Iron Overload (Hemochromatosis)

Iron Overload

What is hemochromatosis? — Hemochromatosis is a condition that can cause too much iron to build up in the body. This can lead to problems such as liver damage, heart damage, joint pain, and weakness.
Hemochromatosis can be caused by abnormal genes and can run in families. This type of hemochromatosis is called "hereditary hemochromatosis." If your parent, brother, sister, or child has hemochromatosis, ask your doctor or nurse about getting tested for it.
In other cases, hemochromatosis can be caused by other things, for example, getting a lot of blood transfusions (more than 10 or 20). Or it can be related to other blood diseases.
Most people find out they have hemochromatosis from a blood test. Anyone who has a family member with the condition should get tested. People with symptoms of too much iron, or an abnormal blood test showing high iron levels, should also be tested.
What are the symptoms of hemochromatosis? — Many people find out they have hemochromatosis before they have any symptoms.
If a person does have symptoms before they are diagnosed, the symptoms can include:
Feeling weak or tired
Changes in the color of the skin that make it look darker
Joint pains, especially in the hands
An increase in the size of the liver (figure 1)
Signs of a heart problem, like trouble breathing
Diabetes or other hormone problems
Sometimes there are no symptoms, but routine lab tests (that are done for other reasons) show problems that could be a sign of hemochromatosis. These might include:
Abnormal blood tests of the liver
Abnormal blood sugar
Abnormal thyroid tests
High levels of iron in the blood
If hemochromatosis is not treated, it can lead to long-term problems that include:
Liver damage
Heart damage
Thyroid problems
High sugar levels in the blood (diabetes mellitus)
Trouble getting or keeping an erection (in men)
Is there a test for hemochromatosis? — Yes. Your doctor or nurse can do different blood tests to check the iron level in your blood. If the iron level is high, they can test for the hemochromatosis gene.
How is hemochromatosis treated? — If you have the gene but your iron level is normal, you might not need treatment. Your doctor can do regular blood tests to check your iron level. If your iron level gets too high, then you need treatment.
When treatment is needed, most people are treated by having some of their blood removed on a regular basis, similar to donating blood. This treatment works because taking blood from a person's body removes iron.
If you are being treated for hemochromatosis, you will probably have blood taken once a week until enough iron has been removed. This usually takes about a year, but it depends on how much extra iron you have. To track how well the treatment is working, your doctor or nurse will probably do regular blood tests. This is to check for anemia and see how well the iron removal is going.
Once your iron level is normal, you will have some treatment to keep your iron level from getting too high again. This involves having blood taken less often (a few times a year). Most people need this treatment for the rest of their life.
What other treatments might I need? — You might need other treatments if your hemochromatosis leads to long-term problems. For example, if you get diabetes, you might need to take diabetes medicines.
If you have certain liver problems, you will need follow-up tests to check your liver for the rest of your life. That's because people with certain liver problems caused by hemochromatosis have a higher chance of getting liver cancer.
Is there anything I can do on my own to help keep my iron levels low? — Yes. You should avoid iron supplements and vitamins with extra iron. It is fine to take a regular vitamin without extra iron, and it is fine to eat a regular diet including meat.
Can I drink alcohol? — It depends. Ask your doctor or nurse if it is OK for you to drink alcohol. People who have hemochromatosis and certain liver problems should not drink alcohol. Also, some people can reduce their alcohol use to lower the chance of developing liver problems.
What if I want to get pregnant? — If you have hemochromatosis and want to get pregnant, talk with your doctor or nurse. They can help you understand the chances that your baby will get the abnormal gene. Even if your baby does get hemochromatosis, he or she will not have any symptoms or need treatment until adulthood.
All topics are updated as new evidence becomes available and our peer review process is complete.
This topic retrieved from UpToDate on: Mar 30, 2020.
Topic 15875 Version 6.0
Release: 28.2.2 - C28.105
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