Hemochromatosis (Iron Overload)

What is hemochromatosis?

Hemochromatosis, also called iron overload, is a condition in which your body stores too much iron.

What is iron, and why do I need it?

Iron is a mineral found in certain foods. Your body needs iron to:

• Help hemoglobin in blood cells carry oxygen throughout your body.
• Make red blood cells.
• Produce certain hormones.

Normally, your intestines absorb just the right amount of iron from the food you eat. But with hemochromatosis, the body absorbs extra iron and stores it in your organs, especially your heart, liver and pancreas.

Why is too much iron dangerous?

Too much iron can be toxic.

In the heart, it can cause:

• Arrythmia (irregular heartbeat).
• Heart failure.

Too much iron in the liver can lead to:

• Cirrhosis (scarring).
• Enlarged liver.
• Liver cancer.
• Liver failure.

In addition, iron overload can cause:

• Arthritis (joint damage).
• Diabetes.
• Problems with the spleen, adrenal glands, pituitary gland, gallbladder or thyroid.
• Problems with the reproductive system, such as erectile dysfunction in men and early menopause in women.
• Skin that may look noticeably more gray or bronze than usual.

If the condition isn't treated, it can lead to death.

How common is hemochromatosis?

The condition is fairly common, affecting more than a million Americans.

What causes hemochromatosis?

There are two types of hemochromatosis, each with different causes.

An inherited genetic change is the most common cause. It’s called primary hemochromatosis, hereditary hemochromatosis or classical hemochromatosis. With primary hemochromatosis, problems with the DNA come from both parents and cause the body to absorb too much iron.

In secondary hemochromatosis, medical treatments or other medical conditions cause the iron overload. Examples include:

• Anemia (low amount of red blood cells).
• Blood transfusions.
• Iron pills or injections.
• Kidney dialysis over a long period of time.
• Liver disease, such as hepatitis C infection or fatty liver disease.

Are certain people more likely to have primary hemochromatosis?

The inherited form of hemochromatosis is more common in white people with ancestors from Northern Europe. It’s less common in people with African-American, Hispanic, Asian or American Indian descent.

Men have hemochromatosis more than women. Women lose iron when they get their periods or have babies. Their bodies also store less iron. Hemochromatosis is also more common in older people because iron toxicity takes years to develop.

Other factors that increase the chances of developing hemochromatosis include alcohol abuse and a family history of:

• Arthritis.
• Diabetes.
• Heart attack.
• Erectile dysfunction.
• Liver disease.

What are the symptoms of hemochromatosis?

Not every person with hemochromatosis develops symptoms. Some people with high levels of iron don’t have any problems, while others experience very serious symptoms.

Symptoms usually don’t appear until middle age, and they often look like signs of other conditions. These signs may include:

• Fatigue (feeling tired a lot).
• General weakness.
• Heart flutters or irregular heartbeat.
• “Iron fist,” or pain in the knuckles of the pointer and middle fingers.
• Joint pain.
• Stomach pain.
• Unexplained weight loss.

How is hemochromatosis diagnosed?

If you potentially have hemochromatosis, your healthcare provider will:

• Ask if your parents ever had iron overload, liver disease or other related diseases.
• Ask if you take iron supplements, by mouth or injection.
• Ask if you take extra vitamin C, which can boost absorption of iron.
• Check your joints for pain.
• Listen to your heart for an irregular beat.
• Look at your skin to see if the color is off.
• Press near your liver to test for pain.

What tests might I need for hemochromatosis?

Your healthcare provider may order:

• Blood tests to measure how much iron is in your blood and your organs.
• Genetic testing to see if you have the inherited form of hemochromatosis.
• Liver biopsy, when a small needle removes a tiny bit of liver tissue for study under a microscope.
• MRI to take detailed pictures of your organs.

How is hemochromatosis treated?

Diet changes and other treatments can help ease the symptoms of hemochromatosis. They can also help prevent or delay further damage to your organs:

• Changes to your diet: Your healthcare provider will probably ask you to avoid supplements with iron. You may also need to stay away from foods with too much iron and limit vitamin C. Limit your alcohol consumption, too, because it’s not good for your liver.
• Iron chelation therapy: This medication removes extra iron from your body. It’s taken by mouth at home or injected into the blood by a healthcare provider.
• Therapeutic phlebotomy: This procedure uses a needle and tube to remove blood, and the iron it contains, from your body. Treatment needs to be repeated frequently, so you’ll have regular blood tests to measure iron levels.

If another condition caused hemochromatosis, you may need treatment for that, too. And healthcare providers may recommend treating any problems caused by hemochromatosis.

What is the outlook with hemochromatosis?

The outlook for hemochromatosis depends on the timing of diagnosis and treatment. If not caught and addressed early, severe hemochromatosis can cause serious problems. These complications can include organ damage and possible death.

But hemochromatosis is also a manageable disease. With early detection and treatment, you can survive and live a normal, healthy life. Sometimes organ damage can even be reversed.

How long will I need treatment?

Your healthcare provider will determine how long you need treatment.

If you are diagnosed with hemochromatosis, you'll need to have some blood withdrawn once a week to start. You may then be able to switch to every few months, though you’ll still need ongoing treatment.

Can I prevent hemochromatosis?

You can’t prevent hemochromatosis, but you can get help controlling your iron levels. By identifying and treating hemochromatosis early, healthcare providers can help you avoid complications.

How much iron do I need in my diet?

Your healthcare provider can help you determine how much iron you need. It depends on several factors, including:

• Age.
• Pregnancy status.
• Sex.

Should I change my diet?

Your healthcare provider will probably suggest that you:

• Avoid iron pills, iron injections, multivitamins containing iron and iron-fortified, processed foods.
• Avoid raw or undercooked fish and shellfish. They may contain bacteria that cause infections and complications in people with disease.
• Limit alcohol to protect your liver.
• Limit vitamin C.

Will my kids get hemochromatosis?

If you have hemochromatosis (or a family history of it) and are considering having children, consider genetic testing. You and your partner can get tested for the genetic change responsible, which is called the HFE gene. Your healthcare provider and genetic counselor can help you determine the likelihood of passing it on to your children.