Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS Discussion' started by leokitten, Nov 2, 2014.

  1. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Hi everyone,

    After my original post, research and ideas Is ME/CFS caused by biological stress and perpetuated by high catecholamines and low blood volume? I have a major update and turn around on this topic, apologies for not writing sooner it took many months to figure out what has been going on.

    I was able to get my blood volume measured accurately by Daxor BVA-100 machine and radioisotope method twice at two different locations over a month apart and the results were completely unexpected. I did it the second time over a month after at a different hospital because the first results were so shocking.

    My plasma volume is in extreme excess, i.e. I have hypervolemia. This is completely opposite of what I expected and after experiencing many symptoms that people who believe they have low blood volume have I would say you cannot know at all based on symptoms alone, you must get the Daxor blood volume analysis test in order to definitively know what is your blood volume status is. Also I've never taken any blood volume enhancers because after trying things like desmopressin, florinef, and IV saline they just made me feel worse right away so I stopped a long time ago.

    If ME/CFS caused you to have the following symptoms (as it did with me):
    • A generally lowered heart rate than you had before the disease with only some periods of tachycardia
    • Higher blood pressure than you had before the disease
    • A bounding pulse, you feel your heart beating hard and at certain times with each pulse the blood movement actually shakes your head or upper body
    • Polyuria, i.e. increased urination, at least for many months to a year or more in the beginning of the disease
    • Low ADH/vasopressin and low aldosterone
    • Swelling in the abdomen (which might feel like gastrointestinal)
    • Dizziness
    ALL of the above symptoms could be a result of excess plasma volume.
    • Your body will lower your heart rate in response to hypervolemia and you will get a bounding pulse.
    • Your blood pressure will go up when there is excess blood volume.
    • Your body will attempt to correct the excess plasma volume by reducing your ADH/vasopressin and aldosterone levels causing your kidneys to pump out a lot of urine.
    • You will get abdominal swelling as another response by your body to correct the hypervolemia and move excess water out of your vascular system and into tissues.
    • Severe hypervolemia will also cause reduced tissue oxygenation just like hypovolemia, causing dizziness and other symptoms.
    So some or many of us with ME/CFS have excess blood volume even though some symptoms might feel like low blood volume, you must get the Daxor blood volume analysis test in order to definitively know what is your blood volume status is.

    Also this means those of you who thought you had this mild-to-moderate diabetes insipidus (which I did see my posts) it could be completely wrong, it could be your body trying to respond to excess plasma volume!

    After knowing I have hypervolemia I was referred to a cardiologist, hematologist, and nephrologist to do all these tests and procedures to discover why I had hypervolemia. The medical literature states that you essentially get hypervolemia because of three major reasons:
    1. Heart failure or other heart-related problems
    2. Kidney failure or other kidney-related problems
    3. Excess protein in the blood (excess antibodies i.e. immunoglobulins or other e.g. albumin)
    I went through every relevant blood test, MRI, and ultasound and told they cannot find what is wrong and causing the hypervolemia, they are completely baffled. With the data they have my heart, kidneys and blood were perfectly normal. I was thinking it would be #3 because of the high antibody titers to intracellular pathogens commonly found in ME/CFS which I have but no they said I don't have excess proteins in my blood (which would cause water to be sucked from tissues into blood stream).

    Anyway, all this has been disheartening because everything with this disease involves so much effort to find answers and always ends up with doctors completely at a loss.
     
    Last edited: Nov 2, 2014
    Ritto, JBB, PennyIA and 14 others like this.
  2. zzz

    zzz Senior Member

    Messages:
    563
    Likes:
    2,427
    Oregon
    Thanks for the post, @leokitten. We've known that not everyone with ME/CFS has hypovolemia, but this is the first time I've heard of hypervolemia. Yet it's not surprising.
    They're missing one:

    4. Autonomic dysfunction

    The same problem that can cause hypovolemia in ME/CFS can also cause hypervolemia. It just involves the malfunction of different neural networks or structures in the brain, or malfunctions of the same.structures (such as the hypothalamus or pituitary), but in different ways.
    Yes, doctors don't understand this disease very well at all after 30 years. But the latest study from Stanford showing a possible biomarker for ME/CFS in the brain just adds to the evidence that the brain is where this all begins.
     
    Last edited: Nov 2, 2014
    Marky90, PennyIA, ahimsa and 10 others like this.
  3. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Really good point, didn't know this could happen, always saw autonomic dysfunction causing POTS or NMH (due to hypovolemia). What is also a big problem is its very difficult for doctors to test and show autonomic dysfunction is causing blood volume abnormalities.

    What I think is so interesting about what I found is that WOW the reason we can have polyuria and the above abnormalities like low ADH and low aldosterone is not because they are causing low blood volume (like most of us thought) but that these are indeed responses to excess blood volume! And it totally makes sense...

    Everyone who thinks they have blood volume issues should really get a Daxor blood volume analysis done, they might be shocked.
     
    JBB, NK17, Sushi and 2 others like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,944
    Likes:
    22,144
    USA
    @leokitten

    Thank you so much for sharing all that and it was really informative. I have always suspected (since getting ME/CFS) that I have low blood volume and after reading your symptom list it confirms that I do. Please correct me though if I am wrong or misinterpreting something.

    - I have never had bradycardia or a lower than normal heart rate and only tachycardia.
    - I always have low BP and even with Midodrine it often stays in the 90's over 60's.
    - I do not have a pounding pulse, polyuria or swelling in abdomen.

    But I do have vasopressin so low that it was not measurable in the standard range on a blood test.

    From what I shared, does this sound like low blood volume to you? I am so glad you had the Daxor analysis done and are sharing what you found with us. Best wishes with your treatment and moving forward.
     
    NK17 and leokitten like this.
  5. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Maybe as I thought in my earlier posts that ME/CFS is possibly perpetuated by low blood volume I should generalize and say that maybe ME/CFS is perpetuated by blood volume abnormalities both hyper and hypovolemia. Both cause lots of stress on the body!

    I don't know why they just don't do a simple study with a large number of ME/CFS suffers using the proper selection criteria (i.e. ICC) and measure everyone's blood volume with the Daxor BVA-100. Simple and would maybe tell us A LOT!
     
    Leopardtail, PennyIA, JBB and 4 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,944
    Likes:
    22,144
    USA
    What does the Daxor test involve? In an overview of course and don't want to make you type a lot!
     
  7. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Based on your information I would place my bet on you having low blood volume, but as I said you can never know for sure unless you do the Daxor test.

    Also I would add that after a long period of time you body might do things to adjust and cause symptoms to change, for example I had polyuria for the first 1.5 years of the disease and then a few months ago it just slowly stopped and went back to normal on its own like my body or kidneys could not or did not want to have polyuria anymore. When that happened my body did other adjustments which caused new symptoms and worsening of some existing symptoms. I know I still have hypervolemia but I don't have polyuria anymore.
     
    Last edited: Nov 2, 2014
    JBB, NK17, zzz and 1 other person like this.
  8. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    It's a very easy test to do takes approx 1.5 hours. Best to do the test in the morning and do not eat anything for 8 hours before and do not drink too much the morning of the test.

    You go to nuclear medicine at a hospital or clinic that has the Daxor machine, they first take your exact weight and height and age and then have you lie in a bed and set up an IV and all the things things they need to do the test.

    The nurse or technician will then take a baseline blood sample. Then at time 0 they will inject you with a known amount of Daxor Volumex radioisotope and start a stopwatch. They will then take I believe 6 more blood samples at specific time points after (something like e.g. 12 min, 18, 22, etc.). Then you are done!

    With all those blood samples they will calculate a radioisotope transduation line and slope and as well as true hemocrit values and with this they can determine both your plasma and red blood cell volume and thus total blood volume very accurately. With your weight, height, and age they know what the ideal ranges are for red blood cell, plasma and total blood volume and can determine your deviation.
     
    Last edited: Nov 2, 2014
    Leopardtail, ahimsa, MeSci and 7 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,944
    Likes:
    22,144
    USA
    @leokitten Thank you for explaining all of that! I was wondering if they have offered you any treatment options based on their findings (or if they are stuck b/c you said they were baffled as to the cause and did not attribute it to autonomic dysfunction as @zzz mentioned.)
     
    NK17 likes this.
  10. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    LOL!!! Ugh doctors... when they cannot determine why something is happening they are afraid to offer anything, they are always worried they might do more harm than good, but I believe doing nothing is also harm :) Most doctors will never try empirical treatments but with ME/CFS you have to sometimes!

    Yes as you said they are stuck because they can not find a cause of the hypervolemia based on all possible heart, kidney and hematological tests, and you are right it could be due to autonomic dysfunction but that is very difficult to test and prove.

    I asked them if maybe we could try diuretics and they are afraid to do so because diuretics could do harm if not monitored so I'm stuck with nothing. I've tried OTC diuretics and supplement diuretics and they don't work, they don't increase urination.
     
    JBB, NK17 and Gingergrrl like this.
  11. halcyon

    halcyon Senior Member

    Messages:
    2,254
    Likes:
    5,279
    Interesting finding. How were you able to arrange for the testing, what type of doctor would refer you to have this test?
     
    Gingergrrl likes this.
  12. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    1. Look here for hospitals and clinics which have the Daxor http://www.daxor.com/clientlist.asp, there might be more I'm not sure the list is up-to-date.
    2. Call up nuclear medicine at the hospital you've chosen and make sure that they do the test frequently and carry the radioisotope.
    3. My ME/CFS doctor then fax the lab order "Daxor blood volume analysis" to the nuclear medicine department.
    4. I called them back to schedule the appointment. And that's it it was simple.
    I did my first test at NY Presbyterian Hospital and my second test at NYU Langone Medical Center. Both do the Daxor test very frequently (and are very experienced), mostly for patients in the hospital with heart failure or receiving a lot of fluids and they need to assess their blood volume.
     
    JBB and Gingergrrl like this.
  13. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Have your tried desmopressin?
     
    NK17 likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,944
    Likes:
    22,144
    USA
    @leokitten I was just curious why you did the test twice at two different hospitals? Did your CFS doctor or other doctors question the first results?
     
  15. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,875
    Maryland
    Yes every doctor was shocked, they said a person should not have severe to extreme hypervolemia unless they have some kind of life-threatening heart and/or kidney problem (which are by far the most common, not the other causes such a plasma proteins and as you said autonomic dysfunction). They thought there was some mistake with the testing and said I should wait at least one month until the radioisotope left my body and to redo the test. I decided I should do it at a different hospital just to be sure and the second test results confirmed they were even slight worse than the first.
     
    Gingergrrl and NK17 like this.
  16. halcyon

    halcyon Senior Member

    Messages:
    2,254
    Likes:
    5,279
    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?
     
    leokitten and NK17 like this.
  17. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,979
    Midwest USA
    This is very interesting!

    I'm wondering if the reason I feel better with Hizentra (subQ immunoglobulins) is because it is actually boosting my low blood volume? That would be a new concept for me for sure!
     
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,690
    Florida
    How about blood letting ? Lol. Seriously tho, would having your blood drawn regularly help this ?
     
  19. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,516
    Very interesting find @leokitten and indeed you're right when you say that most doctors won't treat any PWME on an empirical basis.

    It's been 2 months, at least, since I've asked my PCP to try saline IV and over a month that I'm waiting that she communicates with my ME specialist!

    While I'm rotting away with increased polyuria (I've measured the amount of urine in a 24hr period and will do it again, as well as measure the total 24 hrs intake of liquids and their nature) I read your post today and realized that I need to have the Daxor blood volume test run to finally find out objectively if I'm hypo or hypervolemic and hopefully get treated accordingly! Or at least try to find out the cause of the hypo/hyper volemia.

    Anybody with some spare batteries to share and an anti-frustration remedy?!?!
     
    Last edited: Nov 3, 2014
    leokitten and Gingergrrl like this.
  20. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,516
    @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.
     
    Gingergrrl likes this.

See more popular forum discussions.

Share This Page