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

[Allyson]

Thanks, will do
I should move to Melbourne

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

 

[anniekim]

I meant your personal blood volume. A tall female muscled basketball player and a short thin lady will both be represented in the ranges for blood volume by sex and age. It will be necessary to guess a little, but you doc might be able to help with that.

A point in another post is important too ... the size of red blood cells might also make a difference, its important to see that they are normal and well formed.

Red cell count being normal in decreased blood volume implies low total RBC count. This is a form of anemia if its correct, but not one docs test for. Thats why I suggested a calculation to see if total RBC was normal - in other words, if you restored blood volume would you have normal RBCs and hence normal oxygen delivery? If the answer is no, then clearly you need to not only restore blood volume but boost RBC production. If the answer is yes, then restoring blood volume alone may do the trick.

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

 

[alex3619]

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.

 

[alex3619]

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.

 

[Old Salt]

Thanks 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 everyone apparently

thanks anyway for the thought - much appreciated.

Ally

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.

 

[gag]

Yes it is not a bad country to live in I must say Geoff.

If you are looking out for the test I am guessiing it will only be done inf fairly large hosptals as it involves using a trace amount of nuclear material.

Royal Melbourne Hospital is one of Melbourne's biggest and best, associated with Melbourne University.

I suppose one thing they are missing though sadly is an ME/EDS/POTS ward and an IV clinic.

Possibly cancer centres may have nuclear medicine facilities too.

These are just informed guesses but might cut your search time down.

I think the main thing was I had mine ordered by a hematologist there @RMH but you could phone any pathology centre and ask them if they do the test.

Best of luck with it.

Ally

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

 

[gag]

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

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

 

[Allyson]

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

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

 

[Allyson]

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.

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

 

[Allyson]

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

 

[VeganMonkey]

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?

 

[Sasha]

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?

Just googled a bit and found this - is this what you were thinking of?

http://health.usnews.com/health-new...sure-may-weaken-brains-of-some-heart-patients

 

[ahimsa]

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?

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:

Geerlings and colleagues concluded that, although blood pressure lowering in general is beneficial in patients with higher pressures, the study findings suggest it can be overdone.
"Caution should be taken with further blood pressure lowering in patients who already have a low diastolic blood pressure," they wrote.

In patients with arterial disease, low baseline diastolic blood pressure was associated with more progression of subcortical atrophy, irrespective of the blood pressure course during follow-up.

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?

 

[ahimsa]

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.

 

[VeganMonkey]

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

 

[ahimsa]

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

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?

 

[Sushi]

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....

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

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

 

[ahimsa]

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.

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

 

[ahimsa]

I thought I'd add a couple more links. [ Sushi, you've probably already seen it, but the first one is an article from Cort Johnson's blog about Dr. DeMeirleir. It includes a video clip. ]

http://www.cortjohnson.org/blog/201...rculation-and-chronic-fatigue-syndrome-mecfs/

http://www.cortjohnson.org/treating...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

I hope this helps.

 

[Sushi]

ahimsa

Thanks!

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/

Sushi