What Is Hemochromatosis?

Medically Reviewed by Poonam Sachdev on December 13, 2022
4 min read

Hemochromatosis is a disorder where too much iron builds up in your body. Sometimes it’s called “iron overload.”

Normally, your intestines absorb just the right amount of iron from the foods you eat. But in hemochromatosis, your body absorbs too much, and it has no way to get rid of it. So, your body stores the excess iron in your joints and in organs like your liver, heart, and pancreas. This damages them. If it’s not treated, hemochromatosis can make your organs stop working.

There are two types of this condition -- primary and secondary.

Primary hemochromatosis is hereditary, meaning it runs in families. If you get two of the genes that cause it, one from your mother and one from your father, you’ll have a higher risk of getting the disorder.

Secondary hemochromatosis happens because of other conditions you have. These include:

White people of northern European descent are more likely to get hereditary hemochromatosis. Men are 5 times more likely to get it than women.

Up to half of people who have hemochromatosis don’t get any symptoms. In men, symptoms tend to show up between ages 30 and 50. Women often don’t show signs of this condition until they’re over 50 or past menopause. That may be because they lose iron when they get their periods and give birth.

Symptoms of hemochromatosis include:

  • Pain in your joints, especially your knuckles
  • Feeling tired
  • Unexplained weight loss
  • Skin that has a bronze or gray color
  • Pain in your belly
  • Loss of sex drive
  • Loss of body hair
  • Heart flutter
  • Foggy memory

Sometimes people don’t get any symptoms of hemochromatosis until other problems arise. These may include:

If you take a lot of vitamin C or eat a lot of foods that contain it, you can make hemochromatosis worse. That’s because vitamin C helps your body absorb iron from food.

It can be tricky for your doctor to diagnose hemochromatosis, because other conditions have the same symptoms. They might want you to get tested if:

  • You’re having symptoms.
  • You have one of the problems listed above.
  • A family member has the disorder.

There are some other ways your doctor can figure out if you have it:

Checking your history. They’ll ask about your family and if anyone has hemochromatosis or signs of it. They might also ask about things like arthritis and liver disease, which might mean you or someone in your family has hemochromatosis but doesn’t know it.

Physical exam. Your doctor will examine your body. This involves using a stethoscope to listen to what’s going on inside. They might also tap on different parts of your body.

Blood tests. Two tests can give your doctor a clue about hemochromatosis:

  • Transferrin saturation. This shows how much iron is stuck to transferrin, a protein that carries iron in your blood.
  • Serum ferritin. This test measures the amount of ferritin, a protein that stores iron, in your blood.

If either of these shows you have more iron than you should, your doctor might order a third test to see if you have a gene that causes hemochromatosis.

Liver biopsy. Your doctor will take a small piece of your liver. They’ll look at it under a microscope to see if there’s any liver damage.

MRI. This is a scan that uses magnets and radio waves to take a picture of your organs.

If you have primary hemochromatosis, doctors treat it by removing blood from your body on a regular basis. It’s a lot like donating blood. Your doctor will insert a needle into a vein in your arm or leg. The blood flows through the needle and into a tube that’s attached to a bag.

The goal is to remove some of your blood so that your iron levels return to normal. This could take up to a year or more. Blood removal is divided into two parts: initial treatment and maintenance treatment.

Initial treatment. You’ll visit your doctor’s office or a hospital once or twice a week to have your blood drawn. You may have up to a pint taken at a time.

Maintenance treatment. Once your blood iron levels have gone back to normal, you’ll still have to have to have blood taken, but not as often. It’ll be based on how fast iron builds back up in your body.