Could It Be B12? An Epidemic of Misdiagnoses
By Sally M. Pacholok, RN, BSN and
Jeffrey J. Stuart, DO
Linden Publishing, 2005 (1st ed.)
Sometimes it is the person who has suffered from a disease who is the most capable of providing accurate information, creating widespread awareness, and advocating for proper testing and treatment of others afflicted with the same condition. Sally Pacholok, RN, is one such individual. As a young nursing graduate who essentially diagnosed herself with vitamin B12 deficiency and pernicious anemia, Pacholok was astonished to discover a significant percentage of the patients she cared for in her practice exhibited unrecognized or misdiagnosed symptoms of B12 deficiency. Most of these patients were suffering from debilitating conditions that were not responding to the medications their doctors had prescribed for their incorrect diagnoses. Making matters worse, when Pacholok suggested that these patients’ B12 status be checked, most doctors were scornful or dismissive, in effect condemning many patients to steadily worsening health or even death.
Over the course of more than twenty-five years in health care, Pacholok has used her expertise to accurately spot the multitude of vitamin B12 deficiency symptoms and to advocate for proper diagnoses and care protocols for thousands of patients. Fueled also by moral outrage at years of medical negligence surrounding this disorder, she and Dr. Jeffrey Stuart, her husband and co-author, have written Could It Be B12? in order to increase awareness among both health care consumers and medical professionals of the common, often disguised, and potentially deadly markers of B12 deficiency. By arming consumers with accurate information they aim to replace current medical apathy with routine testing for B12. The information, advice, and guidance Pacholok and Stuart have collected in their book could very well prevent unnecessary suffering and even save the lives of many readers and their family members.
Vitamin B12 deficiency affects all age groups, but is often more common in those aged sixty and older; from 10-15 percent in this group are estimated to be deficient in the vitamin. Nearly forty percent of hospitalized elderly patients have low B12 levels, and fifty percent of long-term vegetarians and vegans are deficient. The prevalence of the condition is important to understand, since B12 deficiency manifests in a multitude of symptoms—some subtle, some drastic—and these symptoms are most often presumed by medical practitioners to belong to other disease states. The time lost on such misdiagnoses poses a real threat to the sufferer, since a B12 deficiency, if caught in time, is one of the simplest to remedy. Yet when valuable months or years are lost due to misdiagnosis, much of the damage caused by the deficiency may become permanent.
The many body systems affected by vitamin B12 deficiency underscore this vitamin’s importance in their proper functioning. This is also the reason that when not understood, the deficiency of the vitamin appears to mimic symptoms of seriously debilitating degenerative diseases. The neurological system is perhaps most dramatically affected, presenting signs such as pain, numbness, weakness, “pins and needles” sensations, imbalance, confusion, depression, dementia, and incontinence. These symptoms are often misdiagnosed as multiple sclerosis, fibromyalgia, Parkinson’s and Alzheimer’s diseases, for example.
Vascular symptoms of vitamin B12 deficiency mimic heart disease. Genitourinary system aberrations are mistaken for precancerous conditions, which can lead to unnecessary hysterectomies, and blood anomalies are mistaken for iron-deficient anemia. The immune and gastrointestinal systems also are affected by debilitating symptoms that will only worsen as long as the
underlying vitamin B12 deficiency continues to be unaddressed. If any of these conditions is caught early, correctly diagnosed and treated with vitamin B12 supplementation, it is reversible, but many symptoms, especially neurological problems such as paralysis, dementia and brain damage in children, will become permanent without timely B12 supplementation.
Vitamin B12 is a fascinating nutrient, and its metabolism in the body is dependent upon a finely tuned series of events, any one of which, unfortunately, might all too easily fail. While we need only very small amounts every day, our bodies may not absorb or metabolize the vitamin even if we consume adequate quantities. The body’s metabolic process for this nutrient is far more complex than for other vitamins. In short, the B12 in our food is bound to protein, and requires the properly acidic environment of the stomach to free the vitamin. This means our stomachs must produce adequate amounts of both the enzyme pepsin and hydrochloric acid, as well as a protein called the intrinsic factor. The intrinsic factor and the freed B12 meet up in the small intestine where, with the help of pancreatic enzymes, they are linked together for transport to the last portion of the small intestine, the ileum. The healthy ileum contains receptors that pick up the linked B12-intrinsic factor and carry them into the bloodstream. A protein in the blood then carries the B12 to cells for use and any excess to the liver for storage.
While elegant, this carefully orchestrated process can go wrong at any juncture. The most common complication occurs right at the beginning with not enough stomach acid to free the B12 from its protein matrix. Many people past fifty suffer from atrophic gastritis—an inflammation of the walls of the stomach with subsequent low hydrochloric acid production. Add the widespread use of antacids in that age group to this condition and B12 absorption is prevented at the very first stage of digestion, regardless of how much is consumed in food. Older individuals have fewer of the stomach cells that produce intrinsic factor as well.
Gastrointestinal disorders such as Crohn’s disease, celiac disease, enteritis and any inflammatory process will interfere with B12 absorption, even if it is correctly broken down by the body. Toxins such as mercury will interfere with the ability of B12 to cross the blood-brain barrier. Alcohol and the anesthetic nitrous oxide (often used in dental surgery) will inactivate B12; birth control pills deplete the vitamin in the body. A variety of inborn metabolic errors can also prevent normal absorption. The most well known aberration is pernicious anemia, although it is not the most common problem. Numerous medications inhibit the absorption of B12, including the many commonly prescribed drugs for heartburn, GERD and ulcers, as well as medications for diabetes, gout, some antibiotics and diuretics, the cholesterol drug Questran, and others. These drugs are commonly prescribed to the aging population, along with fistfuls of other medications that can mask the signs of B12 deficiency while worsening its effects, such as anti-depressants, drugs for insomnia, fatigue, numbness and tingling in extremities, incontinence, and tremors. Especially because of these drug interactions the aging population is at great risk for B12 deficiency. Most medical practitioners, however, will ascribe their deteriorating conditions to the ravages of age, or the complications and “natural progression” of their wrongly diagnosed diseases.
Those with eating disorders such as bulimia and anorexia are at great risk for B12 deficiency, as are vegetarians and vegans. Most chilling is the deadly risk vegetarian and vegan mothers take by not supplementing with B12 while pregnant and breastfeeding their infants. The body will not mobilize stored B12 in the mother for the benefit of the fetus or newborn; B12 must be coming in regularly through the diet for it to reach the child. Pacholok points to very recent research that indicates the B12 that is available in spirulina and tempeh is in fact an analogue of the true B12, that blocks the absorption of true B12 and further deepens its deficiency in those vainly seeking the nutrient from these sources.
Vitamin B12 is absolutely vital for young, developing brains, and early deficits can have devastating, lifelong effects for children. Pacholok cites a 1985 study in which a group of infants of vegans was compared to infants who consumed meat and dairy foods. Researchers detected “subtle but significant impairments in the psychomotor functioning of the vegan children.” When the parents of these children were told of the findings, many of them switched their children to diets containing milk, eggs and sometimes meat. On average, the children began eating these foods at age six. These children were tested again in adolescence, and many were still found to be B12 deficient even after years of eating animal foods. The researchers’ report is sobering: “We found a significant association between [B12] status and performance on tests measuring fluid intelligence, spatial ability, and short term memory.” The impairment in fluid intelligence is particularly disturbing, “because it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning.” Of course one can only imagine how many of these children have also been diagnosed and drugged for ADD, ADHD, and autism spectrum disorders.
“Most pediatric cases involving neurological damage due to acquired B12 deficiency,” Pacholok notes, “involve children eating vegan, vegetarian, or macrobiotic diets.” Strangely, however, Pacholok generally lauds the decision of parents and even children themselves who choose these diets. “None of this is a criticism of meat-free diets, which—because they are low in fat, high in phytochemicals and antioxidants, and generally low in artificial colorings and additives—tend to be very healthful.” Apart from the fact that children on such diets will have a hard time getting much use from phytochemicals due to their immature digestive systems, it is apparently nearly impossible for those trained in conventional medicine to even consider challenging the establishment credo that animal fat is the enemy. Instead of advice regarding diet, Pacholok advocates for B12 supplementation—primarily via injection to sidestep the problems associated with the GI tract entirely—as she clearly does not believe diet to be a trustworthy avenue for many, if not most, people. In a population widely afflicted by multiple gut disorders, chronic over-medication, and the preponderance of bad, fad, or simply mad diets, she could be right.
Aside from this modest gripe, I am grateful to Pacholok and Stuart for preparing such a thorough and useful guide to the understanding of vitamin B12 deficiency. Their detailed advice for the most accurate means to test for the deficiency will permit anyone to know how to request, or more likely, insist that the doctor takes their condition seriously and follows through responsibly. This is one of those books that can empower those without medical training but who must advocate for themselves or family members when navigating an often apathetic medical system. For those who suffer from a hidden B12 deficiency, it could be a lifesaver.
This article appeared in Wise Traditions in Food, Farming and the Healing Arts, the quarterly magazine of the Weston A. Price Foundation, Spring 2011.🖨️ Print post
After reading the page posted on your website about B12 deficiency, I only wish I would have read this 9 yrs. ago although your book wasn’t written yet. But back in 2005 I was experiencing numbness and tingling in my feet and was feeling tired. I had MRI’s done and I didn’t have MS and Iwas referred to different kind of drs. to try and find out what was wrong. 2 yrs. later I was referred to a d.o. dr. and he did tests on me and did a B12 test. Low and behold, my level was 41.
By then I had permanent damage like severe stiffness, spasms and severe spacticity in my legs and feet. I have other damage as well. But for years I’ve been on cyanocobalamin and my level has been up but my symptoms aren’t better. I heard about methl/adensyl cobalamin which can regenerate the nerves, but my drs. aren’t interested in hearing about this. It makes me furious, but i don’t know what else to do.
Have you tried your local chapter leader for doctor’s referrals? Where do you live?