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People with ME/CFS can have hypervolemia and not low blood volume

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Interesting. Doctors tend to get very muddled about this sort of physiology. I am fairly sure that high protein levels do not increase blood volume in fact. This is an old theoretical idea based on a misconception about Starling's Law that may be best forgotten. As zzz points out, an autonomic dysfunction with venodilatation - as occurs with some peripheral neuropathies for instance will tend to lead to an increased blood volume but, crucially, this volume will seem to be too low, especially if you stand up. This is because the capacity of the 'bag' of the circulation has increased, maybe even more than the blood volume has increased. What people call hypovolaemia often means relative hypovolaemia, which could easily be absolute hypervolaemia, I think.

So what actually matters for symptoms is whether or not the blood volume fits the size of the circulation bag. In heart failure there is too much blood for the bag. If you sit up some of the plasma leaks into the feet and you feel better but when you go to bed that all drains back to the circulation bag and you wake up short of breath again.

So I am not actually sure that measuring blood volume itself is necessarily much help - at least not on its own. What you want to know is if the volume is enough for your circulation. That you can tell quite easily in a physical examination by looking at the central venous pressure - CVP. A precise measure of CVP requires equipment but a simple and pretty reliable way is to lie the person down and look at the neck veins when you press on the abdomen to squeeze blood out of the venous pool there. If blood volume is higher than ideal the neck veins are full to start with. If it is low they do not even fill when you press on the abdomen. There is a strange exception to the rule in constrictive pericarditis where you want the volume to be relatively high to ensure enough blood gets into the tight pericardium.

My suspicion is that this is all the same thing in ME - autonomic dysfunction with both relative and absolute shits in volume.
 

Gingergrrl

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@Jonathan Edwards

So I am not actually sure that measuring blood volume itself is necessarily much help - at least not on its own. What you want to know is if the volume is enough for your circulation. That you can tell quite easily in a physical examination by looking at the central venous pressure - CVP. A precise measure of CVP requires equipment but a simple and pretty reliable way is to lie the person down and look at the neck veins when you press on the abdomen to squeeze blood out of the venous pool there. If blood volume is higher than ideal the neck veins are full to start with. If it is low they do not even fill when you press on the abdomen.
My former cardiologist actually did something like this and had me laying and then standing and was pressing on the veins of my neck. She felt I had low blood volume and prescribed Florinef (which never helped me in three mos) but I wonder if she was assessing the CVP like you just mentioned?

My suspicion is that this is all the same thing in ME - autonomic dysfunction with both relative and absolute shits in volume.
I bolded that word b/c you made me laugh so hard when I read it this morning... thank you! And feel free to change it if you want... but most of us do have absolute shits for blood volume...
 

Gingergrrl

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Have your tried desmopressin?
@leokitten Desmopressin was recommended but after I read about the medication and discussed it with several people on PR, I decided against it. In my case I do not have DI or any polyuria nor excessive thirst, etc. With Desmopressin you are supposed to restrict fluids and I was just about to start IV saline and told to drink extra Pedialyte. In fairness it was two different doctors (my cfs dr & cardio) and they had not spoken to each other and I was afraid of doing two treatments that would conflict with each other. So for now I am trying the saline and increasing fluids approach. I could explain more if it would help anyone but don't want to take your thread off track from the Daxor test.
 
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@Jonathan Edwards



My former cardiologist actually did something like this and had me laying and then standing and was pressing on the veins of my neck. She felt I had low blood volume and prescribed Florinef (which never helped me in three mos) but I wonder if she was assessing the CVP like you just mentioned?.
All doctors used to be taught to do this as part of the standard physical exam every time. I have no idea what they get taught now. She would have been assessing relative blood volume by CVP (or in this case JVP). She presumably found it relatively too low, although the absolute volume may have been normal or high.

I think the other bit is quite good as it is - a little poetic license maybe.
 

NK17

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Interesting. Doctors tend to get very muddled about this sort of physiology. I am fairly sure that high protein levels do not increase blood volume in fact. This is an old theoretical idea based on a misconception about Starling's Law that may be best forgotten. As zzz points out, an autonomic dysfunction with venodilatation - as occurs with some peripheral neuropathies for instance will tend to lead to an increased blood volume but, crucially, this volume will seem to be too low, especially if you stand up. This is because the capacity of the 'bag' of the circulation has increased, maybe even more than the blood volume has increased. What people call hypovolaemia often means relative hypovolaemia, which could easily be absolute hypervolaemia, I think.

So what actually matters for symptoms is whether or not the blood volume fits the size of the circulation bag. In heart failure there is too much blood for the bag. If you sit up some of the plasma leaks into the feet and you feel better but when you go to bed that all drains back to the circulation bag and you wake up short of breath again.

So I am not actually sure that measuring blood volume itself is necessarily much help - at least not on its own. What you want to know is if the volume is enough for your circulation. That you can tell quite easily in a physical examination by looking at the central venous pressure - CVP. A precise measure of CVP requires equipment but a simple and pretty reliable way is to lie the person down and look at the neck veins when you press on the abdomen to squeeze blood out of the venous pool there. If blood volume is higher than ideal the neck veins are full to start with. If it is low they do not even fill when you press on the abdomen. There is a strange exception to the rule in constrictive pericarditis where you want the volume to be relatively high to ensure enough blood gets into the tight pericardium.

My suspicion is that this is all the same thing in ME - autonomic dysfunction with both relative and absolute shits in volume.
Why everything you say here on PR is so clear, practical and common sense?!

Should I send this post of yours to my PCP (who basically never lay her physician's hands on me) and to my ME specialist as well?!

I feel so low in blood perfusion, especially in my brain today, that if it wasn't for my fellow sufferers postings on PR and your EBP (Evidence Based Practice) answers, I would almost feel dead!

Right now on top of physically and literally feeling like a fish out of water, I'm also mad and very frustrated!

But first I need to drink and manage to reach the loo as you call it in the UK and not specifically in that order.
 

leokitten

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I guess in the case of hypervolemia low ADH and aldosterone make total sense. I'm still having trouble wrapping my head around how you would still remain hypervolemic. Have you ever had any of your natriuretic peptide levels checked? Are your blood electrolyte levels ever abnormal on tests?
Good question. Yes the cardiologist tested NT-proBNP which is the best natriuretic peptide test (a much better target than ANP or BNP) to diagnose heart failure severity and/or heart strain/stretch and my level was almost zero. Also I've had CMP (comprehensive metabolic profile) tested literally 30 times or more since I've gotten ill and my electrolytes have never been abnormal.
 

leokitten

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How about blood letting ? Lol. Seriously tho, would having your blood drawn regularly help this ?
I have seriously thought of going and donating plasma, not whole blood because the Daxor results showed my plasma volume is extremely in excess and my RBC volume is just mildly in excess (which I believe is just my body's response to the plasma excess to try and maintain the correct concentration of RBCs in the increased volume)

Highly elevated RBC volume causing hypervolemia is indicative of polycythemia
 

leokitten

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@leokitten I'd like to know if and which drug/s regimen are you on now and/or at the time of the Daxor test, if you don't mind sharing.

When you did the Daxor blood volume test were you still taking Valcyte, Famvir and Doxicycline?

If you don't mind sharing can you also tell us if the Daxor test was requested by your ME doctor (Dr. Susan Levine)?

Thank you in advance for any extra info you're willing to share with us.
Yes I was taking this combo during the Daxor tests and am still taking them. I honestly don't believe they had any effect on the results, the symptoms I listed in the original post and the lab test information existed even before I started taking any medication.
 

leokitten

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So I am not actually sure that measuring blood volume itself is necessarily much help - at least not on its own. What you want to know is if the volume is enough for your circulation. That you can tell quite easily in a physical examination by looking at the central venous pressure - CVP. A precise measure of CVP requires equipment but a simple and pretty reliable way is to lie the person down and look at the neck veins when you press on the abdomen to squeeze blood out of the venous pool there. If blood volume is higher than ideal the neck veins are full to start with. If it is low they do not even fill when you press on the abdomen. There is a strange exception to the rule in constrictive pericarditis where you want the volume to be relatively high to ensure enough blood gets into the tight pericardium
Thank for all of this insight, the cardiologist did a heart echo with a constrictive/restrictive workup and everything appeared totally normal. I don't remember if the cardiologist did this simple CVP test, i need to ask.
 

CFS_for_19_years

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Highly elevated RBC volume causing hypervolemia is indicative of polycythemia
In order to be diagnosed as having polycythemia, your hematocrit would need to be elevated. The hematocrit is part of a CBC, complete blood count. Normal hematocrit for adult male = 41% to 50%; for adult female = 36% to 44%.
 

leokitten

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In order to be diagnosed as having polycythemia, your hematocrit would need to be elevated. The hematocrit is part of a CBC, complete blood count. Normal hematocrit for adult male = 41% to 50%; for adult female = 36% to 44%.
It would take me too long to explain, but the regular CBC test (which tests hemocrit level) can be incorrect and not always accurately diagnose RBC (or plasma) volume abnormalities. The Daxor test accurately determines your real hemocrit level.

Review this information on the Daxor site explaining why in these two documents:

http://www.daxor.com/BVAhtml/The BVA-100.htm
http://www.daxor.com/pdfs/bva100-brochure.pdf
 
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leokitten

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My suspicion is that this is all the same thing in ME - autonomic dysfunction with both relative and absolute shits in volume.
I totally agree and recently wrote a similar thing here on PR.

ME/CFS is possibly a neuroimmune disease which then causes changes or damage to parts of the brain causing autonomic dysfunction including the ability to keep blood volume within a normal range. People either go hypovolemic or hypervolemic and the severe relative blood volume shift wreaks havoc on the body causing many of the symptoms and possibly also perpetuating the disease.
 
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adreno

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ME/CFS is possibly a neuroimmune disease which then causes changes or damage to parts of the brain causing autonomic dysfunction including the ability to keep blood volume within a normal range. People either go hypovolemic or hypervolemic and the severe relative blood volume shift wreaks havoc on the body causing many of the symptoms and possibly also perpetuating the disease.
Perhaps focusing on nerve growth factors could help?
 

beaker

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I have seriously thought of going and donating plasma, not whole blood because the Daxor results showed my plasma volume is extremely in excess and my RBC volume is just mildly in excess (which I believe is just my body's response to the plasma excess to try and maintain the correct concentration of RBCs in the increased volume)

Highly elevated RBC volume causing hypervolemia is indicative of polycythemia

We don't know for sure what hasn't been found in our bodies. It wouldn't be good to risk passioning it on through donation.

ED: "passioning it on" ?? lol I mean "passing" of course.
 
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Valentijn

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I have seriously thought of going and donating plasma, not whole blood because the Daxor results showed my plasma volume is extremely in excess and my RBC volume is just mildly in excess (which I believe is just my body's response to the plasma excess to try and maintain the correct concentration of RBCs in the increased volume)
If it's medically indicated, a doctor will bleed you periodically. It's done for hemochromatosis, where excessive iron in the blood can cause organ damage.

I'm not sure donating bodily fluids is a good idea, unless you're quite sure you don't have anything infectious. Plus it probably wouldn't work very well - a small amount is taken when donating, and everyone has to wait a while before donating again. Hence you'd probably over-replenish whatever you lost long before you could offload some more at a donation center :p
 
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It would take me too long to explain, but the regular CBC test (which tests hemocrit level) can be incorrect and not always accurately diagnose RBC (or plasma) volume abnormalities. The Daxor test accurately determines your real hemocrit level.

Review this information on the Daxor site explaining why in these two documents:

http://www.daxor.com/BVAhtml/The BVA-100.htm
http://www.daxor.com/pdfs/bva100-brochure.pdf
I am fairly sure Daxor are wrong. Haematocrit is defined as red cell volume over total blood volume as measurable in a blood sample. Daxor seem to be trying to redefine the term so that they can sell their test. As far as I am aware the only significance of having more red cells to health is if the haematocrit (as originally defined) is high - which may precipitate thrombosis or embolism. The healthy feedback mechanism for red blood cell production will have to work on the basis of the true haematocrit - the bone marrow would not have receptors for total red cell mass. So a raised red cell mass that gave a normal haematocrit because of a raised plasma volume would be an indicator of a healthy bone marrow, not of polycythaemia.

Judging by the brochure this company is in to a hard sell - I would be sceptical.