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Blood Volume Test


noajid

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both my cardiologist and my neurologist have told me that there?s NO WAY i could get a blood volume test, unless i was willing to pay thousands for it...

how am I supposed to find out if I have low blood volume? is there any specific name for this "low blood test"?

and if I do have it, what difference does it make?(i know a little about the effects of it, but I already do what you gals do to treat it - a high salt/fluids intake diet- so nothing would change in my life)

anyways, I would love to know if I have it, cuz I also suffer from another terrible disease: CURIOSITY! :) i can?t stand not knowing whether or not my blood volume is below normal...

take care you all

noam

P.S: i?m a potsie

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There are several different tests available--but I have no idea about cost. You might want to use the search feature as this topic has come up before with regard to what test (not about cost though).

Mine was done via a test for "total blood volume" using a nuclear medicine department at a local hospital. The test involved taking some of my blood, tagging it with a radioisotope, reinjecting it, then a specified times, taking more blood from me and calculating blood volume based on home much of the isotope was present. The test showed red cell mass, white cell mass and total volume. My red cell mass was slightly low, and my total volume was low.

For a long time, I did really well on florinef to bolster my volume, but after stopping florinef for a while, we were never able to reintroduce it without causing my baseline blood pressure to go way too high.

Nina

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though by NO MEANS FOOL PROOF, I have read if the blood pressure is narrow (top and bottom numbers close together, like 90/80 or 100/85) that shows your blood is NOT circulating to all needed body areas and PROBABLY due to low blood volume.

When I saw Dr. Grubb in August 2001 and asked him specifically if the narrow numbers can mean low blood volume, he said "yes" but it wasn't fool proof.

But my severe, HORRENDOUS lightedness, and inability to think, points in that direction. I can't just sit down and feel better but have to have feet near heart level or over my head to recoup from pre-syncope stuff.

I had an article on this subject once on my computer...I will see if I can find it...I think it was by Dr. Bell and also mentioned Dr. Streeten in it.

Here is the article I mentioned.

http://www.anapsid.org/cnd/diagnosis/oi.html

Many times the nurse at my ANS docs office (he is endocrinologist) MISS the beats checking my pulse. They get 68 or 72 when it is really about 130 when sitting.

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Hello!

Last year I asked my PCP if I could get my blood volume checked with hopes that if it was low I could look into taking Procrit. He sent me to a hematologist who told me that his method for Blood Volume analysis was just not accurate enough (this was the Tag Method). I then searched for a method that he would deem "worthy" and I found the latest and most accurate Blood Volume test available. (After reading about it he agreed and ordered it for me) The Daxor corporation has a semi-automated blood volume analyzer that's being introduced in major hospitals across the country. You can read about it at:

http://www.daxor.com/bva100.html

I ended up flying out to Washington DC to get my test performed (Washington Hospital Center) as there aren't any hospitals in KY who have this test yet. I, like you, was curious to know for sure if I was hypovolemic.

I ended up having a 35% deficit of Red cells, a 19% deficit in Total blood volume, and a 11% deficit of Plasma. They calculate how much blood your individual body should have using your height and weight and go from there with the percentages.

I did end up trying Procrit injections and they didn't seem to work for me. It was pretty disappointing because "on paper" they should've helped. Many on this forum have been helped by Procrit (Epogen) so it's definitely worth a try if you can get your insurance to cover it.

For me the insurance company covered the blood volume test and Procrit without any problems and they didn't even need any explanations. Others on this forum have had to fight for it.

I should definitely add though that I saw Dr. Grubb for the first time this past May and he said that he doesn't really recommend blood volume testing because it's so expensive and most of us POTS patients are already doing all of the things we should to pump up our volume. (At this point I had already had the test and tried Procrit)

I understand your curiosity and I like having the results on paper - especially when I face dr's who don't understand what's going on.

If you have any questions feel free to email me.

Hope this helps in some way, :)

Lisa

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both my cardiologist and my neurologist have told me that there?s NO WAY i could get a blood volume test, unless i was willing to pay thousands for it...

how am I supposed to find out if I have low blood volume? is there any specific name for this "low blood test"?

and if I do have it, what difference does it make?(i know a little about the effects of it, but I already do what you gals do to treat it - a high salt/fluids intake diet- so nothing would change in my life)

anyways, I would love to know if I have it, cuz I also suffer from another terrible disease: CURIOSITY! B) i can?t stand not knowing whether or not my blood volume is below normal...

take care you all

noam

P.S: i?m a potsie

I had my blood volume tested at The Cleveland Clinic Syncope Clinic. they took care of getting it authorized by my insurance company. You may want to contact them. RobinBZ

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