Hi Staying Strong. I continue to have neutropenia (low level of neutrophils, a type of white blood cell) but have not had my B12 measured since July 2012 so I’m unaware if its risen again. I want to encourage you to keep an open dialogue with your doctor or if need be, get a new one. Its ridiculous that she won’t discuss the bloodwork results with you, nor why she mentioned Polycythemia. If you’re anxious about your blood work results, your doctor needs to address your concerns and you have every right to ask her to do so.
re: B12 – Please know that I have NO IDEA if my gluten-free diet lowered my B12 level or if it was coincidence. All I know is that it was high and then it came down. Honestly I don’t understand how it could have dropped so dramatically through a diet change when I don’t see any literature regarding that other than B12 being related to gut absorption.?? It’s quite confusing to me! When I went on the very strict gluten-free diet, I lost weight which I didn’t anticipate or need to happen as I was thin to begin with. My choice of foods was limited and I was not a happy camper. Also, my symptoms continued to escalate so my disease process was in place by then and the gluten-free diet did nothing to make me feel better. As I said, the B12 level dropping may have been due to something else going on in my health crisis and may havehad nothing to do with the food changes. So, please discuss with your doctor first if you decide you want to go that route.
re: dysautonomia/OI – Unfortunately, I’ll admit my illness continues and I, like you, keep searching for answers.I have found a wealth of information on dinet.org POTS and dysautonomia. Perhaps there you will be able to find answers to your questions regarding your adrenaline rushes and possible drug treatments for your illness.
I know how frustrating and depressing this can get. I feel for you and sincerely wish you all the best in your quest for better health.
Charlie