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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
Hi Steph,

My Ferritin was only checked once, with my initial 367pg/ml B12, and it was 42 (range: 10-154 ng/mL). My Iron, Total was 178 (range: 40-175 mcg/dL). I assumed these were normal--though my sense of "normal" has changed considerably since my symptoms have begun.

I actually share your insomnia, fogginess, twitches, shakiness; I also have palpitations and so many symptoms it's hard to remember/count.

I'm sorry to hear about your husband doubting you. I think this is a tricky disease for both sufferers and partners of sufferers, in that it is mostly invisible and yet so pervasive. Has he read up on it at all? It might be helpful to have him read some of the other people's stories and generally about the deficiency. Just a thought.

Hi Scout,

Thank you for your kind words and for your thoughts. It is encouraging to have found a doctor who is willing to help, but somewhat discouraging that he knows little of the condition/treatment options. It feels like I have to do all of the work, and it's a full-time job! Perhaps I should try a hematologist, like you suggest. I'm just not looking forward to another doctor treating me like I am crazy.

I did think about using the same dose for methylcobalamin, though the few mentions I did find seem to suggest--oddly--that much higher doses are used with methyl. It would be great if you could ask your doctor.

Yes, I probably should re-check my levels, though this always runs the risk of having a doctor tell you your levels are normal (well, yeah, I've been getting injections).

Anyway, hope I answered everything.

Thanks to you both, and take care.

Talshi
Well for me and I have no intrinsic factor it took a few years to build my level up to a normal range, now with someone who does have the intrinsic factor which does help with the absorption of B12 I would think a few months should do it. Do you know what your level was before you started on the shots? That would make a difference on how long it can take to build back up!





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