Haemochromatosis

Haemochromatosis is an inherited disorder in which iron levels in the body slowly build up over many years, which is why it's sometimes called iron overload disorder.

The excess levels of iron can then trigger symptoms such as:

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

Read more about symptoms of haemochromatosis.

What causes haemochromatosis?

Haemochromatosis is an inherited condition caused by a faulty gene called HFE, that allows a person to absorb too much iron from food. Normally, the body only absorbs as much as it needs.

The excess iron starts building up in the body and causing problems.

Read more about the causes of haemochromatosis.

Complications

If haemochromatosis is left untreated, the extra iron accumulates in the body, usually in organs, such as the heart and liver.

This can lead to potentially serious complications such as:

• liver disease – including scarring of the liver (cirrhosis) or liver cancer
• heart failure – where the heart is unable to pump enough blood around the body

Read more about complications of haemochromatosis.

Treatment

Haemochromatosis responds well to treatment, which aims to remove excess iron from the body.

The usual treatment is quite simple. Blood is removed from the body on a regular basis – about the same amount taken in a blood donation, around 500ml (roughly a pint).

This leads to an overall drop in iron levels.

For people unable to use phlebotomy for medical reasons, a medication called deferasirox can be used as an alternative. This is known as chelation therapy.

Read more about treating haemochromatosis.

Screening

Routine screening for haemochromatosis is not offered by the NHS because it's a relatively uncommon condition.

However, if a close family member (a parent, brother or sister) is diagnosed with haemochromatosis you may want to consider getting tested for the condition yourself. Initial screening is done by blood test.

Read more about diagnosing haemochromatosis.

Living with haemochromatosis

Most people will be able to keep their haemochromatosis symptoms under control, but there are steps that can be taken to keep iron levels low and prevent complications.

For example:

• reduce your consumption of red meat (such as beef and lamb) and avoid organ meat (such as liver, kidney and heart) – iron is much more readily absorbed from meat than from vegetables, cereals and beans
• avoid taking iron supplements and eating foods fortified with iron, such as breakfast cereals
• reduce the amount of vitamin C you consume, as this increases absorption of iron and helps it deposit in some organs
• avoid drinking too much alcohol, especially with meals, as this can increase iron absorption and cause liver disease – if you do have some degree of liver disease you may be advised to avoid alcohol completely
• consume tea and dairy products with a meal to reduce the amount of iron absorbed

Who is affected

Haemochromatosis is uncommon in general terms, although it's one of the most common genetic (inherited) conditions in England.

As many as one person in 200 may be affected.

Symptoms usually start in adults between the ages of 30-50. Symptoms in women are often delayed because their iron levels are reduced when they have a period.

Haemochromatosis is most common in people of white European ethnic background – particularly people of Irish descent.