Anyone else have low b12 / b12 deficiency?

In My Humble Opinion
1

Since November 2007, I’ve been experiencing weird symptoms that sent me to the ER a couple of times: elevated BP, racing heart, panic attacks (I was certain I was having a heart attack and felt doomed, unable to breathe), tremors, insomnia, and so on. The ER docs checked my heart out via ECG, sonogram, and a CAT scan (to rule out a clot) and said it was fine and I was probably just having a panic attack; meanwhile, my GP just gave me beta blockers to lower my BP/heartrate and calm me down. A second ER visit with the same tachycardia/shortness of breath/facial numbness resulted in no new ideas, except that the ER doc suggested maybe I should see aneurologist just in case the numbness might be Bell’s Palsy or MS.

The Neurologist asked me some questions, did a quick neuro exam, and said, “you know, you’re pretty young for an MS or Parkinson’s diagnosis. Before we freak out about that, did anyone ever check you for b12 deficiency?” Turns out nope, they didn’t, though I did have a CBC at the ER, and two separate blood tests from my GP. So Neuro Doc did a test, and … yep, turns out my b12 level was 150 – ridiculously low.

Until doing the research I had no idea that low b12 could cause such symptoms. It explains soooo much about what I’ve been feeling since November: the apprehension/panic attacks, the racing heart, the weird tremor/buzzing sensation I have in my extremeties and face, the sore mouth, tinnitus, restless legs… it’s astonishing and scary.

The ER doctors didn’t bother checking because they (understandably) had to rule out the worst things first. My crappy GP did a blood test but apparently didn’t check my b12 levels. From all I’ve read, it’s not unusual for docs to misdiagnose this. The symptoms of untreated b12 deficiency are almost identical to Alzheimer’s/dementia/Parkinson’s, and I’ve read a lot that indicates some doctors misdiagnose these illnesses when it’s actually low b12 that’s the cause. There’s a correlation between hospitalized mentally ill people and low b12, too. (BTW, normal levels should be in the 500 - thousands range. “Low” levels are usually below 200. Actually, the US is behind the curve in this area; in Japan, people will get pegged as b12 deficient if their levels drop below 500 and are treated much more quickly.)

ANYway, so now I’m on super high dosage of b12 pills (plus I got one injection) and I’m hoping my nerve damage isn’t permanent. It’s been two months now and I’m not feeling any better yet, but considering how long I’ve probably been low (at least eight months, probably several years if my tinnitus and restless legs are actually related to this) it could take several months or years to improve – if at all. Well, even if I caught this too late to repair this inredibly annoying “buzzing/tingling/numb” feeling – it’s like my body’s vibrating like a tuning fork, and not in a good way – at least I won’t get worse.

My question: any dopers or your relatives have this issue? It’s more common than people realize, especially for vegans/vegetarians (since b12 comes from animal products) but also for those who might have a lowered ability to absorb/store b12. If you do have experience with this, especially if you actually had physical symptoms due to the deficiency, did you get better after treatment? How long did it take? What was your regimen?

2

For more than thirty years, I’ve had to inject myself with B12 every six weeks. The portion of my small bowel that absorbs B12 was removed (along with my colon), and taking B12 by mouth does me no good. I’ve never developed a deficiency because the injections keep me going nicely.

3

They removed my stomach in 05 and since then I have been deficient in several things, including b12. I now take extra and get shots and take a fistful of supplements that would choke a horse.

Mostly my symptoms are being overly tired all the damn time.

4

Huh. I have a friend who’s been having nearly identical symptoms, but her doctor hasn’t been able to find anything wrong. I’m going to tell her about this and see if they’ve checked this. Pretty much all they’ve done so far is give her sleeping pills that make her feel really crappy.

5

I’m curious if they have any idea why you are b12 deficient? In the others that posted it seems to be related to missing portions of their GI tract.

6

Hey thanks for the answers, guys. I do know that a lot of gastric bypass patients have b12 issues too, as well as people who take a lot of anti-acid pills (because it apparently affects the lining of the stomach, where the b12 absorption happens).

Wile E, my doc isn’t sure. He tested me for ‘instrinsic factor’, which basically aids absorption and can be lacking in low b12 folks (resulting in pernicious anemia). But I checked out okay. He thinks it’s just a lousy unbalanced diet, which … yeah. I could see it. Some time ago I was a real mess for several years and put myself in a pretty malnourished state. It could well be that I caused a deficiet then and am still feeling the affects now. B12 is stored for years but when it goes, the affects can be felt for years.

C3 - oh do tell your friend about this! It’s more common than many people realize. And if I may, please recommend that she gets more than just a “serum” level checked – she should also get a test called MMA, which is more accurate. (Elevated levels of methylmalonic acid – MMA – are what one looks for in diagnosing b12.) Some doctors poo-poo b12 levels if they’re not below 200, but in many cases levels lower than 500 can result in the above neurological symptoms. As I said, in Japan and some European countries, the “alarm bell” gets sounded if patients have b12 levels lower than 500, whereas here in the US we’re content with below 200. Which is crazy, especially since b12 treatment is inexpensive and easy to obtain. Plus you can’t overdose on it, so adding the supplements when someone is on the low side isn’t hurting anything. (If your b12 is normal, there’s no benefit in megadosing. No harm either.)

An excellent and not too difficult-to-read article is here, at the American Family Physician site. Or here’s a more user-friendly fact sheet about b12.

7

I was diagnosed a while ago, but was able to bring it back up with sublingual supplements. I had the tremors and tingling in extremities, too, but it has improved a lot.

One possible cause that is often overlooked is long term use of Prilosec and similar drugs, which may be what caused it in my case.

8

I had weight loss surgery (biliopancreatic diversion with duodenal switch) a little more than two years ago. Ever since, I have monthly B-12 injections.

If we go a little longer than normal between injections, for whatever reason, I start to feel abnormally tired/yucky. Then we do the B-12 and I feel better.

9

Wow. I had a gastric bypass four years ago, and was warned to take my b12 and get tested regularly, but they never really said what could happen if I didn’t. I take my little pill everyday and have never had a low test score. It’s good to know what COULD happen if I get lazy…good inspiration to NOT forget.

10

choie, thanks for posting all this. I did let my friend know what you’ve written, including the two different types of tests. She is definitely going to ask her doctor about this because she said the symptoms match what she has going on. She’s been feeling horrible for months.

11

Great, C3, I hope this does turn out to help. Standard caveat – I’m not a doctor. I’ve just done tons of reading on this subject over the past few months. But I should mention that I’ve seen lots of recommendations that if you’re gonna get the tests soon (e.g. within a couple of weeks), one should wait on taking b12 – it could skew the tests and give the docs an inaccurate impression of one’s b12 storage. They’ll see your serum is, like, 600, and then might not bother taking the follow-up MMA test. And for all they know you might’ve been in the low 200s or something before you started taking the megadoses of b12.

OTOH, if it looks like there’s gonna be a wait of a month or so, then I’d say screw it, she should start taking b12 now*. As I said, it can’t hurt if she’s got normal b12 levels, but on the off-chance she is low – low enough to cause the symptoms above – the sooner the better. Some literature suggests that there’s a six month window of opportunity before the nerve damage could become permanent. Fortunately b12 is not one of those vitamins that can be dangerous at high doses, so there’s no harm in giving it a try. Again, though, if she thinks she might be able to have the test soon, I do think she can wait so as to avoid a ‘false positive’ reading.

Wow if someone actually can be helped by this post I will be thrilled.

  • If she does go for supplements, let her know there are different types of b12; there’s the most common OTC version, which is Cyanocobalimin, and then there’s Methalcobalamin, which is harder to find in drug stores but easily available on the Web or in health food/vitamin specialty stores. The Methyl is usually preferred, because unlike Cyano, it is a more ‘direct’ version that doesn’t requrie extra ‘conversion’ by your digestive system – Cyano has to be converted by your system to Methyl before it does its job. Also, she should look for sublinguals (which one should let dissolve slowly under your tongue) rather than regular oral capsules.

The shots are even better. But … well, they’re shots, and lots of people have issues with that! Plus doctors sometimes only give you shots once a month, and someone who’s very low on b12 should really have daily doses.

12

I’ve known someone with a deficiency misdiagnosed with Alzheimer’s, too. It’s my understanding as well that B-12 requires calcium for absorption even when injected.

13

I was diagnosed about 6 months ago with a B12 deficiency, but I haven’t had stomach surgery or taken Prilosec or anything. I’m only 19 and my 15-year-old sister was diagnosed with it at the same time, and it’s genetic but they don’t know where it came from (never shown up in family before). We get shots once a month (my sister at one time had them every day, then every week, because her levels were lower - she also got tested for Crohn’s disease and other things in search of a cause).

ETA I had/have many of the OP’s symptoms, especially the panicky feelings. They were made worse when I started taking BCP with iron in them for an iron deficiency at the same time I started the shots. I’ve been pretty panicky on several fairly commonplace occasions, generally stressed/emotional and very tired, so I’m sure I’m fun to be with. :frowning:

14

A friend of mine experienced increasing paraesthesia over the course of a few months- started by constantly feeling numb in the toes, went to see a doctor when it just to being numb from the thighs on down. An elder neurologist finally pegged it as being acute B12 deficiency caused by an epic nitrous oxide binge a few months previous, and a single dose shot in the arm cleared it up almost immediately.

Doctor said he was lucky, since in her whole career she had only seen that twice before, both times in dentists, who had to give up the practice after sensation in their fingers never returned.