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UK: has anyone had a blood volume test? Which one?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sasha, Apr 12, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Wondering whether to do this (because I have OI and so many PWME have low blood volume and I want to know exactly what issue(s) I've got rather than just keep trying drugs at random).

    If so, I'm not sure which test to ask for, or even if different ones are available. Presumably one could have low plasma volume and/or low RBCs, so you wouldn't want one based on RBC density.

    Anybody have any advice about what's possible in the UK?
     
    keenly likes this.
  2. ryan31337

    ryan31337 Senior Member

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    I had a look and Red cell mass/plasma volume estimation seems to pop up in various NHS hospital's lists of services. I guess most with a nuclear medicine department? Getting a referral for it though...good luck. Would expect the assumption is its easier to just throw some volume expanding drugs at you and see what happens.

    My local university hospital demands the test referral comes from a haematologist...maybe you can find one with an interest in OI?
     
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  3. Sasha

    Sasha Fine, thank you

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    I think I can get a referral but they usually want me to tell them who and where to refer me to. I haven't reacted very well to the drugs I've been offered so far.
     
  4. ryan31337

    ryan31337 Senior Member

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    Good luck! I'd be keen to hear how you get on.

    I have a tilt test tomorrow and CPET next week, both on NHS...wonders never cease :)
     
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  5. Sasha

    Sasha Fine, thank you

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  6. ryan31337

    ryan31337 Senior Member

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    Thanks @Sasha. It was thoroughly unpleasant as you'd expect. I was a bit surprised to find that my lights went out after 8 minutes! Big crash in BP and HR.

    I've never fainted before, a few months back when I was in much worse shape I was going for 45 minutes in a standing test before getting anywhere near as close to syncope. The table is brutal :eek:
     
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  7. Sasha

    Sasha Fine, thank you

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    Sorry it was so horrible! Did they give you IV saline?
     
  8. ryan31337

    ryan31337 Senior Member

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    Nah, was back to my senses pretty quickly. The nurses were good and got me down with my legs up in seconds, so I didn't fully pass out. Just annoyed with myself that I didn't take a snap of the results on the screen before I left!
     
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  9. ahimsa

    ahimsa Rarely on PR now

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    This is true! It's also why I often say that people who do "poor man's tilt table test" may end up with a false negative.

    Standing still (or attempting to! you generally shift around more than you think...) just does not stress the body's orthostatic system in the same way that the tilt table test does. I think a lot of people with some form of autonomic problem that could be seen on a tilt table test are going to seem fine according to a simple standing test.
     
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  10. ryan31337

    ryan31337 Senior Member

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    Very much agree that a standing test can give a false-negative for syncope. In both the standing and tilt table tests (I wasn't strapped in that tight) I only got close to syncope when I forcibly relaxed my legs, glutes and core muscles and let myself 'sag'.

    For me the standing test was actually more reliable for showing POTS though, as I get slowly symptomatic way before any syncope event occurs. The tilt test was too aggressive in comparison and I didn't have a chance to clearly show the increasing tachycardia & other symptoms that appear to fit a hyperadrenergic POTS profile when upright. I assume normally my muscle activation/movement is enough to stop it from progressing to a full faint.

    Sorry @Sasha for going off-topic. For what it's worth my orthostatic tachycardia, hypertensive episodes and wider fatigue/symptoms were a lot worse for a period of months when it was presumed I had a lower blood volume (no proof but lots of indications). Thankfully this has apparently improved with salt loading and time. Out of interest, have you been checked for coagulation issues?

    Its a mighty confusing state of affairs. I can't get my head around it all, I wonder if anyone actually can. My POTS specialist shied away from prescribing volume enhancers due to the hypertension, yet others like Dr Bell go against conventional wisdom and give IV saline to improve those with hypertension on the assumption it is due to volume deficit. I can see why endothelial dysfunction is an attractive theory if it can explain away all these irregularities and changing states.
     
  11. Sasha

    Sasha Fine, thank you

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    No - what would be the rationale?
     
  12. ryan31337

    ryan31337 Senior Member

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    Hypercoagulation in ME patients has been talked about here before, mixed results from studies etc. Its listed as another impact of endothelial dysfunction.

    I asked my GP to check because there's family history of thrombosis and Factor V Leiden deficiency, unsurprisingly I'm also positive with thicker blood.
     
    Sasha likes this.
  13. lnester7

    lnester7 Seven

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    I had one done at Cleveland but they are not that helpful, is not going to change your treatment plan. You can hydrate and if you over hydrate you will know (I get pressure in the head). They will try all combos anyways. So I am not sure is worth the money, when I was done with all the testing I was 20K in (I don't know how much out of that was the BV). To be told to drink more water?!!!>??!!
     
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  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Sasha did you get anywhere with this? Seems strange low blood volume mentioned so much with ME and POTS but hard to find UK testing.

    On another thread they mention measuring volume of liquid drunk and urine and taking evidence of discrepancies to a doctor to back up need for blood volume test.

    In Casualty recently I asked if they'd test it. Nurse said they would but think he interpreted as blood pressure. When asked again there was confusion. They didn't seem to know what I meant. Said my blood pressure would be really low if that was issue. Is that true?
     
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  15. Binkie4

    Binkie4 Senior Member

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    @ryan31337
    @Sasha

    Some time since this thread was active but maybe you'll pick it up. Hopefully so. I too have familial thrombosis issues and was diagnosed with factor v Leiden in 1998. ME diagnosis in 2008.

    Your other posts also referred to ME issues I am trying to sort out( POTS, blood volume) so hope you won't mind if I try to pick your brains. Please ignore if this is not currently possible. My gp is totally NICE focussed so if I am to get any further help I need to present a case to him. That may make no difference but I want to try.

    I have talked to my GP and a cardiologist about low blood volume in ME but both had no knowledge of this or in fact that it could be measured ( GP, unsure about cardio. He didn't let on). I believe i have OI ( I function reasonably when reclined in bed, not upright, huge difference) but tested negative for POTS ( poor mans test) by the cardio who only waited about 2/3 minutes so it wasn't a full test.
    I felt enormously better quickly on the one occasion I was given saline ( in hospital in Cambodia- superb medical care), and on the one occasion I had oxygen by face mask on a plane.

    While there is no treatment for ME, I would like to get a better quality of life by trying to get symptoms of OI and low blood volume treated. Did you ever develop any view of a possible link between factor v Leiden and blood volume? I know nothing scientific about this but intuitively, it doesn't seem impossible. A counter argument is that my family members with factor v do not have ME. I would also like to get more oxygen to my brain. Cognitive deficits are getting worse.

    If your researches have turned up any leads, would be grateful to hear them.
     
    Sasha likes this.
  16. Sasha

    Sasha Fine, thank you

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    Hi @Binkie - I didn't have a blood volume test, in the end, and I don't know anything about Factor V Leiden.

    I'm sorry not to be of more help!
     
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  17. bombsh3ll

    bombsh3ll Senior Member

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    Updating an old thread just in case anyone in the UK is interested in having a blood volume test;

    I had this done yesterday at the BMI Cromwell Bupa Hospital, Cromwell Rd London. Total cost £575. Would be £505 if you have a recent haematocrit result. GP referral was needed. Staff were very helpful and samples are sent to UCLH to be processed. It is done in the nuclear medicine dept and follows the the same principle as what DAXOR do in the US.

    This test is for total blood volume, plasma volume and red cell mass. Hoping it will result in access to volume expanding treatment.

    There are NHS hospitals which do this test but the only indication which would get you the test on the NHS is polycythaemia :( . Who here wouldn't kill for that instead?!
     
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  18. Binkie4

    Binkie4 Senior Member

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    Thank you for this info.

    Is it actually a Daxor test? I am very interested. Has there been a specific reason for you to have it done? I know we are down in blood vol. Am fighting all the way for saline before anaesthesia, and stress tests.

    What volume expanding treatments are there? So thrilled.
     
  19. Binkie4

    Binkie4 Senior Member

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    @bombsh3ll
    Just want to say thank you again for bringing this info back to this thread. Am awaiting surgery. Maybe after that. See above.
     
  20. bombsh3ll

    bombsh3ll Senior Member

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    The test I had involves the same process as Daxor - a small amount of your own blood is taken out, labelled with a tracer and injected back in, then further blood tests are taken at intervals to measure the tracer's concentration in your bloodstream.

    Daxor is a brand of automated machine that does the same thing which is only operating in the US, but the standard nuclear medicine test that I had generates the same information in the same way.

    Basically, the more concentrated the tracer in your blood, the lower your blood volume and vice versa. Say you have 100mls of orange cordial and you mix it in a small amount of water, your drink will be very strong, but if you add it to a large volume of water, your drink will be very dilute. The amount of tracer and concentration in your body after mixing are known, which enables calculation of the unknown quantity which is your blood volume.

    Results are given for your total blood volume and also plasma and red cell mass, which together make up the total.

    I had this test due to severe POTS and all the same symptoms of hypovolaemic shock - tachycardia, cold extremities, non psychological anxiety, pallor, slow capillary refill etc. Blood pressure is not a good indicator of shock as it can be normal or raised in stages 1-2 hypovolaemic shock due to compensatory sympathetic activation. I pee up to 6 litres a day and don't hold fluids. At night after drinking salt and water all day I am at my best, and worse in the morning after no fluids all night, which strongly implicates blood volume for me. I also believe Dr Bell was spot on with his research on blood volume.

    I will post my results when I get them.

    If I can prove volume depletion, this may help me access drugs that help with this such as fludrocortisone and desmopressin, on prescription with proper monitoring of electrolytes. I have seen a private cardiologist who is also potentially open to perscribing intermittent IV saline for me. If red cell mass is low, there is also erythropoeitin but this is expensive and requires injection. Also you do not want to increase red cells alone if your plasma is low as you will then end up with blood that is too thick and can clot.

    If I were to need surgery/anaesthetic, it would also be really helpful to be able to prove volume depletion in order to get extra fluids and reduce the risks of complications if the surgeon and anaesthetist wrongly assumed I had a normal circulating blood volume.
     
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