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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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B-12

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › B-12

  • This topic has 6 replies, 4 voices, and was last updated 8 years, 4 months ago by amyhosp.
Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • September 9, 2013 at 2:20 pm #570
    Ashton7987
    Participant

    Curious to know what our average B-12 level should be with EDS? Mine is around 283. Should I be getting B-12 injections or taking B-12 supplements?

    September 10, 2013 at 5:31 pm #4316
    Dr. Diana
    Keymaster

    Curious to know what our average B-12 level should be with EDS? Mine is around 283. Should I be getting B-12 injections or taking B-12 supplements?

    Hi Ashton, I hear from so many of us that we are deficient for many reasons. OUr family went on injections (and my son — needle-phobe — went on patches and the high-dose oral). Labs differ in what they consider “normal”. My friend “Wiki” says: Normal values are 200 – 900 pg/mL (picograms per milliliter). Did you google the symptoms of deficiency? I had them all! No more, though… If you are having symptoms, I would see if your doctor wouldn’t mind getting your level to “upper-normal” and see if that helps! BTW, pain doctors will often inject B12 right into the affected joint. Interesting, huh? 😉

    September 12, 2013 at 12:03 pm #4330
    Lab-Scientist-Lady
    Participant

    The B vitamins are water soluble so there is no harm in taking extra. I take a b-complex at a certain time and a sublingual one in the morning or at bedtime. Depends on how my day is going.
    Shonda

    September 19, 2013 at 5:09 pm #4373
    charlie1
    Participant

    I had blood work done at the onset of my POTS/DYSAUTONOMIA symptoms. The only abnormal results were Neutropenia, LO ferritin and VERY HI B12 (I was not on B12 supplements). The ferritin was corrected but the B12 continued to be HI until about 8 months ago. I don’t know why it was HI in the first place but it does seem unusual to have too much B12 instead of not enough. Also, I now have chronic mild Neutropenia.

    September 19, 2013 at 5:22 pm #4375
    Lab-Scientist-Lady
    Participant

    I think there can be a overlap and a reaction that can give a false elevated B12 level. I would continue with the supplements and not worry. Also, depending on the time of day a person can have a slightly high neutrophil count. It is normal. They are WBCs and are capable of moving through tissue and blood vessels. Activity levels, stress, etc… affects how many are in the circulatory system at any given time. For most people they tend to be higher in an afternoon draw than a morning draw.
    Shonda

    September 19, 2013 at 7:26 pm #4379
    charlie1
    Participant

    I forget what the exact number was but my B12 was off the charts! My doctor immediately told me to get off supplements but I informed him I wasn’t on any! I was told not to take any and he wanted to keep an eye on the level, especially because at the time I had such strange, undiagnosed symptoms that had me in the hospital more than once. My memory is shot now b/c of this illness but I think he was concerned about something to do with my liver??
    Oh well, I’ve got enough other things on my plate now!

    February 28, 2014 at 6:48 am #4910
    amyhosp
    Participant

    My Endo Dr says she likes B12 to be in the 400’s at least.
    Mine are much lower than that.

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