Very low folate levels but very high CK bloods

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ive been feeling unwell for some time, when I am asked to describe its hard to do so: I feel tired, zero energy, climbing stairs makes be ache and be breathless.

I went to the GP who ruled out a viral infection but sent me for a  range of bloods - WBC came back slightly increased but nothing major, however my folate came in at <1 and the range was 4.5 - 50 nmol/L (no wonder I have no energy!!!!) and my Creatine Kinase (CK) serum has come in at over 500 when the range is 22 - 200 U/L

my GP has started me on Folic acid and has asked me to go get more bloods done to retest for the CK and to also check FBC and CRP as standard again. he didn't seem too concerned but also couldn't give me much of an idea as to whats going on with the CK bloods

does anyone know or has anyone ever experienced very low B12 or Folate and an increased CK level?

thanks!

kate

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  • Posted

    My folate levels have been slowly going down. The lowest was 1.3. My GP has put me on a daily dose of folic acid. I have not had my CK tested but according to my online notes I was diagnosed with chronic kidney disease stage 3. No one actually told me though. I was told to get my bloods tested again to check everything was stabilising. Last year I became anemic while in hospital for a hip,op. A nurse said why are you anaemic, I did not even know I was. They gave me a blood transfusion. 

     

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  • Posted

    A raised CK level can be a symptom of various illnesses including some muscle disorders - and they might cause the symptoms you mention at the beginning, but it can also be raised in many other situations:

    Strenuous exercise

    Trauma/Procedures (EMG, injection, surgery)

    Toxins (alcohol, heroin, cocaine)

    Endocrine (hypothyroid, hyperthyroid, hyperparathyroid)

    Electrolyte derangements (hyponatremia, hypokalemia, hypophosphatemia)

    Renal failure

    Viral illness 

    Chronic cardiac disease

    Malignancy

    Obstructive sleep apnea

    Neuroacanthocytosis syndromes

    Macro-CK

    Malignant hyperthermia syndromes

    Obviously your GP is checking the CK is correct or was not just raised for a short time before accepting it - a perfectly reasonable thing to do - and then he will decide who you should be referred to for further investigations if it is still raised. It can also be raised due to some medications. Did he tell you to avoid strenuous exercise before the second blood test? Even that can raise the level! Low B12 itself may be a cause of problems that lead to a raised CK and correcting the B12 level is enough to deal with it all.

    So as you see - it is impossible to say what it might be and there are non-serious causes too. But when they do find a cause - do let us know. All the best

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    • Posted

      Thank you Eileen I will keep the thread updated

      I was advised to not exercise prior to the blood test, not that I do! The only exercise I do these days due to having no energy is walking the dog twice a day! 

      I ended up being seen out of hours yesterday at the hospital due to a funny turn and had my bloods done and the CK was 1063, so even higher still so something isn’t right. 

      I’ll have the doctors one done in a week and see him again and go from there x

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    • Posted

      I'd call the doctor and tell him what the OOH result was - seems pointless waiting when their level had gone up even further, What did they say?

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