Who In The Heck Will Order A Blood Volume Test

[sue1234]

I firmly believe I have low blood volume, but of course you won't end up on the right meds for the right cause until it is actually determined that there is a low volume problem. The few doctors I've been to have looked at every other cardiovascular issue EXCEPT blood volume. Anyone know a doctor/center that will test in the south that only requires an appointment with the doctor or center?

I was reading the great DINET newsletter, and saw Dr. Jaeger mention a couple of time that at their clinic they DO blood volume testing. I really can't travel far, but can go somewhere in the south.

[sarahmarie43]

I had a blood volume test at Vanderbilt in Nashville when I was there as part of a 12-day POTS study, so the nice thing was that I didn't have to pay for it. But I'm sure their outpatient autonomic clinic can test something like that. Hope that helps.

[erik]

I may be mistaken and am far from expert at navigating medical care... I investigated this test for myself and I think the "nuclear medicine" departments at most hospitals might be the ones to perform this. Basically, you need a doc that "has privileges" at the hospital to take you on at least in a minimal way (like 1 initial visit) and order the test on your behalf. The hospital I investigated this at has a "referral hotline" to call and they kind of helped me find associated doctors (I was hunting down tilt table & possible blood volume testing). Of course, if at all possible you'd want a doc that might know what to do with the results of the test! I'm not sure what that would be, other than things like fludrocortisone, salt, water, licorice... I guess NSAIDS help build volume maybe? Etc.

[ramakentesh]

Vandy stated that all POTS/OI patients had low blood volume - ranging from 3% below normal to much lower.

[potsgirl]

What do they prescribe, if anything, for this? The usual hydration, salt, Florinef?

Thanks!

Jana

[firewatcher]

In my case, they Rx-ed dDAVP (Vasopressin) to expand my blood volume.

I wonder, does it really matter if you know just how low your plasma volume is? My nephrologist (kidney doc) said that mine was so "perturbed" that no blood test that anyone ran on me would be accurate! Without a regular check of your volume status, how do you know if you are even doing a good job keeping it? I have to check my weight daily to make sure that I don't drink too much or too little; it can fluctuate by up to 6 pounds between days. My GP says knowing exactly how low my blood volume is would only satisfy my "academic curiosity" and not really solve any medical problems.

[sue1234]

My point is, I don't need to know HOW low the volume is, rather that the volume IS low. I was prescribed DDAVP, but before starting it, had tons of cardiac testing done. It showed my b/p can get kind of high being upright. So I never started the med. But, no one wants to delve into the issue that MAYBE my b/p goes high BECAUSE of a low blood volume, so taking something, whether DDAVP or florinef, would then lower my b/p. It's hard to find a doctor that will look at the absolute TOTAL picture.

I've found lately that most of the doctors I see look at issues from their perspective only, and not taking the time to look at the whole picture, which could be screaming something out to them. It gets very frustrating. Yea, I might now have kind of high b/p, but WHY? It could be an endocrine issue, a cardiac issue, a neurological issue, and so on. I think the doctors more or less say, ok, for blood pressure issues, we run tests A, B, C and D. Then we get the results and tell you you're normal or have high b/p. Okay, but WHY? They don't go that deep.

[firewatcher]

My point is, I don't need to know HOW low the volume is, rather that the volume IS low. I was prescribed DDAVP, but before starting it, had tons of cardiac testing done. It showed my b/p can get kind of high being upright. So I never started the med. But, no one wants to delve into the issue that MAYBE my b/p goes high BECAUSE of a low blood volume, so taking something, whether DDAVP or florinef, would then lower my b/p. It's hard to find a doctor that will look at the absolute TOTAL picture.

I've found lately that most of the doctors I see look at issues from their perspective only, and not taking the time to look at the whole picture, which could be screaming something out to them. It gets very frustrating. Yea, I might now have kind of high b/p, but WHY? It could be an endocrine issue, a cardiac issue, a neurological issue, and so on. I think the doctors more or less say, ok, for blood pressure issues, we run tests A, B, C and D. Then we get the results and tell you you're normal or have high b/p. Okay, but WHY? They don't go that deep.

What part of your BP goes high? I had a BP of 135/112 a couple days ago and that is pretty much normal for me every morning. It will lower after the dDAVP and propranolol. My BP skyrockets with orthostatic stress instead of dropping. I was told that I was highly vasoconstrictive (a peripheral pulse cannot be felt when upright.) Another issue that I have that mixes with the hypovolemia issue is the viscosity of my blood and the hemoconcentration. My blood osmolality (viscosity) is higher than it should be because of an overall lack of plasma and it shows hemoconcentration of red blood cells (high RBC, Hematocrit and hemoglobin.) My heart has to pump harder to push the thicker blood through my body, so my vessels must constrict harder to keep it going through the system.

Now days, you will find that all doctors will look at you from their specialty ONLY. They have no training or "jurisdiction" over the medicine of the other systems. Personally, I think it is a litigation thing (they don't want to get sued for treating something outside their specialty---which is a real possibility) so they don't venture outside their medical comfort zone.

[sue1234]

My blood pressure is similar--it goes up with standing. Yesterday it went from lying 125/77 to standing 5 minutes,

141/100, and it felt like a big adrenaline rush at that point. I felt awful. I pretty much had to sit for about 3 hours before I went back to feeling okay.

I think it is the lawsuit thing too, that keeps them from digging. It's too bad it's at that point.

They need to have true diagnosticians, like House!