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