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Hi Scout,

Thanks for your reply, and sorry for not providing more background—I was trying to keep it (relatively) short. Some background, then:

A year ago, when my left foot started buzzing, I was constantly dizzy, I became nearsighted in my right eye, and a whole lot of other things happened, my B-12 level was at 367 pg/ml. I had to beg 3 different doctors to test my levels (one actually told me they were normal, and then it turned out she hadn’t even checked them), so by the time it was checked, I was already on sublinguals. Since the neurologist—the same one who lied about checking my B12—decided 367 wasn’t low, I checked my uMMA independently, and it came back at 3.7 μg MM/mg creatinine (3.8 is the actual cut-off, but the lab assured me there was no reason a non-vegetarian should have such high levels, except for a B12 deficiency). I later remembered that while I was traveling in Australia in 2001, a doctor checked my B12 after a bout of dizziness and fatigue, and it was in the same range back then.

I live in NY, but due to life circumstances, I had to spend some time in Israel a few months after this whole B12 thing started. Though the doctors in the US wouldn’t diagnose me with a deficiency and didn’t think I needed shots, my doctor in Israel gave me a loading dose of cyanocobalamin, though still not quite what the literature suggests (I got eight 1,000mcg shots over a period of four months--so on average, once in two weeks). In retrospect, I can say that the shots helped, but not in a “I got a shot and I feel better now” sort of way. In fact, and I’ve never heard other people say this, I feel quite awful for the 1-2 days after a cyanocobalamin shot—very very tired, achy, and such. It may be the preservatives. Or the cyanide...

In any event, with the diffuse pattern of symptoms that I have—the buzzing, twitches, spasms, tinnitus, IBS, RLS, weakness, extreme fuzziness, etc.—in the sense that I experience some of these every day, it’s hard to decide when you feel better. So while I may not have noticed a gradual improvement, I did notice a gradual return, when after those 8 loading shots—with B12 levels of 990 pg/ml and uMMA of 1.3—my doctor decided I could switch to sublinguals. After two months on SL 3,500mcg methylcobalamin, I felt my symptoms worsen (which is how I realized I was actually feeling better with the shots), and it turned out my B12 levels were dropping—they had dropped to 600pg/ml, despite the daily subliguals.

And then, last July, I returned to the US. Since then I’ve been struggling with doctors who don’t think I have a problem. So far, I’ve seen a neurologist—no sign of MS—several GPs, and a gastroenterologist. I had an upper GI endoscopy that showed gastritis, but the biopsies didn’t show anything the doctor thought was pernicious anemia. However, the GE is at least willing to listen to me—though he may, like the neurologist, suspect that I am crazy—and has given me 2 cyanocobalamin shots so far. This means I’ve gotten one about every two months. I’m also taking daily SL 5,000mcg methylcobalamin, though past experience has shown these don’t really keep my levels high.

My sense—from the way my body feels and from everything that I’ve read—is that I need to get my levels high enough (most say above 1,000pg/ml), and then keep them there, for actual improvement to come about. All I’ve been doing in the meantime is bring them up a bit and down a bit, and I still feel awful. The good news is that the GE’s willing to prescribe me methylcobalamin shots, but like I said in my previous post, he doesn’t know much about it. It’s a bit scary to decide how much to prescribe yourself, which is why I posted my question.

Anyway, I’m not sure whether this made it clearer, or more complicated. Thanks for those who take the time to read this long story, and I’m grateful for any advice you might have.

hi Steph...I just want to chime in here if I may....I was DX with a hidden B12 deficiency in March 2000...back them my B12 was 278(normal 200-1100) and an MMA of 415(normal 90-279) I had cyanocabalamin injections(1,000 mcg) once a month...I had the radioactive schilling test and that came out showing I do absorb I have intrinsic factor.After over a year of shots my hematologist said I should have at least 3-4 shots a year or I'd get deficient again.I went 5 years without shots(never feeling good that whole time,but didn't have insurance).Then all my symptoms came back(Worse than before!)so it was Hell trying to get my new drs. to give me B12 shots B12 got down to 222 and finally a university neurologist DX my B12 deficiency again!

I started getting shots again in Feb.'07 and my Ferritin was at 11...I just had my B12 checked last month and it was 420 and my Ferritin was I definitely think low B12 can mean low Ferritin also.I have just started to feel I know it takes a long time to get your health back once you've gotten so deficient.Even though your B12 numbers might "seem" to be getting better it takes quite a while to repair all the neurological damage.Also my old hematologist(she retired so that is why I had a rough time of getting any new drs. to understand my case)said that it takes 3-5 years to become deficient again...and she was so right,because after 5 yrs. of no shots I became plagued with every symptom Again!

hi Talshi!

Thank you for sharing your B12 story...I know it's really frustrating to go through all the problems with the drs. not being educated about how to treat a B12 deficiency.At least you found a dr. who is willing to help you...that is so good to hear!My dr. uses cyanocabalamin injections and I feel the same way you do about them...I feel extremely tired for a few days,but then after that I feel okay...but not great!I feel a lot stronger physically now,but it took a long time....the only symptoms that went away fast were the pins'n needles in my hands/feet and the heart palpitations.

What I was thinking was the people who have pernicious anemia only get one shot per month of 1,000 mcg so I feel like I'm okay with getting the same amount.I know intramuscular B12 injections is the only way to really get the best benefits of healing the damage that ws caused,but I agree with you on wondering if the cyanide that converts the B12 is what's makes you feel sick after the shot...I'd rather have methylcobalamin,but most drs. don't use that kind.I think the best thing would be to replace the same dose of cyanocabalamin(1,000 mcg) with the same dose of methylcobalamin and see how that works for you.

I'll try researching it and maybe I can ask my dr. if the dosage of methylcobalamin is equivalent to cyanocabalamin......but as far as how much you need I think a hematologist would know best about that so I see why your GE dr. is unsure how much to give you,but it'd be great if they did a recheck of your MMA.homocysteine,folic acid,B12 and ferritin levels so that youcould have a base line to start with.

Please post back....take care`Scout

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