Hemochromatosis

The common inherited type is usually due to changes in a gene called HFE, which controls iron absorption, and requires two faulty copies, one from each parent. Other rarer genes exist. Iron overload can also happen without a genetic cause, for instance after many blood transfusions or in some blood diseases. Women are protected for a time by menstrual blood loss and pregnancy.

The common inherited form is much more frequent in people of Northern European ancestry and less so in other populations, and in our region other iron-overload causes, such as repeated blood transfusions for blood disorders, are more important. Not everyone with the gene change develops iron overload, and men are usually affected earlier than women.

Blood tests measure transferrin saturation (how full the iron-carrying protein is) and ferritin (a marker of iron stores). If these are high, genetic testing for HFE helps confirm the type. The doctor checks for organ damage with liver tests, FibroScan or MRI (which can estimate iron in the liver), and sometimes a liver biopsy. Blood sugar and heart tests may be done. Relatives are advised to be screened.

Regular treatment and sensible habits protect your organs.

• Attend your regular blood tests and treatment sessions

• Avoid alcohol, which adds to liver damage

• Do not take iron tablets or high-dose vitamin C supplements unless your doctor says so

• Have first-degree relatives screened

Diet changes help a little, but they do not replace treatment.

• Do not use iron-fortified foods or iron supplements unless advised

• You do not need to avoid red meat completely, but moderate large amounts

• Avoid raw shellfish, which can carry harmful bacteria that thrive with extra iron

• Drinking tea with meals reduces iron absorption slightly

Most people are treated by removing blood. Medicines are used in selected people. Your doctor decides.

• Iron-binding medicines (chelators) may be used if regular blood removal is not possible, for example in anemia

• Treat diabetes, joint pain or heart problems with the usual medicines as your doctor advises

• Acid-reducing medicines may slightly lower iron absorption; ask your doctor

Phlebotomy (venesection) is the standard treatment.

• Phlebotomy: removing blood regularly, like blood donation, to lower iron stores

• At first it is frequent, then less often to keep levels in range

• Ultrasound surveillance for liver cancer in cirrhosis

• Erythrocytapheresis, a way to remove red cells, is an option in some centers

When found and treated before organ damage, life expectancy is usually normal. Treatment can reverse some problems such as tiredness and may improve liver scarring early on, but arthritis and cirrhosis may not fully reverse. Those with cirrhosis need regular screening for liver cancer.

• Which type of iron overload do I have?

• Has the iron affected my liver, heart or pancreas?

• How often do I need blood removal and blood tests?

• Should my family be tested?

• Can I donate blood?

This guide comes from the Saudi Gastroenterology Association (SGA) patient library, prepared by the Approved for publication by SGA; individual clinician review is ongoing. Last reviewed: 2026-04-24. It is for education and does not replace your doctor's advice.