Addison-Biermer Anemia (aka Pernicious Anemia) and its relation to POTS symptoms

lentil soup nov 2014

Here in the Midwest, it’s 23 degrees below the average temperature for this date. It’s soup weather. It turned out it was also a good day to catch up on some correspondence and research.

My search for a clear explanation of POTS was inspired by a conversation with an old friend; we had not spoken in years. He asked about my health and, once again, I tried to explain my lingering symptoms of POTS (Postural Orthostatic Tachycardia Syndrome)–why, although I have a “real” diagnosis now and a treatment (though not a cure), I continue to experience tachycardia (rapid heart rate), chronic fatigue, and other persistent symptoms.

I am one of the lucky ones– I did finally find a cause for my POTS symptoms. In Wisconsin, I saw fifteen doctors and, with an “impressive” tilt table test at the Wisconsin Heart Hospital, and, after decades of searching for what was wrong with me, I got a diagnosis of POTS.  Four years later, in February of 2012, Dr. Joe, finally made a more correct diagnosis of pernicious anemia; he isolated the actual cause of my POTS symptoms. He said pernicious anemia accounted for all of my POTS symptoms. He said it would be “a long haul” to healing, and to hopefully reversing the nerve and other damage that has been done from depriving my body of vitamin B12 for many years. I received many misdiagnoses and doctors missed the diagnosis of pernicious anemia for decades, partially because my blood (CBC–complete blood count) did not exhibit the typical (now I know late stage) changes with vitamin B12 deficiency. To make my case even tougher to diagnose, the one doctor who did test my vitamin B12 blood level, found it to be technically in “normal” range and ruled out B12 deficiency as a possibility. It turns out nerve damage can happen even when one’s vitamin B12 level tests “normal” because there is a significant part of the population that is actually deficient in “normal” range.* I say the lab parameters need to be changed. Most doctors don’t seem to know this, though I keep finding on websites that further testing needs to be done (homocysteine level or MMA–methylmalonic acid) if a patient’s serum vitamin B12 level is “low-normal” but they are symptomatic. I was very symptomatic and had textbook signs of vitamin B12 deficiency, which turned out to be caused by pernicious anemia (Addison-Biermer Anemia).

Yes, nerve destruction can and does happen while the blood does not exhibit changes typically found in vitamin B12 deficiency. I’m living proof. Internet Scientific Publications (ISPUB.com) gives a thorough description of the various impacts of vitamin B12 deficiency on the nervous system.

In the course of my search for information, I found Web sites related to POTS , pernicious anemia, and autoimmune diseases. I found out that pernicious anemia is also known as Addison-Biermer’s anemia. I also found that autoimmune disorders can sometimes come in clusters; for instance, people with Addison-Biermer Anemia can have a coexisting autoimmune thyroiditis. Interestingly, I have two sisters with Hashimoto’s thyroiditis.

I have now been taking injections of vitamin B12 for about three years, and, though I’ve made some gains, I continue to experience many of the POTS symptoms. The description of POTS–what it is, and what it is not (it is not anxiety)– by Dysautonomia International, is one of the best I’ve ever come across. Their site also has a comprehensive list of lifestyle adaptations for those experiencing POTS symptoms.

http://www.dysautonomiainternational.org/

Dysautonomia International also has a Facebook site:

https://www.facebook.com/DysautonomiaInternational

There are many POTS and dysautonomia informational and support sites on Twitter as well.

 

* About 5 – 10% of those in “low-normal” (200- 400) range, according to the asterisked note on my 2012 B12 lab result. As I recall, the lab was Dynacare Lab.

 

Be Well & B12!

tulips cinco de mayo

 

This photo has absolutely nothing to do with pernicious anemia or vitamin B12, but it’s 9 degrees Fahrenheit and I need a reminder what spring will hold.

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14 thoughts on “Addison-Biermer Anemia (aka Pernicious Anemia) and its relation to POTS symptoms

  1. Angie42 April 23, 2015 at 3:23 am Reply

    Hello. I’m 42 years old from Ohio looking for a doctor who will check my b12/homocysteine levels before my cardiologist decides I have POTS. I just had testing today. No tilt just yet. He is THAT convinced that I have a “neurocardiogenic syndrome. ” I spoke with him for a moment today after stress/echo/carotid ultrasound and without knowing my results he is you know what bent on being right in that I have some kind of dysautonomia. I asked him to test my b12 and he said no because my general labs are within normal range. Do you have any advice on what I should do? No GP due to the fact he doesn’t accept current insurance. I feel so trapped. Thank you so much. I’ll travel…

  2. Angie42 April 23, 2015 at 3:25 am Reply

    P.S. I have Hashimoto’s Thyroiditis. Thank you. :/

  3. thereseguise April 23, 2015 at 3:57 am Reply

    Here’s more information about how sneaky B12 deficiency can be:
    http://www.health.harvard.edu/blog/vitamin-b12-deficiency-can-be-sneaky-harmful-201301105780

  4. thereseguise April 23, 2015 at 4:09 am Reply

    This is a thorough article about the neurological manifestations of vitamin B12 deficiency:
    https://ispub.com/IJNW/2/1/4476

  5. Angie42 April 23, 2015 at 4:33 am Reply

    Thank you for the info! This is very helpful to know that I’m not alone. I’m so glad to have found your blog!

    • thereseguise April 23, 2015 at 4:47 am Reply

      Angie, you are so welcome. I sent you an email with more info, but just ran across this amazing site:

      https://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences/

      When you do get your B12 level checked, keep this in mind (excerpted from aforementioned site):
      “In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.”

    • thereseguise April 23, 2015 at 4:57 am Reply

      Angie: From the same Chris Kresser site: “One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment is relatively easy and cheap – especially when compared to treatment of the diseases B12 deficiency can cause. A B12 test can be performed by any laboratory, and should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com for $60. “

    • thereseguise April 23, 2015 at 5:05 am Reply

      I’m on a roll. This from the CDC site: http://www.cdc.gov/ncbddd/b12/detection.html

      “After conducting a thorough history and physical examination, if you suspect vitamin B12 deficiency, you should include a complete blood count (CBC), peripheral blood smear, and serum cobalamin (B12) as part of the initial laboratory assessment.58 The serum cobalamin test is readily available and generally affordable, and can detect low serum vitamin B12 levels even among patients who are not anemic.59,60 However, not all patients with a vitamin B12 deficiency will have hematologic manifestations.”

    • thereseguise April 23, 2015 at 6:36 pm Reply

      You are not alone. To build on my last entry…”However, not all patients with a vitamin B12 deficiency will have hematologic manifestations.”

      It is beyond disappointing that your cardiologist won’t test your B12 and homocysteine levels. I’m guessing, as with the cardiologist I had in Milwaukee who would not pursue my B12 deficiency symptoms, that your cardiologist is looking at your red blood ell count and morphology (shape and size of the RBCs). These changes to RBCs happen in most cases of B12 deficiency, but not all. I am living proof of that. My red blood cells did not exhibit the changes normally associated with B12 deficiency, yet I tested positive for the intrinsic factor antibodies test (B12 deficiency due to pernicious anemia). There is a “low normal” level at which the blood will not exhibit abnormalities but there is damage being done to the nerves (B12 is needed to make the myelin sheath around the nerves).

  6. tracy June 16, 2015 at 8:56 pm Reply

    Hi, I am wondering how you are doing now.

    I am a fellow pernicious anemia (PA) sufferer as a result of a long term B12 deficiency, diagnosed late October 2014. I’m pretty sure I have POTS symptoms which seem to be getting worse. Like you, nothing was amiss in my blood tests. This is because these days flour and processed foods these are fortified with folic acid, which can suppress the size of red blood cells so the MCV (mean corpuscular volume, measures average size of the red cells) remains in the normal range so doctors aren’t aware of the problem. My MCV is high normal, but not out of the range.

    My B12 deficiency became strongly apparent after foot surgery. Things about the foot that had the surgery just didn’t feel right. Then I got very ill. Took 3 months to figure out what was happening, by then I had shooting pains up and down my legs, needed a walker for mobility, severe psychological symptoms, etc.

    As a result of this deficiency, I have small fiber neuropathy (SFN) which has resulted in erythromelalgia (red feet, especially at night) and anhidrosis (sweat very little, danger is overheating). I suspect POTS is related to the SFN. I went to the Mayo Clinic in Minnesota to learn this, my HMO docs in California did not help explain these symptoms and did not diagnose B12D and PA until I was in a very bad state. They think they can just give me a monthly B12 shot and I’ll be just fine. They are wrong.

    In my opinion, the B12 test should be added to the standard CBC complete blood test. Doctors just aren’t aware of the symptoms of B12 deficiency as it can mimic so many other things.

    • thereseguise June 18, 2015 at 2:08 am Reply

      Tracy. Thank you for asking. I still have POTS symptoms. I had nearly complete anhidrosis, but after about three years of B12 injections, am getting the ability to sweat back. I’m not familiar with SFN or; thank you for posting about that and erythromelalgia. I have had very strange mottling of the skin on my legs during hot weather, but that seems better as well.

      I’ve heard of folic acid masking the red blood cell changes that would normally be a part of a B12 deficiency. It sounds like you went way too long without a correct diagnosis. I’m so sorry. I completely agree that a Vitamin B12 level should be a routine part of lab testing, as is a CBC. In addition, that labs will start using a lower threshold parameter of 400 pg/uL instead of 200 as is currently the case.

      I’m not surprised your severe symptoms followed foot surgery. Sally Pacholok, who wrote “Could It Be B12?: an Epidemic of Misdiagnoses,” talks about a certain anesthesia which binds with B12 and prevents absorption. In searching her name for spelling, I just ran across a movie trailer. It looks as though she had a movie released this past February. Here’s the movie trailer: Sally Pacholok: https://www.youtube.com/watch?v=kuiu5_T4zB4

      Vitamin B12 is key for myelin sheath formation on the nerves. It looks as though literature states that nerve damage from lack of B12 usually hits the large nerves in the legs first. It follows that there would be nerve damage without sufficient B12 available. Again, I’m unfamiliar with the SFN, but I’m not surprised you have POTS, which my first cardiologist said is a neurological disorder, not a cardiology issue.

      I’m so glad the Mayo Clinic was able to correctly diagnose you. I wish you well and improving health.

      Therese

      • tracy June 28, 2015 at 8:20 pm

        Therese,

        Mayo Clinic only diagnosed small fiber neuropathy, anhidrosis, erythromelalgia and a possibility of POTS. Tilt table test was not definitive. Even now sometimes I get palpitations and feel very light headed upon standing up and other times I don’t. B12D didn’t affect my large nerves as much as it does for some people. I never experienced severe balance issues and once I started treatment that largely went away. What hasn’t gone away is the foot soreness.

        Did your doctor suggest more frequent B12 injections? My doctors (and family) think I am crazy that I sense I need more, but my symptoms do start coming back after a couple of days otherwise (pins and needles in feet and hands). Lately I have been using high dose pills sublingually (5000 mcg methylB12, one or more a day) in between monthly shots but am considering resuming more frequent shots. I know where to get injectable methylB12 but it is expensive, much cheaper to use oral tablets.

        I’m stuck in my HMO until 2016 when my husband and I can change providers through his employer. I have not found a doctor in the system that knows anything about PA other than what’s on their computer database so I have to handle supplementing on my own. This is proving to be difficult as appears other supplements are required to go along with B12. For me it’s largely been a guessing game: magnesium (for cramps), folate, vitamin C, potassium (apparently when the body starts making more red cells it can deplete potassium; get mine by eating bananas, avocados, and drinking coconut water and orange juice). What supplements were you prescribed?

        After a shot I get very shaky and have a sore lower back for a couple of days. Unsure if the shakiness is POTS or something else like a side effect of a jolt B12 going to work making blood cells and DNA. Sore lower back — disc bulge were noted on an MRI last fall but docs say no signs of nerve compression. Pain in my feet is less those days I am mostly lying down, don’t know what to believe as days when I’m on my feet a lot they really get sore so perhaps I do have nerve compression.

  7. thereseguise July 3, 2015 at 8:54 pm Reply

    Tracy,
    I am actually in the process of cutting back the frequency of my methylcobalamin injections from weekly to every other week. I have been having a lot difficulty with the new schedule, ergo my delayed response; I’ve been having a lot of fatigue, dizziness, and other POTS-type symptoms. I know a lot of doctors don’t recommend weekly shots, but, thankfully, my current doctor is on board with me doing it, though he says I am “getting too much B12.”

    That said, once-a-week B12 shots are not a panacea. Even with weekly shots, I go through periods of extreme fatigue and other symptoms, and it usually that I’m trying to do too much–make “hay” with the little uptick in energy.

    I do not experience any soreness in my low back after B12 injections. I’ve heard it can sometimes lead to kidney stones, so I stay well-hydrated. I sometimes do experience leg and arm jerking, along with insomnia, the night or two after an injection. This was especially marked when I first started the shots. I’m not sure why this happens–maybe the nerves are becoming active and functional again?

    I know the Pernicious Anaemia group in England is looking at every 2 week or every 10 day injections in some of their studies. Sally Pacholok, in her book, “Could It Be B12?” says that some patients seem to metabolize it faster and need weekly shots.

    I hope this helps.
    Take care,

    Therese

  8. thereseguise July 3, 2015 at 8:56 pm Reply

    Here is the Pernicious Anaemia Society website:
    http://www.pernicious-anaemia-society.org/

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