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Topic Overview

What is hemochromatosis?

Hemochromatosis happens when too much iron builds up in the body. Your body needs iron to make hemoglobin, the part of your blood that carries oxygen to all of your cells. But when there is too much iron, it can damage the liver and heart and lead to other diseases, such as diabetes and arthritis.

Hemochromatosis can be treated to prevent serious problems. But without treatment, hemochromatosis will continue storing iron in the body. When iron levels are dangerously high, organ and tissue damage can happen.

The most common type of hemochromatosis runs in families. But people sometimes get it from having a lot of blood transfusions, certain blood problems, liver disease, or alcoholism, or from taking too many iron pills.

Men are more likely than women to have too much iron built up. Women get rid of extra iron through blood from their menstrual cycles and during pregnancy.

What are the symptoms?

Symptoms often don't appear until a person is age 40 or older. This is because extra iron builds up slowly throughout the person's life. And symptoms appear after a certain amount of extra iron builds up.

The early symptoms are somewhat vague or subtle. So this disease is sometimes mistaken for another condition. Early symptoms include:

• Tiredness.
• Weakness.
• Pain in the joints.
• Weight loss.
• Urinating more often.

How is hemochromatosis diagnosed?

Your doctor will do a physical exam and ask about your medical history. If the doctor suspects hemochromatosis, you will have blood tests to see if you have too much iron in your body.

Most of the time hemochromatosis is caused by a gene that runs in families. It is an autosomal recessive disorder that can be passed to a child from the parents. Hemochromatosis can be found early with a blood test. If you have this disease, you may want to have your children tested to see if they have it. Other family members may also want to be tested. Talking to a genetic counselor will help you decide whether genetic testing is a good idea for you and your family.

Most medical experts do not think it is helpful to screen for hemochromatosis in the general population using blood tests or genetic tests because hemochromatosis is not common. The U.S. Preventive Services Task Force (USPSTF) does not recommend genetic screening for hemochromatosis in the general population.¹ The general population includes people who do not have symptoms of hemochromatosis and who do not have a parent, brother, sister, or child with the disease.

How is it treated?

Treatment for hemochromatosis includes:

• Phlebotomy. This is the most common treatment. It is like donating blood and is done on a regular schedule.
• Chelation therapy (also called chelating agents). This is medicine that help your body get rid of excess iron. It might be used in some people who can't have phlebotomy.

Treatment can:

• Safely and quickly remove excess iron from the blood.
• Limit the progression and possible complications of the disorder.
• Prevent organ damage, such as in the liver or heart.

Most people need treatment for the rest of their lives. But some people may not need further treatment if hemochromatosis is clearly caused by blood transfusions or vitamin overdoses and if treatment returns iron levels to normal.

Can hemochromatosis be prevented?

Having hemochromatosis in your family doesn't mean that you will automatically get it. If you find out that you have inherited a gene that causes hemochromatosis, that means you are more likely to get hemochromatosis. Your doctor or a genetic counselor can help you understand the results of a gene test. You might watch for symptoms so that if you do get hemochromatosis, you can get treatment as early as possible. Early treatment can reverse most symptoms and prevent future problems.

Getting this disease by eating too much iron in your food is rare. But it's always good to pay attention to how much iron you are getting in vitamins and the foods you eat.

How can I take care of myself at home?

At home, you can take steps to make sure you are not getting too much iron in food or drinks.

• Limit or do not drink alcohol. If you drink alcohol, you absorb more iron from food.
• Do not take extra vitamin C supplements (more than 200 mg a day). Extra vitamin C can increase the amount of iron you absorb from food. But it's okay to eat and drink foods that naturally contain vitamin C.
• Do not take nutritional supplements or vitamins that contain iron.
• If you get phlebotomy treatment, ask your doctor if you should change the foods you eat. If you need to lower the amount of iron in your diet, you can eat less red meat and iron-fortified food, such as cereals.
• Drink tea and coffee. These drinks—tea more than coffee—can cause your body to absorb less iron from the food you eat. Drinking these beverages does not replace usual treatment.
• Do not use iron cookware. Food cooked in ironware can absorb some of the iron.
• Do not eat uncooked seafood. It can contain a bacteria that's harmful to people who have hemochromatosis.