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.
Dysautonomia International also has a Facebook site:
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!
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.