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Low Blood Volume - mine now proven by Red Cell Mass test

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Allyson, Jun 8, 2013.

  1. Allyson

    Allyson *****

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    I just got the results from my Red Cell Mass test which was done to measure blood volume
    It was a fairly straightforward blood test over a couple of hours.

    Apart from my BP dropping 20 mmHg on standing - when it was finally measured correctly - this is the first test showing anything wrong . ( edit - on and my MRI which has a some things on it that i need to get checked out; oh, and a consistently low CRP)

    But something rather seriously wrong.

    I have low blood plasma volume - It is 2.48 litres - That is 30 mls per kg when the normal range is 40-50 mls per kg.

    My whole blood volume is 4.33 l itres (52 mls per kilo when normal range is 60-80 ml/kg).
     
    Maybe IV therapy twice a week would get me mobile.?


    ............................................................
    "The findings demonstrate reduced plasma volume consistent with "stress polycythemia" or dehydration."
    (The polycythemia was ruled out by the haematologist.
    They instruct you what to eat and drink pre-test so it's not normal dehydration.)

    Whole blood volume is 4.33 l itres (52 mls per kilo when normal range is 60-80 ml/kg).
    Plasma volume is 2.48 litres (30 mls per kg.............. normal range is 40-50 mls per kg).

    .......................................................

    Low blood volume I have read is common in ME. It is stated as such in the International Consensus Criteria of 2011 for ME/cfs (of which Dr Don Lewis is a co- author).
    ........................................................

    Incidentally anyone reading this may be interested in my thread on defining what fatigue means for us - especially now in light of this finding and I would welcome any considered feedback on that topic there.

    http://forums.phoenixrising.me/index.php?threads/fatigue-or-not-fatigue-that-is-the-question.23219/

    Many thanks in advance for any replies.

    best

    Ally
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  2. Sasha

    Sasha Fine, thank you

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    Congratulations on getting an abnormal test result - weirdly, it's what we all long for! Something to reflect the reality of the symptoms. o_O

    How did they do the test, Ally?
  3. Allyson

    Allyson *****

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    Thanks Sasha - yes i was happy

    I will delete this bit soon but the funny thing is the Hematologist knew nothing about ME/cfs ( except perhaps that it was all in my head) and had his ME cfs face on for me at the first appt- you know that face!

    then by th second appt with him ihad see the geneticist at the same major hospital who had confirmed EDS - His cfs face was gone and he was now taking it seriously -



    SO my red cell count had been high for several months so my Gp referred me to a hematologist. ( As you need to rule out polycytheimia)

    he looked at all my past relults an said the RBCs have been hight for a while - 3 years i think - so you may just be one of those people that have normally high RBC.

    However it could be because you have low plasma levels so the RBC count looks high but it is just that they are really concentrated as there is not enough plasma - we can test for that but I do not think it is worht it . However I knew low blood volume was an issue in ME and EDS - both my diagnoses so I said no i would like to have the test please - so he ordered it.

    You go to nuclear medicin dept in the morning- they tell you what to drin a nd eat beforehand.

    THey put in a n iv line a take some blood, infue it wiht a trace of racioactive material na dre- inject it bacck into you . Then every half hour for nex 2 hours or so they take blood out of the IV site and measure the amount of the racdiaactive material. Form that they can tell how mush plasma you have.

    SO when i wnet back to hematologist he now siad - we wer 85 per cent sure you had low blood bvolume before - now we are 100 percent sure so it is good that WE decided to test for it lol.

    Suhih has kindly told me IV cliics are around in the US wher you can go ina nd get infusions so i am looking into how to do this in Aus - will go back to my POTS/OI specialist and get his advice - he is great.

    I stopped my IM b12 about 2 weeks before the test as it boosts blood volume.

    cheers

    Ally

    cheers

    Ally

    A
  4. allyb

    allyb Senior Member

    Hi Ally,

    As Sasha says so eloquently puts it a cause for celebration :balloons: to bring the imaginary in to the realms of REAL; proof and a spring board for some kind of treatment.
    Will you diary your journey from here Ally? Was the testing difficult to obtain and could you tell us a little more about it? And is it as the title implies associated with mast cell?
    Apologies for the Spanish inquisition, its just all so fascination.

    Thank you
    Kindly regards
    allyb
    peggy-sue and Allyson like this.
  5. Sasha

    Sasha Fine, thank you

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    His ME face! I like it! :)

    That's a fascinating account. I didn't realise that if you could establish low blood volume, it would actually be treated.

    Any UK patients reading this who've either had this test and/or had treatment for low blood volume?
    Allyson likes this.
  6. Allyson

    Allyson *****

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    yes the hematologist knew all about testign for low blood volume - he said they used to use another test for it that included some pig material and they had to stop that with the mad cow scare - so that was why this test was developed.

    Mind you I kind of had to insist on having it


    and now I have to go back to my - luckily great and open minded Pots/OI specialist for treatment.

    The nuclear med nurse said they do the test about 6-7 time a year so far.

    We have to join up the threads ourselves with this illness..


    A
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  7. Forbin

    Forbin Forbin

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    This Q&A with Dr. David Bell from 1/15/10 is worth reading. He talks a lot about low blood volume.

    http://phoenixrising.me/archives/11814

    Regarding blood transfusions, he said that they make you feel "a little bit better for a week or two weeks," but, regarding ongoing transfusions, he said, "in today’s day and age, you won’t find any physician who will do that. Maybe a haemotologist."

    I'm not sure of the exact reason.
  8. Persimmon

    Persimmon Senior Member

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    Hiya Alley,
    Really glad you got a concrete result.
    Where did you get the test done? Do you know which Melbourne hospitals offer it?
    Allyson likes this.
  9. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Nope, the test referred to in the title is about the mass of red blood cells.

    But, from the Dr Bell interview cited by Forbin, isoprostanes might be involved. Isoprostanes are very chemically similar to the prostaglandins that are produced by mast cells. Is there a connection? Maybe.

    Bell say that the usual deficit is around 30%, which is close to Ally's numbers. Bell say that people with very low volume might keel over except that the isoprostanes are very powerful vasoconstrictors. When all the arteries squeeze down, that makes the low blood volume less bad.

    What can prevent this blood-pressure-raising effect and make a person go and keel over? Genistein, which is in soy. Anybody find that their OI or POTS gets worse from soy products?

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1574071/
    "Vasoconstrictor responses, and underlying mechanisms, to isoprostanes in human and porcine bronchial arterial smooth muscle"

    I'm one of the few that tends to the other direction. The isoprostanes might be what is raising my BP whenever I get sick.

    The only ones that I see here mentioning isoprostanes are globalpilot and Emootje
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  10. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Like a good detective story. :)

    Allyson, I doubt you could get whole blood transfusions, they mostly now separate blood into the components like packed RBCs, platelets, frozen plasma, etc.

    You might get plasma, but really you might just need saline IV. I'm assuming that many with OI/POTS must have tried that over the years. I'd think you'd just urinate it out, for the same reason as getting low blood volume in the first place. But how long would the benefit last?

    It'll be interesting to see how long it lasts for you, if you get to try it out.

    No surprise to you of course that exercise increases blood volume, one way is by increasing Antidiuretic Hormone (aka vasopressin). But it takes long exercise, or if it's short it has to be fierce.
    http://www.umc.edu/Education/Schools/Medicine/Basic_Science/Physiology_and_Biophysics/Core_Facilities(Physiology)/Physical_Exercise_-_Antidiuretic_Hormone.aspx

    [​IMG]
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  11. Tito

    Tito Senior Member

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    It is because of all infections you can get via transfusion. In the 70's, they transfused blood quite a lot, for any reason really. Then came the spreading of hepatitis C and HIV, and things dramatically changed. Nowadays to get a transfusion, you must be virtually dead. And I think it is wise.

    Good thing you have a diagnosis. I too like the term "a doctor with his ME face".

    Tito
  12. Valentijn

    Valentijn Activity Level: 3

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    If the problem is low blood volume and high blood cell concentration, then more fluid is what's needed, not blood cells.
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  13. SOC

    SOC Moderator and Senior Member

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    The common treatment for low blood volume in ME is Florinef used to replace low aldosterone. It's recommended in the ME/CFS Primer for Clinical Practioners.

    Daughter and I both do better with 0.2 mg Florinef plus 2-3 liters of electrolyte water daily. Florinef can seriously deplete electrolytes, so you have to be careful about that.
    Ema, ahimsa and Valentijn like this.
  14. allyb

    allyb Senior Member

    Thank you Sherlock,

    Dur me! must be my dyslexia, when I was a kid I used to write about it....... in my 'Dairy' :D
    I'd blame it on the brain-fog but today was a good day and I wasn't even standing!:redface:

    The info and link is much appreciated, I need to read it more thoroughly though.

    I have severe PoTs and recently seen an immunologist who wants to look at mast cell and also I had just been reading the article (below) this morning about PoTs and mast cell and I guess I've got it on the brain (pardon the pun.)

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/
    It's quite an extensive piece and this is just a section of it.

    Hypovolemia & Blood Volume Regulation
    Many patients with POTS have low plasma volumes but not all. To determine if hypovolemia existed in an unselected group of POTS patients, we studied 15 patients with POTS (not selected for blood volume) and 14 control subjects Plasma volume was measured using 131I labeled human serum albumin using a dye dilution technique, and compared to the predicted blood volume for each individual, based upon their height, weight, and gender. As can be seen in Figure 4, the control subjects did not have a significant plasma volume deficit (0.8±2.5%). In contrast, the patients with POTS had a plasma volume deficit of 12.8±2.0% (P<0.001).

    Figure 4
    Blood Volume Deviation in POTS

    [​IMG]

    The renin-angiotensin-aldosterone system plays a key role in the neurohormonal regulation of plasma volume in humans. Plasma renin activity and angiotensin II would be expected to increase in response to hypovolemia in order to promote blood volume expansion. Angiotensin II promotes sodium and water retention directly by stimulating sodium resorption in the proximal tubules, and indirectly by stimulating aldosterone secretion.

    Patients with orthostatic tachycardia who were also hypovolemic have low levels of standing plasma renin activity and aldosterone compared to normovolemic patients. This is true in both supine (190±140 pM vs. 380±230 pM; P=0.017) and upright posture (480±290 pM vs. 810±370 pM; P=0.019). One would have expected a compensatory increase in both plasma renin activity and aldosterone given the hypovolemia in these patients. This low level of plasma renin activity and aldosterone is a paradox that remains unexplained. These data suggest that abnormalities in the renin-angiotensin-aldosterone axis might have a role in the pathophysiology of POTS by contributing to hypovolemia and impaired sodium retention. Such hypovolemia could be accounted for by a neuropathic process involving the kidney. A significant modulator of renin release is the sympathetic nervous system. Thus perturbations in the renin-aldosterone system might result from partial sympathetic denervation involving the kidney

    Central Hyperadrenergic POTS
    As a part of the definition, POTS is associated with a hyperadrenergic state (Table 1). In many such cases, the hyperadrenergic state is secondary to a partial dysautonomia or hypovolemia. There are some cases, however, in which the primary underlying problem seems to be excessive sympathetic discharge. These patients often have extremely high levels of upright norepinephrine. While we require the upright norepinephrine level to be >600 pg/ml for the diagnosis of POTS, the hyperadrenergic subgroup often has upright norepinephrine level >1000 pg/ml and it is occasionally >2000 pg/ml. These patients sometimes have large increases in blood pressure on standing, indicating that baroreflex buffering is somehow impaired.

    Central hyperadrenergic POTS in its most florid form is much less common than neuropathic POTS, comprising only ~10% of patients. Thus therapy in these cases usually targets a decrease in sympathetic tone both centrally and peripherally.
    Central sympatholytics such as methyldopa or clonidine can be used. Peripheral beta-adrenergic blockade may be better tolerated by these patients than by those with neuropathic POTS.

    Norepinephrine Transporter Deficiency
    A specific genetic abnormality has been identified in a kindred with hyperadrenergic POTS. These individuals have a single point mutation in the norepinephrine transporter (NET). The resultant inability to adequately clear norepinephrine produces a state of excessive sympathetic activation in response to a variety of sympathetic stimuli. While rare, this mutation has taught us much about the importance of a functional NET.

    Although functional NET mutations might be infrequent, pharmacological NET inhibition is very common. Many antidepressant and attention deficit medications work at least in part through inhibition of NET. This includes traditional drugs such as tricyclic antidepressants, and newer medications which are pure NET inhibitors (e.g. atomoxetine or reboxetine). Both we and others have found that pharmacological NET inhibition can recreate an orthostatic tachycardia phenotype in susceptible healthy volunteer subjects. Yohimbine, a central alpha-2 antagonist that will also increase synaptic norepinephrine, can also cause orthostatic tachycardia

    Mast Cell Activation
    Some patients with POTS have co-existent mast cell activation. These patients have episodic flushing and abnormal increases in urine methylhistamine (the primary urinary metabolite of histamine) Methylhistamine should ideally be measured in 2 hour aliquots at the time of a flushing episode and not just in a random 24 hour period. Other associated symptoms include shortness of breath, headache, lightheadedness, excessive diuresis, and gastrointestinal symptoms such as diarrhea, nausea, and vomiting. Flushing can be triggered by long-term standing, exercise, premenstrual cycle, meals, and sexual intercourse. These patients often have a hyperadrenergic response to posture, with both orthostatic tachycardia and hypertension. They demonstrate a vigorous sympathetic vasopressor response during the Valsalva maneuver with a blood pressure overshoot in late phase II and an exaggerated phase IV blood pressure overshoot. It is not clear if mast cell activation, releasing vasoactive mediators, represents the primary event in these patients or if sympathetic activation, through release of norepinephrine, neuropeptide Y and ATP, is the cause of mast cell activation

    In these patients, beta-adrenergic antagonists can actually trigger an episode and worsen symptoms. Centrally acting agents to decrease the sympathetic nervous system discharge (e.g. methyldopa or clonidine) may prove effective. Alternatively, treatment could target mast cell mediators with a combination of antihistamines (H1- and H2-antagonists) and with the cautious use of non-steroidal agents (high dose aspirin) in refractory cases.
    Allyson likes this.
  15. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, AllyB. No reason to read that study I'd posted, only the statement that genistein reduces the action of isoprotanes is relevant. Speaking of which, something that you posted is very relevant to me, so thanks:
    That's me. I don't have POTS, probably because I overdrive my system with adrenalin or noradrenalin. I've also got the excessive histamine - but from MTHFR, not from MCAS.

    You've reminded me that I started out with some dizziness on standing, after the bad cold had subsided.

    Have you tried quercetin as a mast cell stabilizer yet? Do you flush a LOT from niacin?
  16. leela

    leela Slow But Hopeful

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    "CFS face"! Haha! I know it well....:alien:
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  17. leela

    leela Slow But Hopeful

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    Sherlock How do you know if your excessive histamine is from MTHFR or MCAS? I have MTHFR mutations, and most of the symptoms of MCAS.
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  18. VeganMonkey

    VeganMonkey Senior Member

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    Forbin if it's impossible to find a doctor to give blood transfusions, what about finding a donor yourself? Would they do it then?

    I find it disturbing that not each batch of donor blood is tested for diseases. But that's what I meant with if you can find your own donor. Always the same person, someone you can trust of course. I wonder if it's allowed.

    Sherlock soy doesn't affect me in fermented or processed state, so tofu, tempeh or soymilk doesn't do anything, but the beans themselves (edamame) make me terribly ill (IBS ill)
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  19. VeganMonkey

    VeganMonkey Senior Member

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    In my blood tests it always comes out that my red blood cells are too small. What is that about? Apparently quite common in ME/CFS according to my specialist.
    Allyson likes this.
  20. Allyson

    Allyson *****

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    Thansk SO but Prof O'Callaghan already tried Florinef on me - no go alas -

    It made me bloat and feel awful and did not help anything -

    It does not work for evey one apparently

    thanks anyway for the thought - much appreciated.

    Ally
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