Hemochromatosis can be treated simply and successfully. The treatment, called phlebotomy (pronounced “fle-bot-o-me”), removes blood to lower the amount of iron in the body. It is similar to giving blood and is the best way to treat the disease.
If phlebotomy treatment is started before too much iron has built up in the body, it can stop many of the serious problems of hemochromatosis.
- If you have no organ damage and get proper care, you can expect to live a normal life.
- If you already have organ damage, treatment can stop additional damage, but it cannot reverse damage that has already started.
- Even if you have developed serious problems, treatment can lessen many symptoms and improve your quality of life.
Important things to know about phlebotomy treatment for hemochromatosis:
- Drink plenty of water, milk, or fruit juices both before and after the treatment.
- Avoid vigorous physical activity for 24 hours after your phlebotomy treatment.
- Be sure to keep your phlebotomy appointments as directed by your doctor.
The phlebotomy treatment consists of two phases: an “iron reduction” phase and the long-term maintenance phase.
Iron Reduction Phase
In the iron reduction phase, a health care professional removes about one pint of whole blood, usually once or twice a week.
This phase usually lasts until all of the extra iron stored in the body has been removed. It can take three months to one year, but the time varies from person to person. Age, gender, the cause of the iron overload, and severity of symptoms all affect how long this phase takes. During this phase, the doctor checks hemoglobin and serum ferritin levels.
Long-term Maintenance Phase
Once the extra iron has been taken out, the doctor will set up a long-term maintenance program to make sure you keep a normal amount of iron in your body.
How often a person needs phlebotomy during this phase varies based on the severity of the symptoms. During this phase, the doctor continues to check hemoglobin and your serum ferritin levels.
Regular phlebotomy treatment keeps the amount of iron in the body at a normal level. A normal amount of iron is between 25 and 50 ng/mL (nanograms per milliliter).
- Men usually need to have 3 to 4 pints of blood taken out each year (about once every 3 months) to maintain this level.
- Women may need to have 1 to 2 pints of blood taken out each year (about once every 6 months) to maintain this level.
- Some people, especially older people, may not need to have any more treatments, but they should still have their serum ferritin level checked at least once a year.
If you have hemochromatosis, you should have your serum ferritin level checked at least once a year. Doing so can help keep your iron level within the normal range and avoid the serious problems caused by too much iron.
Many patients and their doctors ask if it is safe for people with hemochromatosis to give blood. The U.S. Food and Drug Administration (FDA) has stated that blood from hemochromatosis patients can be used for people needing blood if the facility where the blood is donated meets the following rules:
- The blood collection center cannot charge a fee for collecting the blood.
- The blood center must apply to the FDA to be exempt from the existing rules.
For answers to questions about blood donation from patients with hemochromatosis, visit the Iron Disorders Institute at www.irondisorders.org or call toll free at 1-888-565-IRON (4766).
The protein that gives red blood cells their color; about 75% of the body’s iron is bound to hemoglobin and involved in oxygen transport from the lungs to the rest of the body. Regular levels are approximately 16 g/dL for men and 14 g/dL for women.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
Division of Blood Disorders
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
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