Frequently Asked Questions

Pernicious Anaemia is an autoimmune disease. People with Pernicious Anaemia produce Intrinsic Factor Antibodies. These antibodies attack any Intrinsic Factor that has been produced by the Parietal Cells and render them useless. And because the patient now has no functioning Intrinsic Factor he or she cannot extract vitamin B12 from any animal product that has been swallowed. As a consequence of not having any functioning Intrinsic Factor the patient becomes deficient in B12. Read more

Common symptoms include extreme fatigue, weakness, shortness of breath, brain fog, tingling, numbness, beefy tongue, depression, irritability, mood swings, burning feet, dizzyness, loss of appetite, problems concentrating.

A full list of symptoms can be found here

The test used to diagnose Pernicious Anaemia is the anti-intrinsic factor antibody test (IFAB).
If the test is positive, then it is 95% certain that the patient will have Pernicious Anaemia. However, it will identify only 50% – 70% of patients with the antibodies. So, if you test positive for the antibody you will almost certainly have Pernicious Anaemia. But is it is negative it does NOT rule our Pernicious Anaemia.
Read more

Vitamin B12 injections are still the preferred method of treating Pernicious Anaemia. There are many other types of treatments available including sub-lingual sprays, drops and lozenges along with skin patches and nasal sprays but the efficacy and cost–effectiveness of oral treatment in wider population-based settings has yet to be established.

Frequency
For people with neurological involvement:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
For people with no neurological involvement:
Initially administer hydroxocobalamin 1 mg intramuscularly three times a week for 2 weeks, then administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.

It is difficult to say as it varies greatly between patients. Some feel immediate improvement, for others it takes a few months and sometimes even longer (especially when neurological symptoms are more severe and/or the symptoms were present for a long time before treatment started)

Vitamin B12 is an essential vitamin necessary for the health of the nerve tissues, the immune system, the cardio-vascular system, the digestive system, the production of DNA, and the formation of healthy red blood cells. It is found in all animal products – meat, fish, dairy and eggs.

Vitamin B12 deficiency can be dietary-related (vegans and strict vegetarians) or non-dietary related for which there are several causes. Pernicious Anaemia is the most common cause of a vitamin B12 deficiency.

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 or the Intrinsic Factor is being produced but is then destroyed by antibodies to the Intrinsic Factor – 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 food.
Read more

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 or the Intrinsic Factor is being produced but is then destroyed by antibodies to the Intrinsic Factor – 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 food.
Read more

Yes, quite a few of our members do so. 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.

Yes. Our youngest member joined when she was eleven months and her brother joined when he was four years old. We have leaflets on Juvenile Pernicious Anaemia on our Resources page:
leaflet for parents
leaflet for patients

Yes, Pernicious Anaemia can result in a variety of neuropsychiatric symptoms such as depression, anxiety, mood swings, memory problems, irritability and even psychosis.

No – there is a high prevalence of PA among elderly people because of various reasons but the average age our members were diagnosed is 45 and 15% of patients with a B12 deficiency is under 25 years old.

Yes – a family history of PA is a strong indicator that another family member will develop the disease. About 20 percent of family members of Pernicious Anaemia patients have the same disease.

Yes – Pernicious anemia is often found together with other autoimmune disorders, like type 1 diabetes, hypoparathyroidism, Hashimoto’s thyroiditis, Addison’s disease, vitiligo, and Graves’ disease.

Vitamin B12 plays an important role in the production of white blood cells, and white blood cells are essential for a healthy immune system, so a B12 deficiency can lower your immune system.

If left untreated, Pernicious Anaemia will result in severe anaemia and would ultimately be fatal (which is what pernicious means). Beside anaemia, Pernicious Anaemia usually leads to neurological and neuro-psychiatric symptoms which will become increasingly severe over time leading to permanent nerve damage.

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 symptoms. The Pernicious Anaemia Society is working with clinicians and clinical researchers to promote research into why some patients need more injections than others and why symptoms can remain even when treated. If diagnosis and treatment has been delayed for a long time, some symptoms can become permanent due to neurological damage.

Of course there is also always a possibility that there is something else beside PA causing the symptoms that you could discuss with your doctor. Among those most reported are thyroid disease, folate deficiency and iron deficiency.

There are three main reasons.

Firstly, many doctors don’t specifically look for B12 deficiency and all too often believe that the symptoms patients complain of are associated with other diseases.

Secondly there are problems associated with the current test used to measure the amount of B12 in the patient’s blood and even with a normal value a deficiency can not be ruled out.

Thirdly, the test used to find out if the B12 deficiency is caused by Pernicious Anaemia is very insensitive and misses many cases.

If you are a vegan or strict vegetarian and do not take vitamin supplements then yes, your B12 deficiency could be addressed by eating animal products.

However, if your B12 deficiency is caused by Pernicious Anaemia then you cannot absorb B12 from food and changing your diet will not have any effect.

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 or red blood cells in the blood. Haemoglobin is what carries oxygen in the blood. If you don’t have much haemoglobin or enough red blood cells 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. One of the causes for the impaired production of red blood cells is a vitamin B12 deficiency.