firewatcher Posted October 31, 2008 Report Share Posted October 31, 2008 For those of you with confirmed low blood volume: what were your symptoms that caused your doctor to want to measure it? Was is a blood pressure thing? or were other test "off" too? What were your symptoms? Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 1, 2008 Report Share Posted November 1, 2008 Hi,I was diagnosed with Psychogenic Sycope and POTS and my internist wanted to know if there was medical proof of a physical disorder.I have all the POTS symptoms listed on Dinet. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 1, 2008 Author Report Share Posted November 1, 2008 Was it a stab in the dark by the doctor, or was your blood-work wonky too? Did you have narrow pulse pressure? Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 1, 2008 Report Share Posted November 1, 2008 Hi,I have a very very very labile BP. It can go from 210/190 to 0 in 15 seconds which makes me faint. As far as I know, he only had done simple blood work (no catecholamines). So his decision to do a blood volume is because he knows that some patients with real (physical) syncope have also low blood volume. He wanted to prove that I was a fake but when I got tested it result showed that I lack 2 liters (40%) of my blood volume. He was dumbfound because he was sure I had not physical medical condition. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 1, 2008 Author Report Share Posted November 1, 2008 Ernie, whooops! did the doctor apologize for thinking you were nuts? (when you were in a state of chronic shock) Is he still your doc? Did that show up on any blood work as anemia or high hemoglobin? Did it effect your kidney function? Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 1, 2008 Report Share Posted November 1, 2008 Hi,He told me he was surprised I had low blood volume because he tought I was a fake case. He never apologised. He put on the first page of my medical file that I am a nut case. I asked him to change the diagnosis and he refused. So, I had to drop him off (he was p.o.) when I went to see Dr Grubb who gave me medication that decreased the syncopes. He told me to choose between him or Dr Grubb. The choice was not hard to make even if this doctor his 5 miles away and Dr Grubb 14 hours away one way. I also changed hospital because everytime I went there they would read the top sheet where it says ?Psychogenic? and would not treat me at all.It did not show as anemic because I lack both 1 liter of plasma and 1 liter of red blood cell.I am now on Procrit and am tested every month. It still does not show anything on a regular blood test. I had only volume test with the medication and it shows that I now lack 1 L of blood. So it proves that the medication is helpful in my case. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 2, 2008 Author Report Share Posted November 2, 2008 Ernie, I wish I could say that I am surprised by your ex-doctor. I am developing a rather large chip on my shoulder about all this. I am fortunate in that the two doctors who actually have degrees in psychiatry and psychology were the ones who were saying that all this was not "in my head." I am hopeful that Vandy will do a blood volume assessment. My labs are all screwed up: elevated hematocrit and creatinine, 233% of predicted lung diffusion and very narrow pulse pressure (no one, not doctors or nurses can find a peripheral pulse in me and my heart rate plummets when they press the carotid to get my pulse there.) IF I am hypovolemic, it could explain a lot. I keep going over articles from Dr. Raj and Dr. Robertson about the blood volume issues and "the aldo-renin paradox" and my numbers don't look like anything in their studies. One week and I may have a couple answers...I hate waiting. Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 2, 2008 Report Share Posted November 2, 2008 Hi,You can ask for a blood volume test from your doctor. Quote Link to comment Share on other sites More sharing options...
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