Hemochromatosis: Care Instructions

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Your Care Instructions

Hemochromatosis is the buildup of iron in the body. The iron collects in the blood, liver, heart, pancreas, joints, skin, and other organs.

Hemochromatosis is a disease that can be passed from a parent to a child (inherited). Usually, people need an abnormal gene from each parent to get the disease. You and your family members can get a genetic test to see if the gene is present. This is important, because early treatment that removes the extra iron from your body can protect your health.

Hemochromatosis may cause belly pain, weakness, tiredness, and weight loss. It also can scar the liver, cause joint pain, and darken the skin. In late stages, it can damage the heart and joints, and can cause diabetes.

Symptoms of hemochromatosis often do not appear until a person is 40 to 60 years old. Treatment removes the excess iron from the body before it causes problems. This can be done by taking blood out of your veins every week at first. Later, most people have this done every 2 or 3 months. Once in a while, doctors prescribe medicine that removes iron from the body.

If you have hemochromatosis, your family members should tell their doctors. They will have to watch for the condition as well. Early treatment can help prevent problems later.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Be careful about the natural health products that you take. You should avoid natural health products that have iron and vitamin C. Vitamin C supplements cause your body to absorb more iron from food. But it is okay to eat foods that have vitamin C (such as oranges).
  • Ask your doctor if you need to make any changes in your diet. If you need to reduce the amount of iron in your diet, eat less red meats and organ meats, which contain high amounts of iron. Avoid iron-fortified food, such as some breads and cereals.
  • Drink tea and coffee. These drinks can cause your body to absorb less iron from the food you eat. Drinking these beverages does not replace usual treatment.
  • Do not use iron cookware. Food cooked in ironware can absorb some of the iron.
  • Get hepatitis A and hepatitis B shots. These vaccines can protect your liver.
  • Limit or do not drink alcohol. Alcohol can cause more damage to your liver.
  • Be careful when you eat seafood. You may be more likely to get sick if you eat undercooked seafood.

When should you call for help?

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your skin looks darker than usual or bronze-coloured.
  • Your heartbeat is too fast or slow.
  • You urinate and are thirsty more often than usual.
  • You have joint pain.
  • You are short of breath.
  • You feel very tired.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • You are worried that your children might have hemochromatosis.
  • You do not get better as expected.

Where can you learn more?

Go to http://www.healthwise.net/ed

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Current as of: February 5, 2016