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
- Malnutrition
- Eating disorders – anorexia – bulimia
- Inadequate diet
- Vegetarianism / veganism
- Malabsorption syndromes
- Alcoholism
- Crohn’s disease
- Coeliac disease (gluten enteropathy)
- Dipphyllobothrium infection
- blind loop syndrome
- diverticulosis
- 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
- Antacids
- 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
Increased demands
- Chronic Hemoltic anaemia
- Hyperthroidism
- Multiple myeloma
- Myelopproliferative disorders
- Neoplasms
- Pregnancy
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.
Best wishes
Tracey
www.b12info.com
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
Have you seen our B12 for Life pin?
I don’t have PA but I have b12 deficiency and get my injections every 3 mths
Hi Vida, do you feel ok on 3 monthly? If not I would suggest talking to your doctor about increasing the frequency. Best wishes Tracey
I also have fibromyalgia so thought my fibro fog was getting a lot worse , i took a list of some of my symptoms to the Dr , had a blood test and my b12 was 103 and got sent tablets , I tried to say I take meds for gerd but it fell on deaf ears, finished the month’s supply of tablets and now nothing ….
Dear Lorna,
Your B12 is very low and you need injections.
Your GP is not following guidance, please see point 6 here: https://www.b12info.com/blog/what-to-do-next/
You need to go back to the GP, nurse or Practice manager and get them to read and understand NICE.
I do offer personalised help should you require this, please see this link for more information; https://www.b12info.com/blog/contact-me
Best wishes
Tracey
I have pernicious anemia with parental antibodies and i really can not seem to get help from anyone who know how to treat it properly. I also have hasimotos hypothyroidism and even though i take all my tabkets and get regular injection i am tired so often and can not get my weight or sugar cravings under control..Any help would be great fully appreciated Thank you.regards Caroline
Ps my last b12 reading was over 1400
Carolina, how often do you have B12 injections? Do you buy your own from the chemist (you can in your country) or do you wait on the doctor? Please see this page for all the basics which you doctor may be unaware of; https://www.b12info.com/blog/what-to-do-next/
I have the same Under active Thyroid & pernicious anaemia. I have injections every 3mnths or so depending how I feel. My Dr just gives them to me.
I follow a good diet. No crap food no soft drink especially coke.
I have been on B12 injections for 3 years and just diagnosed with Subacute combined degeneration. I have them 8 weekly but am struggling with balance and confusion pretty much all the time and they say I cannot have them more regularly than 8 weeks. They do at least stop the tiredness and eas the symptoms for about 4 weeks before being on a downward spiral for next 4 weeks. I can no longer work but receive nothing from benefits. I am mid 40s and not optimistic about future at all.
My neighbour, a doctor, informed me that his training on vitamins was a day and a half, this covered all vitamins, leaving little time to fully understand the complex issues involved with deficiencies. A holistic view of the patient would be more practical for determining their needs and not treating patients in a standard manner according to a medical text book manual. I ran up against a brick wall with the medical profession, once I eventually took the initiative and began to self-inject B12, I was able to work out the best regime for my personal situation.