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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.

Talshi
Back in 1996 my B12 level was 69 and i was started on cynocobalamin 3mil twice a week, it took me three years to get my level up to 500 and then from there on I inject myself(or hubby does for me) 2mil every other week now for 9yrs. Methylcobalamin(sp) didn't work for me so I take the other cobalamin along with B12 sublingual tabs. I lack the intrinsic factor in the stomach that aids in the absorption of B12. I had that low of a level for a long time and have lasting medical problems stemming from it! I get a b12 level check every three months because my level drops drastically even with shots, sometimes I have a shot every week for 6 weeks then get checked and try to keep it up there. I've never had a level above 1000. I see a neurologist and hematologist for this. It's a tricky disease and Ive had all those symptoms and still a few of them linger! I had permanent damage but it's tolerable. Good luck and see a hematologist or neurologist and get treatment, my grandmother died from pernicious anemia back in 1950 and thank God we have the shots now.
So what was the level? Did she check to find out WHY you are low? you may be low just because you're not eating foods high in B12 so getting shots for a while or taking sublingual will help bring it back up! If you are low because you have a gastric problem like NO intrinsic Factor than eating all the foods high in B12 won't do you any good. So is she going to check the level again after three months to see if has improved? It's important to know WHY it is low and do follow up. You could suggest the Schilling test for intrinsic factor, a special type of blood test to determine why it is low. My story is on this board so don't let the Dr just say take B12 and go on living because if you have no intrinsic factor in your gut to absorb B12 then your level will continue to go down and nerve damage can occur and can be permanent like mine all because a Dr didn't think it was all that low nor find out why it was. Mine was 69 at the time I was sent to see a neurologist where he picked it up right away, she didn't give a hoot or read the radiologist reports stating I was in trouble. Another thing, getting the shots will bring the level back up, BUT it will fall again if you lack the intrinsic factor so finding out if you lack the intrinsic factor is important because those B12 shots will be forever needed. I haven't found a non constipating iron pill yet, let's hope someone else on this board has.





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