Ironjustic
Fri, Mar-09-07, 06:16
http://www.dailymail.co.uk/pages/live/articles/health/healthm-
ain.html?in_article_id=438825&in_page_id=1774&in_a_source=
Tired? aching? Lost interest in sex? This could be the
surprising reason... By JEROME BURNE - Do you feel tired much
of the time? Do your joints ache? Does sex seem a lot less
interesting than it used to?
You could be one of an estimated 150,000 people in the UK who
have the genetic disorder 'haemochromatosis', a condition that
is almost never diagnosed until it has damaged essential
organs such as the liver, heart or the thyroid gland.
And yet a cheap and simple treatment can stop the aches and
pains before they start, as well as possibly saving your life.
'I would have been spared so much misery, if the disease
had been spotted in my 30s,' says businesswoman Clara
Smith, now 62.
A few years ago, Clara was diagnosed with early stage
Parkinson's disease. She also has irregular heart rhythms and
may need a pacemaker.
Both problems may be linked with haemachromatosis and
she believes that with early diagnosis she could have
avoided them.
The problem for Clara and tens of thousands like her is too
much iron. Normally, people stop absorbing iron from their
diet when they've got enough, but if you've got
haemochro-matosis your body just keeps on extracting it and
storing it away in various organs where it becomes
increasingly toxic.
The tragedy is that few doctors are aware of the disease and
fewer still think of testing for it, even though diagnosis and
treatment are relatively simple. The first stage would be a
test to determine the iron levels in your body followed by
blood-letting - as if you were giving blood - to bring levels
down and keep them normal.
'All doctors are aware of the dangers of not having enough
iron,' says Professor John Porter of the haematology unit
at University College London and one of the UK's top
experts in the disease. 'But they rarely think of the
dangers of having too much.
'The irony is that in the early days the symptoms of anaemia
(not enough iron) are very similar to having too much -
tiredness and lethargy. So these patients are often given the
last thing they need - more iron.
'It would be very easy to make the test for too much iron part
of a normal blood test.'
Clara says: 'I started feeling ill in my 30s. I had bad
headaches, palpitations and sore knees. I went to the
doctors quite a lot. I was diagnosed with an underactive
thyroid and given a hormone to correct it but I still didn't
really feel well.'
Her health remained poor for several years and although she
had various tests, nothing serious showed up.
'I think my doctor probably regarded me as a "heart sink"
patient - someone who regularly turns up in surgery with vague
symptoms that have no obvious cause. Part of the problem was
that I always looked well, tanned and slim, but I felt
terrible.'
Unknown to her then, a bronzing of the skin is another sign of
the disease.
At one point, because she was always tired, her doctor
suggested she might have CFS (chronic fatigue syndrome), a
condition many doctors believe is best treated with a form of
psychotherapy. On another occasion she was given an iron
supplement.
It's all the more surprising that haemochromatosis is below
most GPs' radar because it is the most common genetic disorder
in the UK - more common than cystic fibrosis, phenylketonuria
(a vitamin K deficiency which every baby is tested for) and
muscular dystrophy combined.
It is caused by a faulty gene. Every gene we carry has two
halves, one from each of our parents. In most people with
haemochromatosis both halves of the gene are faulty.
'About one in 200 people who originate from the north of
England or Scotland have two faulty halves,' says Prof Porter.
'So if people show up at the doctor's surgery with some of the
early signs - such as diabetes or thyroid problems - it makes
sense to test their iron levels.'
The very fact that haemochro-matosis is so common
suggests that at some time in the past it must have
helped people survive.
But how? The clue comes from its nickname - the 'Celtic
Curse'. If you have Celtic ancestors - Scots or Irish - you
have a much higher chance of developing it.
One theory is that it started in parts of Northern Europe
where it was hard to get enough iron from your diet.
Some researches believe it originated in Ireland while others
think it emerged with the Vikings. It is certainly more common
in areas that the Vikings settled, such as the East coast of
England and around Dublin. The further south you go in Europe
the less common the faulty gene becomes.
So a combination of being Irish, being tired all the time and
having a thyroid problem, or diabetes, should set alarm bells
ringing. Clara is Irish, but as with many others in the UK,
the doctors never made the connection.
The key to her chronic ill health was eventually discovered on
the internet by her daughter Susan.
She says: 'I'd been looking at sites that dealt with some
of my mother's symptoms when I got an e-mail about thyroid
problems that also mentioned haemochro-matosis as a
possible cause.
'I'd never heard of it but as soon as I looked it up
everything fell into place. There were all my mother's
symptoms; the tiredness, the tightness in the chest, the
pains, everything.'
Iron is a vital part of many proteins and enzymes and it is a
key part of the red blood vessels that carry oxygen around the
body. An average person will carry a total of around 4g in
their body - but if you develop haemochromatosis you may be
carrying as much as 15 or 20g. More than 10g and you count as
overloaded.
Even when Susan made the connection, a nasty shock awaited
them in Clara's medical records.
'It turned out that my iron blood levels had actually been
tested 15 years earlier,' says Clara. 'The results showed that
far from not having enough iron, my levels were sky high.
'But it was considered so unimportant that I was not even told
the result. Instead the doctor just said I had "plenty of
everything" and to "go off and enjoy life".
'Actually that was the last thing I did; that doctor's
decision to ignore those results set me up for 20 years
of misery.'
But there was something else odd about Clara's diagnosis.
Besides having a second test for iron in her blood, she also
had a gene test, which revealed that - very unusually - only
one of the two halves of her gene was faulty.
'By rights I shouldn't have had any problems,' she says, 'but
this just shows that the genetics of haemochromatosis haven't
been fully sorted out yet.'
Others are luckier. About 20 to 30 per cent of those with two
faulty halves don't get the disease and most of these lucky
ones are women.
Findings like these have convinced the experts that it's too
soon to call for full-scale national gene testing for
haemochromatosis. 'Not only are there still too many
uncertainties, but knowing you have one or both genes could
make for insurance problems later,' says Prof Porter.
'However, just checking the iron levels of likely patients
would be a major step forward.'
A genetic diagnosis of haemochromatosis of one person in a
family usually prompts children and spouses to be tested. And
for Susan, who for years had been suffering the same sort of
symptoms as her mother, it showed that she has both faulty
halves of the gene. Her father was also a carrier, with one
faulty half.
'It came as a shock,' she says, 'and I'm still coming to terms
with it, but hopefully being diagnosed early will allow me to
avoid more serious problems.'
Susan's brother, now in his 40s, had no symptoms and thought
he was perfectly healthy. But he, too, has a set of faulty
genes and hugely raised iron levels.
'There are thousands of men in the UK with both sets of the
dangerous gene variations who think they are perfectly
healthy.' says Prof Porter. 'The first time they know anything
is wrong is when they keel over with a heart attack or
suddenly find that their liver has packed up'.
Men with the disease are more likely to show up with damaged
organs sooner because they don't regularly lose blood through
their lives as women do - menstruation protects women by
flushing iron out of their system.
At the moment, the official NHS Direct website barely mentions
haemochromatosis; just in passing as a rare cause of cirrhosis
- serious liver damage.
According to Prof Porter: 'Thousands of lives could be
immeasurably improved and millions of pounds worth of
treatment avoided if it this genetic disorder could move off
the mortuary slab and into the consulting room.'
The Haemochromatosis Society www.haemochromatosis.org.uk Tel:
020 8449 1363.
Who loves ya. Tom
Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com
Man Is A Herbivore! http://tinyurl.com/a3cc3
DEAD PEOPLE WALKING http://tinyurl.com/zk9fk
ain.html?in_article_id=438825&in_page_id=1774&in_a_source=
Tired? aching? Lost interest in sex? This could be the
surprising reason... By JEROME BURNE - Do you feel tired much
of the time? Do your joints ache? Does sex seem a lot less
interesting than it used to?
You could be one of an estimated 150,000 people in the UK who
have the genetic disorder 'haemochromatosis', a condition that
is almost never diagnosed until it has damaged essential
organs such as the liver, heart or the thyroid gland.
And yet a cheap and simple treatment can stop the aches and
pains before they start, as well as possibly saving your life.
'I would have been spared so much misery, if the disease
had been spotted in my 30s,' says businesswoman Clara
Smith, now 62.
A few years ago, Clara was diagnosed with early stage
Parkinson's disease. She also has irregular heart rhythms and
may need a pacemaker.
Both problems may be linked with haemachromatosis and
she believes that with early diagnosis she could have
avoided them.
The problem for Clara and tens of thousands like her is too
much iron. Normally, people stop absorbing iron from their
diet when they've got enough, but if you've got
haemochro-matosis your body just keeps on extracting it and
storing it away in various organs where it becomes
increasingly toxic.
The tragedy is that few doctors are aware of the disease and
fewer still think of testing for it, even though diagnosis and
treatment are relatively simple. The first stage would be a
test to determine the iron levels in your body followed by
blood-letting - as if you were giving blood - to bring levels
down and keep them normal.
'All doctors are aware of the dangers of not having enough
iron,' says Professor John Porter of the haematology unit
at University College London and one of the UK's top
experts in the disease. 'But they rarely think of the
dangers of having too much.
'The irony is that in the early days the symptoms of anaemia
(not enough iron) are very similar to having too much -
tiredness and lethargy. So these patients are often given the
last thing they need - more iron.
'It would be very easy to make the test for too much iron part
of a normal blood test.'
Clara says: 'I started feeling ill in my 30s. I had bad
headaches, palpitations and sore knees. I went to the
doctors quite a lot. I was diagnosed with an underactive
thyroid and given a hormone to correct it but I still didn't
really feel well.'
Her health remained poor for several years and although she
had various tests, nothing serious showed up.
'I think my doctor probably regarded me as a "heart sink"
patient - someone who regularly turns up in surgery with vague
symptoms that have no obvious cause. Part of the problem was
that I always looked well, tanned and slim, but I felt
terrible.'
Unknown to her then, a bronzing of the skin is another sign of
the disease.
At one point, because she was always tired, her doctor
suggested she might have CFS (chronic fatigue syndrome), a
condition many doctors believe is best treated with a form of
psychotherapy. On another occasion she was given an iron
supplement.
It's all the more surprising that haemochromatosis is below
most GPs' radar because it is the most common genetic disorder
in the UK - more common than cystic fibrosis, phenylketonuria
(a vitamin K deficiency which every baby is tested for) and
muscular dystrophy combined.
It is caused by a faulty gene. Every gene we carry has two
halves, one from each of our parents. In most people with
haemochromatosis both halves of the gene are faulty.
'About one in 200 people who originate from the north of
England or Scotland have two faulty halves,' says Prof Porter.
'So if people show up at the doctor's surgery with some of the
early signs - such as diabetes or thyroid problems - it makes
sense to test their iron levels.'
The very fact that haemochro-matosis is so common
suggests that at some time in the past it must have
helped people survive.
But how? The clue comes from its nickname - the 'Celtic
Curse'. If you have Celtic ancestors - Scots or Irish - you
have a much higher chance of developing it.
One theory is that it started in parts of Northern Europe
where it was hard to get enough iron from your diet.
Some researches believe it originated in Ireland while others
think it emerged with the Vikings. It is certainly more common
in areas that the Vikings settled, such as the East coast of
England and around Dublin. The further south you go in Europe
the less common the faulty gene becomes.
So a combination of being Irish, being tired all the time and
having a thyroid problem, or diabetes, should set alarm bells
ringing. Clara is Irish, but as with many others in the UK,
the doctors never made the connection.
The key to her chronic ill health was eventually discovered on
the internet by her daughter Susan.
She says: 'I'd been looking at sites that dealt with some
of my mother's symptoms when I got an e-mail about thyroid
problems that also mentioned haemochro-matosis as a
possible cause.
'I'd never heard of it but as soon as I looked it up
everything fell into place. There were all my mother's
symptoms; the tiredness, the tightness in the chest, the
pains, everything.'
Iron is a vital part of many proteins and enzymes and it is a
key part of the red blood vessels that carry oxygen around the
body. An average person will carry a total of around 4g in
their body - but if you develop haemochromatosis you may be
carrying as much as 15 or 20g. More than 10g and you count as
overloaded.
Even when Susan made the connection, a nasty shock awaited
them in Clara's medical records.
'It turned out that my iron blood levels had actually been
tested 15 years earlier,' says Clara. 'The results showed that
far from not having enough iron, my levels were sky high.
'But it was considered so unimportant that I was not even told
the result. Instead the doctor just said I had "plenty of
everything" and to "go off and enjoy life".
'Actually that was the last thing I did; that doctor's
decision to ignore those results set me up for 20 years
of misery.'
But there was something else odd about Clara's diagnosis.
Besides having a second test for iron in her blood, she also
had a gene test, which revealed that - very unusually - only
one of the two halves of her gene was faulty.
'By rights I shouldn't have had any problems,' she says, 'but
this just shows that the genetics of haemochromatosis haven't
been fully sorted out yet.'
Others are luckier. About 20 to 30 per cent of those with two
faulty halves don't get the disease and most of these lucky
ones are women.
Findings like these have convinced the experts that it's too
soon to call for full-scale national gene testing for
haemochromatosis. 'Not only are there still too many
uncertainties, but knowing you have one or both genes could
make for insurance problems later,' says Prof Porter.
'However, just checking the iron levels of likely patients
would be a major step forward.'
A genetic diagnosis of haemochromatosis of one person in a
family usually prompts children and spouses to be tested. And
for Susan, who for years had been suffering the same sort of
symptoms as her mother, it showed that she has both faulty
halves of the gene. Her father was also a carrier, with one
faulty half.
'It came as a shock,' she says, 'and I'm still coming to terms
with it, but hopefully being diagnosed early will allow me to
avoid more serious problems.'
Susan's brother, now in his 40s, had no symptoms and thought
he was perfectly healthy. But he, too, has a set of faulty
genes and hugely raised iron levels.
'There are thousands of men in the UK with both sets of the
dangerous gene variations who think they are perfectly
healthy.' says Prof Porter. 'The first time they know anything
is wrong is when they keel over with a heart attack or
suddenly find that their liver has packed up'.
Men with the disease are more likely to show up with damaged
organs sooner because they don't regularly lose blood through
their lives as women do - menstruation protects women by
flushing iron out of their system.
At the moment, the official NHS Direct website barely mentions
haemochromatosis; just in passing as a rare cause of cirrhosis
- serious liver damage.
According to Prof Porter: 'Thousands of lives could be
immeasurably improved and millions of pounds worth of
treatment avoided if it this genetic disorder could move off
the mortuary slab and into the consulting room.'
The Haemochromatosis Society www.haemochromatosis.org.uk Tel:
020 8449 1363.
Who loves ya. Tom
Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com
Man Is A Herbivore! http://tinyurl.com/a3cc3
DEAD PEOPLE WALKING http://tinyurl.com/zk9fk