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

[alex3619]

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.

Hi Old Salt , the issue you raised about how much easier it is to pump a lower blood volume applies to a lot of ME research, and probably many other diseases including EDS. In the absence of really understanding the mechanisms of the disorder, how do we tell if something we are looking at is a primary cause of the disorder, secondary to the primary cause, or compensatory to cope with the disorder? Low blood volume could be any of these. Cheney has commented that many of our issues, and the progression of symptoms, resembles that of heart failure. Is the problem caused by a failing heart, or as others have suggested do our hearts fail due to insufficient blood? These are questions that are not answered. Alex.

 

[ahimsa]

The links to Cort's blog don't seem to work, but I think this is the first one you listed?

http://www.cortjohnson.org/blog/201...ir-on-pain-in-chronic-fatigue-syndrome-mecfs/

No, it's a more recent article, dated June 2, 2013, title "The Blood Will Out." I don't know why the link is not working for you. (and maybe also not working for others?)

Here is the link again, this time using tinyurl to make it smaller:

http://tinyurl.com/mehqwls

I hope this one works! If not, I guess you could go to the main page for Cort Johnson's web site:

http://www.cortjohnson.org/

The article is not new enough to still be listed on the first page. But go down to the bottom and click to get to page 2. Or maybe this will work

http://www.cortjohnson.org/page/2/

 

[Sushi]

ahimsa

I can't get any of the links to work! I searched the article on google, found it, but it takes me to "page not found." Maybe his site is having problems?

Sushi

 

[gag]

Hi Old Salt , the issue you raised about how much easier it is to pump a lower blood volume applies to a lot of ME research, and probably many other diseases including EDS. In the absence of really understanding the mechanisms of the disorder, how do we tell if something we are looking at is a primary cause of the disorder, secondary to the primary cause, or compensatory to cope with the disorder? Low blood volume could be any of these. Cheney has commented that many of our issues, and the progression of symptoms, resembles that of heart failure. Is the problem caused by a failing heart, or as others have suggested do our hearts fail due to insufficient blood? These are questions that are not answered. Alex.

That's what I don't understand. Haven't they tested Cardiac function to rule out failure in CFS patients before. Also, getting a heart tested properly should be easily had anywhere these days, no?

 

[alex3619]

That's what I don't understand. Haven't they tested Cardiac function to rule out failure in CFS patients before. Also, getting a heart tested properly should be easily had anywhere these days, no?

No. And yes. The technology exists, the understanding that it is necessary, particularly under strict guidelines including insurance limits, is not out there. Further the kind of cardiac testing needed is rarely used, and I am guessing many docs don't even know it exists or only know of inferior older versions.

 

[Allyson]

That's what I don't understand. Haven't they tested Cardiac function to rule out failure in CFS patients before. Also, getting a heart tested properly should be easily had anywhere these days, no?

the failre may not show up til later in life
but yes many dos are now assessing for POTS/Oi and other heart issue
I have had a cardiac ultrasound for example and POT/OI testing

ALly

 

[Allyson]

Hi Old Salt , the issue you raised about how much easier it is to pump a lower blood volume applies to a lot of ME research, and probably many other diseases including EDS. In the absence of really understanding the mechanisms of the disorder, how do we tell if something we are looking at is a primary cause of the disorder, secondary to the primary cause, or compensatory to cope with the disorder? Low blood volume could be any of these. Cheney has commented that many of our issues, and the progression of symptoms, resembles that of heart failure. Is the problem caused by a failing heart, or as others have suggested do our hearts fail due to insufficient blood? These are questions that are not answered. Alex.

to get you started - here is a free app for measuring heart rate to check out if you have POTS and store measurements

(POTS is s very common cardiac symptom of ME/EDS)
It's called heart rate (free) on the apple store

This app also has a really cool feature called StandUp test which is great for measuring a rise in pulse for a POTSy.

I think it costs a couple of dollars to activate but it's really handy to have on hand to show your specialist your numbers.
Prevent the effects of white coat hypertension if you can do it in the comfort f your own home
cheers

Ally.

 

[Rlman]

Hi Ally,

were your Hematocrit (HCT) and hemoglobin (HG) slightly high as well?

did you ever get tested for absolute reticulocyte count along with the RBC, HG, Hct? if you did, was it high?

 

[Allyson]

HI Riman,

not sure about those - I think My Hb sits a bit high but will have to check it and get back to you, same for HCT.

I did once have low B12 but Sxhillings test showed I did NOT have pernicious anaemia.

My father had and was a carrier for haemochromatosis but so far my iron studies (done twice now) have been normal thought one brother and one sister now manifest that disease and have blood drawn regularly.

Have not had absolute reticulocyte count done as far as I know - should I ? and what would it show?

cheers and thanks,

ALly

 

[Allyson]

Hi Old Salt , the issue you raised about how much easier it is to pump a lower blood volume applies to a lot of ME research, and probably many other diseases including EDS. In the absence of really understanding the mechanisms of the disorder, how do we tell if something we are looking at is a primary cause of the disorder, secondary to the primary cause, or compensatory to cope with the disorder? Low blood volume could be any of these. Cheney has commented that many of our issues, and the progression of symptoms, resembles that of heart failure. Is the problem caused by a failing heart, or as others have suggested do our hearts fail due to insufficient blood? These are questions that are not answered. Alex.

Yes good point Alex- or alternatively, asblood is a connective tissue it could be "merely" a connective tissue defect whereby not enough blood is produced - and the POTs/Oi symptoms and others such as exertional dyspnoea are all worse because of that.??


best,

Ally

 

[taniaaust1]

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

That isnt always the case. Im quite sure i have low blood volume with my POTS (I take Florinef and lots of fluids to help that and it does help some) but at the same time I also have hyperadrenic POTS so with that I get spikes of very high BP too (the high adrenaline I get makes my BP go high, spikes up to 170/136 when standing even with the low blood volume.. possible a compensatory thing to try to get blood to my brain etc???

My POTS is so severe that I go unconscious at times due to it so I'd love to know how low my blood volume is thou since the florinef, I now just tend to collapse if I stand too long

 

[Rlman]

Hi Allyson,
I was just asking about reticulocyte count bc mine was slightly high. I have RBC, Hct, Hemoglibn always borderline high or slightly over. My WBC and Platelets normal. My blood pressure was high/normal 1st year of illness but now around 104/80. I think partly due to adrenal exhaustion. I'm trying to figure out whether my RBC, Hg, HCt are high for the same reason as your RBCs are high, that's why I was asking. Do you feel dehydrated or thirsty? My mouth is quite dry compared to pre-illness, but I'm not especially thirsty. Thanks so much for starting this thread and sharing your test results!

 

[Allyson]

I LOST MY LONG REPLY TO YOU SORRY _ THIS HAPPENS Nearly EverY time I TRy TO POST HERE - SO FRUSTRATING!!!!!!


WILL OD IT AGAIN SOON - TOO TIRED NOW SORRY

 

[Rlman]

also, my ESR is low, 2, classic for CFS illness. Is low ESR possibly due to low blood volume and higher red blood cell concentration? what was your ESR Allyson?

 

[Rlman]

another question for Allyson: do you urinate a lot? I do, so trying to see if that is a cause of low blood volume. If a person has low blood volume does that mean all the blood results are higher than what they really are?

 

[Allyson]

another question for Allyson: do you urinate a lot? I do, so trying to see if that is a cause of low blood volume. If a person has low blood volume does that mean all the blood results are higher than what they really are?

not sure what my ESR was just atm - I think normal - I think the high red cell count was the only abnormalitiy and that had persisted for 3 years

yes I pee a lot and drink a lot - both constantly - IM Vitamin B 12 stops this though for some reason

so if the peeing lowers my blood volume - but the excessive thirst and drinking would raise it again??

cheers

Ally

 

[MeSci]

another question for Allyson: do you urinate a lot? I do, so trying to see if that is a cause of low blood volume. If a person has low blood volume does that mean all the blood results are higher than what they really are?

It will depend partly on whether your polyuria is a water diuresis or a solute/osmotic diuresis, in other words whether your urine is dilute or concentrated. If it's concentrated it would be helpful to know what it contains, as among other things it could give guidance as to what kind of fluids you need to drink. If you're losing a lot of minerals you clearly need to replace these.

If it is dilute then I guess it could raise the blood concentration of some things, and if they get too high, water may be the best thing to drink.

Doctors in the UK are rubbish at working out the relationship between what's in blood and what's in urine...

 

[Rlman]

not sure what my ESR was just atm - I think normal - I think the high red cell count was the only abnormalitiy and that had persisted for 3 years

yes I pee a lot and drink a lot - both constantly - IM Vitamin B 12 stops this though for some reason

so if the peeing lowers my blood volume - but the excessive thirst and drinking would raise it again??

cheers

Ally

Hi Ally,
are you sure that your hemoglobin or hematocrit were not high or at high end normal? Having high RBCs usually automatically translates to high hemoglobin and hematocrit. Also, was your ESR below 5? My value of 2 is the lowest value of normal range but CFS researchers say below 5 is classic for CFS. Low normal ESR can be due to high RBCs.

 

[SOC]

so if the peeing lowers my blood volume - but the excessive thirst and drinking would raise it again??

Not entirely. At least that was what I was told by the docs. Low blood volume can be a hormonal thing -- low aldosterone in many PWME with low blood volume. Somehow the aldosterone is signalling how much water should be in your blood, so if that signal is off, your kidneys continue to try to keep the water in your blood too low. You can drink a lot, but your kidneys will just keep taking it out.

There are some drinking tricks that can help a bit or a lot for a relatively brief period, but drinking a lot will not improve low blood volume if you have low aldosterone. You'll put a lot of water through your system (and wash out vitamins and minerals and other goodies) but you won't keep much, if any, of the extra water in your blood.

You can trick your body for maybe a couple of hours (??) by fluid loading, which involves drinking a large amount of water (about 750 ml, I think, but you'd have to look it up) all at once. Evidently, your kidneys can't remove it from your blood as fast as your GI system can put it in, so for a little while you have increased blood volume. This can be helpful for a special event, but not so effective for routine use. Drinking water continuously doesn't have the same effect because your kidneys remove it as fast as you put it in.

That's how I understood what the docs told me, anyway.

 

[Allyson]

Not entirely. At least that was what I was told by the docs. Low blood volume can be a hormonal thing -- low aldosterone in many PWME with low blood volume. Somehow the aldosterone is signalling how much water should be in your blood, so if that signal is off, your kidneys continue to try to keep the water in your blood too low. You can drink a lot, but your kidneys will just keep taking it out.

There are some drinking tricks that can help a bit or a lot for a relatively brief period, but drinking a lot will not improve low blood volume if you have low aldosterone. You'll put a lot of water through your system (and wash out vitamins and minerals and other goodies) but you won't keep much, if any, of the extra water in your blood.

You can trick your body for maybe a couple of hours (??) by fluid loading, which involves drinking a large amount of water (about 750 ml, I think, but you'd have to look it up) all at once. Evidently, your kidneys can't remove it from your blood as fast as your GI system can put it in, so for a little while you have increased blood volume. This can be helpful for a special event, but not so effective for routine use. Drinking water continuously doesn't have the same effect because your kidneys remove it as fast as you put it in.

That's how I understood what the docs told me, anyway.

thanks Soc - that all makes a lot of sense

ceney talked about alodosterone levels too and that is when my polyuria is worse - at night when aldosterone levels change

my red cell count has been high for the last 3 years and was not always high

I do find taking more potassium helps me - and esp when I am crashing it helps lessen the crash

and other supps in general - vitamin c and zinc and Mg etc all help a bit - and I get a very bad infection if I stop taiing vitamin c

I drink coconut water too for electrolytes and high salt diet after I got sick of gookinaid - but coconut water gets expensive when you drink a litre a day.

I have heard that IM B 12 boosts blood volume - it sure helps me somehow

cheers

Ally