The importance of proper Vitamin D levels in POTS patients

A new case report has been published regarding a 37 year old woman whose POTS symptoms were greatly improved after calcitriol supplementation.  Calcitriol is the hormonally active form of Vitamin D.  Vitamin D is normally converted into calcitriol in the kidney, but in some persons with a 1-α hydroxylation defect, this would not occur.  Here is the link to the article:

1-α hydroxylation defect in postural orthostatic tachycardia syndrome: remission with calcitriol supplementation.

Low Vitamin D levels are very common in North America and northern Europe, but it seems to be a universal problem amongst almost every POTS patient I have spoken with that has had their Vitamin D levels tested.  I wonder if the autonomic experts at Mayo and Vanderbilt and elsewhere have tested large groups of POTS patients for the 1-α hydroxylation defect, or looked at the portion of our genes associated with this process.

If you have POTS and you haven't already done so, ask your doctor to test your Vitamin D levels during your next visit.  In the meanwhile, make sure you eat plenty of healthy foods that have Vitamin D and that you get at least 10-20 minutes of sunshine on your skin everyday (sunscreen and clothing blocks Vitamin D production).

I have been on 1000 I.U. of a Vitamin D3 supplement, twice daily, for over a year, because my Vitamin D levels were very low when my doctor tested them.  I also make sure to get plenty of sunshine on my skin, since your body can produce it's own Vitamin D when your skin is exposed to natural sunlight.  Despite a healthy diet, supplementation and adequate sunlight, my Vitamin D levels still hover around the low end of the normal range.  I am going to bring up this case report to my doctor at my next visit and see what she thinks.

There is extensive medical literature on the role of Vitamin D in autoimmunity and overall immune system health - so much that I should probably dedicate an entire blog post to that topic.  Stay tuned...

Enroll in POTS/OI and EDS Research

This post is something I learned about from the lovely Kristina, who runs the Defy Gravity blog.  If you have POTS or another form of orthostatic intolerance and EDS, please check this out from the University of Washington:

Hypermobile EDS with postural orthostatic hypotension - search for identification of large kindreds.

Few disorders are more challenging than hypermobile Ehlers-Danlos Syndrome (formerly known as EDS type III) when trying to identify cause. Defining a population of patients with a clear clinical phenotype is an essential first step. We are actively recruiting individuals with hypermobile EDS and postural orthostatic hypotension (changes with blood pressure on standing or known abnormalities in autonomic testing) to recruit families with multiple affected family members with hypermobile EDS with or without autonomic alteration. The nature of the families and the number of individuals available will determine how each study is done. We will need detailed clinical information, may ask affected individuals to be seen in the Genetic Medicine Clinic at the University of Washington, and collect a blood sample to complete the study."

Contact information: Dru Leistritz, MS, CGC (dru2@uw.edu)