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. In this video, he describes how he learned to manage the condition by changing is diet and having venesection treatment several times a year. Also, learn about the role that iron plays in the body, how an iron overload may occur, and the effects this could have on your organs.

Role of iron in the body

The main role of iron in the body is to help transport oxygen in the blood to the vital organs. Iron combines with a protein in the 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 the blood cells, and oxygen is released wherever it is needed.

Haemochromatosis, or iron overload disorder, is a condition where the body contains too much iron. This is usually because of an inherited faulty gene that causes you to absorb excess amounts of iron from food.

Iron is an essential mineral for our body (see box). Normally, our body monitors our daily need for iron and absorbs it from food in the required amounts. People with haemochromatosis have a fault in this control process. Over time, they absorb and accumulate too much iron in their body.

After a while, if haemochromatosis is left untreated, the body starts to deposit the extra iron in other areas of the body. It usually gathers around organs, such as the heart and liver.

Once the iron starts building up, it causes uncomfortable symptoms, such as nausea, abdominal (tummy) pain, constipation and joint pain (see Haemochromatosis – symptoms for more information). It can lead to liver damage, heart failure and diabetes if left untreated.

There are two types of haemochromatosis:

  • primary haemochromatosis – when the condition is inherited (this is the most common type)
  • secondary haemochromatosis – when it results from another condition, such as chronic liver disease, or from treatments such as blood transfusions

Who is at risk

Haemochromatosis is now recognised as one of the most common genetic disorders in the UK. Research has shown that as many as 1 in 200 people are likely to be at risk of developing iron overload.

Iron build-up can take many years. Men usually show symptoms before women, because women regularly lose blood (and therefore iron) during their period.

Haemochromatosis can be diagnosed by a blood test. Once confirmed, it is important to start treatment as soon as possible to avoid more iron build-up. Treatment involves removing blood, in a method similar to blood donation, to lower your iron levels (see Haemochromatosis – treatment for more information).

Outlook

As long as treatment starts as soon as possible, the body’s iron stores should return to a normal level and symptoms will improve. Life expectancy should not be affected if the condition is treated before excessive build-up of iron occurs.

However, treatment for haemochromatosis will not cure any other conditions that may have resulted from iron overload, such as cirrhosis and diabetes.

Last reviewed: 04/05/2010

Next review due: 04/05/2012

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Comments 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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