Frequently Asked Questions

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 is Vitamin B12 ?
Vitamin B12 was first identified in 1926. It is the only vitamin to have at its core a metallic atom – cobalt.

It is the most chemically complex of all the vitamins. It is found in all animal products – meat, fish, cheese, butter, milk, shellfish, offal etc. Liver has high concentrations of B12 but surprisingly isn’t the best source, Fish and dairy products ‘give up’ B12 more readily than red meat. Vitamin B12 is essential in producing healthy red blood cells that carry oxygen around the body.

Year discovered Vitamin Food source
1910 Vitamin B1 (Thiamine) Rice bran
1913 Vitamin A (Retinol) Cod liver oil
1920 Vitamin C (Ascorbic acid) Citrus and most fresh food
1920 Vitamin D (Calciferol) Cod liver oil
1920 Vitamin B2 (Riboflavin) Meat and eggs
1922 Vitamin E (Tocpherol) Wheat germ oil/Unrefined vegetable oils
1926 Vitamin B12 (Cobalamins) Liver/Eggs/Animal products
1929 Vitamin K1 (Phylloquinone) Green leafy vegetables
1931 Vitamin B5 (Pantothenic acid) Meat/Whole grains – Many foods
1931 Vitamin B7 (Biotins) Meat/Dairy products/Eggs
1934 Vitamin B6 (Pyridoxine) Meat/Dairy products
1936 Vitamin B3 (Niacin) Meat/Eggs/Grain
1941 Vitamin B9 (Folic acid) Leafy green vegetables

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.

I've consulted my GP, but I'm still worried - what next ?
This is an extract from the full article available to members.

So you’ve consulted with your GP, but they havn’t been able to put your mind at rest. What do you do now?

You can ask your GP to refer you for an appointment with a consultant haematologist.

Can children have Pernicious Anaemia ?
Yes. In some parts of Canada all new-born babies are screened for B12 deficiency.
Can i treat myself at home ?
The simple answer is yes.

Injections can be self-administered but you should only do this with your doctor’s consent and only after receiving instructions on how to do it safely from an appropriate medical professional.

Does Pernicious Anaemia only affect the elderly ?
No – there is a high prevalence of PA among elderly people because of various reasons. The average age that our members were diagnosed is 45.
Does Pernicious Anaemia run in families ?
Yes – a family history of PA is a strong indicator that another family member will develop the disease.
How do you get Anaemia ?
Haemoglobin forms part of the red blood cells that transport oxygen around the body. The lack of haemoglobin could be due to:

– Low levels of iron due to poor diet or absorption issues

– Heavy bleeding including heavy menstruation

– Low levels of vitamin B12.

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.

Is Pernicious Anaemia linked to other diseases ?
Yes – Hypothyroidism, Tinnitus, Psoriasis, Rheumatoid Arthritis are all common co-existing conditions with Pernicious Anaemia.
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

What is Anaemia ?
Anaemia is derived from the Greek anaemia from an ‘without’ and haima ‘blood’ – so anaemia literally means ‘lack of blood’.

Today it is used by doctors to describe a reduction in the amount of haemoglobin in the blood. Haemoglobin is what carries oxygen in the blood. If you don’t have much haemoglobin then you will not be able to transport oxygen to wherever it is needed – which is just about everywhere in your body. There are many different causes of anaemia. It could be due to loss of blood from an accident or chronic bleeding due to an ulcer or haemorrhoids – haemorrhagic anaemia. It could be due to lack of iron which is needed to produce the haemoglobin – iron-deficiency anaemia. Another cause of anaemia is when red blood cells are destroyed (red blood cells contain the haemoglobin) by toxic chemicals, parasites (as in malaria) or conditions such as thalassaemia and sickle-cell anaemia. Another cause of anaemia is where the production of red blood cells is impaired as in leukaemia (when red blood cells in bone marrow are suppressed) or Pernicious Anaemia – haemolytic anaemias. Failing to produce red blood cells at all is another cause of anaemia – aplastic anaemia. So anaemia is caused by a lack of haemoglobin that transports oxygen around the body and the lack of haemoglobin could be due to one or more of several reasons.

What is the difference between Pernicious Anemia and Pernicious Anaemia ?
The correct way to spell anaemia will depend on where you live. In the U.S.A. it is spelled anemia whilst in the U.K. it is spelled with another a – anaemia.

Both spellings mean the same thing where it is used to describe a lack of haemoglobin in the blood (or hemoglobin if you live in the U.S.A.).

Why did it take so long for me to be diagnosed ?
There are three main reasons.

Firstly, doctors don’t specifically look for B12 deficiency and all too often believe that the symptoms patients complain of are associated with other diseases. Where doctors actively look for B12 deficiency they diagnose many more cases of B12 deficiency than doctors who aren’t actively looking for the deficiency.

Secondly there are problems associated with the current test used to measure the amount of B12 in the patient’s blood.

Thirdly, the test used to find out if the B12 deficiency is caused by Pernicious Anaemia also appears to be thoroughly flawed.

Why do I still feel so tired and exhausted and suffer from ‘the sighs’ even though I am receiving B12 injections ?
The honest answer is that nobody really knows. Many members receive much more frequent injections than those normally prescribed, while other use other forms of supplementation such as nasal sprays or sub-lingual lozenges and report that more frequent replacement therapy helps them. Others use further supplementation but still have the symptoms. You have to remember that there is no cure for pernicious anaemia – all doctors can do is to treat the end result which is low levels of vitamin B12.
Will changing my diet help correct my B12 Deficiency ?
If you are a vegan or strict vegetarian and do not take vitamin supplements then yes, any B12 deficiency could be addressed by eating animal products.

However, if your B12 deficiency is caused by Pernicious Anaemia then the only change in diet that has found to work is to eat around 1kg of preferably raw liver every day. Liquidised Raw liver has also been used in the past to treat Pernicious Anaemia.

Children’s FAQ

Can young people get Pernicious Anaemia ?
Yes. Our youngest member joined when she was eleven months and her brother joined when he was four years old.

We simply don’t know what percentage of young people have the disease because the symptoms are often associated with other diseases. Canada has now started screening all new-borns for Vitamin B12 deficiency. Most of our members were diagnosed when in their forties.

Young people face all manner of problems if they have Pernicious Anaemia as it affects their social life and their school and college work. We have special leaflets written for young patients with Pernicious Anaemia and for the parents of children with Pernicious Anaemia.

I get tired in the afternoon at school. What can I do ?
Make sure that you tell an adult who should inform your teachers about your medical condition.

The school should be able to help you to study by changing the time of your lessons.

I have my injections but still feel tired. What can I do ?
You should tell an adult who should take you back to your doctor.

Your doctor may decide that you need more injections.

What does vitamin B12 do ? What else should I know ?
It helps you to make healthy red blood cells.

Without Vitamin B12 you won’t have normal red blood cells. That’s why your injections are so important. When you have injections of B12 you once again produce healthy red blood cells.

What is Pernicious Anaemia ?
Most children will have in their tummy a substance called Intrinsic Factor. Intrinsic Factor extracts a very important vitamin from food that you have eaten. The important vitamin is Vitamin B12.

Vitamin B12 is found in fish, meat, butter, milk, cheese and eggs. No matter how much of these foods you eat you won’t be able to get the B12 from them because you don’t have the Intrinsic Factor that extracts the B12. That’s why you need to get B12 from somewhere else like injections or sprays.

Why do I feel tired ?
Healthy red blood cells carry oxygen around your body.

Oxygen is needed to make muscles work properly. Oxygen is also needed by the brain. Without enough healthy red blood cells you won’t have enough oxygen in your blood. Not enough oxygen means you will feel tired.

Why don’t I have Intrinsic Factor?
It could be that either you aren’t making any Intrinsic Factor or, more likely you make the Intrinsic Factor and then you destroy it by producing antibodies that kill off the intrinsic factor.

Doctors don’t yet know why your body would want to do this. There are other medical conditions where the body destroys things that it has made. These medical conditions are called auto-immune diseases.

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