PERNICIOUS ANAEMIA SOCIETY
Changing the way Pernicious Anaemia is diagnosed and treated
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With your help we can continue to do our valuable work, supporting those that need it and campaigning to secure future improvements in detection and treatment of this illness. The more members we have the bigger our voice will be in getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. Join us and help us bring about this much needed review.
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If you have been recently diagnosed with Pernicious Anaemia, or if you suspect that you might have Pernicious Anaemia you will probably have lots of questions that you would like answers to.
What is Pernicious Anaemia ?
Pernicious means ‘ruinous, destructive and fatal’. Pernicious Anaemia was so named because it used to be fatal. It took doctors over 100 years from the disease first being identified to find a cure and a further twenty years to fully understand the condition.
So what causes Pernicious Anaemia?
A healthy person will produce red blood cells. Red blood cells are responsible for carrying haemoglobin in the blood – and it is haemoglobin that carries oxygen to everywhere it is needed. To make healthy red blood cells three things are needed; Folic Acid (vitamin B9), Iron and vitamin B12. Red blood cells are made in bone marrow and a healthy person will have adequate supplies of Iron, folic acid and B12 and so the bone marrow will happily construct healthy red blood cells. If a person is deficient in Iron the haemoglobin that will attach itself to the red blood cell will not be able to be formed and consequently won’t be able to transport any oxygen. If there is an inadequate supply of B12 the red blood cell will form but it will be distorted and won’t be able to transport any oxygen. It also won’t last very long. Pernicious Anaemia is caused by a lack of Vitamin B12.
Where does B12 come from?
Vitamin B12 is found in various concentrations in all animal products including meat, fish, eggs and dairy products. It is extracted from ingested food by a protein called intrinsic factor. Intrinsic Factor is produced in the first part of the digestive tract – the stomach. It is produced by parietal cells in the stomach. If you have a problem with your parietal cells then you will not produce any intrinsic factor. Once it has been produced the intrinsic factor enters the small intestine. One of the components of the small intestine is the ileum and it is in the ileum that the intrinsic factor binds with the B12 in any animal product that has been eaten. Then, via some complex biochemistry, it enters the bloodstream where it goes about the business of producing healthy red blood cells.
People who have Pernicious Anaemia lack intrinsic factor and so cannot absorb B12 from food that has been eaten.
Why do some people lack intrinsic factor?
Some people produce antibodies that destroy the parietal cells (parietal cell antibodies) that produce the intrinsic factor. Others may have had major stomach surgery that has prevented the parietal cells from doing their job. Others, and this group of people are those who are usually thought of as having pernicious anaemia, produce the intrinsic factor but then, and nobody knows why, they produce antibodies that ‘kill-off’ the intrinsic factor – anti-intrinsic factor antibodies. They are therefore unable to absorb B12 from any food that has been eaten.
How is Pernicious Anaemia Treated?
During the 1920s it was discovered that feeding large amounts of preferably raw liver to patients would keep them alive. In the 1940s liver extract injections were introduced and in the early 1960s artificially produced vitamin B12 was made widely available. Because people with Pernicious Anaemia are unable to extract B12 via their digestive tract, they have to have it injected into their bloodstream so that it can go about producing healthy red blood cells. There are three types of artificial B12 available:
Cyanocobalamin: This is used in the United States and mainland Europe. It is usually injected though some people take highly concentrated tablets. Around 1% of the tablet is absorbed. Most people will receive a 1mg/ml concentration every month. Some patients need much more frequent injections than others but nobody knows why. Whilst it is only available on prescription in the USA it is readily available over the counter at pharmacies in mainland Europe. In order to go about doing its job of making healthy red blood cells Cyanocobalamin has to be converted by the body into Hydroxocobalamin.
Hydroxocobalamin: This is the injection of choice in the UK, Australia and New Zealand. It is usually given as 1mg/ml and prescribed every three months which for most, though not all patients is hopelessly inadequate. It is only available on prescription in the U.K. Before doing its job Hydroxocobalamin has to be converted by the body into Methylcobalamin.
Methylcobalamin: This is not licensed for use in North America or Europe but is readily available from reputable doctors. It is available in various strengths with 5mg/ml being the most popular. 20mg/ml as well as 50mg/ml and 100mg/ml are also available. There is some research that proves that Methylcobalamin repairs damage to nerves caused by B12 deficiency. Methylcobalamin is then converted to Adenosylcobalamin.
Adenosylcobalamin is not widely available though it can be produced artificially.
What's the difference between B12 Deficiency and Pernicious Anaemia ?
Vitamin B12 deficiency can be caused by poor diet (strict vegans who wash root vegetables are an at risk group) or due to Gastric Atrophy where the lining of the stomach becomes thinner and no longer produces sufficient gastric juices needed for the proper absorption of food. Infections caused by Helicobacter pylori are one cause of Gastric Atrophy.
Pernicious Anaemia is caused by either the patient not producing Intrinsic Factor that is needed to bind with vitamin B12 from food before it enters the blood stream and makes healthy red blood cells or the Intrinsic Factor is being produced but is then destroyed by antibodies to the Intrinsic Factor that have also been made by the patient – auto-immune Pernicious Anaemia. Because the patient is either not producing Intrinsic Factor or is destroying the Intrinsic Factor that has been produced the B12 cannot be absorbed from any animal product that the patient has eaten. And because he or she is unable to extract the B12 the end result is vitamin B12 deficiency caused by Pernicious Anaemia.
How do you get Pernicious Anaemia ?
Pernicious Anaemia is caused by the patient being unable to extract vitamin B12 from food.
This is because the Intrinsic Factor that is needed to bind to the B12 before it is sent into the blood system is either not being produced or is being ‘killed off’ by antibodies that destroy any Intrinsic Factor that has been produced – the patient produced anti-intrinsic factor antibodies. Because the patient unwittingly produces these antibodies he or she is interfering with the autoimmune system. Pernicious Anaemia is an Autoimmune Disease just like Diabetes Mellitus Type 1, Hashimoto’s Thyroiditis, Lupus Erythematosus and Psoriasis. Many of our members not only suffer from Pernicious Anaemia but also have other autoimmune diseases.
There is a strong family link in Pernicious Anaemia. One of the most reliable indicators that a patient has Pernicious Anaemia is whether he or she has a family history of the disease.
How is Pernicious Anaemia treated ?
Treatment is by replacement therapy of vitamin B12 usually by injections. There are many other types of treatments available including sub-lingual sprays, drops and lozenges along with skin patches and nasal sprays.
Simply swallowing B12 tablets bought from health food shops will not work as generally they are not strong enough. There is some evidence that people are able to absorb some B12 from tablets that are very highly concentrates of B12. You should always consult your doctor before trying any other replacement therapy to the one prescribed.
The most common complaint by members of the Pernicious Anaemia Society is that the treatment regimes in place around the world do not take into consideration the individual needs of the patient. Some of our members need much more frequent treatment than others. The society is currently working with clinical researchers to find out why this is so.
What are the symptoms of Pernicious Anaemia ?
The usual symptoms associated with Pernicious Anaemia were unspecific and vague. Over the years the Pernicious Anaemia Society has produced more condition specific list of symptoms.
One of the old, less specific symptoms was shortage of breath that could be an indicator of a great many diseases. Over the years The Sighs has replaced the less specific ‘shortage of breath’ as being more descriptive of our members’ experience. Similarly ‘the strange tiredness’ is much more suggestive of Pernicious Anaemia than the older ‘tiredness & lethargy’.
Patients will experience all, some or a few of the symptoms but to various degrees of severity. We don’t know why this is but it is probably due to the individual’s physiology.
A full list of symptoms can be found here
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