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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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    My MRI showed damage from ischaemia to parts of my brain BTW - following my blood test showing dereased blood volume - which would also also led to increased and high risk of blood clots and stroke /heart attack


    - I wonder if anyone has made this connection with us
    SickOfSickness likes this.
  2. anniekim

    anniekim Senior Member

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    Sorry if I have understood this incorrectly but isn't Allyson saying she had a high red blood cell count which is what alerted the doc to the possibility of low blood volume in the first place, so if she increases the plasma through iv saline her red blood cell count should then be within the normal range? Thanks
    Allyson likes this.
  3. alex3619

    alex3619 Senior Member

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    anniekim Red blood count might in indeed go back to normal range, or be low, or high, it depends on a number of factors. My point is this can be calculated. The assumption that it will go back to normal is just a guess.

    Let me give an example. Suppose there was a great reduction in blood volume, and RBC count per unit volume went up a little. Total RBC numbers could still be low, its the concentration that is high. So restoring blood volume would, in this case, only result in more plasma, the same number of RBCs would be distributed across the higher volume, and total RBC count would be unaltered. This would mean the diagnosis moved from low blood volume to anemia.

    Indeed its possible RBC count goes up only because the blood volume is low, essentially concentrating the RBCs. Its also possible that these high concentrations may inhibit new RBC formation, resulting in low total RBC number even if concentration is high.
    anniekim, Valentijn and Allyson like this.
  4. alex3619

    alex3619 Senior Member

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    PS. If blood volume is restored then negative feedback to formation of RBCs might be gone. This might result in transitory anemia that would quickly correct itself provided blood volume could be maintained.
  5. Old Salt

    Old Salt Rowing the boat

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    I was found to have non-fatal polycythemia 25 years ago. No treatment. I believe we have low blood volume to lessen the load on the heart, as a self preservation measure. It's easier to push 4 liters of fluid around, than five liters, for example. Probably, many of our symptoms are result of self preservation.
    Rlman, alex3619 and Allyson like this.
  6. gag

    gag

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    Thanks for the info. Yes, here the RCM test is only done in the older, larger hospitals. I have mine scheduled for next week at Northwestern, Chicago. I'll post the results here.
    TY again,
    Geoff
    Allyson likes this.
  7. gag

    gag

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    Yes, that's certainly alarming risks. ...And they say this is a non-fatal disease. This stuff seriously scares me at my age, 53.
    Take care,
    Geoff
  8. Allyson

    Allyson *****

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    yes that is why i am sharing far and wide - others please share too anywhere you like

    It is so rare to get some concrete evidence -a nd my red cell count has been up for 3 years

    guzzliing elctrolytes by the litre has not helped one bit

    Cheers

    Allt
  9. Allyson

    Allyson *****

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    thanks Old salt - hematologist said i did not have polycythaemia based on fact that my liver was not enlarged

    but what is non-fatal polycythaemia?
    is it a rare and differnt form hta he may have misssed?

    many thanks

    ALly
  10. Allyson

    Allyson *****

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    BLOOD VOLUME MEASUREMENT TESTING

    Print this off and take it to your GP and /or or specialist

    This is an important test as it is one of the few that shows some physical evidene of our illness.

    http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx

    I have had this done in Australia at ROYAL Melbourne Hospital with a hematologist (from RMH) referral

    My GP referred me to the hematologist who ordered the test - I am not sure if a GP can order the test.

    My blood volume was very low - 4.33 litres intead of 5 litres and i may have some brain damage due to small blood vessel ischaemia as a resultt according to my MRI - also done at RMH after a referral from a neurologist there.

    I drink LOTS of electrolytes every day so they evidnetly do not fix it

    A MAJOR hospital wil be needed to do this simple non-invasive test - the blood volume test - though as it needs a nuclear medicine department to do it MRIs can be done in a lot of places.
    See this liink for moro on blood volume issues and IV saline replacement etc
    http://forum.notcrazy.net/index.php?topic=9571.0


    A
    xchocoholic and Sasha like this.
  11. VeganMonkey

    VeganMonkey Senior Member

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    I can't find it anymore but yesterday I came across an article on low blood pressure and brain issues, I think it was about brain cells dieing. I have no idea where to find it, but has anyone come across that article by any chance?
  12. Sasha

    Sasha Fine, thank you

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  13. ahimsa

    ahimsa Senior Member

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    VeganMonkey, I think this post from the "Other Health and News" forum is the one you are looking for

    http://forums.phoenixrising.me/inde...tolic-pressure-linked-to-brain-atrophy.23692/

    To save some clicks, here's the article that post was talking about

    http://www.medpagetoday.com/Cardiology/Atherosclerosis/39745

    I think this is a very preliminary study. And it seems to apply primarily to those patients who already have arterial disease and who are also taking drugs to lower blood pressure. Some quotes:
    But maybe it also has implications for patients not taking BP lowering meds who have low blood volume and/or low blood pressure? Who knows?
  14. ahimsa

    ahimsa Senior Member

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    Getting back to low blood volume, I'm not sure it's worth testing in my case since I'm already on treatment to increase low blood volume. I'll ask my doctor what she thinks.

    It does seem to be a useful test for anyone who needs medical evidence for a long term disability claim, though.

    As for treating low blood volume, there have been a couple of articles on these forums about treating low blood volume. Here's are two:

    http://phoenixrising.me/treating-cf...e-mecfs-patients-with-orthostatic-intolerance

    http://phoenixrising.me/treating-cf...ndrome-mecfs-low-blood-volume-by-cort-johnson

    There's probably some info on the dinet.org site, too.
    Sasha likes this.
  15. VeganMonkey

    VeganMonkey Senior Member

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    It kind of makes sense when blood pressure if low that not enough oxygen gets pumped to the brain and that could maybe kill brain cells? I think that's why we get so brain fogged, not enough oxygen. With low blood volume you get low BP too? I assume it does
  16. ahimsa

    ahimsa Senior Member

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    I think this theory (there is low blood volume in a subset of ME/CFS patients, esp. those who show some form of OI) has been around for a while. But I don't remember which studies have been done to confirm it.

    Here's a web page that I found (I have not had time to read it yet) by Dr. Teitelbaum that has some more information:

    http://www.vitality101.com/health-a-z/Cfs_fm-treating_low_blood_volume_and_heart

    I did scroll down to the references and one of the research studies listed is by Dr. Klimas:

    http://www.ncbi.nlm.nih.gov/pubmed/19469714

    But it seems to me that Dr. Streeten and Dr. Stewart have also done research with low blood volume?
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, it has been around for a long time. My autonomic specialist had tested lots of patients for low blood volume, almost all tested down about 1/4 of a tank, so he took it that this was true of most other patients since it is an expensive test, hard to find, and the treatment options would include trying to deal with low blood volume.

    Sushi
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  18. ahimsa

    ahimsa Senior Member

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    Thanks for confirming that my memory was right on this one! I did some searching and found lots of studies. Several of them are available in full text. To find them use "low blood volume" or hypovolemia as search terms.

    Here's another summary page that talks about low blood volume as well as other cardiac problems:

    http://chronicfatigue.about.com/od/symptoms/a/Heart-Abnormalities-In-Chronic-Fatigue-Syndrome.htm
  19. ahimsa

    ahimsa Senior Member

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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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