Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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LOW creatine kinase?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by JaimeS, May 27, 2015.

  1. JaimeS

    JaimeS Senior Member

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    Hey, everyone!

    So I've heard that high creatine kinase is present where there's muscle breakdown, and several references list high creatine kinase as a marker for ME. But my creatine kinase is a little low. It's at that lab-limbo where some reference ranges consider it clinically low and others don't (mine is 31 U/L).

    It turns out that low creatine kinase appears to be associated with:

    Orthostatic intolerance


    SLE (in this article, 'low' is defined as less than 33 U/L).

    Muscle weakness in RA

    Breast Cancer

    I haven't seen mention of lower creatine kinase in patients with ME or CFS, and perhaps I just haven't been looking hard enough - I would love some links, if anyone knows about low creatine being discussed elsewhere. Since creatine kinase catalyzes the reaction of ADP --> ATP, low values may help explain why some CFS or ME patients are so fatigued. If you want to find out more about creatine kinase, look at the abstract of this article: "The creatine kinase system and pleiotropic effects of creatine", by Wallimann et al, 2011.

    I did find an older article that looked at 10 ME patients and found that their creatine kinase levels "were not elevated", but when I looked at the text of the article, there was no lower value for CK at that time, and most of the ME patients examined had creatine kinase in the mid-thirties or lower, over half clinically low.

    The high vs low debate may end up being another difference between the acute stage vs the exhaustion stage, as discussed by Hornig et al.

    I have data from less than a year ago that shows my creatine kinase to be quite normal (in the 60s). I wish I had it taken six months before that, because if my hypothesis is correct, it would have been higher than normal at that time. Sadly, there's no way to tell.

    Does anyone have additional data? Anyone know whether their creatine kinase is high, or low, or was high/normal and is now low?

    [Edited for clarity!]
    -J
     
    Last edited: May 27, 2015
  2. cman89

    cman89 Senior Member

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    What would the implications be of supplementing with the commonly available Creatine Monohydrate then?
     
  3. JaimeS

    JaimeS Senior Member

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    @cman89 - I read a study that shows that while supplementation increases creatine levels in the blood, somehow it does not abate symptoms in everyone. From the RA article:

    Ridiculously tiny study, though. I'd say it's worth a go to try it out. I know some people take creatine supplements already. I wonder what they would say about its effects on their energy levels and muscle weakness?

    -J
     
  4. Hutan

    Hutan Senior Member

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    Interesting Jaime.
    I only have one measurement of CK, 9 months in to the illness, 64 U/L. So nothing remarkable. I see that I have noted in my spreadsheet of lab results 'RETEST - A good one to monitor - indicates inflammation of muscles'.

    Perhaps newly diagnosed people could make sure CK is included in their tests, monitor how it changes over time and report back?

    I wonder how variable CK is with activity levels? Could it be affected by physical exertion just prior to the test?
     
  5. JaimeS

    JaimeS Senior Member

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    It does vary with activity levels, @Hutan , and it rises if you've exerted yourself significantly that day. :)

    I would love to hear from others who have multiple measurements, to see if they correlate to disease progression.

    -J
     
  6. halcyon

    halcyon Senior Member

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    I had a creatine kinase MB test done when I first was ill which was normal. I had a total creatine kinase test 7 months later that was also normal, 78 U/L.
     
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  7. Valentijn

    Valentijn Senior Member

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    A low dose of creatine made my entire body swell. Which is a bit ridiculous, considering it's naturally in many foods I eat.
     
  8. pogoman

    pogoman Senior Member

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    @JaimeS
    The Creatine Kinase lab test is from what I've learned is for checking for muscle damage and not for creatine/ATP function.
    Offhand it can also be tested more to see what type of CK is elevated, one type is for skeletal muscles and one for the heart and I forget the third, maybe the brain.
    If you are not very physically active a low CK is normal.
    If there were other medical issues like you listed that lowered your CK, there are other tests and symptoms that would show if they are present.

    One of them are the various inflammation lab tests.
    An example would be RA, high CK and high inflammation markers.
    I've had a bunch of CK tests since my pain and fatigue got bad around 2012, my GP finally tested my CK and it was higher than normal.
    Not thousands times higher like found in serious autoimmune diseases but high enough to be referred to a neurologist.
    After a EMG and muscle biopsy, he said I have a noninflammatory myopathy.
    The biopsy showed muscle damage but not of a known type, the UCLA medical lab did the analyzing of the biopsy and they are pretty thorough.

    All my inflammation labs show none, whatever I have its not the usual like RA, lupus or fibro.
    I've enclosed a graph of my CK tests, the bottom spike was when I did absolutely nothing for a few days before doing the labs and it showed a drop.

    I have a very active job where I am on my feet all day walking and lifting sometimes heavy objects but even so I was surprised the April 2015 tests were still high.
    Around late 2014 I started on the mito and methylation supplements that got me off the prescription pain meds.


    [​IMG][​IMG][/IMG]
     
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  9. JaimeS

    JaimeS Senior Member

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    Thanks, @halcyon ! Okay, I guess the question is "why is mine low"?

    @Valentijn - okay, I wasn't going to mention this, but I did try it once, and had a terrible OI day. I wasn't entirely sure they were related, but perhaps it causes issues with fluid balance in some way. This is a very tentative statement, guys, I'd need a lot more research before I bought into it. :)

    -J
     
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  10. JaimeS

    JaimeS Senior Member

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    Absolutely - this is what it is meant to check. However, since creatine kinase catalyzes the reaction that shifts ADP to ATP, if it were low I would presume the reaction slows down. I often feel I'm limited because of my chemical rather than biological viewpoint, because the biological answer might be "no; there are plenty of things that can catalyze that reaction, and they're more than enough to do the job on their own, without creatine kinase." Somehow I doubt it, though.

    upload_2015-5-28_12-23-32.png
    This is from Baird et al, 2012, here: http://www.hindawi.com/journals/jnme/2012/960363/

    The same article also states,

    Yes! :) My doc said she was just going to check for the muscular kind, but randomly they told me there was no brain-CK, and no cardiac-CK. So my brain and heart aren't leaking? Well, I presume this to be a good thing? ;)

    I've heard this too, pogoman, but I'm not really sure what it means as it relates to my real life. I found a textbook source that states that "healthy" people have CK values that are at least sixty units per liter, so perhaps less active people might have CK values in the 60s and there would be nothing untoward about that.

    I'm honestly not as inactive as a lot of desk jockeys out there, because I enjoy movement, and many of my hobbies (the ones that don't involve writing and research) are involved in making/creating/producing things, which is a gently active thing to do. I don't think my CK should be in the thirties based on inactivity alone.

    So RA is associated with both low CK and high CK? I'm not being mocking or incredulous. I could easily see it being abnormally high during a flare-up and abnormally low at other times. Or some of the research being wrong. Or some people being misdiagnosed.

    Wow, pogoman. That looks like nearly a 50% drop when you were less active! The same source as I stole the pic from also has images of changes in CK after exercise, comparing sedentary to active controls (I am quite glad I found this resource...)

    upload_2015-5-28_12-40-38.png
    (once again, Baird, 2012).​

    But before activity, they look to be nearly the same. And again, I haven't been 'immobilized'. I still walk every day except my worst. I wonder how much I really do move, though, compared to others?

    I love the way that I post a tiny snippet here and we yank it apart at the seams and examine it from every angle. You guys are the best. <3

    -J
     

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  11. pogoman

    pogoman Senior Member

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    I was going from memory on the various inflammatory myopathies I was checked for, you are right RA usually is low CK.
    With the different myositis diseases there is usually raised CK, when I saw the rheumy doctor she tested for a bunch of nflammatory diseases and I was all negative.

    Back when this all started for me and I was doing research on various muscle building supplements, thinking I had a muscle recovery issues.
    There was not much correlation between CK levels and taking creatine that I recall.
    I have taken creatine off and on, it helped a little bit but was always temporary, it also caused weight gain from water retention which is a known side effect.
    When you take creatine they recommend drinking alot of water.
     
  12. JaimeS

    JaimeS Senior Member

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    Certainly some of the studies said it did so, but a significant number say it doesn't. I skimmed past many studies that implied that supplementation didn't help with symptoms, where there was pre-existing muscular dysfunction (MS, etc). I wonder if you could take the enzyme itself, rather than creatine.... HELLO, INTERWEBS.... Yes. Yes, you can. I would have to think about that awhile before I considered taking it, though. I'm still.... waiting.... for KDM's initial report. It seems silly to alter anything right now, unless I get sicker.

    Ah, hey, guys:
    Is '32' listed as the lowest healthy value even though it's the median for white women? Is this yet another instance of how the 'typical' patient upon which all lab values are based is a white male? Because their CK is usually naturally higher.

    That's stupid. That got me concerned over nothing! :(

    So, the thing to take away from this is that I shouldn't worry about it, Y/Y? ;)

    @Valentijn 's side effect of 'blowing up' is a documented one? I wonder why? Aldosterone fx?

    -J
     
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  13. JaimeS

    JaimeS Senior Member

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    Thanks for making me do the research, guys. It's always easier when you're debating things back and forth rather than, "eh... I'll look it up later..."

    -J
     
  14. pogoman

    pogoman Senior Member

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    I didn't really research scientific sites like pubmed about creatine, more the weight lifting and mens health forums.
    when CK was mentioned it was in context of higher levels along with heavy workouts.

    I think in the context of disease, low CK like you have is a good thing especially as you are active.
    during a couple months earlier this year, I used creatine daily and it didnt do much as far as improving strength and I gained weight which I did not want.
    and as you can see in my labs, it didn't improve CK either lol

    and bloating/weight gain on creatine is a well known side effect, they also make a nonbloating version altho supposedly not as effective.

    http://www.livestrong.com/article/543854-the-average-weight-gain-with-creatine/
     
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  15. TrixieStix

    TrixieStix Senior Member

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    my Creatine and Creatine Kinase are both below normal range, and have been since I became ill.

    In addition to the things you listed, low Creatine Kinase can also be seen in people with connective tissue diseases, and in kidney disease.

    http://jamanetwork.com/journals/jama/article-abstract/363490
     
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  16. @JaimeS - I wanted to see if you ever discovered any more about low CK level? Is there something we should be taking for this that may help with energy? I just got mine tested and it's low - 29 to be exact. I've had ME for 14 yrs, this was the first time it was tested.....
     

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