Discharge Instructions for Hereditary Hemochromatosis

You have been diagnosed with hereditary hemochromatosis. 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, brothers, and sisters that you have hemochromatosis. The disease is inherited. 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, as directed by your healthcare team.

• Eat a healthy, balanced diet.

• Limit how much alcohol you drink. It can increase your risk for liver problems. Don't drink alcohol if you have liver problems.

• Don't eat raw or undercooked seafood. It may cause an infection.

• Never take iron supplements. And don't take multivitamins that have iron. Even small amounts of iron in some multivitamins can be harmful.

• Talk to your healthcare provider before taking any vitamins, herbs, supplements, or alternative medicines.

Follow-up care

• 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 any of the following occur:

• 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

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