Patients with a diagnosis of PA (pernicious anaemia) do not experience a more excruciating pain or a different kind of damage than someone who has a diagnosis of B12 deficiency due to another cause.
Both B12 deficiency and PA cause damage to the protective fatty coating (myelin) of the nerves. PA patients are often thought to have a ‘worse’ form of the condition but this is not true.
Diagnosis and treatment of B12 deficiency often proves to be a very difficult challenge for the patient but in some areas a diagnosis of PA (a positive IFAB test) can represent a ‘golden ticket’ to treatment, leaving others with identical symptoms, but no confirmed diagnosis of PA, without any treatment at all. It is important to note that “A negative Intrinsic Factor antibody result does not exclude the diagnosis of PA as only 60% of patients with PA will have this antibody”.
PA and B12 deficiency (unless it is caused purely by dietary lack) are caused due to an inability to absorb B12 from food and therefore B12 injections are required to bypass the stomach.
There would be uproar if our doctors only used plaster casts for a broken arms if the cause were a skiing accident whilst treating everyone else with a broken arm with a sticking plaster. This scenario is what’s happening far too regularly with B12 deficiency and the situation is down to lack of education and correct, clear information about this condition.
This condition can have a devastating effect whatever the cause. If you choose a diet which avoids animal products then you should supplement with B12 in order to access this vital nutrient. Of course vegetarians and vegans might also be at risk due to a co existing cause so it is advisable to familiarise yourself with these in case they too apply to you.
You’ll see there are so many more causes to consider as well as PA;
- Decreased stomach acid
- Atrophic gastritis
- Autoimmune pernicious anaemia
- Helicobacter pylori
- Gastrectomy, partial or complete
- Gastric bypass surgery (weight loss)
- Intestinal resection
- Partial or complete ileectomy
- Gastrointestinal neoplasms
- Eating disorders – anorexia – bulimia
- Inadequate diet
- Vegetarianism / veganism
- Malabsorption syndromes
- Crohn’s disease
- Coeliac disease (gluten enteropathy)
- Dipphyllobothrium infection
- blind loop syndrome
- inflammatory bowel disease
- small bowel overgrowth
- tropical sprue
- gastric irradiation
- ileal irradiation (bladder,cervix, uterus,prostate)
- Inborn errors of B12 metabolism
- Transcobalamin II deficiency
- Pancreatic exocrine insufficiency & Chronic pancreatitis
- Imerslund Gräesbeck syndrome
- Zollinger – Ellison Syndrome
- Bacterial overgrowth (small bowel)
- Fish tapeworm
- Advanced liver disease
Drug induced causes – Please note; this list is not exhaustive
- Colchicine (treatment of gout)
- H2 Blockers (Zantac, Tagamet, Pepcid)
- Metformin – Diabetes drug (Glucophage)
- PPI’s – Proton pump inhibitors (Omeprazole, Nexium, Prevacid, Protonix)
- Nitrous oxide anaesthesia
- Nitrous oxide recreational abuse (Laughing gas / Whippets / Hippy crack)
- Mycifradin sulphate (Neomycin) antibiotic
- Para aminosalicylates antibiotic
- Phenytoin (Dilantin) – anti-epileptic
- Potassium chloride (K-Dur)
- Cholestyramine (Questran)
- Chemotherapy and radiation treatment
- Chronic Hemoltic anaemia
- Multiple myeloma
- Myelopproliferative disorders
Some patients may never find out the cause of their condition, this does not mean that they should be denied B12 injections which are, safe, inexpensive and the most efficient treatment for their deficiency.
Our doctors may only have learnt about pernicious anaemia and not the wider picture of B12 deficiency during their training. My own GP said his tuition on the subject lasted around half an hour. This partial information can lead to our GPs thinking that B12 deficient patients without a confirmed diagnosis of PA do not require treatment by injection. Some mistakenly believe that a patient can use oral 50mcg cyanocobalamin tablets to correct their deficiency despite an inability to absorb B12 from food. Obviously this ignorance can lead to serious consequences.
Please see below;
Even when the patient receiving the letter above reported that they do eat meat fish eggs and dairy they were still incorrectly told that they didn’t require further B12 injections.
Everybody with B12 deficiency is affected differently and has a different degree of damage and severity of symptoms, and so an individual requirement and frequency of treatment. Often the missing link in treatment is proper communication with the patient. Listening to how their condition affects them rather than restricting treatment according to the ink on paper detailing blood results would have a profoundly positive effect.
Imagine how the advice celebrity GP, Dr Hilary gives, makes this patient feel?
He states that; if her blood levels are ok she ‘doesn’t need injections now’ but that her “long standing forgetfulness may not be reversible”. Oh dear.
Our GP’s training is incomplete, they have not been given all the information required to treat patients with B12 deficiency correctly. Consequently both them and us are being done a disservice.
Their education needs to include the simple fact that if a patient is B12 deficient and their diet includes animal products, then they will need injections for the best chance for nerves to heal – whatever the cause. (Surely it goes without saying that if someone choosing a vegan diet is seriously ill due to lack of B12 they they should not be denied the right to injections in order to facilitate a swift recovery).
I know that many reading this will state that very high dose sublingual tablets are as good as injections, but the fact is they don’t suit everyone, they are not available to everyone and your doctor may be unaware of their existence.
There is much written about 1000mcg oral cyanocobalamin being a good substitute for injections – that a patient will absorb 1% by passive diffusion. (Too low to chance?) However these journals focus on serum levels and not how the patient is feeling. Why limit the chance of recovery in this way when the injections work perfectly?
It would be helpful if patients were treated as individuals, as per their symptoms, rather than the idea that one cause of this condition is worse than another.
If you are a healthcare professional reading this, please see the homepage of the website for more information about the issues that face patients.
Ref; Published: 15 March 2018 Authors:Wang H, Li L, Qin L, Song Y, Vidal-Alaball J, Liu T http://www.cochrane.org/CD004655/ENDOC_oral-vitamin-b12-compared-intramuscular-vitamin-b12-vitamin-b12-deficiency
P.s. Thank you to all who have signed and shared the OTC petition – we are at nearly 60,000 signatures! You are making a difference and I continue to work toward this goal.
Have you seen our B12 for Life pin?