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

[Allyson]

This Q&A with Dr. David Bell from 1/15/10 is worth reading. He talks a lot about low blood volume.

http://phoenixrising.me/archives/11814

Regarding blood transfusions, he said that they make you feel "a little bit better for a week or two weeks," but, regarding ongoing transfusions, he said, "in today’s day and age, you won’t find any physician who will do that. Maybe a haemotologist."

I'm not sure of the exact reason.

HI Forbin

I was thinking of saline rather than blood transfusion

It is the plasma or blood fluid i am low in not the blood cells so saline would sufffice to replace that.

They are very careful now of giging anyone a blod transfusion - due to teh HIV risk i think
I know it used to be done very often say if you had low Hb after surgery
Now they give you iron supps (plus or minus vit c) and tell you to eat more red meat and musrooms for a wfew weeks a the risk is not worht it - so no ongoing transfusion would nt b good idea if avoidable.



I knw a few of Dr Don Lewis' patients here have saline IV infusions but have not further details

Cheers

ALly

 

[Allyson]

Hiya Alley,
Really glad you got a concrete result.
Where did you get the test done? Do you know which Melbourne hospitals offer it?

Hi Persimmon

thaks so much

I got it done at Royal Melburne Hospital

IT was ordered by a hematologist there.

MY GP had referred me to RMH hematology clici as ihad a high red cell count for a few months


He did not know much at all about EDS and evidently did not even believe in ME /cfs but he ordered the test when i said firmly that Yes, I would like to have it please - as I knew low blood volume was supposed to be a problem in these conditions.

SO I am not sure if a GP could order the test for you....

oh, but
It needs to be done in nuclear medicine so i imagine it needs to be in a hopsital.

Let me know if you want more info ..

Ally

 

[Allyson]

Sherlock How do you know if your excessive histamine is from MTHFR or MCAS? I have MTHFR mutations, and most of the symptoms of MCAS.

HI Leela

I got tested for the MTHRFR gene and it all came back negative for what it is worth

I do hav elots of allergies and redness etc though.

cheers

Ally

 

[Allyson]

In my blood tests it always comes out that my red blood cells are too small. What is that about? Apparently quite common in ME/CFS according to my specialist.

Then I would get a referral to a hematologist too if I were you Vegan Monkey

Always worth checking something like that out

My Gp is fantastic and always refers me for anything she is not sure about . I am lucky to have her in my court.

Best,

ALLY

 

[Allyson]

"CFS face"! Haha! I know it well....

He he, true Leela

twice now i have seen a docs face change totally when you come up with a new diagnosis so i have conclusive proof that it exists..... and they do not just have a bad case of indigestion while you are there lol.!

I think the heroes though are the docs like Dr Lewis and the many others who have been researching this condition for years in the face of skepticism and scorn by many of their colleagues in the medical profession - let's hope that changes and that they are vindicated soon.

cheers

Ally

 

[Allyson]

Hi Ally,

As Sasha says so eloquently puts it a cause for celebration to bring the imaginary in to the realms of REAL; proof and a spring board for some kind of treatment.

Will you diary your journey from here Ally?

Was the testing difficult to obtain and could you tell us a little more about it? And is it as the title implies associated with mast cell?
Apologies for the Spanish inquisition, its just all so fascination.

Thank you
Kindly regards
allyb

HI ally b and thanks !

No worries at all yes it is exciting news I think and yes i will keepp posting updates.

NO the name of the test though is RED CELL MASS


it has nothing at all to do with mast cells

I am not sure why that is the name
my test was to measure the relative proportion of red blood cells to plasma in my blood

my blood test shwed that I had too many red blood cells

but the hematologist said that ccan be becuse you have too many red cells OR because you have too little fluid (plasma) in your blood so tht makes the red cell count look higher.

So this test was to determine the relative proportions ot Red blood cells to plasma

Ure enough my red blood cell numbers were OK
But my plasma or blood flud levels were low..


Hope this helps - let me know if you want more info

Best,

ALly

 

[Allyson]

Thank you Sherlock,

Dur me! must be my dyslexia, when I was a kid I used to write about it....... in my 'Dairy'
I'd blame it on the brain-fog but today was a good day and I wasn't even standing!

Hi Ally B -

I do that ALL the time - transpose letters in typing - it is called a dyspraxia!

I have yet to check out if it is worse on foggy days.....good idea.

But my typing is shocking as a result

I can mirror-write backwards simultaneously ( ie forward with lrigh and same thinng in morror writing with left hand at the same time ) easily though- which comes in SOO handy!

I wish lol..


ALly A

 

[Allyson]

Like a good detective story.

Allyson, I doubt you could get whole blood transfusions, they mostly now separate blood into the components like packed RBCs, platelets, frozen plasma, etc.

You might get plasma, but really you might just need saline IV. I'm assuming that many with OI/POTS must have tried that over the years. I'd think you'd just urinate it out, for the same reason as getting low blood volume in the first place. But how long would the benefit last?

It'll be interesting to see how long it lasts for you, if you get to try it out.

Hey guys, thanks.

I think IV saline woud be good to try and no it is not that common here in Australia yet.
Though i know some POTs people use it regularly.

And some are having Magnesium infusions too.

Sushi mentioned IV clinics in USA but I am not aware of any of them here.

Iv saline would avoid any risks associated with plasma too.
Yes Prof O'Callaghan said you would pass it out in a day or two - I hav not spoken to him since i got these results though. But I might be able to do somthing in that day or two without crashing badly.

Evidently though from this test drinking electorlytes en masse whihci havve been doingfor ags doe not correct my plasma deficiencies.
I DO notice though I take my IM b 12 shots regularly they stop the polyuriaand nocturia - and hence .. I thnk .. the polydipsia. (I stopped the B 12 shots 2 weeks or so before this test as I had read that it boosts blood volume.)

Th B 12 shots also improve my sleep markedly - but maybe that is because i am not getting up to pee so often ! Has anyone tried B comlex shots please BTW?
The genticist told me B 12 and vit C are vital in forming connective tissue so that may be a benefit too. So i wondered if B complex would help even more?

Yes I am pretty keen to try out IV saline now and see what happens.


cheers.

Ally

 

[Allyson]

His ME face! I like it!

That's a fascinating account. I didn't realise that if you could establish low blood volume, it would actually be treated.

Any UK patients reading this who've either had this test and/or had treatment for low blood volume?

Yes I am looking hard for the right emoticon to depict an ME face Sasha ! lol

Hope I dont see too many more of them in real life form now ont - I am going to have the report framed

- it is actually quite a nice looking formatted A4 document - not your usual lab report.



Ally

 

[alex3619]

If you know the blood volume, and the RBC count, you can calculate to see what the RBC count would be if volume were restored, and see if its adequate. I suspect you would then qualify for anemia, even if the RBC concentration is high now, but I would need to do that calculation but I am not up to it now. Also, we dont have an exact figure for your normal blood volume, so there would be a lot of error potential in the calculation.

 

[VeganMonkey]

Then I would get a referral to a hematologist too if I were you Vegan Monkey

Always worth checking something like that out

My Gp is fantastic and always refers me for anything she is not sure about . I am lucky to have her in my court.

Best,

ALLY

I will do that. I'm with several doctors, so I will ask the first one I see. I got all the blood test and other results nicely put in a booklet for me by one of my doctors, very handy! Possibly with the small red blood cells it could be possible that makes my blood volume small too? Who knows. It does mess up regular tests because I show up as anaemic because of it even though I'm not.

The B12 injections are awesome, so far that's the only thing (and a special diet for IBS) that's doing something useful for me. Not for my sleep, but I need a little less sleep and recover faster. Now it's getting winter it will be very interesting to see if it still has that effect when it's cold, I'm always more ill and sleep more in winter. I started injecting in spring.

 

[Allyson]

I will do that. I'm with several doctors, so I will ask the first one I see. I got all the blood test and other results nicely put in a booklet for me by one of my doctors, very handy! Possibly with the small red blood cells it could be possible that makes my blood volume small too? Who knows. It does mess up regular tests because I show up as anaemic because of it even though I'm not.

The B12 injections are awesome, so far that's the only thing (and a special diet for IBS) that's doing something useful for me. Not for my sleep, but I need a little less sleep and recover faster. Now it's getting winter it will be very interesting to see if it still has that effect when it's cold, I'm always more ill and sleep more in winter. I started injecting in spring.

Yes - RMH hematology is good and would be up with the latest - their medical knowdege has always been terrific I have found. Yes funny aout th IM b12 - or me it is wonderful too but oly for slee - but that is enough! aPPARNTLY it helps some with eneryg but not me.

Good luck with it and do let us kno how you get on - I had dto kind of insist on gettigng that Red Cell mass test so you may need to do that too - or ven request it if theey do not mention it - i would.

best

Ally

 

[Allyson]

If you know the blood volume, and the RBC count, you can calculate to see what the RBC count would be if volume were restored, and see if its adequate. I suspect you would then qualify for anemia, even if the RBC concentration is high now, but I would need to do that calculation but I am not up to it now. Also, we don't have an exact figure for your normal blood volume, so there would be a lot of error potential in the calculation.

Thanks Alex - the hematologist worked out the percentages - 46 and 47 percent were on my current slip and on my 1998 slip so he deduced form that that the RCC was normal.

That is a good very point you make though - i had not thought of that and did not get much time for questions or reflection as they were a doctor short that day so I got bustled out.

I had wonderd about normal blood volume - I had heard 5 litres for men and " a bit less" for women ( plus ca change eh?)
But i would have thought that would be something not too hard to have pretty exact figures on now - from autopsies?
OR do you mean MY personal blood volume norm?

Thanks again I wil give that more thought.

Ally

 

[alex3619]

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.

 

[Allyson]

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.

Thanks ALex - well they did weight and height measure ments of me on the day of hte test so I guess they have a range that they slotted me into.
I am guessing they would have checked the size of the cells in an FBE but i will check it.

@Vegan Monkey how di they find yoru blood cell size was abnormal please?

Your last par is indeeed spot on - I wil check thatout with Prof O'Callaghan at first opp -and in fact email it to my GP for consideration as she is very good too nd get back to you.


Cheers and thanks again so much for the useful insights and support - Alex and everyone else who has kindly responded.

Best,
Ally

 

[VeganMonkey]

That was my CFS/ME specialist who checked it, he checked for it because it happens to more of his patients, but I can't remember what the tests was called

 

[gag]

I just got the results from my Red Cell Mass test which was done to measure blood volume
It was a fairly straightforward blood test over a couple of hours.

Apart from my BP dropping 20 mmHg on standing - when it was finally measured correctly - this is the first test showing anything wrong . ( edit - on and my MRI which has a some things on it that i need to get checked out; oh, and a consistently low CRP)

But something rather seriously wrong.

I have low blood plasma volume - It is 2.48 litres - That is 30 mls per kg when the normal range is 40-50 mls per kg.

My whole blood volume is 4.33 l itres (52 mls per kilo when normal range is 60-80 ml/kg).
　
Maybe IV therapy twice a week would get me mobile.?


............................................................
"The findings demonstrate reduced plasma volume consistent with "stress polycythemia" or dehydration."
(The polycythemia was ruled out by the haematologist.
They instruct you what to eat and drink pre-test so it's not normal dehydration.)

Whole blood volume is 4.33 l itres (52 mls per kilo when normal range is 60-80 ml/kg).
Plasma volume is 2.48 litres (30 mls per kg.............. normal range is 40-50 mls per kg).

.......................................................

Low blood volume I have read is common in ME. It is stated as such in the International Consensus Criteria of 2011 for ME/cfs (of which Dr Don Lewis is a co- author).
........................................................

Incidentally anyone reading this may be interested in my thread on defining what fatigue means for us - especially now in light of this finding and I would welcome any considered feedback on that topic there.

http://forums.phoenixrising.me/index.php?threads/fatigue-or-not-fatigue-that-is-the-question.23219/

Many thanks in advance for any replies.

best

Ally

HI ALLY:

I also have high Hgb for a few years, and I was wondering how expensive is the nuc test RCM you had?
I'm in the US, and I don't know how pricing compares to Aus, but what was the cost anyway for you?

Thanks so much,
Geoff

 

[Allyson]

HI ALLY:

I also have high Hgb for a few years, and I was wondering how expensive is the nuc test RCM you had?
I'm in the US, and I don't know how pricing compares to Aus, but what was the cost anyway for you?

Thanks so much,
Geoff

Hi Geoff,

there was no cost for this test in Australia; it is coverd by our public health system.

Good luck with yours and please let us know the results.

Best,

Ally

 

[gag]

Hi Geoff,

there was no cost for this test in Australia; it is coverd by our public health system.

Good luck with yours and please let us know the results.

Best,

Ally

Thanks, will do
I should move to Melbourne

 

[Allyson]

Thanks, will do
I should move to Melbourne

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