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.

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18 thoughts on “POTS vs. Vitamin B12 Deficiency: a Venn Diagram

  1. […] POTS vs. Vitamin B12 Deficiency: a Venn Diagram (bewellandb12.wordpress.com) […]

  2. Tilt A World | Julie's Spoonful of Sugar October 25, 2013 at 5:35 pm Reply

    […] POTS vs. Vitamin B12 Deficiency: a Venn Diagram (bewellandb12.wordpress.com) […]

  3. juliasarahelizabeth October 25, 2013 at 9:49 pm Reply

    Thanks for sharing your story. I just had my Tilt Table Test this morning. I recently found out that I am B1 deficient and have struggled with anemia in the past. In the last two weeks I went from being an insomniac to sleeping all the time. Its be drastic the change and exhausting. I am just waiting for the results now.

    • thereseguise October 30, 2013 at 10:08 pm Reply

      I wish you the best of luck in pinpointing the cause for your health changes. I hope you are feeling better soon. Thank you for posting your comment. Please spread the word about the prevalence of vitamin B12 deficiency.

  4. […] expressive aphasia  and anomic aphasia when I was vitamin B12 deficient. I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS, in 2008. But this was not the full […]

  5. Melinda Roman November 7, 2014 at 2:56 pm Reply

    This is exactly what happened to me. Just about to start b12 shots. I also have mthfr so I have to have methyl b12 or hydroxyl b12 or my body will not utilize the nutrient. How is your treatment coming?

    • thereseguise November 8, 2014 at 7:53 am Reply

      I use compounded methylcobalamin. I find intramuscualar injections weekly or every 10 days works best for me. It’s been a long haul, but am noticing improvements after 2 1/2 years of B12 injections. Best of luck to you with your health. Be well and B12!

  6. Chloe June 10, 2015 at 4:00 pm Reply

    Not sure if this helps or if anyone is interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption), which would mean no more shots. Apparently it came out a month or two ago. Has anyone tried it??

    • thereseguise June 11, 2015 at 2:23 am Reply

      Chloe. This is fascinating. I had not heard of Eligen B12. It looks like it would even work in cases of pernicious anemia (where there are antibodies against intrinsic factor) since it “chaperones” the vitamin B12 across the cell wall. Thank you so much for this post.

      • Chloe June 16, 2015 at 2:07 pm

        Yes, isn’t it interesting?? Sounds like a great option so far! No problem, glad it was helpful!

  7. thereseguise June 18, 2015 at 2:29 am Reply

    Chloe–very helpful. I’m glad the word is getting out about the prevalence of vitamin B12 deficiency. There is a new movie, based on the life of Sally Pacholok, who wrote, “Could It Be B12?: an Epidemic of Misdiagnoses.” Here’s the trailer: https://www.youtube.com/watch?v=kuiu5_T4zB4&feature=share

    • Chloe June 18, 2015 at 1:26 pm Reply

      I’ll have to watch it! Thanks so much for sharing!

  8. Sally Pacholok: the Movie | Be Well & B12 August 31, 2015 at 12:15 am Reply

    […] Even marginally low vitamin B12 levels can cause damage to the nervous system and can have deleterious effects on the body and mind. I have mentioned specific symptoms in previous blog posts. […]

  9. The Big POTS Study | Be Well & B12 August 31, 2015 at 12:53 am Reply

    […] getting enough vitamin B12, their autonomic nervous system is not going to be happy. My blog post POTS vs. Vitamin B12: a Venn Diagram, explains this […]

  10. Meredith October 23, 2016 at 1:15 pm Reply

    How are you doing today?

    • thereseguise October 23, 2016 at 10:18 pm Reply

      I am doing better with methylcobalamin shots, but I seem to need them every 8 -9 days, which I have heard is unusual. I have regained my ability to sweat. Yay! I still have a.m. tachycardia, exercise intolerance and chronic fatigue. My trajectory is good, but I am looking into the possibility that I have other things going on.

  11. Gabriel Marques November 4, 2016 at 10:45 pm Reply

    You described exactly my story. My improvement after 2 shots of B12 and supplementing Methylfolate, is like a miracle. I am healing so fast now but I do a lot of other things along with B12. After suffering so much I adapted my protocol from a lot of alternative doctors and it is doing wonders for me. I do a Paleo Auto-immune diet (anti-inflammatory), IV Push every week with Glutathione, CoQ10, Highdose Vit C, Mag, Zinc, etc, I supplement for my mitochondria: high dose B1 (1500mg/day), L-Carnitine 2g, Iodine 3mg, Omega3, Selenium 200mcg.
    I removed all my mercury fillings with biological dentist, and I do detox with Zeolite and other stuff in that IV Push.
    After 3 years of suffering from Chronic Fatigue, Anxiety, POTS, Irregular heart beat, depression, neurological issues, indigestion…
    After beginning B12 I see a shift in my health and finally I can dream of getting a normal life again. Depression is gone, anxiety is gone, pots is gone, irregular heart beat is gone, fatigue is improving every day. I prayed so much and god is giving me my life back but I admit, I had to dig very deep to find what’s best for me and the B12 shots were the turning point. I am waiting for my results for antibodies to intrinsic factor and parietal cells which will confirm if it is Pernicous Anemia or not. But I am 99,9% sure it is because it’s the first time in 3 years that I am feeling alive. It’s impressive the amount of misdiagnosed people out there who just need B12 shots because of the inability to absorb B12.
    Hope you get better. Functional medicine is helping me a lot with those protocols. B12 was just the key piece missing in my recovery. Without it, it would be a matter of months until i would need a wheelchair.

  12. thereseguise November 7, 2016 at 2:40 am Reply

    Gabriel. Thank you so much for your post. I’m thrilled for you that the B12 shots are helping you so much and you are experiencing such rapid improvement. I will look at adding some of the things you mentioned. Can you share why you take the methylfolate? I have some metabolic things going on and I just had my MTHFR tested to see if that is related.

    RE: Paleo-autoimmune diet: I am familiar with the Wahl’s Protocol and just ordered the author’s paleo (anti-inflammatory) cookbook. It will be out next spring. I wish continued improvement to you and am curious whether you will test positive to antibodies against intrinsic factor (indicating autoimmune pernicious anemia.)

    It is impressive the number of misdiagnosed people out there. It’s the reason for my blog. I haven’t added many posts lately, but continue to share this information with everyone I meet. I, too, feel blessed to have avoided the wheelchair.

    Be well and B12!

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