“For the first time, physicians have access to technology which enables them to obtain blood volume measurement rapidly and with a high degree of precision.” – Daxor Corporation
Blood volume is often low in ME/CFS, but it was not until recently that an accurate and easy method of measuring it was possible.
Some people with Chronic Fatigue Syndrome (ME/CFS) have been doing a bit more travel lately. It used to be that blood volume measurements were done at local hospitals, but with the advent of a more precise method some patients are traveling, sometimes hundreds of miles, to get to a medical center/research hospital that will do the test right. What do all these medical centers have in common? They have a Daxor BV-A 100 blood volume measurement machine. Blood volume measurement has never been done a lot even in ME/CFS, where blood volume is often quite low, and there’s a reason for that. Past techniques required spending 4 to 8 hours at a hospital, and on top of that weren’t very precise. Instead of actually measuring blood volume, they measured the ratio of red blood cells to plasma (higher ratio indicates higher thickness of the blood). If you were missing equal amounts plasma and red blood cells, though, as many POTS and ME/CFS patients are, the test can indicate your blood volume is normal when it’s not.
News Report on the BVA-100
Checking out how much blood is flowing in your pulmonary artery can help, but that requires an invasive procedure involving the insertion of a catheter, and still doesn’t specifically measure circulating blood volume. With all these issues perhaps it’s not surprising that blood volume testing has mostly been done in research centers. Daxor has produced an instrument, however, that they assert provides quick, easy and very accurate blood volume measurements.
New Approach
Enter the Daxor Corporation’s test. The Daxor test uses a small amount of a radioactive isotope (iodine 131) injected to test blood volume. During the 1 1/2 hours following the injection, the concentration of the isotope in the blood is measured and compared to the concentration in known amounts of the blood. The measurement is repeated five times. The patient’s height and weight are used to determine normal blood volume values. Daxor states their machine accurately measures blood volume, red blood cell volume and plasma volume. Its ability to distinguish between low red blood cell volume and plasma volume means it can identify which drugs (to increase red blood cells or plasma) will be most effective for people with low blood volume.
Since low blood volume seems to be almost a given in ME/CFS, why take the test? One reason might be to determine which part of your blood (red blood cells or plasma) is low. Another is to monitor your blood volume and determine how effective treatments are at increasing it. A third might be simply to demonstrate to your doctor that you have a physiological issue.
The Test
Last year I had a brief talk with the research director of Daxor, Dr. Joseph Feldschuh, MD. (The following is from memory.) Dr. Feldschuh noted that the blood volume findings in ME/CFS are unusual. Usually if your plasma volume drops, your red blood cells increase to compensate for that. Likewise, drops in red blood cell counts (anemia) are usually associated with increases in plasma volume. In ME/CFS, however, both are often low. Only the Daxor test, he asserted, measures both red blood cell counts and plasma volume accurately. If your volume is low, drugs like epoetin alpha can increase red blood cell counts, and drugs like fludrocortisone (Florinef) can increase low plasma. (Other possibilities exist.)
Running on empty during surgery is not a good idea and has probably contributed to numerous patients relapsing afterwards
While most doctors know nothing about blood volume, ME/CFS experts commonly prescribe IV saline as an aid to maintain blood volume and to help ME/CFS patients recover from stressful situations including surgery. Given the stresses put on the cardiovascular system during surgery, Dr. Feldschuh wasn’t at all surprised at all to hear that people with ME/CFS sometimes crashed after surgery. Some studies have found reduced blood flow to the brain is already present in ME/CFS, so it’s easy to see why some people with ME/CFS feel ‘loopy’ and unusually weak after surgery. The Daxor website proposes that ensuring normal blood volume levels are present would help avoid brain damage that can occur during surgery. Dr. Feldschuh noted that more women than men have ME/CFS or FM, and women tend to have higher rates of complications from cardiac bypass surgery. Why that happens is not clear, but he suggested they may have a greater tendency toward low blood volume than men have. I know of one fairly healthy ME/CFS patient who relapsed badly after surgery, and who started to snap back only when she was given IV saline. She clearly had severe blood volume issues. Feldschuh proposed that blood volume measurements should be done prior to surgery even in the healthy populations. Dr. Feldschuh himself provided a cautionary tale of surgery and blood loss. A Daxor blood volume test revealed Dr. Feldschuh lost ten times as much blood as estimated by his anesthesiologist and surgeon during emergency surgery to repair a fractured hip. (He used his own banked blood to make up the loss.)
Getting the Daxor Blood Volume Test
Most doctors will not have a Daxor machine, and you may need to go to a research hospital to find one. The Daxor Corporation lists almost sixty centers in the U.S. that have a Daxor blood volume measurement machine.
Health Rising is not affiliated with and or receive any funding from Daxor Corporation
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Thanks for the informative article Cort.
I am one of those that responds well to saline IVs. Does anyone know how much the test costs and whether insurance will pay for it? And if a person is found to be low in blood volume, would insurance then cover the IV saline ?
That could potentially change the quality of my life for the better.
Lynn
My impression is that the test is not that expensive but I don’t know the general cost. I will try and find out. Dr. Felshh…whatever it is 🙂 said it is usually covered by insurance.
Did you find the cost? Is it covered by insurance for Chronic Fatigue Syndrome diagnosis?
The test comparisons are not what I have read about before. The standard technique for measuring blood volume, at least every time I can recall looking at this, is using a blood marker. You inject a patient with a marker, often radioactive, then let it circulate. After a specified time you remove a blood sample and test the concentration of the marker. Using that you can compute the blood volume. This is highly accurate. However you have to inject a patient with a potentially dangerous foreign substance. Its not a great test on safety grounds.
Yes, this is the test I had done. Typically, iodine-131 is used for a plasma marker, and chromium-51 is used to tag red blood cells. Although these are both radioactive, like all radioactive isotopes used in nuclear medicine they have a short half life, and not much of them is used. The biggest risk is if you have an iodine allergy.
Last week asked my dr for this test. She, of course, looked at me sideways, told me I meant something else, etc… Finally, she talked to the hematologist who said they don’t do that anymore as it was only for testing for Polycythemia Vera & now they have DNA test for that…oh well…
Do you know if this test is available at the Neuro/Immune Research Center at Nova Southeast University?
According to Daxor the two sites in Florida with the machine are. (One is a veterinary medical center :))
Orlando Regional Medical Center
http://orlandohealth.com/orlandoregionalmedicalcenter
1414 Kuhl Ave.
Orlando, FL 32806-2008
321-841-5111
University of Florida Veterinary Medical Center
http://www.vetmed.ufl.edu
2015 SW 16th Ave.
Gainesville, FL 32608-1166
352-392-2235
At Nova Southeast University has taught and experience about Measuring Blood Volume?
I had the blood volume test done at a Montreal hospital in Canada. It was covered by the province Ohip. At that time I lived in Ontario. I will get another test done when I am finished detoxing to see if it goes back to normal. I had a 40% reduction is circulating red blood cells and a 15 % reduction in plasma volume. The IV of saline did not help me but when I had them with oxygen they really help me for a few days, As far as I know my N.B. government insurance will cover it when I get it done in Montreal again.My fatigue all went away for a few days. It was heaven. I know now what is causing the fatigue, Low blood volume.
Forty percent drop – wow…That’s really something. It sounds like you were getting enough oxygen into your cells with the saline and oxygen to feel better. That makes me think of the exercise studies suggesting not enough oxygen is getting into our cells. You got more oxygen and then had the volume to deliver it. I would think you would benefit from something that would raise your red blood cell levels (epoietin ???).
So, hyperbaric oxygen would help low blood volume?
My concern is WHY low blood volume? Is the reason, the body is trying to relieve the work load of the heart, on a day to day basis? A natural compensation measure?
How about COQ10, Acetyl L-Carnitine and Hawthorne extract and Omega 3 therapy to strengthen the heart to enable it to handle a full load of blood volume?
The point is: there is a reason for “low Blood volume”! Or is it a deficiency of Florinef? RP
The primary problem is not the heart; in fact, the heart eventually suffers if low blood volume is maintained over long periods of time. Treatments for the heart have no effect on low blood volume. Nor is the problem a deficiency of Florinef.
Blood volume is controlled by aldosterone, which is produced in the adrenals. ME patients typically have a down-regulated HPA axis, which results in low aldosterone levels, among other things.
Yes, the Dr. noted that the adrenal glands produce the plasma while the bone marrow produces the red blood cells, if I remember correctly.
I totally agree with you! I was thinking the same!
So how about some form of chronic internal bleeding? Would that cause low BV?
Such as ulcers or (for women specifically) retrograde menstrual bleeding.
You say you think Ins. will pay but I bet Medicare won’t pay I do have low blood volume was tested at Johns Hopkins but nothing changes this fact tried Florinef didn’t work In any case no centers remotely close for me to get this “new accurate ” test Midwest severely underserved
Thanks for the information…..PKK
This is so funny because I have third stage kidney failure and of course they don’t know why, they just think my kidneys don’t get enough blood. They don’t know why my kidneys don’t get enough blood could be because even though I am chubby unless I am in a fair amount of pain my blood pressure runs about 96/68. They don’t know why it does that and makes me pass out, even have these funny things that look like seizures. But I can’t take medicine for it became of the kidneys so I drink Gatorade and take salt when it happens. See I have Fibromyalgia. My tests say I have nothing in my body but inflammation of unexplained origin. I do have a thyroid destroyed by nodules, we don’t know why. Interstitial Cystitis, we don’t know why. My BFF says I should wear a shirt that says ULO, since I spend most of time on my wonderful, comfortable giant bean bag, Unknown Laying Object.
I am not a pessimist, I never tell anyone but you guys and my 2 BFF about this. I just know when I get a new symptoms and my sweet, wonderful Doctor wants to run a test, it will come back the same. Maybe I am a life form who isn’t adapting well to Earth. Hmmmmm
I have Secondary Adrenal Insufficiency and most of this is what happens in my disease. They haven’t quite decided if I have primary autoimmune yet, however for years I was diagnosed with CFS and FM. I also have autoimmune thyroid disease.
I think a lot of people could do with testing on adrenal function when diagnosed. It might have saved me a lot of years wondering why.
hugs all xxx
So what tests would that be? Cortisol? (Because mine has always come back normal)
Thank you for this great info, Cort. I saw a cardiologist today about related issues, and shared info about this test as well as several of the studies that have shown low blood volume in ME/CFS. I currently have an HMO plan through my husband’s job, and the cardiologist said that he knew that our provider group as well as our HMO would not cover such a test even if he recommended it, but that a PPO might with documentation and referrals. He would not go into IV saline for me and suggested that I talk with Dr. Chia, my specialist, about it. I expected exactly that. For the ten years since I’ve been disabled by ME/CFS we have chosen to stay with our HMO because our great GP and Dr. Chia, accept them, and the other referrals I’ve needed have been to doctors I’m very pleased with–no doubt because Dr. Chia has helped out neighborhood doctors to be better informed.For the last decade it has cost less to have the HMO AND pay out of pocket for weekly acupuncture AND pay out of pocket for an annual specialist with some ME/CFS perspective. But last week my husband and I realized that we might be entering a new era of care for me as heart issues show up. My visit today is to rule out the kind of issues that are much more easily addressed by standard cardiac screenings. I’m thankful for those, though I suspect that what is causing issues for me will not be assessed or treated that way. TBC! But thank you for this timely info for me, Cort.
And by the way, Jennie Spotila’s blog post today at http://www.Occupycfs.com is all about her experience with IV saline. And I”ll bring that to my next appointment with my GP. We have to be the ambassadors for this illness. For now at least.
I have not been diagnosed with ME/CFS but suspect I do have this disorder, would this test confirm if you have ME/CFS? I do have fibromyalgia would the test be of any use for that illness?
Thank you for all the informative articles you post on your blog I look forward to them everyday:}
Good questions. I hope someone attempts an answer soon 🙏
Deborah,
Have your cortisol levels been tested? It sounds like you might have adrenal issues. Read about Adrenal Insufficiency.
Peace, Love and Harmony,
OM
Although this seems more targeted, there is already a machine that measures blood volume – Bio Z Impedance – A few cardiologist in Denver use it to measure several heart functions including blood volume. http://www.sonosite.com/sites/default/files/bioz_cardioprofile_manual.pdf
My Dr. was on the list of sites with the equipment. I asked him at an appointment yesterday. Apparently they had issues with the company that licenses the technology and never really were able to use it much. They finally gave up and returned the equipment. I was really looking forward to getting that information.
If you still see the same doctor, maybe you could let them know about this new method for measuring blood volume. It’s not on the market yet for medical use, but it should be soon. In the meantime, the company has a program to lend out the apparatus to suitable parties at no charge for two months.
https://detalo-health.com/
https://detalo-health.com/demonstration-program/
This method uses blood tests and breathing to measure blood volume – no isotopes. So it should be much easier to operate, and they could try it first using the demonstration program.
Most blood tests I’ve had, show abnormally high levels of hemoglobin. Does this mean I can’t have low blood volume? Is this normal for an ME patient?
I had a Daxor test. I saw the results but don’t no how to interpret them. The doctor I see here says it was a normal test and I don’t need to worry about extra hydration. But I don’t know if he really knows how to interpret it. To me it looked like it was normal but low normal. If so that could have an effect. I have a orthostatic intolerance, hypertension and possible hyper-adrenergic dysautonomia. I am also bradycardic between 50-60, not POTS.
Nancy Klimas did a blood volume trial years ago giving blood making drug to CFS patients as she wanted to find out if it reduced fatigue, I think the trial failed though but it was a long time ago. If someone could find out why it failed if it did this would be great information to have. I spoke to someone once who took a drug to increase RBCs in the blood and he said it was great for a few years and then he had to stop as his numbers went too high.
I have a little more information about blood volume testing that I have picked up from watching a lot of video lectures on orthostatic intolerance and POTS. (The Ehlers-Danlos Society has many good educational videos that are relevant if you have these conditions. The general information provided is relevant even if you don’t have EDS.)
Blood volume testing is not routinely conducted in clinical settings. The nuclear medicine testing described above was used some decades ago in the treatment of kidney disease (I think) to work out drug dosages, but advances in pharmacology meant that the testing was no longer needed and the equipment was retired and not replaced.
DAXOR testing equipment, which uses a new, non-nuclear method, is not common.
These days, blood volume testing is almost exclusively conducted in research settings.
Standard blood tests (when a vial of blood is drawn and analysed) can only look at the ratio of blood cells to plasma. They cannot measure blood volume.
Low blood volume can exist in the absence of dehydration, so standard blood tests that rule out dehydration cannot give any information about blood volume either.
So, to summarise: even if your symptoms point to chronic low blood volume, it’s very unlikely your blood volume will be tested because the testing equipment simply isn’t available.
Low blood volume will be diagnosed by your doctor looking at your symptoms, and by monitoring whether you respond positively to volume enhancement interventions.
I say “will be diagnosed”, but it seems that many doctors are unaware of the symptoms of chronic low blood volume and even of orthostatic intolerance (its main symptom), so you may have a long road to get help.
In particular, I have found that many doctors do not know that chronic low blood volume can exist in the absence of dehydration. If you have to explain this, think of the body having enough water on board, but not distributing it correctly.
This may be why intravenous fluid infusions help some people: the intravenous delivery bypasses the faulty mechanism that is not getting enough fluid into the blood. (This mechanism is unknown.)
Hello Cort,
I recently happened upon what looks to be a cheaper, easier and safer way of measuring blood volume compared to radio isotope methods.
https://detalo-health.com/
It is only available for use in sports science applications so far, but the company is hoping to register it as a medical device this year (2023).
I feel this could be an amazing boon for research into orthostatic intolerance and eventually for doctors to monitor patients’ progress, adjust dosages of medications, etc.
Cheers,
Sarah
(chronic orthostatic intolerance)
Just to add that the company I mentioned has had its medical version approved in Europe.
I’ve learned that CO2 rebreathing has been around for some time, but I think this is the first time it has been made available in a medical device.
NASA uses CO2 rebreathing in blood volume experiments to better understand how astronauts react to losing blood volume in space.
The device being sold by Detalo Health is not particularly expensive for a medical device. All it needs to operate is a staff member trained in phlebotomy, a canister of CO2, a laptop, and access to a pathology lab for blood gas analysis (routine test done in most hospital labs).