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Discharge Instructions for Hereditary Hemochromatosis

You have been diagnosed with hereditary hemochromatosis (HH). This is an inherited disease that causes you to absorb too much iron. Iron is needed for making red blood cells. But too much of it can cause serious health problems. Here's what you need to know.

Home care

  • Tell your children and your brothers and sisters that you have hemochromatosis. The disease is inherited. So other family members may have it and not know it. Your first-degree family members should talk to their healthcare providers about the need for blood testing.

  • Have your iron levels checked regularly.

  • Avoid drinking alcohol. If you have trouble quitting, ask your healthcare provider about programs to help you.

  • Avoid eating large amounts of iron-rich foods. These include red meats (especially liver) and food products with iron added.

  • Don’t eat raw fish or raw shellfish.

  • Never take iron supplements. Even small amounts of iron in some multivitamins can be harmful.

  • Don’t take pills with more than 500 mg of vitamin C each day. It’s OK to eat foods that have vitamin C.

Follow-up

  • Make a follow-up appointment.

  • Keep your follow-up appointments. You may need to have a pint of blood removed (phlebotomy) on a regular basis to keep your iron levels normal.

When to call your healthcare provider

Call your healthcare provider right away if you have any of the following:

  • Tiredness

  • Irregular pulse or heartbeat

  • Any chest pain

  • Loss of appetite, nausea, or vomiting

  • Trouble breathing or exercising

  • Increased thirst or increased need to urinate

  • Fever of 100.4°F (38°C) or higher, or as directed by your healthcare provider

  • Muscle aches, joint pains, or pain in your belly

  • Darkened skin for no apparent reason

  • Yellowing of the skin or whites of the eyes (jaundice)

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