FREQUENTLY ASKED QUESTIONS

How is the genetic test done? A tissue sample can be obtained by taking blood or by doing a cheek swab. Both ways are reliable. About 15% of those with iron overload do not have mutations of HFE. Genetic testing does not provide information about tissue iron levels.

Do I need a liver biopsy to diagnose hemochromatosis?

Liver biopsy is an important diagnostic procedure; it remains one of the best ways to determine liver damage, such as cirrhosis. This procedure; however, is no longer used to diagnose classic hemochromatosis. Liver biopsy is used to diagnose or document iron levels in non-classical hemochromatosis.

What if my TS% is normal but serum ferritin is elevated?

You may have a condition called anemia of chronic disease (also called anemia of inflammatory response). In this iron disorder, the hemoglobin value is generally low or low normal.

What if my serum ferritin is low, but my TS% is elevated?

This is called iron avidity, a condition often seen in people with classic hemochromatosis (generally due to overbleeding) and individuals, usually women of child bearing age, who are iron deficient.

If I have iron overload, how often should I have a phlebotomy?

Patients with serum ferritin over 1,000ng/mL need aggressive iron removal and may need a phlebotomy twice a week until ferritin is lowered to a normal range. Once ferritin is below 1,000ng/mL, the risk of cirrhosis is less than 1%. Iron loading patterns vary with the individual depending upon a person’s age, compliance with therapy, general health, tissue iron levels, modifying genes not yet discovered, tolerance to blood extractions, and diet, especially the amount of red meat consumed. Ferritin levels need to be checked periodically to assure iron levels are dropping. Serum ferritin drops at an estimated 30ng/mL for each full unit of blood removed. Once iron has reached an acceptable level and no other iron disorders have presented as a consequence phlebotomies might be as infrequent as 3 or 4 times a year.

How can I prevent disease caused by iron overload? Early detection is the best way to reduce your risk of disease from iron overload/hemochromatosis.

Why is my blood thrown away?

At centers that do not have an FDA variance to use HHC blood for transfusion HHC blood must be discarded. However, centers that have the variance can take HHC blood every two weeks with a doctor’s order and they can use the blood for transfusional purposes. There are many centers with variances in the US. One of the most prestigious in the US is the Hemochromatosis Protocol at the Warren G. Magnuson Clinical Center in Bethesda, MD. If you live within driving distance of Bethesda, and you have HHC, you might be eligible to participate in this unique program. See Blood Centers

Should someone without hemochromatosis donate blood?

Yes, as long as they are healthy and meet all the requirements for blood donation. Men especially can benefit, since one blood donation a year can lower a male’s risk of heart attack by 50%

Can I drink alcohol if I have hemochromatosis?

If there is no evidence of liver damage, you can drink alcohol in moderation. Alcohol increases the absorption of iron and excessive amounts can damage the liver and cause some forms of anemia.

What type of cookware should I use while reducing my iron levels?

Glass or ceramic cookware is best. Iron filings can get into food from cast iron skillets and some grills. Once iron levels are back to a healthy range, any cookware is okay to use as long as your iron levels are being monitored regularly.

Do I have to give up red meat if I have hemochromatosis?

No; you just need to cut back on red meat while you are in the first phases of phlebotomy and trying to lower iron levels. Red meat such as beef, lamb, and venison contain high amounts of heme iron, which is the type of iron most easily absorbed by the body. Chicken, fish, and pork have less heme iron.

Do I need to stop eating spinach if I have hemochromatosis?

No. The iron in spinach is not easily absorbed, if at all. Spinach helps the body create antioxidants that combat free radical activity. People with high iron levels are at increased risk for free radical damage to organs.

What about fruits and vegetables?

People with hemochromatosis should eat at least five servings a day of fruits and vegetables. These foods help combat free radical activity.

I heard that people with hemochromatosis should avoid vitamin C; what about the vitamin C content in fruits and vegetables?

It is true that ascorbic acid increases the absorption of iron, but the amount of vitamin C in fruits and vegetables should not be a concern. Supplemental vitamin C, however, should be limited to no more than 200 milligrams per dose and taken between meals.

What about calcium?

Calcium inhibits the absorption of both types of iron: heme (animal based iron) and nonheme (plant based iron.)

What other foods or substances inhibit the absorption of iron?

Fiber (phytate) and tannins which are found in tea, coffee, purple grapes, purple rice, walnuts, and cocoa.

Why is raw shellfish dangerous to people with high iron?

Raw shellfish might contain a bacteria called Vibrio vulnificus that can be deadly to people with high iron levels.