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Confused And Scared With Lab Findings


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When seeing cardiac specialist in dysautonomia who diagnosed the orthostatic hypotension, we discussed my history of hemorrhaging that more than a decade ago the hemeoncologist classified as 'Von Willebrands' even though I did not have that antibody (explaining they did not have sophisticated measures of all of the components involved with bleeding at that time). My cardiac specialist said that he knew exactly what it was and that it was not uncommon in dysautonomia. He said the test was recently found (by staff at University where he worked). He was correct. The lab test showed Delta Granule Pool Storage Deficiency (treated the same as Von Willebrand's depending on the cause).

So he instructs me to see hemeoncologist. As I was pondering why the deficiency with things within my platelets, I also got my labs from Infectious Disease specialist that show low T cells, low T helper cells, low IGg1, low IGg2 and other IGg subsets and low gamma globulins. My platelet count and white blood cell count are always ok--it is the things within them. I am wondering and worrying if I will have to have the bone marrow and needle biopsies to compare to the complete blood profile (especially since I am small, have osteopenia and am a bleeder). I'm getting scared because my appointment with the hemeoncologist is the day before Thanksgiving--approaching fast.

I was wondering also if this Delta Granule Storage problem is not uncommon (he knew immediately what it was), why I couldn't find any threads about it. And I thought I might throw this out there to you who bruise so easily with this dysautonomia to see if you might need checked.

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