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Hemochromatosis – A Common but Unrecognized Disease

Hemochromatosis occurs when an excess of iron is absorbed and stored in the body. The extra iron ends up in the body’s organs and causes damage. If not treated, the liver, heart and pancreas can fail.

Typically healthy people absorb about 10% of the iron in the food they eat. If you have hemochromatosis, you may absorb as much as three times that amount.  Because your body has no natural way to excrete iron, the extra just stays there.

What you can do

If you or a family member has hemochromatosis, treatments and dietary changes can help you manage the disease.

1. Get Treated

For treatment, excess iron must be removed from the body and damaged organs must be repaired.

The main treatment is to remove excess iron from the body. This is called phlebotomy or having blood drawn like when donating to a blood bank. The process is as follows:

  • A pint of blood is removed from the body once or twice a week until the body iron level is normal. This may take many months or even years to do.
  • After that, blood draws may be done less often, every 2-4 months, to maintain normal iron levels. This depends on:

    • your levels of hemoglobin and ferritin
    • how much iron is present in your diet.

2. Change Your Diet

Upon diagnoses, one should follow a special diet to reduce the amount of iron absorbed in your digestive tract. Suggestions include avoiding the following:

  • Alcohol, especially if you have liver damage
  • Iron pills or vitamins containing iron
  • Iron cookware
  • Raw seafood (cooked is fine)
  • Foods fortified with iron, such as 100% iron breakfast cereals

3. Know Your Risk – Protect Your Family

Primary hemochromatosis is an inherited disorder. If you or someone in your family has it, everyone should be tested to see if they inherited the gene.

Hereditary hemochromatosis is mainly caused by a defect in a gene called HFE, which helps regulate the amount of iron absorbed from food. The two known mutations of HFE are C282Y and H63D. C282Y is the most important. In people who inherit C282Y from both parents, the body absorbs too much iron and hemochromatosis can result.

4. Educate Yourself

Hemochromatosis is typically more common in men than women and occurs more frequently in Caucasians of western European descent. About five people out of 1,000—0.5 percent—of the U.S. Caucasian population are susceptible to developing the disease Types of hemochromatosis include:

Primary hemochromatosis is a genetic disorder. If you have this condition you absorb too much iron through your digestive tract causing iron to accumulate in the body. If you have not been diagnosed with hemochromatosis, you are more likely to develop this type of the disease if a family member has had or has this condition.

Secondary (acquired) hemochromatosis can be complication of other blood-related disorders that require many blood transfusions treatment. It also occurs in cases of long-term alcohol abuse or as a result of other health complications.

Juvenile hemochromatosis leads to severe iron overload, liver and heart disease in adolescents between 15 and 30.

Neonatal hemochromatosis causes rapid iron buildup in a baby’s liver that can be deadly.

5. Know the Symptoms

Symptoms of hemochromatosis include:

  • Fatigue
  • Lack of energy
  • Abdominal pain
  • Loss of sex drive
  • Heart problems

**Remember – many people have no symptoms when they are diagnosed.

6. Get Tested

For proper diagnosis, a doctor or nurse will conduct physical evaluations. During these evaluations they may look for a swollen liver and/or spleen, and skin color changes. Blood test may be taken including:

  • Blood test for iron levels
  • Serum Ferritin test – determine iron levels in the liver
  • Iron binding capacity test – determines how well you blood can transport iron
  • HFE mutation test – ordered if levels are high on the Serum Ferritin or iron binding capacity test
  • Liver biopsy – If the genetic test doesn’t show anything, the condition may be confirmed with a liver biopsy

7. Watch for Complications

Complications of hemochromatosis include:

  • Arthritis
  • Liver disease: cirrhosis, cancer and liver failure
  • Diabetes
  • Heart problems
  • Increased risk of infection
  • Erectile dysfunction and testicular atrophy
  • Skin coloring changes
  • Low thyroid levels
  • Problems with adrenal glands


For more information:

Go to the Hemochromatosis health topic.