Haemochromatosis

About haemochromatosis

Haemochromatosis leads to a build-up of iron, known as iron overload.

This can cause unpleasant symptoms. If it isn't treated, this can damage parts of the body such as the liver, joints, pancreas and heart.

Haemochromatosis most often affects people of white northern European background.

It is particularly common in countries where there are more people from a Celtic background, such as Northern Ireland.

Symptoms of haemochromatosis

Symptoms of haemochromatosis usually start between the ages of 30 and 60.

Common symptoms include:

• feeling very tired all the time (fatigue)
• weight loss
• weakness
• joint pain
• in men, an inability to get or maintain an erection (erectile dysfunction)
• in women, irregular periods or absent periods

When to see your GP

You should see your GP if you have:

• persistent or worrying symptoms that could be caused by haemochromatosis – particularly if you have a northern European family background
• a parent or sibling with haemochromatosis, even if you don't have symptoms yourself – tests can be done to check if you're at risk of developing problems

Talk to your GP about whether you should have blood tests to check for haemochromatosis.

Treatments for haemochromatosis

There's no cure for haemochromatosis.

There are treatments that can reduce the amount of iron in the body and reduce the risk of damage.

There are two main treatments.

• phlebotomy
• chelation therapy

Phlebotomy

Phlebotomy is a procedure to remove some of your blood.

This may need to be done every week at first but can be done every few months once your iron level comes down to normal.

Chelation therapy

Chelation therapy is where you take medication to reduce the amount of iron in your body.

This is only used if it's not easy to regularly remove some of your blood.

You don't need to make any big changes to your diet to control your iron levels if you're having treatment, but you'll usually be advised to avoid:

• breakfast cereals containing added iron
• iron or vitamin C supplements
• drinking too much alcohol

Causes of haemochromatosis

Haemochromatosis is caused by a faulty gene that affects how the body absorbs iron from food.

You're at risk of developing the condition if both of your parents have this faulty gene and you inherit one copy from each of them.

You won't get haemochromatosis if you only inherit one copy of the genetic fault, but there's a chance you could pass the faulty gene on to any children you have.

Even if you do inherit two copies, you won't necessarily get haemochromatosis.

Only a few people with two copies of this genetic fault will ever develop the condition. It's not clear exactly why this is.

Complications of haemochromatosis

If the condition is diagnosed and treated early on, haemochromatosis doesn't affect life expectancy and is unlikely to result in serious problems.

But if it's not found until it's more advanced, the high iron levels can damage parts of the body.

This can lead to potentially serious complications, such as:

• liver problems – including scarring of the liver (cirrhosis) or liver cancer
• diabetes – where the level of sugar in the blood becomes too high
• arthritis – pain and swelling in the joints
• heart failure – where the heart is unable to pump blood around the body properly

More useful links

• How to use your health services
• Haemochromatosis UK