Haemochromatosis 

Introduction 

Haemochromatosis

Alan was 55 when he was diagnosed with haemochromatosis or iron overload disorder – a condition where the body contains too much iron. He describes how he learned to manage the condition by changing his diet and having venesection treatment several times a year.

Media last reviewed: 28/01/2013

Next review due: 28/01/2015

Role of iron in the body

The main role of iron in the body is to help transport oxygen in the blood to vital organs. Iron combines with a protein in red blood cells to form a substance called haemoglobin.

When we breathe in, the oxygen in our lungs is attracted to the iron in haemoglobin and combines with it to form oxyhaemoglobin. This is transported around the body by blood cells, and oxygen released wherever needed.

Iron overload

Having too much iron in your body is known as iron overload.

Causes of iron overload other than haemochromatosis include:

  • the blood disorder thalassaemia
  • chronic liver disease
  • having a condition that requires frequent blood transfusion, such as sickle cell anaemia
  • drinking beer brewed in iron containers 
  • excess iron intake from iron pills or injections
  • long-term dialysis
  • rare inherited diseases that affect red blood cells, such as atransferrinaemia or aceruloplasminaemia

Finding out more about a long-term health condition

Accurate and reliable sources of further information on long-term conditions, including websites, self-help groups, charities and telephone helplines

Haemochromatosis is an inherited disorder in which iron levels in the body slowly build up over many years.

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

Read more about symptoms of haemochromatosis.

What causes haemochromatosis?

Haemochromatosis is caused by an inherited faulty gene that allows a person to absorb excess amounts of iron from food. Normally, the body absorbs as much as it needs.  

Over time people with haemochromatosis absorb and accumulate too much iron in their body, which has a harmful effect on many of its processes.

Read more about the causes of haemochromatosis.

Complications

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

This can lead to potentially serious complications such as:

Read more about complications of haemochromatosis.

Treatment

Haemochromatosis responds well to treatment.

Treatment aims to remove excess iron from the body. A type of treatment known as phlebotomy is usually used.

During a phlebotomy a small amount of blood is removed in a process similar to a blood donation. Removing blood from the body on a regular basis will lead to a corresponding drop in iron levels.

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

Read more about treating haemochromatosis.

Screening

Routine screening for haemochromatosis is not offered by the NHS because it is 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.

These include:

  • reducing consumption of red meat
  • limiting the consumption of alcohol – as well as containing iron, alcohol can damage the liver, which could be dangerous in people with pre-existing liver disease

Read more about living with haemochromatosis.

Who is affected

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

As many as one person in 200 may be affected.

Symptoms usually start around the age of 40 in men and after the age of 50 in women. Symptoms in women are 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.

Page last reviewed: 15/05/2012

Next review due: 15/05/2014

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Comments

The 7 comments posted are personal views. Any information they give has not been checked and may not be accurate.

SarahIO said on 09 February 2012


@Teenager forever sorry to hear you have had a bad experience. I don’t think it can have been the UK Haemochromatosis Society that you spoke to. We deal with thousands of phone enquiries and if we are concerned about an enquirer’s health we suggest that they speak to their medical advisors.
Your consultant should be monitoring your haemoglobin to prevent you from becoming anaemic – do you have a copy of the venesection record card we produce? There is a reminder in it that you should not be venesected if your haemoglobin is below 11.5. Most consultants aim to reduce patients ferritin levels to 50 µg/L initially, 4 is very low. Please contact us direct if you have any questions.
http://haemochromatosis.org.uk/pages/teststreatment.html

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teenager forever said on 30 September 2011

I was diagnosed with Genetic Haemochromatosis.. in 1998 ...
I have just recently had anemia.. My Ferritin level is 4.
Well boffins .. Work that one out !!
@ferritin fred..
you are not a ''victim'' as you call it.. just an unlucky one in four..
Just get on with it.. I went to the ''Sociey'' what a waste of time .. They frightened the life out of me..One person at the ''Society'' told me I was going to die
I got more sense from my GP who actually knows about Haemochromatosis.. and the Liver Unit at Birmingham QE Hospital
I totally agree with Dominic Paine above !!

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izzywizzy said on 01 July 2011

Can anyone tell me why the blood from venosections is not treated the same as usual donor blood? I know that in America it is used...so why not here? I have had approx 24 venosections in the last 12 months and it is most frustrating that my blood which is otherwise clean (apart from this condition) is thrown away!
I listened to an article on bbc breakfast tv recently that claimed that there were not enough donors in this country at this time...So I'd love to know why our blood isn't being used to help people, as it is in America!!

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Iron maiden said on 30 September 2010

Can't get life insurance because of haemochromatosis - anyone else had same problem?

Chronic voice hoarseness, also chronic insomnia - are these related to hm does anyone know?

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Ferritin Fred said on 08 September 2010

May I point out as a victim of genetic haemochromatosis for twenty years that expert advice can be obtained from our national Society who can be found on the internet. There are also several regional support groups including my own West Midlands one, all of which are easily contactable on the internet.
G.P.'s and non specialist doctors are rarely of much help.
Ferritin Fred

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Dominic Paine said on 27 February 2010

As a patient of Haemochromatosis (but not a medical expert) I would like to express my concern that you are advising people not to eat red meat at all. The advice I have received from specialists is to 'reduce' consumption to the occasional consumption of red meat but to 'avoid' all organ meats. The rationale is that if consumed in moderation (once a week for example) red meat (not organ meat) provides more benefits in terms of nutrition than problems caused through absorbing the iron. I would like to see more constructive advice on this site please! The overarching advice should be that the phlebotomy removes far more iron per treatment than it is possible to consume in the same time period, so keep the treatment going! Thanks and sorry for seeming to teach you to suck eggs!

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SMCD5 said on 14 November 2009

The advice here is flawed in some respects. Please go the UK haemochromatosis website (linked) on the side of this page.

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