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Book Review: Could It Be B12?


Could it be B12 book cover

An Epidemic of Misdiagnoses by Sally M Pacholok RN, BSN and Jeffrey Stuart DO, Word Dancer Press 2011

This book was first published some years ago and has been updated in this second edition. The authors are Sally Pacholok, who is an emergency room nurse, and her husband, Jeffrey Stuart, an emergency room physician. The book is extensively referenced and has detailed sections for health professionals.

 

Sally Pacholok's story

Sally herself suffered from pernicious anaemia (an autoimmune form of vitamin B12 deficiency) which went undiagnosed for many years in spite of her seeing several doctors, having a variety of tests and being knowledgeable and proactive. Her first intimation that there might be something wrong came with a pre-employment medical blood test when she was just 19 years old which showed abnormally large red blood cells (macrocytosis). Since she was not eating vegetables at the time, the doctor advised including those in her diet considering that the test results were due to her low folic acid intake. 

Two years later in nursing school a medical text alerted her to the possible causes of macrocytosis as including folic acid and/or vitamin B12 deficiency and she persuaded a colleague to run some blood tests for her. On talking to her parents around this time, her father revealed that her grandfather had suffered with pernicious anaemia. When her B12 test results came back low, she requested a referral to a haematologist who dismissed the idea of vitamin B12 deficiency on the basis of her age and in his notes (which she later managed to read) suggested she was a hysterical young woman with an imaginary disease. Only after persisting and insisting did she eventually receive a diagnosis of juvenile pernicious anaemia. 

So that, in spite of having a family history of pernicious anaemia and handing a specialist her diagnosis he had nearly missed it. Sally considers now that if she hadn’t been a nurse, or assertive, or known there was a family history of the disorder, then she would have at best been injured by her deficiency and possibly have died. This episode led her to question how typical her experience might be, and how many others suffering with vitamin B12 deficiency may be going undiagnosed. Over two decades of personal enquiry followed including research on the patients that both she and her husband were seeing in the emergency room. 

Initially excited by the discovery that there was a simple and inexpensive cure for so many diverse and serious complaints, Sally tried to educate the physicians she worked with about vitamin B12 deficiency. This ultimately led to her being forced to sign a document effectively stating that she would drop the subject or lose her job. 

Although she considers that part of the problem was that the information was coming from a nurse, her physician husband encountered the same ‘impenetrable wall of apathy’ too. And so things continued until one day Sally had to discharge a woman who had a long history of various complaints which could all be attributed to vitamin B12 deficiency and which every doctor the patient had seen had failed to test for or diagnose. Giving this woman a large bill and possible a death sentence, she determined to write this book to raise awareness of the issue.

Although the authors state that the response from the public to the first edition of Could it be B12? has been overwhelming, that of the medical community has been one of ‘apathy or even outright hostility’. Sadly this is typical with the cause of scurvy taking many decades to be widely accepted and preventive measures widely instituted!

 

What is vitamin B12?

We need 13 different vitamins to stay alive and healthy and whilst fat soluble vitamins can be stored, water soluble vitamins such as vitamin B need replenishing every day. If daily supplies dwindle the individual will first become marginally deficient and then will eventually suffer with a deficiency disease. 

Although vitamin B12 acts in many ways like other vitamins, in other ways it is unique. One difference is that it is the only vitamin that contains a trace element - cobalt - why gives rise to the scientific name of cobalamin. Another difference is that it is produced in the intestines of animals and as such is the only vitamin that can’t be obtained from plants or sunlight. In order to obtain sufficient intake, you need to eat meat, fish, poultry, eggs, dairy products or foods fortified with vitamin B12.

Daily requirements are estimated to be between 2 and 4 mcg/day and the majority of vitamin B12 deficient people consume plenty, but either can’t absorb or use what they ingest. Vitamin B12 also has a complex pathway – more complex than that for any other vitamin (see diagram below) - and blocks at any level can cause deficiency. 

Vitamin B12 absorption cycle

How common is B12 deficiency?

Contrary to popular opinion, vitamin B12 deficiency is common - not just in seniors or the middle-aged, but among young people. One in five people over 60 years of age, and (according to one study) 40% of seniors with severe mental or physical problems, are suffering with vitamin B12 deficiency. Furthermore, thousands of young people have borderline levels which compromise their brain function and millions of others have been labelled with Alzheimer’s disease, multiple sclerosis, Parkinson’s disease, autism, learning disabilities, depression, bipolar disorder, vision loss, schizophrenia, diabetic neuropathy and other severe and incurable disorders.

In 2009 the US Centers for Disease Control issued a report stating that 1 in every 31 people over the age of 50 is vitamin B12 deficient. Although this proportion is much smaller than that suggested by the authors' research, they regard this acknowledgement of the widespread scale of the problem as a step in the right direction. 

Since the book’s initial publication, the authors have made contact with the UK physician, Dr Joseph Chandy. He has successfully treated thousands of patients and has found that 18% of his patients exhibit symptoms consistent with B12 deficiency and - more importantly - benefit from vitamin B12 therapy. Dr Chandy’s assistant, Dr Hugo Minney PhD, authors the B12 Deficiency Patient Support Group (www.B12d.org) which gives valuable advice on the subject.

The reason most studies underestimate the prevalence of deficiency is because many B12 deficient people have ‘normal’ blood serum vitamin B12 levels. Tufts University researchers analysing the large scale Framingham Offspring Study found nearly 40% of those between 26 and 38 years of age had plasma levels in the low normal range, nearly 9% had frank deficiency and 16% exhibited near-deficiency. That is two-thirds of the younger adult population have overt or borderline vitamin B12 deficiency! The study also found that vitamin B12 deficiency was as common in the younger participants as in the elderly. 

In addition, over 80% of long-term vegans who do not adequately supplement their diets and over 50% of vegetarians are vitamin B12 deficient. When people present with many symptoms and care falls under different specialists, the diagnosis can fall through the cracks as each specialist thinks that someone else has screened the patient for vitamin B12 deficiency. 

Many of the symptoms of vitamin B12 deficiency including unsteadiness, frequent falling, confusion, poor memory, osteoporosis, and numbness are all often dismissed as being ‘normal’ signs of ageing. In fact, 90% of all vitamin B12 deficient patients will develop a disorder of the nervous system which often appears mysterious to doctors and may be diagnosed as amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), or Guillain-Barré syndrome. Doctors are looking for blood anomalies, but neurological damage can precede blood changes by many years. 

The fact remains that the true incidence of vitamin B12 is not known, because it is not effectively screened for, but the authors note that 90% of patients they encounter in the Emergency Room subsequently diagnosed with vitamin B12 deficiency are on antidepressants.  

Unlike other vitamin deficiencies, simply taking a multivitamin may not protect you. The US National Institute of Health (NIH) acknowledges that only about 2% of vitamin B12 supplemented is absorbed in healthy people.  

 

Causes of vitamin B12 deficiency

The causes of vitamin B12 deficiency include:

  • Pernicious (meaning deadly) anaemia which is an autoimmune disease. In this disorder the sufferer cannot make intrinsic factor so that the vitamin B12 consumed is unusable by the body. 
  • A more common form is caused by reduced amounts of stomach acid due to deterioration of the stomach lining (atrophic gastritis). 
  • Any gastric or intestinal surgery.
  • A history of alcohol abuse.
  • The taking of numerous pharmaceutical medications from those prescribed for gastrooesophageal regurgitation disorder (GORD/GERD), through ulcer drugs to diabetes medications.
  • Exposure to nitrous oxide either during dental or medical treatment or abuse inactivates body stores of vitamin B12.
  • The presence of mercury toxicity also interferes with the ability of vitamin B12 to cross the blood-brain barrier and reach the neurons where it is needed.
  • Inborn errors of vitamin B12 metabolism can cause deficiency even if supplementing due to the inability to metabolise the vitamin in food or supplemental form. 

 

In summary, those at particular risk include:

  • Vegans and vegetarians
  • Those over sixty
  • Anyone who has had gastric surgery
  • Those taking proton pump inhibitors, antacids, H2 blockers, or diabetes drugs 
  • Those who have been exposed to nitrous oxide 
  • Those with a history of eating disorders or alcoholism
  • Anyone with a family history of pernicious anaemia
  • Any digestive disorder affecting absorption 
  • Autoimmune disorders - and especially thyroid disorders
  • Men or women with fertility problems and women with a history of miscarriages.

 

Symptoms of vitamin B12 deficiency

Symptoms of vitamin B12 deficiency include:

  • Breakdown of the myelin sheath insulation around the nerves leading to ‘mysterious’ illnesses of frightening symptoms. Neurological symptoms including tingling, numbness, intense chronic back, leg and/or arm pain, a diminished sensitivity to touch, pain and/or temperature, a loss of positional sense, tremors and paralysis which may have been labelled multiple sclerosis (MS), ALS, Parkinson’s disease, diabetic neuropathy, or Guillain-Barré syndrome.
  • Depression/anxiety (including post-natal depression/psychosis), personality changes, OCD, violent outbursts, paranoia, hallucinations, psychosis and suicidal tendencies.
  • A loss or urinary or faecal continence. 
  • Balance problems and tinnitus.
  • Apathy, sleepiness, fatigue, weakness and exhaustion a.k.a. chronic fatigue syndrome (CFS).
  • Memory loss, loss of intellectual capacity and dementia. 
  • Failure to thrive in infants, developmental delays in children and/or autistic behaviour.
  • Breathlessness.
  • Anaemia.
  • Loss of appetite, feeling bloated after small/normal sized meals, weight loss and anorexia. 
  • Diarrhoea and/or constipation. 
  • Osteoporosis. 
  • Increased susceptibility to infection.  
  • Vitiligo (white patches) or hyperpigmentation, prematurely grey hair.
  • Infertility in both sexes and miscarriages in women. 
  • Increased risk of deadly diseases including strokes, heart attacks, deep vein thrombosis (DVT), embolisms and cancer.

 

Vitamin B12 deficiency: Case studies

The book is liberally illustrated with examples of those who have recovered their health after their vitamin B12 deficiency was diagnosed and sadly, those who have suffered lifelong impairment and even death as a result of their condition going unrecognised and untreated. Possibly worse still, are the cases where one doctor has recognised and treated the problem until care has been transferred to another doctor (for whatever reason) who has withdrawn or refused further treatment leading to sometimes irreversible (and entirely preventable) degeneration in the health of the individual. 

Dr David Carr

Examples include those mistakenly diagnosed as having multiple sclerosis, children left disabled for life, people with balance problems, numb hands and feet, shooting leg pains, those diagnosed with early onset dementia or pre-Parkinson’s disease in early to midlife, those who are so depressed they commit suicide, those who appear to be schizophrenic and those in nursing homes with ‘Alzheimer’s disease’. 

One such example is Dr David Carr who is a paediatrician who lives and works in Florida. He became very ill, started to suffer paraesthesia and balance problems, lost his vision and hearing, could not eat or walk, became incontinent and was diagnosed with multiple sclerosis (MS). The picture (left) shows him when he was very sick.

In spite of being a doctor himself and seeing the best neurologists, the diagnosis of vitamin B12 deficiency was repeatedly missed until he was literally on his death bed. Belated diagnosis and effective B12 treatment has turned his condition around and he has largely recovered but has been left permanently disabled and needs to use crutches to walk. 

 

Diagnosis of vitamin B12 deficiency

It is too late for many of these people, but it’s not too late for you to protect yourself and be aware of the problemThe good news is that it is easy (and inexpensive) to treat vitamin B12 deficiency – but only if your doctor diagnoses you before it’s too late. 

Diagnosis is problematic because more than a third of people with vitamin B12 deficiency never develop the enlarged red blood cells of anaemia (macrocytosis) meaning that B12 deficiency frequently evades the routine blood tests that doctors rely on. And the neurological symptoms of vitamin B12 deficiency such as pins and needles in the hands and/or feet, memory loss, depression, personality changes, dizziness, loss of balance and outright dementia can precede any blood abnormalities by many years.  

In addition, taking steroids (often prescribed for those with autoimmune disorders) can normalise the anaemia and enlarged cells characteristic of vitamin B12 while allowing underlying deficiency - and neurological damage - to continue.

Another issue is that vitamin B12 deficiency can mimic other diseases. And that even if investigated, high levels of folic acid can mask B12 deficiency in complete blood count (CBC) tests. This means that the fortification of grains with folate in order to prevent spina bifida frequently masks vitamin B12 deficiency and leads most physicians to fail to consider and test for vitamin B12 deficiency.

As stated earlier, diagnosis in the older population is frequently missed and wrongly attributed to ageing.

 

Vitamin B12 levels

Testing for B12 deficiency

The current serum B12 threshold levels are shown right. Deficiency is currently defined as having serum B12 levels of less than 200 pcg/ml and 'normal' levels are defined as being from 450-650 pcg/ml. Those falling below 'normal', but not meeting the deficiency criteria in the 'grey' zone often go undiagnosed and untreated. 

A big part of the problem is the fact that doctors tend to treat laboratory results rather than the individual, and the types of tests they are relying on to diagnose vitamin B12 deficiency. To fully assess vitamin B12 status you need:

A serum B12 test However, of total serum vitamin B12 levels, only 20% is active (transcobalamin II) and this proportion will not be revealed by a test result.  

A urinary methylmalonic acid (MMA) test If either urine or blood tests show an elevated MMA it can indicate vitamin B12 deficiency.  Because MMA is 40 times more concentrates in the urine than in the blood, the urinary MMA test can be used to rule out B12 deficiency if not elevated.  

A holotranscobalamin (holo TC) test Vitamin B12 in serum is bound to 2 proteins - transcobalamin and haptocorrin which when combined form holotranscobalamin or active B12.

A homocysteine (HCY) test If plasma homocysteine levels are elevated it can also indicate a vitamin B12 deficiency.

Because there are no diagnostic tests for diseases such as Parkinson’s, Alzheimer’s or multiple sclerosis, it is critically important to rule out vitamin B12 deficiency as a cause. It is estimated that 10% of people diagnosed with multiple sclerosis – tens of thousands of people - don’t have MS, but are suffering with vitamin B12 deficiency

The authors consider that the current normal reference ranges for serum vitamin B12 are low and need raising, and that if this were to occur, the necessity to run more expensive and sensitive tests would not be necessary. 

 

Treating vitamin B12 deficiency

If you suspect that the symptoms and causes of vitamin B12 deficiency might apply to you, the authors counsel you to avoid self-treatment because it will mask any deficiency preventing diagnosis. They counsel you to get tested before supplementing vitamin B12 in any form.

For pre-existing deficiency injecting high-dose methyl B12 daily or bi-weekly overcomes any problems with absorption of oral supplements and, after initial treatment, you may be able to go onto supplementation monitored by an annual blood test. For those who fall into the 'grey' zone, a therapeutic trial of B12 injections may show improvement in symptoms for some and there is nothing to lose and everything to gain by ruling out vitamin B12 deficiency as a cause. The fact is that the cost of treatment is insignificant compared to the harm done by B12 deficiency and any excess is excreted so treatment is remarkably safe. 

 

Educating doctors about vitamin B12 deficiency

As medical professionals, the authors reluctantly concede that only legal action is going to bring about meaningful change in medicine. Ignorance, apathy and a severe lack of knowledge in the medical community of this issue means that people are being dismissed with undiagnosed B12 deficiency every day. 

 

Further resources

Informative websites on this subject include www.b12Awareness.org and www.B12d.org.

You might also be interested in the following: 

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Vitamins

Post-Natal Depression

Nutritional Recommendations

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The Importance of Vitamin B12 

Vitamin B12 and Homocysteine

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Diagnosing and Treating Vitamin B12 Deficiency

Symptoms of B12 Deficiency

Why You Should Be Taking Vitamin B12

 

Or for all media use the Search facility at the top of the page

Could it be B12?

For more information refer to the book Could it Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and Jeffrey Stuart. Click the appropriate link for UK and US Amazon.

      

 

Could it be B12 book review: Article summary

This article offers a summary of the book 'Could it be B12?' by Sally Pacholok and Jeffrey Stuart. The book addresses the importance of vitamin B12, and the causes and symptoms of deficiency and gives specific advice given about obtaining a diagnosis and effective treatment. 

 


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The Natural Recovery Plan Early-Spring Newsletter 2014 Issue 50. Copyright Alison Adams 2014. All rights reserved
Dr Alison Adams Dentist, Naturopath, Author and Online Health Coach www.thenaturalrecoveryplan.com

Failure to produce white blood cells can also mean that the individual falls victim to infections. 
Failure to produce white blood cells can also mean that the individual falls victim to infections. 
The good news is that it is easy (and inexpensive) to treat vitamin B12 deficiency – but only if your doctor diagnoses you before it’s too late. 
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