Quick Resources

  Online Support Group & Forum
  Find Doctor / Treatment Center
  Helpful Forms & Charts
  Symptoms
  Therapies
  Diet / Iron Content In Foods
  Genetics

Frequently Asked Questions (FAQ):


 

How can I be certain about the diagnosis of an iron disorder?

An iron disorder is any condition of Iron-Out-of-Balance™ . To diagnose a particular iron disorder tests that are specific to that disorder must be performed.  However, to check iron levels three measures are important: functional iron in hemoglobin, bound or free iron and stored iron. These measures can be determined with simple blood work: hemoglobin, fasting serum iron, total iron binding capacity and serum ferritin.

What is Functional Iron?

The iron in hemoglobin, which carries oxygen to all parts of the body is sometimes referred to as “functional iron”.  Hemoglobin can be normal or lowered when a person has inflammation due to an infection or some long-lasting disease. If one only looks at hemoglobin, anemia of chronic disease can be mistaken for iron deficiency anemia; iron pills might be taken which could be harmful or even deadly.

What is BOUND or FREE Iron?

Bound iron is the iron held by a protein such as transferrin or lactoferrin to assure that iron goes where it is supposed to go (bone marrow, etc) or to assure that iron is withheld from harmful invaders (bacteria or cancer).  Bound iron is determined by measuring TIBC (total iron binding capacity); but to calculate what percentage of transferrin is binding iron, fasting serum iron must be measured. Fasting serum iron divided by TIBC shows the percentage of transferrin left to bind up iron.


Free iron is iron that is not bound; it is the most dangerous kind of iron because free iron can cause damage to organs, nourish harmful bacteria, change DNA or help to spread cancer. Unbound iron is determined by measuring UIBC (unbound iron binding capacity).

What is Contained (or stored) Iron?

This iron is mostly in ferritin, contained for future needs, such as to make new red blood cells and to help us recover from rapid blood loss or to protect us from nourishing harmful germs or cancer cells.  In patients with hemochromatosis, this is the place where the body gets iron to make new red blood cells that are removed during blood donation.

FAQ about Too MUCH Iron

How do I know if I have iron overload?

Tests are needed to determine iron overload: fasting serum iron and total iron binding capacity (TIBC) are used to calculate the TS% (transferrin-iron saturation percentage). Serum ferritin measures the amount of iron in containment (storage). TS% is normally 25-35%; serum ferritin range varies by age and gender, but as a rule 25-75ng/mL is an acceptable range for most.

Are my children at risk for iron overload?

HFE related iron overload is not known to occur in youths. The iron accumulation process in classic HHC is very slow and takes 20-30 years to manifest in symptoms or organ damage. Newborns and infants have a naturally high iron saturation and ferritin, which can be misleading and inappropriately attributed to iron loading. There is a form of juvenile hemochromatosis, but this form is caused by genes other than HFE.

Is the HFE genetic test the best way to diagnose HHC?

Genetic testing is one way to diagnose classic hemochromatosis. Classic HHC is HFE related. Iron Disorders Institute does not recommend using the genetic test for screening purposes or on persons younger than age 19. Appropriate use of genetic testing for Classic HHC is to confirm of diagnosis in adults or for couples who are planning a family to determine carrier status. 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.

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

This is called iron avidity, a condition often seen in hemochromatosis patients.

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 de-ironed phlebotomies might be as infrequent as 3 or 4 times a year depending upon the patient. 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; contact Iron Disorders Institute to see if there is one in your area. 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. Contact us for details.

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 you are de-ironed, 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 contains chlorophyll, which provides 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 hemochroamtosis 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 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 heme and nonheme iron.

What other foods or substances inhibit the absorption of iron?

Fiber (phytate), and tannins found in tea, coffee, purple grapes or rices, 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.

Navigate