosis: The Danger of Too Much Iron in Your Blood


By Mary Wascavage


The classic symptom of hemochromatosis is called the “iron first,” or pain in the knuckles of your first two fingers.

Many people have heard of a condition called anemia, which occurs when you don’t have enough iron in your blood. However, you may not have heard of hemochromatosis, a genetic metabolic disease that affects up to one million people in the United States. People with hemochromatosis have too much iron in their blood and body, which can lead to a variety of health problems, contribute to the formation of several diseases, and even lead to death if left untreated.

“Everyone needs iron since it’s essential for forming a protein called hemoglobin in the blood, which carries oxygen to your organs and tissues,” says Brian C. Copeland, D.O., chief of Gastroenterology at Crozer Health. “However, too much iron is bad and your body has no way to eliminate the excess iron that accumulates through hemochromatosis.”

The “Iron Fist” and Other Symptoms of Hemochromatosis

The classic symptom of hemochromatosis is called the “iron first,” or pain in the knuckles of your first two fingers. This is the only symptom specific to hemochromatosis and not everyone with the disease will experience the iron fist.

The other symptoms of hemochromatosis are shared with other diseases, which can make diagnosis difficult. These include:

  • Low energy
  • Loss of interest in sex
  • Abdominal pain
  • Heart palpitations and irregular heart beat
  • Problems with memory and concentration

“If hemochromatosis is left untreated, it can cause other diseases to develop,” says Copeland. “This includes osteoarthritis and osteoporosis, diabetes, liver disease, heart disease, enlarged spleen, and abnormal skin color.”

The Three Tests for Hemochromatosis

There are three tests that doctors can use to examine how much iron you have in your blood and body. These tests will help them rule out other potential causes of your symptoms.

The first test is called the serum iron test. It measures the amount of iron circulating in your body. You’ll have to fast before this test and stop taking iron and vitamin C supplements several days beforehand.

The second test is called serum ferritin test. It measures the amount of iron stored in your body.

The last test is the total iron binding capacity test. It measures how well a protein called transferrin can carry iron in your blood.

“Your doctor will order all three of these tests if hemochromatosis is the suspected cause of your symptoms,” says Copeland. “It’s important that these tests are performed together to formulate the most accurate diagnosis.”

Treatment for Hemochromatosis

If your tests confirm that you have hemochromatosis, your doctor will prescribe regular phlebotomy to treat it. Phlebotomy is the removal of blood from your body at regular intervals. The procedure is the same as donating blood.

The treatment will be broken up into two stages: an initial stage to bring your iron levels into the normal range, followed by a maintenance stage to keep your iron level stable. During the initial stage you will have blood removed as frequently as once or twice per week, usually about a pint each time.

Once your levels are normal, you will have blood removed much less frequently. The schedule depends on how quickly iron accumulates in your body. Some people never have blood removed after the initial stage, while others have it removed monthly or bimonthly.

“The good news is that once treatment begins and your iron level becomes normal, many of the symptoms you experienced will go away completely,” says Copeland.

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