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WHAT YOU NEED TO KNOW:
What is hemochromatosis?
Hemochromatosis is a disease that causes your body to store too much iron. Extra iron builds up in your heart, liver, and joints.
What causes hemochromatosis?
Hemochromatosis may be caused by genes that you inherit from your parents. You may also get hemochromatosis as a result of other conditions such as liver disease, or from long-term blood transfusions.
What are the signs and symptoms of hemochromatosis?
Your signs and symptoms may be worse if you eat foods that are high in iron or you drink alcohol. Women may have milder symptoms because iron levels are lowered through blood lost during monthly periods.
- Weakness or fatigue
- Loss of body hair or bronze to gray skin
- Joint swelling, stiffness, or pain
- Abdominal pain
- Impotence or lack of sex drive
- Infertility or loss of monthly periods
How is hemochromatosis diagnosed?
Your caregiver will ask about your symptoms and when they started. He will ask about any health conditions you have. You may also need the following:
- Blood tests: These can tell if your body is storing too much iron. The tests can also check the function of organs affected by hemochromatosis.
- Liver biopsy: A small piece of your liver is tested for extra iron and for liver damage.
How is hemochromatosis treated?
There is no cure for hemochromatosis. You may need the following to manage your symptoms:
- Phlebotomy: Small amounts of blood are taken to help decrease the amount of extra iron in your body. You may need to have this done regularly, or when your iron levels get higher than your caregiver recommends.
- Medicines: You may need medicines for other health conditions caused by hemochromatosis. Some examples are thyroid disease, high or low blood pressure, diabetes, impotence, and heart disease.
What are the risks of hemochromatosis?
Without treatment, iron buildup can cause diabetes, liver disease, thyroid disease, and other health problems. You may be at risk for broken bones. Hemochromatosis can be life-threatening if not treated.
How can I manage my symptoms?
- Eat less red meat: Red meat contains iron. Ask your caregiver how much red meat is safe for you to eat each day.
- Do not take iron supplements: Read labels. Do not take vitamins or supplements with iron in them.
- Limit vitamin C: Vitamin C increases the amount of iron you get from the foods you eat. Ask your caregiver if you need to avoid foods and supplements that are rich in vitamin C.
- Do not drink alcohol: Alcohol increases iron absorption and increases your risk of liver damage.
- Avoid raw seafood: Do not eat or touch raw seafood. You are more likely to get an infection from these foods.
When should I contact my caregiver?
Contact your caregiver if:
- Your symptoms return or get worse.
- You have a fever.
- You have a cough, or feel weak and achy.
- You have questions or concerns about your condition or care.
When should I seek immediate care?
Seek care immediately or call 911 if:
- You have severe abdominal pain.
- You have pain in your chest, back, neck, jaw, stomach, or arm.
- You are suddenly short of breath.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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