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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. 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.
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:
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.
Treatment for hemochromatosis includes:
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).
Adaptation Date: 2/17/2022
Adapted By: Alberta Health Services
Adaptation Reviewed By: Alberta Health Services
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