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Too Much of a Good Thing....

Iron Overload!

Haemochromatosis
 (Hemochromatosis – American spelling)

 

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This website contains facts, information and personal experiences of haemochromatosis

family photograph me, daughter Polly, grandsons Bruce Rhett and Pip

Hi, my name is Alan Mannering, I come from Birmingham in the West Midlands of the UK , and I have haemochromatosis.

Haemochromatosis is my silent illness. You haven't heard of it? Well not many people have. I was diagnosed quite accidentally when I was 55. This is the most common of all the genetic conditions; it is even more common than cystic fibrosis or muscular dystrophy. The incidence is now reckoned to be between 1 in 200 to 300 with 1 person in 10 being carriers of the mutant gene. It is a condition in which the body does not metabolise iron, which then accumulates over the years in various organs. Notably, it is in the liver and pancreas etc.

My own stored iron level was about 2000% too high; this excess having accumulated over 55 years. I was diagnosed purely by chance after a cardiac check at my local hospital. The heart specialist noticed a bronze colouring on my body, which alerted him to the possibility of me having the condition........this is sometimes called bronze diabetes.

 

 

What are the symptoms?
  • Chronic fatigue, lethargy and weakness
     
  • Abdominal and stomach pains
      
  • Arthritis, especially of knuckles and first finger joint
     
  • Late onset diabetes (non insulin dependent - type 2)
     
  • Cirrhosis and Fibrosis and other liver problems...abnormal function tests
     
  • Impotence (sexual dysfunction) in men and scanty menstruation in women

  • Cardiomyopathy... disease of heart muscle
  • Neurological disorders... moods... depression... memory loss

  • Osteoporosis... brittle bone disease in men and women

  • Bronzed skin colouration... in effect a permanent tan
The Iron Disorders Institute Guide to Hemochromatosis
This book has been my bible and reference book for many years and I have never found another book that is so clearly written and so well structured as it deals with many problems through case studies and has a comprehensive index. This is the only book once offered for sale by the British Society. It is authoritative and well written and I would not be without a copy.
The Hemochromatosis Cookbook
I have always enjoyed cooking but I was a little bit phased when I realized that I would have to cook differently to limit my iron intake. Cheryl Garrison's book, has been a great help to me in keeping me focused on this dietry requirement. Cheryl's husband suffers from our complaint and Cheryl whom I have known for several years, has worked intensely to find tasty and interesting low iron dishes. She is rather an authority on G.H. and ran a lively forum for the Iron Institute of America.

Who can be affected?
First of all it is a condition which mainly the Caucasian population can inherit and there is some evidence that it is generally associated with people of Celtic origin, especially Irish folks. It used to be thought that this was a  masculine complaint, but now it has been shown that women are just as vulnerable in inheriting genetic haemochromatosis as men. It is identified in the populations of most European countries, as well as Australia United States of America and Canada.
All of these countries have  strong voluntary support organisations.

How can I find out?
Initially, you will be given blood tests to give a provisional indication of your likelihood of having inherited this condition. These tests will probably be as follows:
Serum Ferritin...this gives an indication of the stored iron levels in your body and should have upper limits of 300 in men and 200 in women ( units are in nanograms per mililitre ).Once diagnosed they will aim to keep your ferritin below 50 However Serum Ferritin might be within  the normal range and can be raised due to other reasons.
Transferrin Saturation...this is usually a more reliable indication and is simply the ratio between your Serum Iron level and your Total Iron Binding Capacity (TIBC). It is expressed as a percentage and should not exceed 62% in men and 55% in women. An average reading is about 30%.  
Genetic testing... Luckily in the last few years the Americans have identified the defective gene and you can now be tested for it.The most common mutant gene is known as the C282Y gene, but it is not the only one. This test can predict your susceptibility or otherwise with a fair degree of accuracy. 
Lastly...there is the liver biopsy where your consultant will remove a small sample of  your liver and he will be able to estimate the amount of iron accumulated in the liver and also assess any damage incurred by your liver. This is an invasive procedure and is not carried out so often now that the gene test is readily available.

Is there treatment available?
Yes, there is, but not in tablet form at present. You will have to attend for blood letting (venesection/phlebotomy ) probably once every week, for up to two years when they will remove a unit of blood...about a pint each time. This makes your body use up its stored iron to replace the red blood cells removed. Each treatment removes about 250 mg of iron. This is the only treatment currently available; but it does work...believe me, I know.

Who Are You, Alan Mannering?
I am just a guy who was diagnosed late in life and tries to help our national society to spread the word. I am 71 and am a retired teacher and still lead a normal life and travel frequently. I just consider that this is an important message to get across to people.
For any of you who are members of a society or club where you require speakers, please click here for details of my talk which is called 'Any Old Iron'. Details of several other public speakers covering a wide range of subjects are also available through the site www.diannemannering.co.uk
 


Where can I get information and support?

Me of course: alan.mannering@btopenworld.com

or from

Janet Fernau,

British Haemochromatosis Society,

Barnet London

Tel: 020 8449 1363

E.Mail: info@haemochromatosis.org.uk

Web: http://www.haemochromatosis.org.uk  

Revised: : 28th June 2009  Published by: Alan Mannering, Sheldon, Birmingham and assisted by
  Compare-creditcards.com  & Myholidayhouse.co.uk also by my ex wife Dianne Mannering

 

 
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