I heard back from Dr. Joy today, my POTS test came back positive, which means I for sure have POTS. The way they test for it is by having you lie down for 30 minutes and drawing your blood, and then having you stand up for 30 minutes and drawing your blood while standing. Drawing my blood while standing nearly made me pass out, which is a POTS response, not a fear of needles but an androgenic response. What happens, and what they test for is a change in norepinephrine levels when drawing the blood in the supine position vs. standing. If you have POTS your levels will be higher while standing due to an androgenic response. If you test positive then you for sure have POTS, if you test negative, then you can still have POTS. I tested positive, and my standing noepinephrine levels are over 2 x the reference levels, which is very high.
What this means for treatment, I have no idea. Dr. Joy says I am a strange case because I have basically learned to self-manage most of my symptoms and prevent them from worsening intuitively. All of the lifestyle things they would have me do I am already doing, and have been naturally drawn to because I have figured out how to make things better. She doesn't want to put me on a beta-blocker because I am a runner and she says I would hate it. She is consulting with other Dr.'s to see what my treatment options are, but in the mean time my symptoms are generally much improved with the sodium and potassium increases, and I will be working with Elena to figure out if there are ways to improve the blood sugar fluctuation issues during endurance events.
Overall, I feel positive that we are going to figure this thing out and that my running and ability to finish races will improve as we figure out what works and what does not.