September 9, 2013 at 2:20 pm #570Ashton7987Participant
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 #4316Dr. DianaKeymaster
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 #4330Lab-Scientist-LadyParticipant
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.
ShondaSeptember 19, 2013 at 5:09 pm #4373charlie1Participant
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 #4375Lab-Scientist-LadyParticipant
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.
ShondaSeptember 19, 2013 at 7:26 pm #4379charlie1Participant
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 #4910amyhospParticipant
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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