Pernicious Anaemia/B12 Deficiency Support Group - Page

10/15/2026

A must see documentary. It helps to explain to family members what Pernicious Anaemia is and some of the symptoms that develop. Diagnosing and treating vitamin B12 deficiency with Sally Pacholok. First participant is a doctor with undiagnosed B12 Deficiency.

10/13/2026

Poster is A1 but information taken from my file.

Organs and systems affected by B12 Deficiency – Snippets of Information #2

B12 Deficiency affects the nervous system (the brain and spinal cord) the bone marrow /blood, red blood cell production, the digestive tract (stomach) and small intestine.

It also affects the liver as the liver is the primary storage organ for B12, holding a multi year reserve. Low B12 and Non Alcoholic Fatty liver disease (NAFLD) frequently occur together in a bi-directional and complex relationship.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10025356/

The spleen can become enlarged resulting in what is called a splenomegaly. This reverses once on treatment.
Spleen Congestion (Sequestration): The spleen acts as the body's blood filter, filtering out old or malformed blood cells. Because a B12 deficiency causes megaloblastic anemia, the bone marrow produces abnormally large, fragile, and misshapen red blood cells (macrocytes). As these oversized cells travel through the circulatory system, they get trapped and accumulate inside the narrow pathways of the spleen. Over time, this intense filtering load causes the spleen to become congested and swell.
https://europepmc.org/article/pmc/9017571

The Pancreas can also be affected although B12 deficiency does not damage the pancreas, the pancreas can be a cause of B12 deficiency. The relationship between the pancreas and B12 deficiency is one of absorption rather than the deficiency damaging pancreas.
The Pancreas as a Cause of Deficiency: To absorb vitamin B12, your body goes through a multi-step digestive process. In the stomach, B12 binds to a protective protein called haptocorrin. To later bind to "intrinsic factor" (which allows the small intestine to absorb it), the pancreas must secrete digestive enzymes to break down that initial protective protein. If someone has exocrine pancreatic insufficiency (EPI), chronic pancreatitis, or cystic fibrosis, their pancreas doesn't make these enzymes. As a result, B12 stays trapped and cannot be absorbed, leading to a deficiency.
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/653055

The lungs can also be affected. The anaemia can cause shortness of breath. Respiratory Muscle Weakness: Severe B12 deficiency can lead to neurological and neuromuscular dysfunction, occasionally causing weakness in the respiratory muscles and a decrease in forced vital capacity (restrictive lung pattern.
https://www.neurology.org/doi/10.1212/WNL.0000000000203925

Asthma and Airway Inflammation. Vitamin B12 is essential for nerve health. A deficiency can result in sensory neuropathy of the upper airway or laryngeal irritation, contributing to unexplained chronic coughs.
https://www.sciencedirect.com/science/article/pii/S0002916523022050

Emerging genetic and Mendelian randomization analyses have associated vitamin B12 deficiency anemia with a slightly higher statistical risk of developing pulmonary fibrosis or idiopathic pulmonary fibrosis.
https://www.nature.com/articles/s41598-025-13368-7

Prolonged B12 Deficiency without treatment can also damage the heart.
A severe or prolonged B12 deficiency can place a great deal of stress on the cardiovascular system through two distinct pathways:
• Anemia-Induced Heart Strain: Because B12 is crucial for making red blood cells, a deficiency causes megaloblastic anemia. With fewer healthy red blood cells to transport oxygen, the heart must pump significantly faster and harder to deliver enough oxygen to your tissues. This can trigger heart palpitations, a chronically rapid heart rate (tachycardia), chest pain, and if left untreated, it can eventually lead to heart failure.
https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/complications/

10/09/2026

Happy Thanksgiving Canada!!

10/07/2026

Only photo is A1 content.

JUST SOME SNIPPETS OF INFORMATION
1. Anaemia does not have to be present in B12 Deficiency. Our doctors still look at a complete blood count for signs of anaemia, rather than listening to the patient. By the time anaemia develops, B12 deficiency is well advanced.

2. Functional B12 deficiency can have normal serum B12 levels. If you display symptoms of B12 Deficiency and your serum B12 level is normal, ask to have Methylmalonic Acid (MMA) and Homocysteine tested as they can determine a B12 deficiency when serum B12 is normal. Always have folate tested as well. Have a look at MMA and Homocysteine discussions further down the page.

3. Oral B12 is not a replacement for B12 injections. If you cannot absorb B12 from food, oral B12, including sublingual, will not heal neurological symptoms caused by B12 Deficiency.

4. If you have Pernicious Anaemia or B12 malabsorption, B12 injections are for life. Do not let a doctor stop your injections based on a high serum B12 level. It is normal to have a high serum B12 level when receiving therapeutic treatment for B12 deficiency. “Cobalamin and holo-transcobalamin II levels are uninformative because they rise with cobalamin influx regardless of therapeutic effectiveness, the extent varying only with the timing in relation to injection”. Carmel How I treat Vitamin B12 Deficiency.

5. High B12 levels, when on injections, are not toxic and to be expected. There is no known research to support any cases of B12 toxicity.

6. Why do I feel worse since starting injections. Recovery from PA/B12 Deficiency is not a smooth process. It is very much up and down. You will have good days and bad days and in the beginning you may experience what we call reversing out symptoms. You will feel aches and pains that you did not think you had but they were there all along, just not as noticeable to you. B12 deficiency is a demyelinating condition which means the deficiency erodes the myelin sheath. The Myelin Sheath is the fatty insulation that covers the nerves. Whenever erosion occurs, it exposes a nerve and that nerve dies off. B12 injections can regenerate nerves and bring them back to life so when you start on injections and notice a return or a worsening of symptoms, it is most likely those nerves, that died off from erosion of the myelin sheath, are waking up and they are sore. You may even notice new symptoms you thought you did not have before. Have a look at symptoms of B12 Deficiency further down the page.

09/28/2026

Pernicious Anaemia and B12 Deficiency Awareness Month has come to a close for September 2026. How did we do. I think it was successful because from August 31 2026 to September 27, 2026, there were 1, 998,487 views of this Page and 92.1% were non followers, which means this page may have reached people who knew little about B12. . I am hoping that perhaps we were able to help some of those non followers who may not have known what tests to have done or perhaps knew nothing about Pernicious Anaemia other than what their doctor told them which may have not been very much information.
Key points to remember:
If you suspect you are deficient in B12, insist on serum B12 test, MMA and Homocysteine tests. Do not ask for Active B12 because there are too many grey areas with that test wherein doctors can deny treatment.
For those in the UK and are placed on maintenance dosage of one injection every 3 months, if you find your symptoms returning well before the 3 months are up, ask to have injections increased. The purpose of injections is to heal symptoms and a return of symptoms means you need more B12.
Join a facebook group for support. Facebook groups are now being recognized as Patient Support Groups and can be a huge source of information.

Thank you to everyone who liked, shared and commented. That truly helped. Wishing every one of you a positive journey forward until next year. Slowly we are getting the information out there. I do see changes forthcoming, perhaps not this year but hopefully next year.
Pat Kornic – Pernicious Anaemia B12 Deficiency Support Group on Facebook.

09/24/2026

I don’t know who wrote this but it is brilliant and so true. I also hope the link takes you to the video.

Author is Julie Wichlin - PAS Support Group Co ordinator for the USA.

Listen and make your own on Suno.

09/23/2026

Just a few more symptoms of B12 deficiency.

09/21/2026

This is not A1 content

Let's not forget the children. There needs to be more awareness about B12 Deficiency in children. Many doctors do not believe that a child can develop B12 deficiency and will test for everything else except B12. If you suspect your child is deficient in B12, ask for these 4 tests, Serum B12, Folate, MMA and Homocysteine.

09/19/2026

This is not A1 content. Just some information.

Recovery from Pernicious Anaemia or B12 Deficiency is not an overnight process nor is it just a few injections scattered here and there. B12 is in every cell of the body and there are millions of cells in your body all requiring B12. A deficiency in B12 means it can take a very long time to replenish the B12 that is required in each cell. So give your body time to recover. Neurological and neuropsychiatric symptoms take the longest time to heal. Haematology symptoms take the shortest time to heal. B12 does have the capability to regenerate or restart nerves that have died and it is this "startup" process of nerves regenerating that can make neurological or neuropsychiatric symptoms feel worse. You just have to ride it out....it will improve.

09/17/2026

B12 Awareness Day will soon be here. Can I ask people to post their stories of their journey on their own page, towards diagnosis and treatment of PA and or B12 Deficiency. If in the UK, use hashtags and hashtag your MP.
In Canada, , hashtag your MP, your MPP, the Premier of your Province, .
In the United States, hashtag , and anyone else in your State to bring awareness to your journey to get a diagnosis and the proper treatment. Make it known as well about the shortage of hydroxocobalamin in the United States.