Managing Hemochromatosis

Updated on 6/4/09

The key to managing hemochromatosis is regulating iron levels.

Regulating iron levels requires:

• Phlebotomy at regular intervals for the life of the patient. Phlebotomy three to four times a year for men, and one or two times per year for women, is probably sufficient in people without complications who have brought their iron levels down to low normal levels.
• Monitoring of hemoglobin. Hemoglobin needs to be monitored so that anemia is avoided. People who have hemochromatosis should not take iron supplements.
• Restrictions on diet and alcohol. Patients should restrict their vitamin C and alcohol intake, as these both facilitate iron absorption. Also, they should avoid raw shellfish, as they are more susceptible to Vibrio vulnificus infection.

In addition, patients should be screened regularly for liver cancer. These screenings should include a yearly physical examination, biannual imaging of the liver, and a blood test for alpha-fetoprotein, a marker for tumors. If there is doubt about the presence of liver cancer, the definitive diagnosis is made by liver biopsy.

Links

More information on hemochromatosis is available at these websites recommended by the U.S. News & World Report Library:

National Heart Lung and Blood Institute (NHLBI)
This division of the U.S. Department of Health &and Human Services details the causes, risk factors, symptoms, treatment, and prevention of hemochromatosis. It also provides information for family members and others assisting people with the disease.

Iron Disorders Institute (IDI)
IDI and the Hemochromatosis Foundation provide information on the types of hemochromatosis and genetic mutations involved. The website lists people at risk, signs and symptoms, and how to detect the disease. There is a page for juvenile hemochromatosis, andas well as general information on iron imbalances.

National Digestive Diseases Information Clearinghouse (NDDIC)
A service of the National Institutes of Health (NIH), the NDDIC lists information on the causes, risk factors, symptoms, testing, diagnosis, and treatment of hemochromatosis.

American Hemochromatosis Society (AHS)
AHS is a nonprofit health organization that offers information on hemochromatosis, including symptoms, prevention, testing, and treatment. The website maintains a list of physicians who have either been recommended by, or who have indicated interest in treating hemochromatosis patients.

ClinicalTrials.gov
The NIH maintains ClinicalTrials.gov, a research database of federally and privately supported clinical trials. For more information, see the clinical trials Resource Information page has more information.