Blood Volume

[HopeSprings]

Todd-

Here's what he said in the article link posted above:

Dr. Julian M. Stewart, Westchester Medical Center's Director of the Center for Pediatric Hypotension, noted that, "At the center for hypotension, the Daxor system would be used primarily to test patients with orthostatic intolerance since blood volume is a key means by which orthostatic integrity can be maintained and reduction of blood volume is observed in a large fraction of patients with chronic orthostatic intolerance. In addition, research subjects may benefit from the system's use. We are particularly gratified to use the Daxor system, which is the current reference standard for such vascular volume assessment."

So based on what you posted and this, I would say he is saying many POTS patients have low overall (total) blood volume in their body and in addition to that, we get blood "loss" from the heart/chest area (which also leads to less blood flow to the brain) and there is more pooling in our stomach and legs. So I think what you're getting at is- does this pooling, which causes the localized hypovolemia cause our bodies to act as though there was a loss of total blood volume - thereby causing the symptoms. Oh boy, I hope that was coherent. I get what you're saying and it makes sense.

Naomi

[toddm1960]

I couldn't have said it any better...........and of course I didn't LOL

Again it hits home to me because of my narrowing pluse pressure only when standing. I wonder are there many of us on here with narrowing pluse pressures?

[sue1234]

I was on the Daxor site again today, and was looking through their research articles. I found this one really interesting. It was done at the Cleveland Clinic. I was surprised by their findings on breaking down midodrine patients, florinef patients, combines patients, etc. They made the point that it really does matter what the blood volume is in regard to meds for treatment. It could mean the difference between using a med and feeling little help, or using a med or two and feeling really well. Apparently, there shouldn't be a guessing game regarding whether the patient has hypovolemia or not.

BTW, I printed it out and am going to send it to my neurologist. She was the one that diagnosed hyperPOTS and said, "Well, there's not alot we can do for it...". I want to enlighten her. And, BTW, she is part of the medical institution that has access to the Daxor equipment.

Uuugghhh! Can't I ever remember everything at once! Here is the connection to the article:

http://www.daxor.com/pdfs/Fouad%20Syncope.pdf

'

[kjd111]

Fascinating article from the Daxor site. Thank you for posting. My daughter had this test done at Dr. Stewart's orders. I know i've posted elsewhere, but her blood volume was down 22% and her red cell volume down 29%. He was shocked. She came off the florinef for 3 days before the test, so she did it medicated with midodrine and everything else, but not florinef (although i think it takes a while to get out of one's bloodstream).

I've often wondered if she isn't on a high enough does of florinef..........

[DoozlyGirl]

I was on the Daxor site again today, and was looking through their research articles. I found this one really interesting. It was done at the Cleveland Clinic. I was surprised by their findings on breaking down midodrine patients, florinef patients, combines patients, etc. They made the point that it really does matter what the blood volume is in regard to meds for treatment. It could mean the difference between using a med and feeling little help, or using a med or two and feeling really well. Apparently, there shouldn't be a guessing game regarding whether the patient has hypovolemia or not.

BTW, I printed it out and am going to send it to my neurologist. She was the one that diagnosed hyperPOTS and said, "Well, there's not alot we can do for it...". I want to enlighten her. And, BTW, she is part of the medical institution that has access to the Daxor equipment.

Uuugghhh! Can't I ever remember everything at once! Here is the connection to the article:

http://www.daxor.com/pdfs/Fouad%20Syncope.pdf

'

Great article. Thanks for sharing. I was stunned to read that RBC volume depletion was so prevelent - 57% of 539 patients in cohort, less than the 45% who were were hypovolemic. Of those with RBC anemia, 19% had a normal range hematocrit.

Of the 46 patients taking fludrocortisone, midodrine or both, 24 were hypovolemic, and only 20 were were normovolemic. Not great odds for finding proper dose of these meds, huh? Shooting in the dark without some testing to guide the way. Could mean treating RBC anemia could be extra boost someone may need to bring up volume, but hard to get the MD to track down anemia source (gluten, Bit B-12 deficiency, iron or folate deficiency treat with normal HCT...The authors point out that optimal treatment depends upon correctly id'ing and treating specific volume abnormality.

Also illustrates caution for those on both Midodrine and Fludrocortisone, because 9/10 people still had volume depletion. Interesting to read that the majority of patients had been evaluated and treated empirically, still symptomatic, then referred to the Cleveland Clinic. Of the patients taking Fludro, 48% were volume depleted and thought to be underdosed, and of those taking Midrodine, 33% were hypovolemic and at risk for decreased perfusion in response to vasoconstriction.

The authors recommend that blood volume measurement should be added to TTT for comprehensive testing of syncope. While looking at the Daxor site earlier today, I see that Mayo - Rochester, Vande, Columbia, Cleveland Clinic Westchester and others are using this method - here is the link: My link

Lyn

[DoozlyGirl]

Just when I thought I figured out how to post a link.....

I'll try again. http://www.daxor.com/clientlist.asp

In case I screwed this up again.....

http://www.daxor.com/clientlist.asp

Lyn

[Chaos]

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?

It's my understanding that "hyperkinetic circulation" actually means you have an ejection fraction of >80% when the heart contracts. Hyperadrenergic refers to the way you increase your catecholamines when you stand. I suspect that the two are related but they aren't the same thing.

[Chaos]

I couldn't have said it any better...........and of course I didn't LOL

Again it hits home to me because of my narrowing pluse pressure only when standing. I wonder are there many of us on here with narrowing pluse pressures?

Todd- I was told by my neuro that narrow pulse pressures are a "hallmark symptom" of POTS. So I suspect lots of us have this. I know I certainly do. Makes me feel AWFUL!!!!

[HopeSprings]

Sue1234 said : She was the one that diagnosed hyperPOTS and said, "Well, there's not alot we can do for it...". I want to enlighten her. And, BTW, she is part of the medical institution that has access to the Daxor equipment.

I'm pretty sure I have hyperPOTS too based on Norepi results. Are you making a link between hyperPOTS and blood volume? If so, what are you thinking the connection is? It's not computing. I'm thinking HyperPots has some completely other cause not identified yet.

Doozlygirl said: The authors recommend that blood volume measurement should be added to TTT for comprehensive testing of syncope.

Do you interpret this to mean that BOTH should be looked at independently? Not at the same time, right? Position shouldn't affect blood volume results?

[sue1234]

Naomi, I know that high catecholamines can produce hypovolemia. If I am hyperPOTS, then it could be likely that I have hypovolemia as a result. In my thinking, this could just perpetuate the condition. My thinking is, is if they correct the hypovolemia, then the hyper part MIGHT calm down. If not, at least if I'm hypovolemic, it can be addressed.

And, it's the chicken and the egg thing. I don't know WHAT causes hyperPOTS, and it may or may not have initially been a low blood volume. But, I know increased catecholamines can cause hypovolemia.

[HopeSprings]

Sue said: Naomi, I know that high catecholamines can produce hypovolemia.

Oh interesting, I did not know that! I totally get where you're going with it. Darn it, why can't I be hypovolemic?? It would all make so much sense then! I just need things to make sense...

[issie]

Naomi, I know that high catecholamines can produce hypovolemia. If I am hyperPOTS, then it could be likely that I have hypovolemia as a result. In my thinking, this could just perpetuate the condition. My thinking is, is if they correct the hypovolemia, then the hyper part MIGHT calm down. If not, at least if I'm hypovolemic, it can be addressed.

And, it's the chicken and the egg thing. I don't know WHAT causes hyperPOTS, and it may or may not have initially been a low blood volume. But, I know increased catecholamines can cause hypovolemia.

Can't help myself on this one. Could it be constricted blood vessls causing the slow down of blood flow and not the lack of blood volume?

[HopeSprings]

Can't help myself on this one. Could it be constricted blood vessls causing the slow down of blood flow and not the lack of blood volume?

Hi Issie! Why overly constricted and not overly dilated? This has been a point of confusion for me because I thought THE main issue was blood vessels that don't constrict properly.

[toddm1960]

Naomi,

Only half the people with POTS are hypotensive, there's a big group of us that over contrict.

This is a good question for the doctors in the DINET newsletter, 1) Are most POTS patients hypovolemic 2) Does regional hypovolemia lead our bodies to react just as if we have total low blood volume.

[sue1234]

Yes, that would be excellent questions for the doctors!

Todd, I would think so regarding the regional hypovolemia. All the receptors, if I remember correctly , are at the heart level and above. So, if we pool, the upper area senses low volume. In my head(for hyperPOTS), after the pooling, then the adrenaline kicks in, overconstricts, and then possibly the blood has a difficult time returning. I'm thinking it kicks in and then there's just no way anything will get corrected with all the opposing forces happening.

Hey Issie!

[issie]

Can't help myself on this one. Could it be constricted blood vessls causing the slow down of blood flow and not the lack of blood volume?

Hi Issie! Why overly constricted and not overly dilated? This has been a point of confusion for me because I thought THE main issue was blood vessels that don't constrict properly.

My research is leading me to believe because of lack of NO (nitric oxide). I'm high bp, not low.

[issie]

Thanks goes out to Rama, for directing me to look into NO. Trying the Taurine - not sure yet. (Today, seem to be having more hot flashes - don't know if taurine is related. Will see what tomorrow brings.)

[HopeSprings]

Just to make sure I understand correctly - you are thinking some are overconstricted and HIGH BP is the evidence for this? Just trying to figure out how you would know (what bodily signs would tell you) whether you are over or under constricting. Thanks.

[issie]

Just to make sure I understand correctly - you are thinking some are overconstricted and HIGH BP is the evidence for this? Just trying to figure out how you would know (what bodily signs would tell you) whether you are over or under constricting. Thanks.

Theory only and nothing I've read. And the fact that nitro glycerin helped me when I went to the hospital. That would be a good thing to poll and see if there seems to be a connection between all us hyperPOTS people.

If you wear compression hose, it will up you bp. If we already have high bp we don't need to up it more. If our bp is up - could there be a connection with constricted blood vessels? That's the question.

[toddm1960]

Naomi the easy and fast answer to your question is if your BP drops when you stand odds are you're dialating. If your BP raises when you stand chances are you're constricting. Then there are two different things being talked about, first is total low blood volume and second is regional low blood volume due to pooling.

[janiedelite]

Nitroglycerin helped me but compression hose and a high salt diet help most of all. My Mayo neurologist said that my high norepi level and BP while standing is just over-compensation for the main problem I have - blood pooling. So the nitro helped with the chest pain and other adrenaline-related symptoms. But expanding my blood volume helped to actually lower my BP because my body didn't overcompensate by shooting out so much norepinephrine, thus helping all of my symptoms.

[issie]

Yeah, I've been thinking about this conversation all day. I know that I pool because I have very bad blood vessels and my feet swell and hands too. My feet and arms turn purple with being upright and standing. I do think that the hose help me - I haven't been wearing them for a few weeks and my legs hurt more. But, I do know that they will make my bp higher.

I never feel hydrated, no matter how much I drink and if you pinch the skin on the back of my hands - it shows dehyration. If you aren't properly hydrated the blood is not going to flow properly either.

So, it's a whole bunch of unanswered questions. I do know that the lack of NO causes the blood vessels to constrict. I think that's why the NO helps because it opens the blood vessels and blood and oxygen flow better. But, that's probably the wrong thing for those not hyperPOTS. Today, the Taurine (which increases NO) brought my bp down to normal. I didn't realize that I shouldn't take it in the daytime because it helps with sleep. I think I took too much and it wiped me out - but maybe at night or a whole lot less in the day maybe. Taurine is also supposed to help balance the electrolytes. Experiment is on.

[toddm1960]

Issy I agree we all experiment here and there, the first try I went with for over constriction is nacin. I've worked my way up to 1,000mg a day, I take it in the morning. I didn't know about taurine, but will look into that today. The other two things I've been looking at are marinol and the once a day cialis, both raise NO and dialate our blood vessels. Keep us updated on how your experiments are going.

[HopeSprings]

"I know that I pool because I have very bad blood vessels and my feet swell and hands too. My feet and arms turn purple with being upright and standing."

This happens to me too, but I took this as a sign that my blood vessels are NOT constricting - allowing the blood pool, which causes the color changes - blue, purple or red (mostly bluish/purple). If I elevate my legs, my feet go back to normal color. Unless the color change I am seeing ISN'T pooling, but something else?? My BP is generally low, but it does go up (a normal amount) when I stand, so there is at least some constriction going on. Alcohol makes me feel much worse and I assume that's because it's a vasodilator. Coffee helps - vasoconstrictor. But Midodrine (which theoretically should have worked) did NOT agree with me. Just thinking out loud here. This is a hard one to figure out.

[issie]

Well, taking the Taurine at night is not good for me. Had restless sleep and a nervous, trembly feeling. This morning still feel the tremors and just mentally kind of out of it. Blood pressure is good though - have more hot flashes too. Will open capsule tomorrow and try just a small amount - maybe too much. Reading about this supplement - sounds so good - just hope it will give the benefit to me - NOT Sure! If we over react to everything - it may take a whole lot less to get the desired effect - than someone without such a sensitive system. A whole pill - NOT GOOD!