Monthly Archives: September 2013

POTS vs. Vitamin B12 Deficiency: a Venn Diagram

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I had been severely, surreal-ly sick for years–decades actually. My heart palpitations started in 2005, but I had symptoms before that. In 2008, I got the diagnosis of “Postural Orthostatic Tachycardia Syndrome” (POTS). According to my primary doctor at the time, my tilt table result was “impressive.” The tilt table test is the method by which POTS is diagnosed. My heart rate spiked into the 140 beats-per-minute range just standing upright for a few minutes. I became severely short of breath as I continued to stand. I told my cardiologist I thought it was asthma I’d been experiencing. She said, “No, your heart is just working that hard.” POTS is a syndrome, a cluster of symptoms, and therefore, not a diagnosis of a definitive disease. From researching online after my diagnosis, I found that POTS does not have a known cause or cure. It is not deadly, and sometimes people have spontaneous remission. Medications, compression stockings, and dietary approaches helped some people manage the symptoms of POTS, but were not curative. Here are just some of the symptoms I experienced with my “POTS”:

  • fatigue
  • dizziness
  • neurological symptoms
  • tachycardia (rapid heart beat)
  • heart palpitations
  • neuro-psychological symptoms
  • problems with memory, confusion, trouble with word recall
  • pallor (pale skin)
  • anorexia (decreased appetite)
  • nausea
  • weight loss
  • syncope or feeling lightheaded, like passing out
  • restless legs
  • depression
  • parasthesia (numbness, tingling, burning sensations)
  • severe shortness of breath
  • exertional dyspnea (shortness of breath with physical exertion)

POTS is categorized as an autonomic nervous system disorder, or “dysautonomia.” My cardiologist explained that, though it affected my heart, POTS is actually a neurological disorder. The nerves in my legs were not getting the signal to contract; contraction of the large muscles in the lower extremities is a main way that blood from the lower extremities returns to the heart and head. I found a dysautonomia support forum on the Mayo Clinic website. The stories were heartbreaking. A mother described her teenage daughter’s debilitating illness. She said her daughter’s life was ruined. This story was repeated over and over again, and mirrored my story.

In September 2011, I received a diagnosis of a vitamin B12 deficiency. This was before I was diagnosed with pernicious anemia, in February 2012, as the cause of my vitamin B12 deficiency. Nearly four years passed between my diagnosis of POTS and pernicious anemia (PA). I was under the impression that, though my symptoms pretty much destroyed my life as I knew it, POTS would not kill me. I was wrong, because I was actually suffering from pernicious anemia, which, as “pernicious” means, is deadly. I gratefully received a correct diagnosis of PA before I died, or ended up in a wheelchair, but people still die from this autoimmune disease. The American Journal of Public Health published a study which shows that autoimmune diseases are a leading cause of death in young and middle-aged women in the United States.

Between September 2011, and February of the following year, I researched vitamin B12 deficiency online. When I brought up a website which listed symptoms of vitamin B12 deficiency, I was shocked. It listed all of my “POTS” symptoms. In fact, if one were to do a Venn diagram, it would be overlying circles, instead of a mere intersection of circles. When my doctor gave me a pernicious anemia diagnosis in February, he said, “This absolutely explains all of your POTS symptoms.” And as for the possibility of recovery he added, “It’s going to be a long haul,” but told me of a colleague who had numbness from her knees down, because of a delayed diagnosis of vitamin B12 deficiency. After many years of vitamin B12 treatment, she regained the feeling in her legs.

It occurred to me that if my POTS diagnosis was actually from a vitamin B12 deficiency, others with POTS were also suffering from an undiagnosed vitamin B12 deficiency or pernicious anemia. They, too, were told they had a mysterious, inexplicable disorder, for which there were only palliative measures. Perhaps most of these POTS sufferers are actually vitamin B12 deficient.

So if you have received a diagnosis of POTS, a dysautonomic disorder, or a neurological/autonomic nervous system problem, I encourage you to pursue finding a cause for your symptoms. If you have depression, bone-deep fatigue, or any of the other symptoms mentioned above, and you feel your doctors are “missing something,” please do not give up searching. Consider having your doctor test you for a vitamin B12 deficiency. Continue to research possibilities. A good place to start is by reading, Could It Be B12?: An Epidemic of Misdiagnoses, by Sally Pacholock, R.N. and Jeffrey Stuart D.O..

Trust your intuition. Trust what your body is telling you. Persevere.

Autism and Vitamin B12 deficiency

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I recently finished reading, Could It Be B12?: An Epidemic of Misdiagnoses. I highly recommend reading the entire book. To put children first, I want to highlight the connection discovered between vitamin B12 deficiency and autism.

A startling statement from the book (page 246), accredited to  the Centers for Disease Control and Prevention (CDC), is that “for decades, the best estimate for the prevalence of autism was four to five per 10,000 children. More recent studies from multiple countries using current diagnostic criteria conducted with different methods have indicated that there is a range of ASD (Autism Spectrum Disorder) prevalence between 1 in 500 children and 1 in 166 children.”

With this dramatic rise in the incidence of autism in children, it makes sense to me to start widespread screening of infants and children for vitamin B12 deficiency. According to Could It Be B12?: An Epidemic of Misdiagnoses, many vitamin B12 deficiency symptoms can mimic autistic behavior. The following are a few symptoms:

  • Developmental delay
  • Impaired fine and gross motor skills
  • Lower IQ
  • Speech and language delay and difficulties
  • Aloofness and withdrawal
  • Seizures
  • Failure to thrive
  • Brain atrophy on MRI
  • Apathy
  • Irritability
  • Tremor
  • Hypotonia/ “floppy muscle syndrome”

Besides autism-like symptoms like delayed speech and trouble socializing, there can be permanent neurological damage. If not caught in time, vitamin B12 deficiency can cause irreversible damage that affects cognitive abilities, and the ability to walk.

If you have a child with a diagnosis of autism, or if you are an adult with autism, I encourage you to ask your doctor about testing for a vitamin B12 deficiency. As outlined in Could It Be B12? An Epidemic of Misdiagnoses, the current parameters for adult serum (blood) levels of vitamin B12 do not catch people in “the gray zone” of between ~200 – 450 pg/mL. The authors state the blood level for children should be even higher– closer to 1,000 pg/mL. There are additional tests (methylmalonic acid/MMA and Homocysteine/ Hcy) which can be used to definitively diagnose a vitamin B12 deficiency.

Be Well & B12!

Honor the Women

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In October, Family Resources is sponsoring a luncheon to Honor the Women. It takes place at the Quad-Cities Waterfront Convention Center, in Bettendorf, Iowa. Proceeds benefit the Quad-Cities Rape/Sexual Assault Counseling & Advocacy Program.

The keynote speaker this year is Nancy Donoval. She is a storyteller and survivor. Last year’s keynote speaker was Anne Ream, with the Voices and Faces Project. It was an amazing and impactful day.

This year, the event takes place on Friday, October 11th. Doors open at 11a.m. for the silent auction. The luncheon and program are from 12p.m. – 1:30p.m. Tickets are $30.

You can register online at www.famres.org, or call 563 468 2140.

There is a student event, “The Road to Shameless,” at Augustana College, Wallenburg Auditorium, on Thursday, October 10, from 7p.m. – 8:30p.m.

Eat Food. Not Too Much. Mostly Plants

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“Eat food. Not too much. Mostly plants,” is Michael Pollan’s credo from his New York Times’ bestseller, In Defense of Food: An Eater’s Manifesto. It is a follow-up to his book, The Omnivore’s Dilemma, which I, admittedly, have not read… yet. In Defense of Food is a thoroughly-researched and cogent cry for changing our dietary habits back to what our grandparents practiced. Pollan argues so much of what we are eating now does not meet the criteria for food. The emphasis on “nutritionism” has robbed us of the wisdom contained in whole foods. The American diet is heavily based on three over-hybridized crops: wheat, soybeans, and corn, which are not nutritionally dense. He points out that by consuming the American diet, we can be both overfed and undernourished. Michael Pollan also makes a good case for returning to the joy of eating food.

Here, praise for In Defense of Food.

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Chefs like Dan Barber also advocate bringing pleasure back to eating. During an interview on November 5, 2010, at Beth-El Zedeck synagogue, Chef Barber speaks about the pleasure of eating. Krista Tippett radio host of On Being, speaks to him at length about his gastronomic evolution. Chef Barber stresses that what tastes best is also the most nutritious, and is the most sustainable way of growing food. He continues to keep clear the trail blazed by Alice Waters, and her “California Cuisine” movement of the 1970s.

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You can bring more pleasure to your eating experience and become more healthy at the same time. You can take part in the Community Supported Agriculture programs (CSAs). As your budget allows, you can buy organic food from local sources, at farmers’ markets, and grocery stores. You can grow your own food in your own garden or, if you live in an apartment, you can grow herbs and some vegetables in containers. More and more urban environments have community gardens; an amazing example is Will Allen’s, Growing Power, located in Milwaukee, Wisconsin.

So please be kind to your body by eating nutrient-dense, healthy, real food. It will make for a healthier communit, and your taste buds will be happier.

Bon appetit!

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Give me spots on my apples, but leave me the birds and the bees. ~Joni Mitchell, from her song,”Big Yellow Taxi.”