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Hereditary haemochromatosis is where iron levels in the body build up over many years. It is an inherited condition that you may have got from your parents.

This build-up of iron, known as iron overload, can cause unpleasant symptoms. If it is not treated, this can damage parts of the body such as the liver, joints, pancreas and heart.

Symptoms of haemochromatosis

Symptoms usually start between the ages of 30 to 60.

Common symptoms of haemochromatosis include:

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

Read more about symptoms of haemochromatosis

When to see a GP

See a GP if you have:

  • persistent or worrying symptoms that could be caused by haemochromatosis
  • a parent or sibling with haemochromatosis, even if you do not have symptoms yourself.

Talk to the GP about having blood tests to check for haemochromatosis.

Read more about tests for haemochromatosis

Treatments for haemochromatosis

There is no cure for haemochromatosis. But there are treatments that can reduce the amount of iron in the body and reduce the risk of damage.

There are 2 main treatments: phlebotomy and chelation therapy.

Phlebotomy

This is a procedure to remove some of your blood. This may need to be done every week at first. You may need to have the procedure 2 to 4 times a year for the rest of your life.

Chelation therapy

Chelation therapy involves taking medicine 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 do not need to make any big changes to your diet to control your iron levels if you're having treatment.

You are usually advised to avoid:

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

Read more about how haemochromatosis is treated

Causes of haemochromatosis

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

You can develop haemochromatosis if both your parents have the faulty gene and you inherit one copy from each parent.

You will not get haemochromatosis if you only inherit one copy of the faulty gene. But there's a chance you could pass the faulty gene on to any children you have.

Even if you do inherit 2 copies, you will not necessarily get haemochromatosis. Only a small number of people with 2 copies of this faulty gene will develop the condition. It's not known exactly why this is.

Read more about the causes of haemochromatosis

Complications of haemochromatosis

If haemochromatosis is diagnosed and treated early, it will not affect how long you will live for. It is also 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

Read more about complications of haemochromatosis

Support

The Irish Haemochromatosis Association provides information and support to people living with haemochromatosis.

Content supplied by the NHS and adapted for Ireland by the HSE.

page last reviewed: 22/12/2020
next review due: 22/12/2023

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This project has received funding from the Government of Ireland’s Sláintecare Integration Fund 2019 under Grant Agreement Number 123.