March 28, 2006

Confusion Surrounds B12 Deficiency: Symptoms Are Specific and Experts Differ on Whether Routine Testing is Necessary

By Patricia Anstett, Detroit Free Press

Mar. 28--Tired and run down? No appetite? Trouble walking? Depressed or irritable? Do your hands or feet tingle?

Symptoms like these describe dozens of different disorders. Yet many people are not tested for one possible cause: a deficiency of B12, a vitamin essential to health that is found in meat and dairy products.

Those vulnerable to potentially serious complications from B12 deficiency are senior citizens, strict vegetarians or vegans, bariatric and other stomach-surgery patients, and people who take certain diabetes, heartburn and ulcer medicines.

Others particularly at risk are people who lack a protein that helps absorb the vitamin. This occurs in those with some autoimmune disorders and pernicious anemia, a blood disorder.

But there's controversy about the wisdom of routine testing because of costs and concerns that doctors might find people with low levels of the vitamin who don't warrant therapy.

Nine out of 10 people with low B12 levels actually are healthy and don't need intervention, says Dr. Ralph Carmel, a leading B12 expert who is widely published on the topic and who has treated thousands of patients with the problem.

The trouble is distinguishing those with real problems from others with lower levels that "have no clinical implications," says Carmel, director of research in the Department of Medicine at New York Methodist Hospital, in Brooklyn. Once a true B12 deficiency is established, doctors need to treat patients promptly and aggressively because if the problem goes untreated, "it can be disastrous," he says. "If it goes untreated for too long, the damage doesn't go away."

A recently published book, "Could It Be B12? An Epidemic of Misdiagnoses" (Quill Driver Books, $12.95) by Sally Pacholok and Dr. Jeffrey Stuart of Shelby Township, argues that B12 deficiency frequently is under-diagnosed.

"I've worked in the same hospital for 23 years, and I see so many people with signs and symptoms," says Pacholok, a registered nurse who last year published the book with her physician husband.

Pacholok was diagnosed at age 19 with a hereditary form of pernicious anemia, a disease that causes B12 deficiency. Over the years, when she urged that patients be tested, "they looked at me as if I was some kind of nut," says Pacholok, 42. She got some of her physician and nurse colleagues at Mt. Clemens General Hospital to probe further if patients showed symptoms.

Some doctors question the cost-effectiveness of testing people in high-risk groups or people who have diseases, such as Alzheimer's or multiple sclerosis, with symptoms that mimic B12 deficiency. Routine blood tests are highly inaccurate. A more accurate urinary test costs from $90 to $200.

Dr. Jeffrey Halter, chief of geriatrics at the University of Michigan Medical Center, says the center doesn't routinely test for B12 deficiency unless an elderly person is malnourished. Testing people with slightly low B12 levels or who have memory loss is controversial and not cost-effective, he says.

Estimates vary about the incidence of B12 deficiency, but two leading experts agree the consequences of not treating those with the problem can be devastating.

Research by Katherine Tucker, a professor of nutrition at Tufts University and a veteran B12 researcher, found that as much as 16% of the population has B12 deficiency or low levels of B12.

"It's a real problem," she says. "The awareness of it certainly needs to be raised."

Thousands of people with the problem have called, written and e-mailed her about their B12 deficiency in recent years, she says. "I've never seen anything like it."

Among vegetarians or vegans, B12 deficiency "is a viable concern," says Suzanne Havala Hobbs, a registered dietitian with the University of North Carolina, Chapel Hill and a well-recognized writer on vegetarian issues.

She and others say there's now good information about the deficiency.

Read on to become more informed.

Answers to common questions about B12

QUESTION: What is B12?

ANSWER: B12 is a vitamin, also known as cobalamin, found in meat, eggs and dairy products. The only vitamin not naturally available from plants or sunshine, it is essential for the formation of red blood cells and cell division.

Q: Who is at a risk of B12 deficiency?

A: It's prevalent in people who lack a protein called intrinsic factor that helps with a person's ability to process B12. That occurs in pernicious anemia, a blood disorder that causes abnormally low red blood cell counts.

Others at risk are senior citizens, vegetarians, vegans, bariatric and stomach-surgery patients, and people who regularly take certain diabetes, heartburn and ulcer medicines.

Q: Is there a link to heart problems?

A: B{-1}{-2} deficiency may cause an increase in homocysteine, a measurement in blood tests linked to heart disease, but the link has not been proved, experts say.

Q: What are the symptoms of B{-1}{-2} deficiency?

A: Fatigue, appetite loss, mouth soreness, a red or sore tongue, muscle weakness, problems with walking, tingling in feet and hands, depression, dementia or memory loss, hallucinations, psychosis and personality changes.

Q: What are serious consequences of B12 deficiency?

A: Memory loss and leg paralysis.

Q: How is it diagnosed?

A: With blood or urine tests. The blood test is more widely used, but it can be inaccurate as much as half the time. The urinary test is known as the UMMA, for urinary methylmalonic acid.

Q: What do the tests cost?

A: About $35 for the blood test and from $90 to $200 for the UMMA at many doctor's offices and medical centers. You can order the UMMA for only $90 without a doctor's prescription from a Cincinnati firm. It requests your doctor's name so he or she can be sent a copy of your test results. For details, call the Norman Clinical Laboratory, 800-397-7408, or visit

Q: What's the best way to treat B12 deficiency?

A: You have a choice of pills or shots. Some experts say that shots are the best way to treat those who are deficient, at least initially.

Q: What do the pills and shots cost?

A: Shots are $1.25 each; pills are about $1 for a month's supply.

Q: Does insurance cover them?

A: It varies.

Q: How much B12 should you get each day?

A: You need only 2.4 micrograms a day if you are 14 or older. But you need much more, 1,000 micrograms a day, if you are deficient.

Q: What are the best food sources of B12?

A: Mollusks, such as clams; liver and wild salmon; venison and baked snapper. For vegetarians, there are numerous products fortified with B12, including soy and rice milk, cereals and the Red Star T-6635+.

A look back

-- B12 deficiency was common 100 years ago. Discovery that daily consumption of half a pound of liver led to the dramatic reversal of B12 deficiency won the Nobel Prize in 1934 for George Minot, William Murphy and George Whipple.

-- Work with B12 also played a role in three subsequent Nobel Prizes in chemistry in 1964, 1965 and 1981.

-- By the 1950s, many doctors routinely gave patients B12 supplements.

-- Doctors serving celebrity clients mixed the shots with amphetamines, causing controversy and alarm, until the practice fell into disregard, says Dr. Howard Markel, a University of Michigan medical historian.

Patricia Anstett

Stories of 3 patients

Patti Roland

36, Harrison Twp.

Occupation: Registered nurse.

Symptoms: Roland, with two children, ages 8 and 6, was tired all the time. "I was a big napper," she says. She stopped eating meat last year and noticed her lethargy worsened and her hair began to fall out

Outcome: After a test found a deficiency, she began B12 shots in December. "I definitely have noticed that my activity level is much higher now," she says. She no longer naps, and her hair loss has stopped.

Norbert Biebuyck,

82, Chesterfield.

Occupation: Retired custodian.

Symptoms: Hospitalized four years ago with a heart attack, he was weak and had no pep. "I didn't even want to get out of bed," he says. When he had to be readmitted a few weeks after his heart attack to get a pacemaker, he was diagnosed with B12 deficiency. "I was willing to do anything to feel better."

Outcome: "I started getting these B{-1}{-2} shots, which took about six months to help," he says. He continues with pills and the shots. "At my age, to get around, it feels great to have more energy."

Tori Robinson

29, Ft. Gratiot.

Occupation: Registered nurse.

Symptoms: She developed severe exhaustion and fatigue after stomach-reduction surgery one year ago. "I was really tired and almost passed out a couple times," Robinson says.

Outcome: When tests found a B{-1}{-2} deficiency, she began taking shots earlier this year. "I'm more awake. I haven't been dizzy and feeling like I might pass out."

Contact PATRICIA ANSTETT at 313-222-5021 or [email protected]


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