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Has anybody here also got haemochromatosis and got their blood volume measured?

Discussion in 'General ME/CFS Discussion' started by Ravn, Nov 2, 2017.

  1. Ravn

    Ravn

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    A lot of people with ME and/or POTS are thought to have low blood volume and that this low blood volume can cause a variety of symptoms.

    Now, if you also have haemochromatosis and therefore have to be treated by blood letting, then this loss of blood logically should lead to really, really low blood volume - and an aggravation of symptoms.

    In this case, should there be a treatment protocol that says ME and POTS patients should, for example, give smaller quantities of blood more often?

    My own experience following a venesection (I have the full suite of OI symptoms but have never had my blood volume measued, so don't know how much of a factor it is for me) used to be half a day of mildly increased dizziness followed by a day or two of extra energy, then back to base line. That was before my ME turned severe (housebound, not quite bedbound). Now the venesection just knocks the living daylights out of me immediately, not just OI but full-blown PEM, but I don't know how much of this is simply due to having to travel for the treatment and how much is due to the treatment itself.

    Your experiences?
     
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  2. Learner1

    Learner1 Professional Patient

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    I schedule phlebotomies immediately before a nutrient IV at my naturopathic doctor's. A saline IV to replenish lost volume would help, too. And drinking a lot, with some salt?
     
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  3. drob31

    drob31 Senior Member

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    I have a half mutation for it, but I don't have high iron and ferritin is high normal.
     
  4. mariovitali

    mariovitali Senior Member

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    What about your albumin level?
     
  5. Learner1

    Learner1 Professional Patient

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    Hi @mariovitali not sure what that has to do with hemochromatosis...??

    An iron study (TIBC, UIBC, serum iron, iron sat) and serum ferritin are the numbers typically watched.
     
  6. mariovitali

    mariovitali Senior Member

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    Oh right i should have made it more clear. Albumin is important for blood volume which was mentioned here :

     
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  7. Learner1

    Learner1 Professional Patient

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  8. alex3619

    alex3619 Senior Member

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    This question has concerned me in the past as I have one gene for haemochromatosis and my ferritin went super high. It had my docs in a panic. However my iron was borderline anaemic. The ferritin was an inflammatory marker, not an iron marker in this case.

    I am aware of one patient, who I do not have contact with, who had phlebotomy. He collapsed for six months, and his doctors were unable to help.

    There is a procedure to simultaneously give saline IV and remove blood, balancing blood volume. Its also possible to preload on water, or replace it after, or both. One of the big issues with low blood volume, however, is low circulating blood cell numbers. Docs usually look at concentration, which is misleading if volume is low. My CFS doc was going to send me for phlebotomy with only half the amount withdrawn to see how I responded. That was before I realised I did not have an iron issue, I had an inflammation issue.
     
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  9. Ravn

    Ravn

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    Not sure I understand this. Does this mean the iron panel results may be wrong? And if so, are the true figures likely to be higher or lower?

    @mariovitali Not aware of having had any tests for albumin. What sort of test is that, a basic blood test?
     
  10. Forbin

    Forbin Senior Member

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    One of the first things my doctor was suspicious of when I got ill (30+ years ago) was haemochromatosis. It was a long shot, but he knew my ancestry was Scandinavian, and he probably was familiar with haemochromatosis because the local area had a relatively large Scandinavian population. [The mutation may go back several thousand years, but it seems like it might have been spread by Viking "tourism" about 1000 years ago. https://www.theatlantic.com/health/...-in-our-blood-that-keeps-and-kills-us/266936/ ]

    I'm pretty sure all my doctor did was to test for iron, which was normal. It's just interesting, though, that a doctor in the early 1980's would suspect haemochromatosis based on my symptoms and ancestry.
     
  11. alex3619

    alex3619 Senior Member

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    This is separate to the iron panel, though total iron is probably lower, but its concentration that is important here.

    The issue here is how many red blood cells you have. Most tests look at concentration, or numbers per volume. If you have less volume your real numbers are lower. So if you lose blood you might become anaemic although standard blood tests will not show it.
     
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  12. Ravn

    Ravn

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    That's not just interesting, that's impressive! A doctor well ahead of their time - if only we had many, many more of those in the ME field...
    PS: Scandinavian and Baltic ancestry here, those vikings have a lot to answer for ;)
     
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