RECEIVING TREATMENT FOR HEMOCHROMATOSIS
It is very important to get iron levels down to normal. Therapeutic blood removal, or phlebotomy, is the most common means of iron reduction. Therapeutic phlebotomy (TP) is the same as regular blood donation but TP requires a doctor’s order (prescription).
Regular blood donation can be done every 8 weeks. A person with severe iron overload may need to give blood as much as 8 times in a single month! The goal is to bring blood ferritin levels to an ideal range of 50-150ng/mL. Depending on the amount of iron overload at the time of diagnosis, reaching normal levels can require several phlebotomies.
Serum ferritin drops about 30ng/mL with each full unit (500cc) of blood removed. When ferritin falls more rapidly following a phlebotomy, there is likely some other reason for the fast rate other than the blood donation. These reasons are specific to the individual but can include the presence of inflammation, changes in alcohol consumption, changes to medication, or nutrient deficiencies, e.g., vitamin B12.
Once iron levels reach normal, a person can begin maintenance therapy, which involves making a blood donation every 2 to 4 months for life. Some people may need to give blood more or less depending on what they eat and how quickly their body absorbs iron.
The transferrin saturation percentage (TS%) and serum ferritin tests can be done periodically to help determine how often blood should be removed.
When hemochromatosis is diagnosed early and treated before organs are damaged, a person can live a normal life expectancy. For people who have the disease at the time of diagnosis, life expectancy may be shortened depending upon the disease. If a person is diagnosed and treated before serum ferritin is above 1,000ng/mL the risk of cirrhosis or liver cancer is less than 1%.
Other approaches: (rare) Iron chelation therapy is the removal of iron using medicine specifically formulated to identify iron, grab it, and carry it out of the body. Iron chelation is reserved for individuals whose hemoglobin values are too low to tolerate blood donation or phlebotomy.
DEALING WITH HEMOCHROMATOSIS
Explore Margaret Kennedy’s journey with Hemochromatosis.
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