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Hemochromatosis

Condition Basics

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.

What causes it?

The most common type of hemochromatosis runs in families. This is called hereditary or primary hemochromatosis. But people sometimes get it from having a lot of blood transfusions, certain blood problems, liver disease, or alcohol use disorder. This is called acquired or secondary hemochromatosis.

You are less likely to have iron build up if you menstruate or are pregnant.

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. The most common form 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 counsellor 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. The general population includes people who do not have symptoms of hemochromatosis and who do not have a close relative, such as a parent, brother, sister, or child with the disease. People with symptoms of hemochromatosis or a relevant family history may benefit from investigations.

How is hemochromatosis 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 helps 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 their iron levels return to normal and the hemochromatosis is clearly caused by another disease or by a treatment for another disease (such as blood transfusions).

How can you care for yourself?

  • Take steps to make sure you are not building up too much iron.
    • Do not take natural health products that contain iron.
    • Do not take extra vitamin C supplements. 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.
    • 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.
    • Limit or do not drink alcohol. Alcohol doesn't contain iron, but drinking it raises your risk of liver damage. This makes it more likely that you'll build up too much iron.
    • Do not use iron cookware. Food cooked in ironware can absorb some of the iron.
    • 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.
  • Do not eat uncooked seafood. It can contain a bacteria that's harmful to people who have hemochromatosis.

Credits

Adaptation Date: 2/17/2022

Adapted By: Alberta Health Services

Adaptation Reviewed By: Alberta Health Services

Adapted with permission from copyrighted materials from Healthwise, Incorporated (Healthwise). This information does not replace the advice of a doctor. Healthwise disclaims any warranty and is not responsible or liable for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.