HopeSprings Posted May 7, 2011 Report Share Posted May 7, 2011 The theory is we have low blood volume causing many of the symptoms. I had a blood volume test (nuclear medicine test) a few years ago and it showed my blood volume to be perfectly normal. The last POTS Dr. I saw was talking about low blood volume and all the things to do to help it. I showed him my test results and he said something like "well, your body is acting dehydrated (or like it has low blood volume)." What does that mean? Either you are or you aren't, right? Is there any point in doing all salt, water, raising the bed, Florinef etc. if your blood volume is FINE? Is the test definitive? Anyone else been tested? What are your thoughts about all this? Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 7, 2011 Report Share Posted May 7, 2011 Naomi,Your nuclear medicine test was normal at the time it was performed, but that doesn't mean you don't go in and out of a low blood volume state. I have chronic-ish hypovolemia. It's a decreased volume of circulating blood in the body and it causes tachycardia. Dehydration can cause it, but bleeding is another cause. Orthostatic hypotension is one of the signs/symptoms, but it's another chicken and egg thing. It's usually diagnosed by signs/symptoms and drawing blood chemistry; CBC and sometimes kidney function tests. I drink plenty of Powerade Zero to stay hydrated and it helps a lot. Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 7, 2011 Report Share Posted May 7, 2011 I had that test 4 times and they were all positive. 2 were done without medication and 2 are done with Eprex and I am still hypovolimic but less so. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 9, 2011 Report Share Posted May 9, 2011 One other sign of hypovolemia is a narrowing pulse pressure, if your systolic and dialostic move closer together when you stand.........you might be hypovolemic. Quote Link to comment Share on other sites More sharing options...
lissy Posted May 9, 2011 Report Share Posted May 9, 2011 Yes I am hypovolemic, but I guess it is a part of dehydration haven't really figured out the exactly relevance of it yet so I can't say much else. Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 9, 2011 Report Share Posted May 9, 2011 One other sign of hypovolemia is a narrowing pulse pressure, if your systolic and dialostic move closer together when you stand.........you might be hypovolemic.Oye, the narrow pressures. Good point. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 9, 2011 Author Report Share Posted May 9, 2011 Just bumping this up for a minute. This is really an area of curiosity for me. I'm surprised more people haven't had this test done? since Blood Volume is the thing Doctors seem to talk about the most with POTS. I'm not really sure I understand what is meant by blood volume? Does this mean one literally has LESS blood than you're supposed to? When I look up hypovolemia, all I come up with internal or external bleeding as a cause. And there is an article by Bell that talks about finding hypovolemia in many CFS patients through the same test that I had done. Victoria - are you saying blood volume changes so frequently that you think test results are kind of meaningless? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2011 Report Share Posted May 9, 2011 Naomi, I suspect I have hypovolemia. I have asked numerous cardiologists if they could measure my blood volume, and they just kind of ignore my request! It amazes me, like you said, that hypovolemia is a key and prominent part of POTS, and they don't want to quantify it. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 9, 2011 Report Share Posted May 9, 2011 Just throwing this out, are some of us only hypovolemic when we pool? Either in our peripheries or splanchnic regions, so if we're tested laying down......we're normal. But when we stand, all bets are off. Quote Link to comment Share on other sites More sharing options...
cmruls Posted May 9, 2011 Report Share Posted May 9, 2011 So that's not really hypovolemia, it is normal volume with pooling, mal-distribution? So lying down is normovolumia and standing the blood pools in the legs and you act like you are hypovolumic but you really are not?So you want to be hypervolemic so that when you stand and the blood pools in your legs, the rest of the body will act like you are normovolemic? Quote Link to comment Share on other sites More sharing options...
redoctober Posted May 9, 2011 Report Share Posted May 9, 2011 Just throwing this out, are some of us only hypovolemic when we pool? Either in our peripheries or splanchnic regions, so if we're tested laying down......we're normal. But when we stand, all bets are off.Personally speaking, I tend to think that I'm more symptomatic when I get stomach pooling...which can create a viscous cycle for me with worsening GI symptoms as I tend to be IBS-C as well...especially when anxious or stressed. Not a good situation. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2011 Report Share Posted May 9, 2011 I think I am truly hypovolemic, even when sitting. Since developing POTS, the skin on my hands and arms has turned into what I compare to an old 45RPM vinyl record--all those grooves is how my skin is on the back of my hands. And, it tents up when pinched, so to me that signals some form of dehydration(even though I consume a gallon of fluid a day ). Quote Link to comment Share on other sites More sharing options...
lissy Posted May 9, 2011 Report Share Posted May 9, 2011 I was tested laying and sitting they basically said the positional change was to show where my blood flowed and didn't move back when it was suppose to at the accurate speed , actually mine was hyper-kinetic and low vascular reactivity. I also questioned after reading it in detail the best I could wouldn't I be some sort of anemic with low blood volume but was told No because anemia changes the size and shape of your blood cells and even though I don't have enough blood mass I have what I'm suppose to within the blood.I guess thats why a transfusion wouldn't help.I pool sitting and standing.....Hope this helps.Lissy Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 9, 2011 Report Share Posted May 9, 2011 I have been confirmed to have low blood volume by Cleveland Clinic. They say I have 10% less blood volume than the "normal" person. I have hyperkinetic circulation as well.Angela Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 9, 2011 Report Share Posted May 9, 2011 Victoria - are you saying blood volume changes so frequently that you think test results are kind of meaningless?Naomi,I think blood volume changes are incredibly important, and in my case it changes frequently. You weren't hypovolemic during your nuclear test, but that doesn't mean you haven't been (or aren't) hypovolemic at other times. It's all about timing. . . . Like when I go to a long awaited doctor's appt. and my BP is pretty normal when the nurse takes it, but it was 65/33 just two hours earlier? Quote Link to comment Share on other sites More sharing options...
songcanary Posted May 9, 2011 Report Share Posted May 9, 2011 Angelika,I was at Cleveland Clinic too and I didn't have the blood volume test because of my iodine allergy. But my summary says that I have hyperkinetic circulation as well. Can you tell me what that means exactly? I haven't seen my EP since the test. Is it the same as hyperadrenergic? Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 10, 2011 Report Share Posted May 10, 2011 Angelika,I was at Cleveland Clinic too and I didn't have the blood volume test because of my iodine allergy. But my summary says that I have hyperkinetic circulation as well. Can you tell me what that means exactly? I haven't seen my EP since the test. Is it the same as hyperadrenergic?I believe that just means "fast". Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted May 10, 2011 Report Share Posted May 10, 2011 Hi there. I'd like to share a few points regarding nuclear medicine blood volume studies. Twenty years ago, when I trained as a nuclear medicine technolgist, we performed blood volume studies using two different isotopes, one (Chromium-51)to calculate red cell volume and a second (Iodoine-125)to calculate plasma volume. Both components are needed to determine Total Blood Volume. Over the past decade, the radioisotopes used to perform these studies have become unavailable for long stretches of time and many nuclear medicine departments have stopped offering these time-consuming studies. Last year, when I was diagnosed with OH, I couldn't find a hospital in my state (WI) who was still performing this procedure, and the neurology department at my local medical college couldn't figure out how to order a blood volume study with their new computer system, so I guess this may be a problem as well, even if a nuc med department is willing to start performing them again. Several years ago, a new technique for performing blood volume studies was approved by the FDA, but few nuc med departments have had the need/patient volume to obtain this equipment and set up this procedure. I am not sure if there are billing codes for this procedure, which could be another hang-up. I am sharing a link to a journal article on this new procedure, in case it can help someone find a department willing to pursue this procedure. Still figuring out how to add link. You may have to cut and paste. http://tech.snmjournals.org/cgi/content/full/35/2/55Towards the end of the article, there is a one-liner about POTS as a possible pool of patients. Lyn Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 10, 2011 Report Share Posted May 10, 2011 Thank you for that article on the blood volume analysis. Last year I looked up on the Daxor website to see what institutions had one and found a major university hospital that had it. I then made an appt. with a cardiologist connected with that facility, and as part of my initial visit, asked if we could measure my blood volume. He somehow skimmed over that statement and changed the subject.What gets me is I could have(probably so) been spending my last 5 years without enough blood volume, and no one will check so that, if I am deplete, I can try Florinef.I have been a VERY proactive patient in trying to get the correct tests and even handing the medical literature to the doctors of possible links to POTS. The doctors simply explain it away or ignore it. It is SOOOO hard to get adequate care. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 10, 2011 Author Report Share Posted May 10, 2011 Sue - you are so on top of things! My test was ordered by Dr. Stewart and done at Westchester Medical Center using the Daxor equipment you mentioned. I talked to the tech there and he said this is the Gold Standard test now. So I feel pretty confident that my results are accurate and I do NOT have low blood volume. And if it's true that blood volume changes constantly, what would be the point of the test? You'd never be able to rely on the results. Dr's must know this. If I were you, I'd want to know too and would push for the test. I personally like concrete evidence.I wish Dr's would stop assuming we all have low blood volume and prescribe mainly around this. This isn't a one size fits all situation. And I feel like it gets in the way of finding out what's really wrong. And let me ask again - what IS low blood volume? Is it that you actually have less blood than your supposed to? How can that be? Here's a little article about the test:http://www.redorbit.com/news/health/537813/daxor_announces_westchester_medical_center_of_valhalla_ny_acquires_blood/index.html Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 10, 2011 Report Share Posted May 10, 2011 Naomi funny how Dr. Stewart ordered this test for you, it was his research that shows we're all (high, normal and low flow POTS) thoracic and cerebral hypovolemic when we stand. I would say very few of us are always low of total blood volume, but if Dr. Stewart is ordering this type of test maybe I'm not understanding his research on hypovolemia. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 10, 2011 Author Report Share Posted May 10, 2011 Todd - I am totally confused myself (on this whole issue really). I think what you're talking about is the difference between hypovolemia and "pooling." Quote Link to comment Share on other sites More sharing options...
Neshema1 Posted May 11, 2011 Report Share Posted May 11, 2011 I had my blood volume analysis at Vandy and it was severely low (30%). As I understand it, when blood pools (e.g. to the stomach after eating to help digestion, or upon standing POTS patients don't compensate for the redistribution of water and blood), the blood and oxygen to the brain are decreased. I imagine one might have pooling without hypovolemia, but dont quote me on that. Seems CHF causes pooling, and im not sure they have hypovolemia. Also, hypovolemia can be caused by trauma to the body and severe bleeding. Sodium co-transports with Norepinephrine. Sodium is often lacking in POTS, and NE is overproduced but not absorbed in the receptor cells of the synapse. So, we often end up in a state of hypovolemic-hyponatremic shock (there are 4 or 5 grades, I think). So, the amount of blood volume depletion is a major criterion for which grade you would fall into. I had the Daxor test myself and was kind of shocked to hear the results. I do have blue hands and feet but no ankle swelling. I have super wacky high NE levels and autoimmune disease and neuropathy. So. I think the movement away from the POTS subtypes is driven by the lack of empirical statistical subtyping analysis, and the dependence on clinical observations by the docs who see lots of patients. However, as we all know, we all differ to some degree. and that may have to do with where in the vicious cycle things went wrong. The NE and BVA and hyponatremia all seem to play off each other. So. ya know it's very frustrating for patients. IF your BVA comes back severe today, it seems clear that expansion of blood volume is a goal in tx, along with hydration. If it comes back negative, it just might mean, at this point it hasn't gotten to that part of the cycle. If your NE is high, you likely will have labile BP, and the nasty potsy seizures. I had one on the TTT. I used to pass out cold. Now I fall more than pass out completely. I tend to have the convulsive syncope, which can be quite unpleasant. They happen most often when blood pools to my stomach after eating a few bites (I know it's coming). Some ppl pass out right away on the TTT without compensatory rise in HR. Some called my TTT result a "spell," whatever that means! Regardless, my tachy goes incredibly high and I have an ILR. I'd say after being around the block with all this, I wouldnt get too dependent on any one test result being positive to prove you have dysautonomia. Mine has progressed quite a bit, and what may have been normal once, sure isnt now. So, I will go so far to say I am not convinced POTS can't kill us, but I also go to another galaxy to get help so I can help the other patients someday. And, while I am ranting and raving (sorry friends!), I (wow. POTS moment) my last point is gone..poof! Love when that happens. UGH! OK. enough ramblings. Hope something I said was helpful to someone. Hugs to u all! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2011 Report Share Posted May 11, 2011 Neshema,Did you have the test done at Vandy as part of their research study or as an outpatient office visit?Hey, save the address of that galaxy--we may all need a visit! Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 11, 2011 Report Share Posted May 11, 2011 We used impedance plethysmography to assess regional blood volume redistribution during upright tilt. Thoracic blood volume decreased while splanchnic, pelvic and leg blood volumes increased for all subjects during orthostasis, but were markedly lower than control for all POTS groups. The data demonstrate enhanced thoracic hypovolemia during upright tilt and confirm that POTS is related to inadequate cardiac venous return during orthostasis.This is just a section from Stewart's thoracic blood volume testing, he clearly calls it regional hypovolemia. Now does this mean POTS patients won't have total low blood volume (hypovolemia) some could. Now if we have cerebral and thoracic hypovolemia does our body know it's only regional? Or does it react just as if we have total low blood volume? I personaly have very narrow pluse pressure when I stand, and only when I stand, some days as low as 5. Quote Link to comment Share on other sites More sharing options...
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