The B Vitamins

Nature\’s Miracle Nutrients

Vitamin B12 Deficiency Symptoms

Posted by bvitamins on March 29, 2008

It pays to know what the vitamin b12 deficiency symptoms are, because otherwise you might be in for an unpleasant surprise, health-wise.

It’s fascinating that a B12 deficiency can mimic so many incurable diseases, some of which include:

  • Multiple Sclerosis (MS)
  • Alzheimer’s
  • Parkinson’s Disease
  • Guillian-Barre Syndrome
  • Amyotrophic lateral sclerosis (ALS) (“Lou Gehrig’s disease”)

Now that isn’t to say that everyone who has one of these diseases is also B12 deficient; only that because B12 is critical for neural functions that its lack can make it look like one of these.

And since a B12 deficiency is curable and the above aren’t…wouldn’t you say that getting a test to screen for the deficiency is in order?

Other Signs and Symptoms

A lot of what B12 does in the body involves the nervous system, so be on the lookout for the following:

  • Forgetfulness and foggy thinking, confusion
  • Dementia, psychosis, depression, paranoia
  • Lack of coordination and balance; clumsiness
  • Tremors
  • Tingling in the extremities
  • Muscle weakness and/or pain
  • Chronic fatigue
  • Incontinence
  • Heart palpitations
  • Loss of vision
  • Loss of appetite
  • Gastrointestinal problems

Here’s the thing; if you have one or more of these symptoms, don’t just start downing B12 supplements. Go to your health-care provider and ask to have a urinary MMA test, which is highly specific for a B12 deficiency.

If your doctor says a serum B12 test is all you need — find another doctor (at least when it comes to vitamins). Serum B12 tests have been known to give false negatives and false positives, depending on what other medications you might be taking. And either way, a false result can mean the difference between health and possibly an early death.

Recommended Reading

I highly recommend the book, Could it Be B12?by Sally M. Pacholok and Jeffrey J. Stuart.

I have have some prescription medications in the past that gave me severe side effects; in the book, I noticed many of the same symptoms…then I discovered that my medications were known to interfere with B12.

Fortunately, I got off the medicatione before any long-term damage was done. But a B12 deficiency can masquerade as so many conditions, and if they are misdiagnosed, can have dire consequences.

So, click to check out Could it Be B12?and get more information. I am so very glad that I bought this book!

113 Responses to “Vitamin B12 Deficiency Symptoms”

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  2. Evie said

    I liked your article. Short and to the point. I know my problems and most likely my children is a vitamin B-12 deficienty. I was diagnois with it years ago, but had no idea that a lot of the problems I had was related to it.
    I am turning 64 and hope I haven’t messed up myself for overlooking what I thought was a mild problem to now being a more severe one.
    Thanks for the article. Evie

    If I don’t have an enzine for B-12 can my body absorb B-12 suppliments?

  3. Gail said

    Evie, there’s no time like the present to start taking the B12 supplements. Your body can absorb the supplements as long as they are either sub-lingual or shots. B12 that you take in a pill form that you swallow (like in a standard vitamin pill) won’t do you any good, though.

    If you can’t find a doctor who will give you the shots (for some reason, quite a few doctors won’t), please take the sub-lingual. The shots are more effective as a fast loading dose, but sub-lingual B12 will also work (just a few days slower).

  4. Thank you for the B12 information you’ve listed. I am in the medical field and have always been told sub lingual or injectable are more effective. My husband is a desert storm vet and has had on going joint acheness, arm tingling and numbness. Due to not caring much for the VA and there “fast food” approach to everything he would not be checked, until now (after being diag and treated for MALTs NHL.). He went to the VA and the doctor states his B12 is extremely low, he has tennis elbow and arthritis all he needs is a supplement “he can get at any pharmacy”. I just don’t by it, sx’s started after taking nerve agent pills and the anthrax injections back in 1991, it would take this long for B12 to show up low and cause all these other problems?) I am waiting on a call back and I am going to ask if he (the physician) is going on a lab draw result or urine. and be sure if it is just labs I will be requesting he do the MMA test. The government whatever they can cover with something else they will, so they do not have to liable for anything that goes wrong.
    Anyhow, thank you again for your informative information, it is greatly appreciated. Brenda

  5. Gail said

    Brenda, I’m sorry to hear that your husband is experiencing all those problems. Please give my best wishes and thanks to him, for serving our country!

    Meanwhile, you’re right — most medical providers/clinics tend to say something along the same lines — pick up a supplement at the pharmacy or drugstore. That’s all fine and dandy if the pharmacy and/or drugstore carry sub-lingual and you know to ask for it! But it doesn’t help anyone who doesn’t realize it.

    But let’s face it — most medical providers (although not all of them) focus on getting as many people in and out of the examining room, and don’t treat holistically. And I doubt most medical schools delve a great deal into natural supplements (like how B12 works in the body).

    I’m of the opinion that the body was made as it is for a certain reason, and that we should treat the body with natural solutions first; it’s the way we were designed. While I certainly recognize that prescription medicine is necessary (even best) at times, there are still things that are helped or cured by simple means.

  6. I can’t figure it out. My friend had a total gastrectomy, 5 weeks later he has depression, he’s weak, etc. Can you believe no B12 Shots were ordered for him????? What’s up with that. Then when I called the doctor to tell them he needs B12, he said, “I went to medical school.” Duh! I wanted to say, “then act like it.” You think the “MD” initials would mean you are in safe hands. Don’t count on it.

  7. Gail said

    Thanks for sharing that story, Vivian. And unfortunately, I can believe that no shots were ordered — I’ve heard stories along those lines far too often. And if ever there was a reason for B12 shots, it’s with a gastrectomy!

    While it’s true that the doctor did go to medical school, it’s pretty much impossible to remember everything you learn. Not to mention new discoveries made since then. What does this mean for us? We need to become informed consumers. There are things we can do for ourselves, like knowing the symptoms for the various vitamin deficiencies. In today’s world, we can’t expect the health care professionals to do it for us.

  8. Sandra said

    Ive been told by my doctor that I need to have a b12 shot every month.
    I started having them, then recently Ive been so busy that I hadn’t had it in over 8 weeks.
    Up until yesterday I was sleeping most of the day, until it was time for work in the evenings, I was extremely weak, I couldn’t stand without feeling faint and my vision was blurry, as well as my concentration level was to the point I could not think correctly, as well as my appetite decreased to the point that I feel to vomit when I thought about food.
    I went to the doctor thinking something was really wrong, they gave me my b12 shot.
    It is the next day and I am a changed person, I have energy, I cant eat and I am not sleeping long hours.
    So my question is, was this because I hadn’t had the b12 shot?

  9. gnettles said

    Sandra, I’m betting that your sleepines, blurry vision, etc. was the result of your B12 deficiency! I’m very glad that you did go in and get that shot, and I’m especially glad that your doctor recognized the symptoms for what they were! Too many doctors diagnose something else, rather than give a simple B12 shot.

    So, keep on with your shots for a bit, and if it gets too hectic for you to go in for regular shots, at least take the sublingual B12 tablets — they will help you as well. Just make sure to take them regularly.

    Once again, I’m so glad that you got that injection of B12!

  10. Aaron said

    I have been having recurring issues over the last 9 months.

    I have been having palpatations and now recently it feels like my heart skips a beat every so often throughout the day.

    Both my feet feel as though they are tingling and I do feel tired a lot.

    My doc thinks it is just anxiety and I have had all the cardiac tests done but I dont feel like anxiety is the issue.

    Any suggestions?

  11. Gail said

    Aaron, you did right by having the tests to make sure it wasn’t your heart. Now that the doctor has confirmed that all is well in that regard, here are some thoughts.

    Naturally, the first thing is to get some sublingual B12 tablets, at least 1,000 milligrams. They aren’t expensive (about $10-12, depending on where you live). Take one every day, dissolving it under your tongue. Some people feel a difference in a day or two, for others it might take a week or two.

    If after 2 weeks you feel no difference whatsoever, you may want to have blood tests for diabetes (assuming you haven’t already).

    Finally, if the B12 doesn’t seem to make a difference and your blood sugar is in the normal range, it may be a time to pursue the anxiety angle.

    Best wishes to you!

  12. TERESA said

    I HAVE HAD A LOT OF STOMACH PROBLEMS, I HAVE EVEN HAD ISCHEMIC COLITIS. I HAVE HAD A FOLIC ACID DEF. I AM A DIABETIC,I HAVE HYPOTHYROIDISM AND I AM ON MEDICATION. WHEN I WAKE UP IN THE MORNING, I FEEL LIKE I HAVE NEVER BEEN TO SLEEP, I HAVE LEG PAIN CONSTANTLY, I CAN’T REMEMBER THINGS FROM ONE SECOND TO THE NEXT.I WENT TO A ENDOCRINOLOGIST AND SHE RAN SOME TESTS. SHE DIDN’T RUN A TEST ON MY VIT B OR B12 OR FOLIC ACID. EVERYTHING CAME BACK NORMAL EXCEPT MY HDL LEVELS WHICH WERE HIGH. WHAT DO YOU THINK MY NEXT MOVE SHOULD BE?

    TERESA IN NC

  13. Gail said

    Teresa, my heart goes out to you! You obviously aren’t feeling well and able to live your life to its fullest.

    Now I’m not a doctor, so I can’t tell you what to do — but here is what I would suggest. You need two different tests run. One test should obviously be for your B12 levels. The fact that you are known to have a folic acid deficiency is a clue right there, that you may also be B12 deficient.

    But I also encourage you to have vitamin D levels done. Unless you spend 20 minutes a day in the sunshine without sunscreen, you are very likely deficient there as well. (Surprisingly, we don’t get a lot of vitamin D from food.) Your leg pain and lack of restful sleep are tip-offs to that.

    Teresa, if your current physician won’t order these tests, please find one who will — holistic physicians are out there. I’m guessing that your current physician is concentrating on your diabetes and overlooking some of the other possibilities.

    All my best to you!

  14. Robin said

    I’m sooo tired all the time, sometimes sleep for 12 hours, still tired. I NEVER feel good, have swollen glands 5 out of 7 days a week. I have to work so use up any energy I have at work, none left over. Could b12 deficiency account for swollen glands? I’ve always had low energy even as a child. Everyone thinks I’m a hypochondriac, so I never tell anyone that I don’t feel well anymore. Doctor’s have said it’s Chronic Faigue, but offer nothing in the way of getting rid of it!! HELP, tired of feeling sick and tired!! Robin

  15. Gail said

    Robin, a B12 deficiency can masquerade as chronic fatigue syndrome, because the symptoms can be so similar. Regarding your swollen glands, it sounds like your immune system is working overtime and becoming exhausted.

    I’d strongly recommend that you find a good, high-dose sublingual B12 supplement. Please take it as directed (dissolved under the tongue). B12 cannot hurt you, and may very well help your fatigue. Since a month’s supply of 1000 mcg B12 is only about $10-12, it’s certainly inexpensive! You just have to be sure to take it every day.

    I mentioned your immune system, and one vitamin that works closely with it is vitamin D. If you don’t get a lot of sunshine (without sunscreen), and you don’t already take a supplement that gives you more than 800 IU, then you may want to consider also taking at least 1000 IU of vitamin D a day. It’s even less expensive, at about $3 for a month’s supply.

    In today’s technological world, we many times forget to look for the simplest solutions, which includes vitamins.

  16. LORAINE said

    I REALLY APPRECIATED READING ABOUT YOUR EMAILS ON VIT B12. MY DOCTOR SUGGESTED I TAKE THE SHOTS STARTING NEXT WEEK, 2 TIMES A WEEK FOR 5 WEEKS, THEN 1 A MONTH FOR 4 MONTHS. I DO HAVE HEART PALPITATIONS AND HAVE FOR MANY YEARS. I’M GLAD I FOUND A DOCTOR THAT MIGHT HAVE FOUND THE PROBLEM. THANKS FOR BEING HERE.

  17. Gail said

    Loraine, I’m so glad that you found a doctor who will help you! I don’t doubt that you will be feeling better in no time. All my best to you, and thanks for stopping by. :)

  18. Debbie said

    A year ago I started with chronic head aches, from waking up in the morning to going to bed at night. I generally have no energy and am always yawning. I sleep well because my GP has put me on 20 mg of amtytriptiline to take before I go to bed, so think these help to make me sleep. I am often very disorianted and dizzy and this is how it all began in October 2007 with a sudden excrutiating headache and the room started to spin. I have had a MRI scan and they said it was all clear and my GP now says that I just have to live with it and that they are tension headaches!

    I have been having Indian Head Massages as I read that these are supposed to help, though I dont think they have really done anything. Does a deficiency in B12 cause headaches? I think this is probably the only thing I havent had checked.

  19. Gail said

    Debbie, you sound like you’ve had a rough time of it, for sure. I’m glad that you’ve had an MRI and such, because that was very important, given your situation!

    B12 effects the nervous system, so some of your symptoms could certainly be B12, and I’d urge you to get your levels done. Just remember the have your doctor prescribe the urinary test, and not the blood test for B12 (the urinary test is much more accurate).

    I had a friend who had headaches and general axiety, so her doctor put her on Paxil. It turned out she was B12 deficient and all that she needed was the B12, but she spent a year on Paxil, then a year trying to get off before she felt like herself again.

    All the best to you, Debbie, and I hope you can get those levels done.

  20. Gail said

    Debbie, you sound like you’ve had a rough time of it, for sure. I’m glad that you’ve had an MRI and such, because that was very important, given your situation!

    B12 effects the nervous system, so some of your symptoms could certainly be B12, and I’d urge you to get your levels done. Just remember the have your doctor prescribe the urinary test, and not the blood test for B12 (the urinary test is much more accurate).

    I had a friend who had headaches and general axiety, so her doctor put her on Paxil. It turned out she was B12 deficient and all that she needed was the B12, but she spent a year on Paxil, then a year trying to get off before she felt like herself again.

    All the best to you, Debbie, and I hope you can get those levels done.

  21. Debbie said

    Thank you for such a quick reply. I have called my doctors are requested the test. I do struggle to concentrate and feel very confused alot of the time, so fingers crossed it is my B12!

    Thank you again, I will let you know how I get on.

  22. Belinda said

    I was diagnoised with a severe B12 defficiency almost 4 years ago. I can not work for almost 2 years. I had most of the symtoms that you listed above. I was taking the B12 shots every week for about 4 months then 1 every other week and now 1 once a month plus taking cerefolin. But I am having severe leg pain now, is this something that I have to live with due to the damage of the B12 defficiency?

  23. Sherry said

    I have been so depressed,tired and find it so hard to sleep at night after working a 12 hour shift and driving a hour to get home and still can’t sleep. I finally went to the doctor and told her everything, she sent me for blood work, which I had the next day, she said my B12 was dangerously low (202) she put me on B-Complex and Alpha Betic, I take both vitamins once a day, will that help raise my level, I’m so tired of crying for no reason and not sleeping when I’m so tired all the time. Please help

  24. Gail said

    Belinda, I can’t say for sure that your severe leg pain is due to the nerve damage from the B12 deficiency, or if you’ll have to “live with it”. Have you also been checked for diabetes, and for any other vitamin deficiencies? I assume you’ve talked with your doctor on this; has he or she been able to offer up any ideas?

    I’m sorry I can’t be more of a help on this!

  25. Gail said

    Sherry, if the B12 isn’t sublingual, it’s not going to do you a lot of good. Vitamin B12 is only released in the presence of stomach acids — if you just swallow a pill with some water, it passes through your system without being fully metabolized. The possible exception; if you take the B12 immediately following a meal.

    Check with your doctor about a B12 shot to get your deficiency cleared up fast, then B12 sublinguals can help keep you at proper levels. But if your doctor doesn’t want to give you a B12 shot, drive on down to the nearest health food store or pharmacy and get some sublingual B12, at least 1000 mcg. You need to get your levels up to par so you’re not so tired all the time.

  26. Bruce said

    Does anybody know if long-term use of Ambien has any effect on B12 levels? I googled it but didn’t find much. TIA.

  27. Gail said

    Bruce, I found Ambien mentioned on page 24 of the book I mention in the post above (Could it be B12: An Epidemic of Misdiagnosis). It’s listed as one of several prescription medications that can mask the effects of a B12 deficiency until it’s very far progressed. Some of the drugs on the list also deplete the body of B12. (I know from experience, as I had taken one from the list at one point.)

    I couldn’t find Ambien listed anywhere else in the book by mame, but I also haven’t done a thorough search and I’m not sure of the generic name. Anyway, at the very least, Ambien can mask the symptoms of a B12 deficiency. If you’re concerned at all, get a urinary MMA test for B12 levels done, as it’s by far the more accurate test. Then you can go from there.

  28. Bruce said

    Gail, thanks for the response, but I should back up here a bit.

    After many neurological and other problems, I was diagnosed with b12d in early September, had 4 1,000 mcg shots a week apart, and have been taking 5,000 subs since the last shot. My problems have either diminished or disappeared except for numbness in my feet. I went back to doc yesterday and asked for more shots, but he wouldn’t do it, said oral is fine now, which I know isn’t necessarily true. But I didn’t feel like getting into an arguement with him so I dropped it. I am not anemic, and I suspect my deficiency was caused by alcohol and a lot of antacids over a period of several years, so hopefully I am absorbing the sub doses. I quit drinking totally after I found all this out last month.

    All they did was the standard blood test, number was 234. So I started digging around and bought Sally’s book shortly thereafter. I realize it’s too late now for other tests because everything will probably show normal or high, besides we KNOW I am deficient anyway.

    Here is why I posed the question about Ambien (generic: zolpidem). I have been on it for 4 years. I questioned the doc several times over the last 4 years about this, because all info says it should only be given for a week or two. He said no, taking it long-term is fine. I was always skeptical about that but kept taking it.

    I do see it listed in the book now, I didn’t pay any attention to it before, thanks for the tip. My doc missed 4 years of growing symptoms, getting more pronounced and severe as time went on and he missed them all til the blood test 7 weeks ago, and now I find that Ambien is in the mix.

    He is a nice guy but so clueless about b12d. He did NOT KNOW, til yesterday when I told him, that it can cause blurred vision, low blood pressure, weight loss, brain fog, all symptoms I’ve complained to him about before.

    I’m self-employed and pay nearly $4,000 a year out of my pocket for health insurance. Not to mention my tax dollars that are used to subsidize universities including medical schools. And this is the kind of “expertise” I get? I am educating my “doctor” about a simple problem, which has been known about and easily treated for decades?

  29. Gail said

    Bruce, I know so very well what you’re doing in educating your own doctor! I’ve had to do my share over the years. What’s frustrating (as I’m sure you will agree) is that many times the doctors won’t even listen to you when you talk about vitamin deficiencies!

    In truth we can’t totally blame the doctors so much as the system. Nutrition is normally not a required subject in medical school, and it really should be. After all, a deficiency can cause so many problems, yet be cured easily and inexpensively. Much less expensively than costly prescription medications!

    You bring up an excellent point, Bruce, about antacids interfering with B12 uptake. Since B12 starts metabolizing in the presence of stomach acids, regularly taking antacids can cause a problem with the uptake. If you’re not taking antacids regularly now, you probably are getting a benefit from the oral B12.

    I’m so glad that your symptoms have either diminished or been cured by the B12 shots/oral doses. And in teaching your doctor, hopefully that will make him more aware when someone else comes to him with the same symptoms!

  30. Bruce said

    Hi Gail, thanks for your thoughts.

    I’ve known for a long time that the more I drank the more antacids I needed. Since I quit drinking I have not needed any antacids at all, so hopefully I’m on the right track. That was something else my doc didn’t know: that chronic use of antacids can cause you to become b12d. It’s funny, in a sad way.

    Him and his PA both told me when I started the shots that it might help my foot numbness, but said nothing about my vision, peripheral neuropothy, brain fog, dizziness, etc. problems. He was a bit stunned when I told him yesterday that all those other symptoms have pretty much cleared up. For those, he wanted me to see a neurologist back in early September (I made an appt. but cancelled it). He had no clue that all those other symptoms were caused by b12d.

    Pretty amazing.

    Yes, hopefully he’s learned something and it may help his next b12d patient be more accurately diagnosed.

    Thanks again!

  31. Wanda Daniels said

    My mother had a vitamin B 12 deficency. I now believe that I do too. I am 66 year old woman. I know that I am anemic. Someone said that if you have a deep groove on the tongue, that would indicate a B 12 deficency. Is this ture? Beacause I have such a groove on my tongue. Also the symptoms listed for B 12 deficency, I have many of them.

  32. Bruce said

    Wanda: I’ve never heard anything about a groove on the tongue, but I guess some people get a SORE tongue with b12d. But if you’ve got a lot of the expected symptoms and are anemic you should get tested.

  33. Gail said

    Wanda, I agree with Bruce — a sore tongue is one of the signs of a B12 deficiency. You do need to get checked, especially if you have trouble digesting food, because you may need B12 shots.

    (B12 shots are needed instead of sublinguals if your digestive system is compromised [like in weight loss surgery] or if you have low stomach acids. Since B12 starts being metabolized in the stomach, if you have disgestive problems your B12 uptake may be limited.)

  34. Brenda said

    Good morning;
    On October 16/08 I woke up and the room was spinning. I couldn’t focus on anything for the longest time. I bounced off a few walls in the house because I couldn’t focus or keep my balance. It scared the daylights out of me. This happened out of the blue. I got sick only once. I took a gravol to help with the symptoms. The next day I was nauseated all day. Saturday morning I was getting ready for work and I had another bout, but milder. I went to emerge and the doctor there said I had Vertigo. I was off work for a couple of days. I’m not sure the diagnosis is entirely right though.
    Even now, I’m still feeling nauseated when I eat, my vision is blurred, I usually have a sharp mind but have been forgetting things lately. Before this bout of “vertigo” I noticed my vision changing. I’m “gassy” alot and have been getting heartburn when I’m not one to get it at all, not even after eating spicey foods. My fingers go tingly sometimes and I get that “going to the dentist” nervous feeling in my legs and arms out of the blue. I’ve never been one to get headaches but I’ve had them alot since the “vertigo” I’ve also had twitching spuratically between my shoulderblades/back of neck area. They took my BP at Emerge and it was 125/80
    I’m 48 years old and went on BC pills because my periods were painful and heavy…the joys of menopause. I haven’t been on them long. I don’t sleep well and when I’m on night shifts, I’m tired and can’t sleep during the day. If I get 3-5 hours it’s a miracle and that’s even broken sleep.
    I can’t get in to see my physician until Nov. 26, but I want to go in armed because I’m tired of being sloughed off so to speak.
    Last year my iron was at 11. Apparently it’s supposed to be between 25 & 82..”what” I don’t know. I had it checked again about 5 months ago and it was at 34.
    Like I said…when I go to the doctor’s this time….I want to get some answers.

    • Tanya said

      I cannot believe this. I read this old post and was floored to the point it brought tears to my eyes. I am a 33 yr old mom/married. Last Monday out of the blue I was struck with symptoms like a panic attack. Very hard to breathe in and out it felt like I was not getting enough oxygen. My vision was “off”. I felt so weird – lightheaded – disconnected. Then my forearms felt as though they were being squeezed and my fingers got tingly. I was so scared I had a blood clot or something. I could not drive all the way home because of my vision. At the hospital, I couldn’t move my hands much due to the tingling they felt frozen. Also my upper legs. They gave me oxygen – took my BP – and I don’t know why but it HURT so bad! I had 2 labors with so little pain medication but this pain was worse. It felt like my arm would burst. I screamed in pain. My BP was perfect – 100% oxygenation and my glucose was normal. Even had a head CAT scan – normal. They said it was probably a panic attack. But it was nothing like the few I had years ago when I actually WAS stressed. This was a thousand times worse.
      Sice then every day my arms from my forearms down are tingly. It hurts in my inner elbows. My pinky fingers both go numb. My shoulders ache. My chest hurts through to my back. I get nauseous and lightheaded daily. I have to take deep deep breaths for some reason. I started with major stomach/chest pains in March. Ruld out stomach cancer/pancreas/spleen problems – xrays/CAT scans, blood work, ultrasound. Turns out I have acid reflux!?! I NEVER had even heartburn before – all of a sudden I was burping all the time, real gassy. I get reflux from the most normal food – oatmeal and bland things. I had such severe stomach spasms I was in hell. Only one day though.
      Through this I realized last summer I had the odd vision issues – I felt disconnected from reality somehow-like if someone falls asleep in school – and you wake up with a start. Also I have always been so lethargic and tired – too much to do basic house chores. No motivation. I get very moody – even lose my temper – and get depressed for no reason. The past week, I am not getting tired. I took an Ambien last night – didn’t even work. And I seldom take them. I feel like I am going nuts!

      ANyways – I go for bloodwork Friday…

      • Gail said

        Tanya, I’m glad you are going to get some bloodwork done. You might also want to ask about a urinary MMA test — more accurate than the standard blood test for a B12 deficiency.

        When I was on a particular medication (that I found out later severely effected the B12 uptake in the body), I got the vision problem (as well as the lightheaded, disconnected feeling). I got off that medication and the symptoms cleared up, but it wasn’t until I read the book that I realized how classic my symptoms were…not to mention the name of the particular medication was listed as a problem med!

        If you are still having stomach problems, you might want to be tested for Celiac as well.

  35. Gail said

    Brenda, I’m so sorry to hear that you are not feeling well. You do need to go to the doctor, though, as the symptoms could also be high blood sugar (i.e. diabetes). You do need to get that ruled out.

    If diabetes is ruled out, then you do need a test for a B12 deficiency, as your symptoms are pretty classic. Please insist on a urinary MMA test, as it is by far more accurate than a blood test.

    I’m hoping for the best for your doctor visit. And yes, you are right to go in armed with information — good for you!

  36. GG said

    Hi,

    My sister has been diagnosed with Mononucleosis in the past. They checked her B12 levels and found them to be extremely low and therefore were giving her shots to increase her levels. That happened a few years ago. Recently, my sister has not been feeling very well; she is very tired, achy, her tongue is numb, she lost her sense of taste (only about 5-10% works on one side of her tongue), her cognitive abilities are very much affected, and a few days ago she woke up with half of her face numb (when she would smile you could definitely see one side not working). We took her to the emergency as we were all worried that she might have had a stroke or something. They did bunch of lab work (all came back normal), they did a CT scan (came back normal), EKG (somewhat normal), the next day they did an MRI and checked her B12 levels. Keep in mind that for the past 4 days prior to her emergency room visit she started taking a mega dose of B12 that she had (pill form). Long story short, the neurologist is not sure what is going on with her, but she has been told that there is a lesion on her brain and that with her symptoms she might possibly be diagnosed with MS. It’s not certain yet, but she is waiting to have another MRI done in 3 months to see if any new lesions occurred. In the meantime, the B12 levels were also checked and she was borderline (I wonder if she would have been MUCH lower had she not taken any supplements prior to the labs). Anyway, she and her family are devastated with the possible diagnosis, which led me to do some research. I am absolutely amazed how much information there is about B12 deficiency, and the debilitating symptoms people have had because of it. A lot of people have been writing about been diagnosed with MS, but later found out that it was severe B12 deficiency that caused very similar symptoms (even lesions on the brain). My sister has a follow up appt. with her Primary doctor today and I will make sure to go to that with her and push for further testing of her B12 deficiency. I am not a doctor, but since she has had a problem with B12 deficiency in the past, and she has been dealing with those symptoms for a while, I would think that the lack of treatment has now caused more severe symptoms. I am frustrated that the doctor would tell her the she might have MS without being aggressive to check other causes for her symptoms. I will definitely tell my sister to ask for the sub-lingual B12 or shots to see if her health improves. Thanks so much for all the important info!

  37. Gail said

    You hit one of the nails on the head with your comment of “In the meantime, the B12 levels were also checked and she was borderline (I wonder if she would have been MUCH lower had she not taken any supplements prior to the labs).”

    Yes!!! Your sister was known to have a low B12 to begin with, and was taking mega-doeses for 4 days prior to the labs. Now imagine how much she had extra going into her system, yet still have the tests come back borderline — she had to be very deficient.

    I worked with two ladies who at the same time had similar symptoms. Both went to their PCP. One PCP diagnosed MS, the other diagnosed a B12 deficiency. The one whose PCP found the B12 deficiency urged the other lady (who had been “diagnosed” with MS) to have the PCP check the B12 levels. Sure enough, she didn’t have MS, but was also B12 deficient.

    Big hugs to your sister, and I hope that it all turns out all right in the end.

  38. Bruce said

    GG: B12D might very well be her only problem. The lack of knowledge about it is stunning (see my previous posts).

    One of my numerous complaints was blurred vision. My doc didn’t see anything obvious so he sent me back to where I had gotten my new glasses a year and a half ago. The eye doc checked everything but found nothing wrong. He did mention the phrase “multiple sclerosis” once, referring to someone else who had come in with unexplained blurred vision.

    That scared me.

    I went back several times after that to my regular doc, and his assistant said there could be several explanations for my many neurological symptoms, MS being the “worst case.” Not what I wanted to hear.

    My eye doc asked me to call him back when I found out what was wrong with my vision, so after it cleared up following B12 shots and sublinguals, I did. He DID NOT KNOW that B12D could cause blurred vision!

    As so many others have said before, with these kinds of symptoms B12 deficiency SHOULD ABSOLUTELY BE RULED OUT BEFORE ANY FURTHER TESTING.

    Be persistant with the “experts,” and the best to your sister.

  39. GG said

    Hello!

    Thanks for all the support for my sister! I will definitely pass the positive comments her way! Well, we went to see her PCP today…what a waste of time! The guy was so annoyed with me because I was there to advocate for my sis and wasn’t going to let him slide this time. She has been under his care for a little over a year, and has complained to him about some of those symptoms for a while. I find it so unbelievable that so many doctors fail to do such a simple blood test that could very well be the main reason of why someone is not doing well. The doctor basically wanted to tell my sister that we have to wait for 3 months until she has another MRI to see if a new lesion occurs…I was so upset and told him that if he had landed in the emergency room with the same symptoms (memory loss, numbness in the tongue, loss of taste, numbness in the face, etc) and was told that he may possibly have MS, then there is no way in hell he would just sit around and wait for 3 months and do nothing. I insisted that a closer look be taken into this B12 deficiency (pernicious anemia). In the meantime, he gave her a shot of B12 in his office (after I practically had to beg for it), and sent her home with 3 more doses (1 shot per week…my sister’s mother-in-law knows how to administer shots, so she probably will do it for her). In about 3 weeks we will test her levels again, plus I told him that I want more detailed tests done to figure out WHY she is not absorbing the B12. I have read that you can have normal levels of B12 in your blood, so tests come out OK…but that does not mean that the B12 was absorbed into the tissues, so there are other tests that they can do to see how it is absorbed or what causes the lack of absorption. The doctor agreed to do those tests in 3 weeks as a follow up. In the meantime, I am going to read as much as I can about this and put my sister’s mind at ease! I am also encouraging my sister to switch her PCP, cause clearly this guy is not aggressive enough to find out what is truly going on with her…with such serious symptoms as she’s having (which possibly may not be reversible), I just cannot wait around for even a day! Good luck to all of you who are dealing with similar symptoms and are desperately looking for help! I hope all goes well for all of you!

  40. Bruce said

    GG: Have you read “Could It Be B12?: An Epidemic of Misdiagnoses” by Sally M. Pacholok? It’s an excellent book, available at Amazon. Good luck.

  41. Gail said

    I’m glad you went with your sister as an advocate, GG. And I’m glad that you held your ground about getting those shots! And yes, with a PCP resistant to considering anything about possible causes like a vitamin deficiency — I’d choose another one as well.

    I personally have one physician who is an excellent doctor in all ways except considering nutrition (I know far more than he does). I keep him because good doctors in his specialty are hard to find. And I can read up for myself the nutritional issues. While I don’t necessarily recommend this as a course of action for everyone, in my case it’s kept me healthier.

    Bruce, thanks again for chiming in with your experiences — I appreciate it. Your story helps to lend a different perspective.

    Yes, that B12 book (link in the post at the top of the page) is excellent. It showed me how many of the symptoms I’ve had on certain medications (notorious for interfering with B12) were exactly the symptoms of a B12 deficiency. And now I am sure to regularly take my B12 supplements and feel much better.

    The best to everyone, and GG, please come back later and update us on your sister.

  42. annie said

    Does anyone have trouble speaking at times? As in stuttering and/or words become jumbled? For fatigue, do you get really, really tired all of a sudden and have to close your eyes and go to sleep no matter where you are? This is different from being tired all the time.

    I was diagnosed last year. Tried the vitamins, and they didn’t work. I had a shot last month and will get another one next week. The shot I had last month didn’t help at all. I have practically all of the signs and symptoms listed above. On the Mayo Clinic’s web site, I have seven of the eight symptoms listed. I suspect I’ve had it for many years and don’t think I’ll ever get better, especially when it comes to fatigue, tingling, memory loss, confusion, loss of coordination and balance.

  43. Bruce said

    Annie: You said you “tried the vitamins.” Just regular B12 pills that you swallow won’t help any. You need high dose sublinguals, 2500 or 5000 MCG, preferably methylcobalimin. And if you’ve had all these symptoms for a long time, your doctor should be more aggressive with the shots, it seems to me.

    As for your other questions, I don’t really know.

  44. Brenda said

    Thanks for the info Gail.
    I spoke with the doctor where I work. He told me to get my B12 tested also a Red Blood Cell Folate test and my thyroid checked out. He said there are many causes for the symptoms I have which make it difficult to diagnose right away. I feel like I’m in a fog all the time.

  45. Brenda said

    Oh yeah…when I had my blood checked a few months back, the doc said I wasn’t diabetic and that my cholesteral was fine and my iron was at 34, so it was climbing but still not up there. Next Wednesday is my doc’s appt. I’ll get everything done then. I’m going to get my night shifts accomodated too for awhile I think. I dont believe this is helping me any either.

  46. nancy said

    I HAVE A 15 YR OLD DAUGHTER WHO HAS BEEN SUFFERING FROM TIRESNESS AND FATIGUE FOR OVER A YEAR NOW SHE HAS BEEN TO 3 DIFFERENT DOCTORS AND NO ONE HAS EVEN MENTIONED THE B12 DEF. THEY JUST SAY THAT SHE IS DEPRESSED AND WANT TO KEEP HER MEDICATED. SHE DOES HAVE A FEW OF THE SYMTOMS THAT ARE ASSOCIATED WITH B12 DEF. SHE HAS ANOTHER APPT WITH AN HOLISTIC DOCTOR ON THE 19TH ON JAN I WILL MENTION THIS TO HIM ABOUT THIS HOPEFULLY HE WILL BE ABLE TO HELP HER ALL SHE WANTS IS TOO FEEL NORMAL AGAIN AND BE ABLE TO DO THINGS WITH HER FRIENDS ALL SHE IS ABLE TO DO NOW IS JUST LAY AROUND AND SLEEP THANKS

  47. Gail said

    Nancy, good for you to take your daughter to a holistic doctor! In general, they tend to be more open to things like considering vitamin deficiencies.

    While I don’t know if your daughter does indeed have a B12 deficiency, if she has some of the symptoms, she really should be checked. Just make sure that the test is the urinary test, not the blood test (the urinary test is more accurate).

    You also don’t state what kind of medication she’s on, but if it should be an anti-depressant, be aware that it can interfere with the ability of the body to use B12. In other words, you need more B12 on a daily basis just to stay even.

    Just as an anecdotal story, a friend of mine was diagnosed as being depressed and put on medication, when it turned out she was just B12 deficient! Once she got her B12 injections and got off the anti-depressant, she felt 100% better.

    I’m not saying this is definitely the case with your daughter, but keep it in the back of your mind — and metion it to the doctor!

    All the best to you and your daughter.

  48. Mary said

    Very informative site! I want to make one little clarification though. You stated that B12 deficiencies are curable. This is actually a bit of a mis-statement. In my case, with pernicious anemia, B12 deficiency is not curable. Since, I am lacking the protein necessary to absorb the B12 from diet. I can be “treated” with B12 injections for the rest of my life. But, there isn’t a cure that will allow me to begin absorbing B12 again. If I were to stop taking the injections, I would deteriorate again, possibly to the point death.

    Sorry for the nitpick. I just wanted to clarify that one point! I appreciate sites like this that are available to put out information that most of us were not given by our doctors!

  49. Gail said

    Mary, you are absolutely correct in that things like pernicious anemia and gastrectomies do not allow the body to absorb oral B12 — the B12 injections will be a lifelong requirement for these people.

    And while B12 doesn’t cure (in a permanent sense) the illness, it does put into a remission of sorts; while the B12 is taken, the deficiency is resolved.

    Many of us are lucky in that our bodies can absorb B12 orally, and we are just deficient for whatever reason (diet, medications, etc.). But for those whose body can’t absorb it orally, the B12 injection can literally be a life saver.

    Thanks so much, Mary, for taking the time to write! I do appreciate it. :)

  50. Krisstina said

    I am wondering what type of Dr would be best to see for the B12 def.
    My General Dr sent me to a nuerologist for MS and I was diagnosed with the B12 def. She has me taking 6 months worth of shots, one amontha nd the b12 pills. She says there is no reason to retest. They did not test anything else but the b12.
    I feel that I should have more testing, after reaidng the book, “Could It Be B12″ I feel that I have more tahn likely been def. Since i was about 16, I am 37 now and diagnosed 3 months ago.
    Thanks

  51. Willie Sailes said

    I have some of the symptoms mention, but have been dealing with inflammation of the eyes for about 25 years could that also be a symptom of B12DF.

  52. Gail said

    Krisstina, your best bet would be an MD or DO that believes in treating holistically. While it’s excellent that you were diagnosed and given B12 shots and supplements, you really should be tested further. First, you want to be sure you are stabilizing on the B12. Second, you want to make sure there aren’t any other condtitions that need monitoring; a Vitamin D deficiency and testing for diabetes are the first two that come to mind.

    Willie, the eye inflammation may or may not have to do with B12. But since you have some of the symptoms, you should find a doctor that will have B12 levels run on you.

  53. chad said

    This is all very interesting to me. I have been having trouble sleeping at night, and when I do sleep I awake tired/no energy. I also have upper body aches & pains (arms, elbows & shoulders). I have been experiencing joint pain primarily in the elbows and took a cortisone shot for tendonitis in the right at the advise of my GP, but now I notice it in the left a little. My issues are mainly the following:

    Not sleeping well
    Lethargic
    Joint pain – Elbow & shoulder pain between shoulders
    Achy bone sensations
    Some dizziness at times
    Buring/raw feeling on tongue and roof of mouth

    I went to my ENT for the tongue issues. Even though he didn’t visually notice it he treated me for oral thrush, but it didn’t help. After that he chalked it up to certain foods that irritated my tongue.

    I guess my long winded question is could a B12 deficiency be contributing to some or all of this?

  54. Gail said

    Hi Chad,

    It’s possible that a B12 deficiency could be contributing to your symptoms. See if your doctor will order tests for a vitamin B12 deficieny and a vitamin D deficiency — both can cause symptoms like what you’ve mentioned.

    It’s amazing how something so small as not getting enough of a particular vitamin can make such a big impact in our lives!

  55. chad said

    Thank you. I am going to look into it. I’ve never considered this because I feel I eat right, exercise regularly, and take vitamins. But sounds like some of this is out of your control.

  56. RaDonna said

    Hello,

    I would like to share my story because I feel that it is very important. I started taking Nexium in the 90′s and developed symptoms of Lupus and/or MS that were transient. I also developed a case of Optic Neuritis, or de-mylenation of the optic nerves. Because of a move to another state I had to stop taking the Nexuim due to insurance changes, and went on Zantac. During the move I started to get better, no more symptoms of Lupus or MS, and it has been that way for 14 years. Well, I started to have more severe stomach problems and began to take a stronger medication than the Zantac. I switched to Prilosec. Well, I developed an eye twitch that would start up right after taking the Prilosec and stop overnight. This was consistent every day so I was able to make a correlation. But, the kicker is during this time I was taking Prilosec I had also began to develop facial numbness, tiredness, odd sensations in my arm, migraine, lack of concentration, irritability; this all looking like a neurological problem, like the one in the past. I stopped taking the Prilosec because of the eye twitch and the other problems went away too. I have since started taking B-12 everyday. If you happen to take a Proton Pump Inhibitor and have neurological symptoms or are really tired please be sure and take b-12 supplements. A doctor may miss this problem and think that it is something that can not be cured. It is well worth the effort to take b-12 and see if there is not improvement. This knowledge has saved me a tremendous amount of suffering.

    RaDonna

  57. Gail said

    RaDonna, thank you so much for sharing your story! And yes, it’s surprising the number of side effects that these drugs have, that we never even consider. Unless you have a situation where your body can’t metabolize B12, taking extra B12 vitamins can help keep your body’s B12 where it should be.

    And for any of you whose body can’t metabolize B12 (pernicious anemia, gastrectomy, etc.) it’s very important that you get regular shots of B12.

    Again, RaDonna — thanks!

  58. Andrea said

    Hi Gail. I just read this thread and it seems you know quite a bit about B12 deficiency. I have an ongoing problem with numbness and tingling in my hands and feet. It’s probably been about a year now. I just turned 50 and I’m wondering if I have the deficiency. My husband and I are blessed in so many ways but he is in the mortgage business and does not have a job at the moment so we have health insurance with a VERY high deductible just to cover us in the event of something very expensive. So what I’m saying is I can’t go have a bunch of tests done right now. I did recently have a complete blood panel (for some reason, the insurance covers that) and everything was normal. Do you think if I take those sublingual B12 tablets it could help? It can’t hurt, right?

  59. Gail said

    Andrea, you are right in that taking the B12 cannot hurt you — B12 isn’t stored in the body, unlike vitamin A (which you can take too much of). So go ahead and take the B12 sublinguals!

    Numbness and tingling can be a B12 deficiency symptom, for sure. And if you regularly take any medications (even over the counter), B12 could be depleted even faster.

    I’m assuming the blood panel included testing for blood sugar; if it did, then you don’t need to worry about diabetes. If it didn’t, then I’d say watch your diet very carefully; tingling and numbness of the extremeties can also be a symptom of diabetes / pre-diabetes. There are some good books out there on cutting back on sugar, and Get the Sugar Out, 501 Simple Ways to Cut the Sugar Out of Any Diet by Ann Louise Gittleman is one of my favorites.

    If your tingling is due to a B12 deficiency, you should start feeling less tingling in a week or so. If you don’t feel less tingling by the end of a month, then B12 might not be the cause.

    I know how it is, with high insurance deductibles. If the tingling still persists and blood sugar was not tested as part of your blood panel, check and see if it’s covered by your insurance (like your blood panel was).

    All the best to you and your husband!

  60. Andrea said

    Thanks so much, Gail. I really appreciate it. My blood sugar is fine so hopefully this is B12D. 2000 mcg sound about right per day?

  61. Gail said

    2,000 mcg sounds great to start. :) I started there and then dropped back to 1,000 mcg after about a month, when I thought my body had sufficiently replenished its stores.

  62. Andrea said

    Thanks so much, Gail!

  63. km said

    Hi! I have been diagnosed with a B12 deficiency and getting shots, at first 3 amonth and now 1 time a month for 5 months with little to no improvement. Symptoms include fatigue, forgetfulness, and mostly leg fatigue and haeaviness with some sharp pain occassionally on a “bad day”. I just had an EMG and all came back normal. Previous leg ultrsound also came back normal. Neurologist strongly suggests I go get a full GI workup to find out why my body is not absorbing the B12 (second blood test results show little increase). What causes your body not to absorb it and if already getting injections with no help, how do they fix it?

  64. Gail said

    Hi KM. You’re physician is correct in wanting more tests. I’m not quite sure why the GI (since the B12 is already in the bloodstream), but it may still provide some clues.

    One reason why your body might not be assimilating B12 is perhaps you aren’t also taking in enough B6 (B12 and B6 work together). Another is that you might be taking another medication that severely depletes B12, or prevents the uptake.

    If the 3 shots a month helped more than the 1 shot a month, you may need to go back to a higher dose. In any case, you should evaluate the amount of B6 you’re also getting and any medications. I highly recommend the book “Could it be B12″ (link in the main article, above) for other clues as to your B12 deficiency. The best of luck to you in tracking it down!

  65. km said

    Thanks for the info. From everything I have read and have been told from the dr. they are saying that the small intestines have an intrinsic factor that is not allowing any B12 to be absorbed ~ how that get fixed, I am not sure…that is why the GI consult. I agree that I probably need to go back to more frequent shots, but ugh…wish I could do them myself!
    Will ask about the B6 too.
    Thanks,
    KM

  66. Stephanie said

    The posts have been very interesting to me. I was just told (yesterday) that I am B12 deficient after at least 30 years of symptoms. I remember having tingling in my feet, extreme fatigue and depression and gastrointestinal problems following a bad case of mononucleosis when I was 17. It was as if I never recovered fully from mono, though my doctor told me I was fine. I also always suffered from extreme pain during menstruation. When I was young I was told all my symptoms were psychological and stress related. Later, many doctors believed that I had MS because I had an episode of optic neuritis documented in 1992; however, none had been able to make a diagnosis of MS based on MRIs. Fifteen years ago, a friend told me I had fibromyalgia but the doctor only gave me that diagnosis five years ago. I also had migraine headaches and skin reactions and a bunch of other vague symptoms that would come and go. I was finally diagnosed with Celiac Disease in October (2008) and have been on a gluten free diet ever since. My gastrointestinal problems have improved. However, my neurological symptoms (tingling, numbness, weakness, shaking) have continued to get worse as have the exhaustion/breathing difficulties, depression and cognitive difficulties. I also have been having difficulty swallowing (food gets stuck in the valleculae) but I do not aspirate. I was told that I am “slightly B12 deficient” but my symptoms seem quite severe to me. I have just read that ridged fingernails and the loss of the moons indicates a B12 deficiency and I noticed that several years ago but did not know what it was from; my nails are quite damaged and deformed now. My mother has also taken B12 supplements for a deficiency during most her adult life, but either nobody ever tested me before or up until now I have fallen within the normal range. I have reas that the level considered abonormal in the US is much lower than that in Europe and Japan. My doctor only suggested taking 500 mcg per day, sublingually but I am thinking that with all my symptoms and the long standing nature of them I really need shots, at least to get started.

    Several of these posts sound as though Celiac Disease may be involved. Celiac Disease is an immune response to wheat, barley and rye (gluten) that causes the body to attack the mucosa of the small intestines (among other things). It can cause a B12 deficiency because the villi in the small intestines become atrophied, inhibiting absorption of nutrients. You do not necessarily have to be experiencing gastrointestinal symptoms to have Celiac Disease or gluten sensitivity and it is much more common than previously thought. Do the research on the web and if you think you might have it you will probably have to educate your doctor. Do not go on a gluten free diet without having the proper tests, though, as that will affect the results of the tests if you have them later.

  67. Gail said

    Hi Stephanie — thanks for your comment! You’ve given us lots to thinkk about, regarding Celiac Disease. I appreciate you taking the time to write it.

    I agree, 500 mcg is a small amount of B12 to start with. I’d go with at least 1000 mcg, and I also agree that a shot or two would be in order, to get your levels up there quickly.

    As for being “slightly B12 deficient” it depends on the test you had taken. If it was a serum B12 test, that would explain it — the serum tests are not as accurate and some people who are deficient only test as low normal with them. So if you had a serum B12 test and it came back as “slightly deficient”, then you are possibly even more deficient.

  68. Michelle said

    About 2 weeks ago I was told my B12 and Folic Acid levels were very low. My doctor told me to start taking vitamins and give it a couple weeks and see if it helps my symptoms, if not I need to come in and have B12 injections, if they don’t help I will need to see a neurologist. I went to the dr because I was having some extreme pain in my ankles and feet, like a ripping or tearing I couldn’t stand on them. This wasn’t a constant thing, just sometimes. So he told me I have nerve damage. He said because I have Celiac Disease, I am not absorbing enough B12. So since I have been taking the vitamins I feel like the pains in my feet and legs have lightened up a little but now on a constant basis they feel slightly tingly and sometimes worse. I also have some days I am so tired, even after sleeping all night and napping during the day, I have to force myself to get up. (I have 3 kids to take care of…can’t stay in bed!) I also feel dizzy at times. Another thing is I am not always able to grasp onto things. I try to pick something up and it might take me 4-5 times until I can get it to pick up. Is this a symptom as well? I thought I read that somewhere. I think I need to call the dr again and see if he thinks I should start the shots or give the vitamins more time.

    • Stephanie said

      Hi Michelle,

      I can completely relate- I have or have had all of your symptoms and more. The fatigue and the pain are difficult to manage but I believe it’s possible. At times I’m much better but with stress and a lack of sleep, symptoms are much more difficult to manage (I have been trying to get through graduate school). I now have multiple diagnoses including Celiac, Hashimoto’s and Fibromyalgia (which are often associated with one another) and various other gastrointestinal disorders aside from Celiac Disease, which complicates things. I don’t even think we have identified everything, yet! It is overwhelming at times but at other times I almost forget I have these problems. (I say almost because I have to be constantly vigilant about gluten even when I feel well, as you know).

      A couple of years ago (before the Celiac diagnosis) I was referred to an optic-neurologist for my dizziness. He found that the muscles in my eyes were not working in sync and gave me exercises to do. Now, whenever I start getting double vision or dizziness I do the exercises for a few days and it helps. I have read that this problem occurs sometimes with Celiac Disease. An optic-neurologist will also look for nystagmus, which refers to involuntary eye movements. Nystagmus is normal in certain conditions and it helps orient you when the visual landscape is changing rapidly, such as when you are spinning or looking out of a train window. If you have abnormal nystagmus (such as when you are looking at the same person who is stationary)or no nystagmus when you should, it could be associated with a problem with your vestibular system and contribute to a feeling of dizziness (it also an indicator of central nervous system damage). I have a slight nystagmus also. It may be a good idea to get a referral to an optic neurologist as well as a neurologist, as my general doctor and neurologist did not identify these visual problems.

      Sometimes people with Celiac Disease get ataxia, which is a muscle movement coordination problem; in fact, there is something called “gluten ataxia.” I have not been diagnosed with ataxia (it usually is not diagnosed until affects the gait/walking) but I have muscle spasms that cause involuntary movements (especially head bobbing at night) and periods of increased “clumsiness.” One example is a high frequency of typing inaccuracies because my finger overshoots or undershoots the keys instead of hitting them squarely.

      My neurologist put me on Doxepin many years ago, which helped with the extreme pain that kept me from sleeping well at night and probably contributed to my fatigue during the day). I felt an effect with Doxepin the first night, unlike the other antidepressants that I took out of desperation. It did not cure me and I again have severe fatigue but helped me manage many symptoms for years (though with some slight side effects). Unfortunately, I think it masked some symptoms and delayed the diagnosis of Celiac Disease and Hashimoto’s Disease (an autoimmune thyroid disease). In your case you already have the diagnosis of Celiac so that’s not an issue but of course you’d want to find out if it’s right for you. You should have your thyroid checked, though, if you haven’t yet and follow the levels of TSH (thyroid stimulating hormone). If they change dramatically over a time period, you should have it investigated further even if they remain within the normal limits. That is how my sister was diagnosed (before me) even though she always remained within the “normal” range. I did not have consistency in my doctors and medical records, so mine wasn’t diagnosed until it was much more severe.

      As for B12, I was told by the neurologist to use the sublingual and he did not specify which type. However, that may be based on his belief that I have a “slight deficiency.” I have read that B12 in the form of Methylcobalamin is more easily accessible to the body than the more ubiquitous Cyanacobalamin. I am presently taking a liquid Cyanacobalamin in a B Complex because it was the only thing available in my town. I am researching Methylcobalamin in sublingual form. I also got my general practitioner to give me an injection to get me started and I felt better for a day or two but am now feeling as bad as ever. Since I have multiple diagnoses and my symptoms fluctuate from day to day and hour to hour, it is sometimes difficult to determine the cause of particular symptoms. However, since you know that you have very low levels of B12, I would not wait to address that issue. Following Gail’s advice, I think I also need to check that I am getting enough folic acid, though I’m not sure exactly how to do that -a blood test?

      Since this is really a site for B12 deficiency, I probably shouldn’t go into so much detail regarding Celiac Disease but for me, it is hard to separate many of the symptoms. I also get carried away because I wish I had been educated sooner and I hope to help others avoid all the problems I have had. I’d be happy to continue an exchange with you through my private e-mail, if you want. I am certainly not an expert, but I’ve have done a lot of research and have had access to articles that you might not have access to (or time for with 3 kids) because I am a student. Let me know if you want my email address and I’ll post it, if I’m allowed.

      Good luck,

      Stephanie

      • Michelle said

        Thanks Stephanie for your reply! It’s always good to hear from someone else that is going through what your going through.

        My doc was able to check my folic acid level through a blood test.

        On the Celiac side, I was diagnosed 10 years ago…which then my doc had almost no info…he just told me to not have gluten! I had the time then to research because it was just my husband and I and no kids, but I felt there wasn’t a lot of info out there. But now I feel like there is a ton of info out there and with the family, my time is extremely limited! I am very much aware of all the ingredients I cannot have now and I have a friend that also has Celiac and she is constantly sending me info. So I was extremely surprised when my doctor said you have a B12 deficiency because of Celiac!

        I wanted to ask if anyone has muscle pain or a stretching or pulling feeling pain behind the legs, down the thigh or in the hip. Just wondering if this is also a symptom?

        I agree with my symptoms being different moment to moment.

        My thyroid you said I should suggest having tested? How do they do that? Are the symptoms the same?

        Thanks again for your response!

        Michelle

      • Stephanie said

        Hi Michelle,

        I have had muscle pain and pulling in my arms, legs, and everywhere with a tenderness on the inside of my leg where the knee is (this is apparently associated with “fibromyalgia”.)I also get a particular pain in my lower back to the left of my spine that feels very deep. As far as I can tell, fibromyalgia is a name for a cluster of symptoms; you may want to look it up and talk to your doctor about it since there are approaches to managing the pain, if it doesn’t improve with the B12. Being diagnosed with fibromyalgia is a double edged sword, though. Now that I have the diagnosis, whenever I complain to the doctors about some new pain, they like to attribute it to the fibromyalgia and tend not to look beyond that unless I refuse to let it go.

        Your TSH (thyroid stimulating hormone) can be determined through a simple blood test. A blood test will also indicate antibodies that attack the thyroid (Hashimoto’s). In thyroid disorders, fatigue is the most common complaint but symptoms vary depending on the type of thyroid disorder that you have. Weight loss or gain sometimes occurs. I also had pain in my neck on the sides of my larynx (voice box) and slight changes in my voice, but these symptoms are probably more associated with Hashimoto’s and not always present.

        Take care,

        Steph

  69. Gail said

    Michelle, I’m sorry you are going through so much pain. My thought is that you immediately need to start on those B12 injections. With also having Celiac disease, your uptake of B12 is compromised. In your case, sublingual tablets aren’t going to get you enough B12, unless you take lots of them a day. Your better bet is the injections.

    Yes, a B12 deficiency can cause nerve damage and loss of gripping strength (seeing as the nerves are used to tell the muscles to grab and grip). Just another reason for you to take the injections.

    Just remember — the folic acid and B12 both have to be in balance; B12 can’t work well without enought folic acid to balance it out.

    But good for you, that your doctor is willing to give B12 a try! As you can read from these posts, you’re one of the lucky ones in that regard.

    My best wishes go with you, Michelle!

    • Michelle said

      Thanks Gail for your response. I spoke with my dr this morning and he suggested coming in for the shot and also seeing a neurologist to make sure nothing else is going on.

  70. Gail said

    Stephanie, thanks so much for your post! I’m sure it will help people to consider the possibility of a low B12 being caused by a digestive malfunction (like Celiac).

    Yes, there is a blood test for Folate, but you shouldn’t be taking any B vitamins beforehand, or the results will be skewed — in other words, it may look like you are not deficient when in reality you are.

    Stephanie, you’re welcome to post your email address, but please be aware that you might get spam because of it (there are automated “bots” that run around the internet collecting email addresses). If you wish, you can format your email address like this: janedoe at yahoo dot com and you’re less likely to get spam from bots.

    • Stephanie said

      Thanks Gail! I did not think about the spam and your suggestion is a good one.

      Thank-you also for the folate information.

  71. Tanya said

    Just wondering if there is anything I should be aware of before I go for bloodowork tomorrow. I am getting TSH levels tested for thyroid, and B12 deficiency. Whatever CBC and ESR stand for…
    For years I have had unexplained fatigue. I am 33 and have 3 kids and work full time. But when it gets cold – I have 0 energy. I have already spent whole days in bed just because I was too tired. But normally, I am just too tired to do chores.
    I have an overactive bladder and got tested for that. My nerve goes nuts sending signals that I have to pee as soon as anything goes in my bladder – so I take Vesicare.
    My ability to focus, follow through were attributed to adult ADD – so I am on Adderall.

    As of March this year, I was struck with debilitating stomach cramps/spasms after feeling clammy, lightheaded and weak and nauseous. Next day major chest/stomach pains and shortness of breath. By way of x-ray, CAT scan with contrast, ultrasound and upper endoscopy – all they found is reflux and that my liver is slightly enlarged.
    All of a sudden I got super bad heartburn a few times also in March – and didn’t even have something to trigger it – not caffeine, wine, chocolate, spicy or hot food. I ate low sugar apple oatmeal?!?! I never get heartburn.
    Then one night for the first time (also within the last 3 months)- I got a horrible calf muscle cramp that was so bad, I almost went to the ER.

    An issue I never thought of is that my muscles between my upper shoulderblades are always so sore – and I even sit straight at work, I feel like I always have to crack my neck too. But when I get stomach pain with it- it shoots right to my back. Every day.
    My vision felt “off” last June, so I went to the doctor, got bloodwork, urinalysis and everything was normal. I went to the opthamologist and asked why my vision might be weird – not really blurry but just not right. He had no clue – but my vision in my left eye improved so dramatically that he said it may have been because my lenses were now too strong.

    Now, I am feeling that same “disconnected” feeling with my vision, and sometimes do not feel safe driving.
    I am wondering if I have an intestinal issue that prevents me from absorbing nutrients. I have always had bad skin, very dry hair that does not ever grow past my shoulders, I bruise pretty easy, and my skin does not heal well. If I itch – I scratch a little bit and then bleed. Then I scar. I am super prone to canker sores in my mouth. If I get an abrasion in my mouth – I get a canker sore.
    I read that taking a B-12 supplement helps people that are prone to canker sores – so by my deduction – wouldn’t a propensity for developing canker sores be related to having a deficiency in B-12?

    Also – I read about having ridged nails, and disappearing “moons” on your nails. I believe they are called lunulas. I just noticed that mine are gone – except for on my thumbs.
    All this was started a week ago Monday. I went to the ER with nausea, clamminess, short breath, pain in my stomach, and paresthesias (pins and needles) in my arms from my elbows down to my fingers. It spread to my lower trunk, neck and face. Then thighs. Then my vision got weird and I couldn’t drive any more. The worst was when the nurse took my blood pressure – it was the most severe shooting pain I ever felt! That was not right.
    My BP was perfect, 100% oxygenation, my glucose was perfect too.
    The doctor said maybe a panic attack. But I had a few of those a few years ago and they were NOTHING like this! No hyperventilating, no stress, etc. It started when I was calm and happy. Now every day my pinky fingers go numb all day, I get the feeling that I hit my funny bone from my elbows to my wrists. My wrists hurt bad. My elbows hurt and my shoulders hurt. For this all to suddenly start is beyond me. And now -for the first time- I lost my appetite. I feel ike when I breathe, I don’t breathe enough in. And I am starting to have a hard time falling asleep.
    I have felt depressed for years, anxiety, bad mood swings, irrational anger – and I don’t know why. Now finding out that almost all of these symptoms when lumped together could either be fibromyalgia or a b-12 deficiency. So many pieces to the puzzle – and so many doctors treat each symptom separately.

    • Stephanie said

      Tanya,

      I don’t know if you’ve read the previous posts but some of your symptoms (sudden acute gastrointestinal distress) and especially your comment about mouth sores reminded me of symptoms I experienced in high school, during what I now consider to be the early symptomatic phase of my Celiac Disease. My sores occurred most often in the crevice between my dental arches and lip/cheek. Often the sore would span the whole side of the arch. It was very painful! I mentioned these sores to every doctor and dentist and none could tell me what they were; they only said they did not think they were herpes related. I have since read that these particular sores are associated with Celiac Disease. I took L-lysine for years for them and I rarely get them anymore. I usually only get sores now when I use a new toothbrush. I used to think it was because of the stiffness of the bristles but since being diagnosed with Celiac Disease, I have learned that many toothbrush bristles are coated with gluten.

      Not all your symptoms sound like mine but if the sores sound similar, you may want to keep Celiac Disease in mind, especially if you are found to have a B12 deficiency and/or Hashimoto’s Disease (thyroid).

  72. Gail said

    Hi Tanya,

    CBC = Complete Blood Count.

    I did check in the book (“Could it be B12″) and both incontinence drugs as well as drugs for ADH are both known to cause a B12 uptake problem.

    Please request a urinary MMA, not the blood serum test, for the B12 deficiency.

    Best wishes that you and your doctor get to the bottom of this!

  73. ANGIE said

    I HAVE BEEN SUFFERING A MULTITUDE OF SYMTOMS A LONG TIME, GASTRO,HEADACHES,BLURRED VISION, BODY ACHES, MUSCLE SPASMS,SORE THROAT, IBS,SWELLING URTICARIA,BONE PAIN,NUMBNESS,TINGLING FEET AND HANDS A LEGS, CANT SAY WORDS WITHOUT WARNING,OCCASIONALY CANT GRASP AND HOLD OBJECTS,SOMETIME IN THE EVENING I CANT FEEL MY FEET AND LEGS TO STAND. NO INSURANCE SO IVE LEARNED TO ONLY TALK FOR THAT DAY BECAUSE THEY ONLY FOCUS ON ONE SYMTOM AND MASK IT, TODAY THE TOLD BE B-12 DEF. SHOT ONCE A WEEK FOR I THINK 6WKS THEN BI-WKLY, IM NOT SURE IF ALL THESE SYMTOMS ARE B-12 BUT ITS A START.

  74. Gail said

    Angie, I agree, a series of B12 shots is a good idea. While not all of your symptoms are classic B12 deficiency, a good portion of them are.

    The good news is that B12 shots are fairly inexpensive.

    If it is indeed a B12 deficiency (and it sounds like there is), the B12 can help many of your symptoms. Then you can concentrate on the others, one by one.

    Best wishes to you, Angie!

  75. Tanya said

    Well, I got my bloodwork results, and as I suspected – normal. My folic acid levels were not tested I found out. My thyroid levels were 1.121. My B12 level was 1192pg/ml.
    I read that seaweed can falsely inflate B12 levels. Supposedly the B12 blood tests cannot distinguish from inactive B12. I have been taking sea kelp extract – 150 mcg as a supplement to see if it helped.

    I am talking to my doctor to see about urinary MMA test. My question is how do I really know how much my body is absorbing? Hopefully I can find out.
    The depression over the last week is getting worse. All I do when I come home is stay in my room. My kids are confused and hurt. It makes no sense. I feel tired and sore, and sad and I have lost my appetite. I am losing weight and I am not trying to! I am just not hungry – which is the opposite of how I am. Normally I am always hungry.

    And really weird – my tongue feels too big for my mouth. I bit it a few times already. I have a hard time getting tired. Normally 10 PM I am ready to sleep, now I take an Ambien and it does nothing.

  76. Gail said

    Tanya, I feel so bad for you. It’s hard when the tests seem to come back normal, but you know something isn’t normal.

    I’m not a doctor, so I can’t say what all your symptoms are. You might want to do a Google search on swollen tongue to get some ideas for that. Is it possible that you are having an allergic reaction to something? Also, biting your tongue once seems to make it swell more, so that could also be a thought.

    Yes, taking a supplement that contains a good amount of B vitamins can skew the test results.

    I’m sorry not to be able to be of more help, but I give you lots and lots of credit for trying to get to the bottom of this. Depression hurts, I know. But it, too, can be overcome.

  77. Denise said

    I had a complete colectomy with J-pouch formation of small intestine 3 years ago. Was told I’d always need to take IM B-12. Have moved fairly recently and have not had shots in months. This past week began with palpitations but cleared by cardiologist. A few days later began with tingling in all extremities and face/scalp but one side greater than the other. Have also had foggy thinking, mild blurry vision and light headedness. Dr. ordered serum blood test today and don’t know results yet. Should I ask for urinary MMA even if he says my B12 is deficient? Should I see neurologist to make sure I have no neurologic disorder causing these symptoms? Received B12 injection today; how long will it take to feel effects? How often should I have shots initially? He said he’d give me another in 2 weeks if I’m deficient, but from what I’ve read that doesn’t seem like enough? Any info to help?

  78. Gail said

    Hi Denise, glad to have your question. Yes, you need to have IM injections of B12; there is no other way for you to get enough.

    If your blood serum test is low, that means your urinary MMA is very probably even lower. I wouldn’t think you’d need a urinary MMA unless your blood tests show no deficiency.

    Usually a B12 injection will start to have an effect in a few days, with continued improvement over weeks (and sometimes months, depending on how long the deficiency has gone on).

    Another shot in 2 weeks seems about right, unless you are massively deficient. Then you might need a series of shots once a week until you are more balanced.

    Only you know how you feel. If you feel you should see a neurologist, then please do so. Of course if you’re in an area like me, it will take 2 to 6 weeks to get an appointment, and you might already be feeling better. Still it might not be a bad idea to schedule an appointment, just to rule out anything else.

    If you don’t already have the book “Could it be B12″ (link above), you might want to get a copy and read it before your next exam. It sure was an eye-opener for me!

    Best wishes to you, and I’m hoping you start feeling better soon. :)

  79. Sue said

    I’ve been diagnosed with Pernicious Anemia and low B12. I’ve received 4 B12 shots and not really noticed much difference in my health yet, but am to receive 4 more shots and then have my blood tested again. One of the symptoms that have bothered me the most is the fatigue and forgetfulness/fuzzy thinking. For a while now I thought perhaps it was age, stress, etc. Will the B12 reduce those symptoms, or is it too late and the damage is done?

  80. Gail said

    Thanks for your question, Sue. When a B12 deficiency has gone on a long time (which it probably has in your case, given a diagnosis of pernicious anemia), it takes longer to show results once the B12 is brought back into balance. You might recover all the way or just part of the way, depending on the amount of damage done over the years. But I would expect gradual changes over a period of 6 months.

    (That may or may not be the case with you — I’m not a doctor, just someone who’s had to fight against B12 deficiency and has done research.)

    But any way you look at it, you will continue to need the shots. And it’s wise to test after the next 4, to see if your levels are still low (in which case you need higher doses or doses more often) or if you are stabilizing.

    Best wishes for you!

  81. john said

    I have had burning under my skin for fifteen years. The skin surface is never affected. It seems to be under the surface area. It is in my face, shoulders, back, buttock, and down my leg and has gotten worse. I did nothing for the longest time. Then a few years ago a blood test showed my B12 count at 174. After taking B12 orally I got my count back to a normal range, but the burning continues. The spinal MRI indicated stenosis and a bulging disc, but the neurologist felt it was insignificant. B12 shots for three months did not change the condition. I am starting to wonder whether there has been permanent nerve damage and no amount of B12 can reverse the nerve ending deterioration. Or maybe it needs to be taken in combination with something else.

  82. Gail said

    It’s possible that if the nerve damage was caused by a B12 deficiency, 15 years is a long time for the damage to go on. Some of the damage would be permanent, I’m afraid. And that’s why it’s necessary to get diagnosed as quickly as possible.

    The good news is that by getting your B12 into the normal range, it will help prevent further damage.

    I know that probably isn’t what you want to hear. But as to your question about if there is anything else you need to take, then I would say get an adequate ratio of B6 to the B12. What a lot of people (and doctors) don’t realize is that lack of B6 means that the body can’t assimilate all the B12.

    Check out the B6 page and make sure you are eating plenty of the B6-rich foods to go along with your B12.

  83. Sam said

    Hi,

    Thank you for this site. It is one of the most informative I’ve come across. I have had B12 deficiency symptoms for years, and was never tested ( only given SSRI’s and benzos and shooed away ). Then I became very deathly ill and this began my intense search for what was wrong. Turns out my B12 serum levels were normal ( which it would be since I was given two shots for the heck of it two days prior to having my blood drawn ). But I finally found a gem of a doctor who did a homocysteine test and an MMA test, and that was the answer I was searching for.

    Anyway, I noticed reading here that some folks are taking Ambien. I just wanted to say that I am an administrator of an online benzodiazepine withdrawal support group, and we have many many folks join daily who have become physically dependent on benzos, as well as drugs like Ambien and Lunesta ( which are very close to being benzos ). Ambien is well known to cause depression in many people. It is, after all, a central nervous system depressant. You must never ever abruptly stop taking Ambien. It must be slowly tapered, or you may suffer many debilitating symptoms for a very long time. I see it every day. Someone here mentioned that their doctor said it is ok to take Ambien daily for and for long term. I suggest you run as far away from that doctor as you can, because that is extremely wrong and dangerous advice. Shame on him!
    If you continue having these debilittaing symptoms, and B12 does not pan out to be the cause or your solution, please do your research about benzodiazepines ( Xanax , Ativan, Klonopin, Valium ) and Z-Drugs ( Ambien, Lunesta ) tolerance and withdrawal. They very much mimick each other as far as symptoms go and they are known to cause great great horrific suffering in some people.
    I can vouch that these drugs nearly ended my life.

    Thank you

  84. Paul said

    Hi,

    I have supposedly had a full endocrine and blood panel, although I found out this morning that no B12 testing was done. The doctors I deal with are not very responsive (PCP, endo, neuro), and it takes forever to see the specialists (typically 3 months) even on a recurring basis. I also cannot get them on the phone. I have rarely seen doctors prior to this, am 52 year old and previously healthy

    I began having tremor which i noticed mainly when writing. Coincidentally, I also developed vision artifacts, balance issues, orthostatic hypotension, missed heart beats. MRI is negative for lesions, no Celiac, slight thyroid disease (as it was described to me, I think it may be hyperparathryoidism), and slight Vitamin D deficiency for which I was prescribed 100 IU (1/4 RDA ). I have been taking some B supplements (B complex, and B2 50 mg) as an experiment to treat the symptoms. The B2 seems to be helping somewhat, still assessing.

    My question is whether the B2 high dosing will affect the B12 testing, and if so, how long should I discontinue?

    Thank you

  85. Gail said

    Hi Paul — I assume you mean B12 and not B2?

    Yes, taking a high dose of B12 will effect any B12 testing. You said you are taking 50 mg or 50 mcg? (B12 is usually measured in micrograms [mcg].)

    You don’t say how long you were experienceing symptoms before you started taking extra B12. In general, the longer you experience symptoms, the more time it will take for B12 to help.

    B12 isn’t stored in the body like some other vitamins, but it’s not totally “gone” even after a week. Without knowing exactly how much B12 you are taking (50 mg, 50 mcg or 500 mcg), it’s hard to assess how long it would take. Several weeks I would think, but I don’t know for sure.

    If you’re slightly deficient in vitamin D (per your doctor), you might want to check out my site on Vitamin D — http://www.thevitamindfacts.com/ and re-think about how much D you might need.

  86. Paul said

    Gail,

    No, I meant B2 (Riboflavin). I have only taken Bcomplex dosages of B12 (133 mcg). The reason I am asking is whether high dosing of any B vitamins can screw up the testing of B12. From your comments above, apparently they can affect folate testing.

    Thanks

  87. john said

    Gail, have you ever heard of excessive burning under the skin as a symtom of a vitamin B12 deficiency? If so, because I have lived with these symptoms the past 15 years, how long would I have to take B12 before knowing whether it would make a difference? You mentioned also taking B6. What further examination are you suggesting I have? Should it be with a fibromyalgia clinic of with a specialized neurologist? This is becoming a more and more of a debilitating ailment.

  88. Gail said

    Hi John, I can’t say that I have heard of an excessive burning sensation under the skin being a symptom of B12 deficiency. However, B12 has a great deal to do with the nervous system, so it’s certainly not out of the question.

    OK, since you’ve had these symptoms for 15 years, it will take longer for B12 to make a difference (assuming you have a deficiency). In general, I’d expect the relief to be more gradual, over the course of a few months.

    I don’t know how much you’ve seen your doctor (or how many doctors you have seen). If you haven’t seen anyone lately, a neurologist might be a good place to start (seeing as the burning sensation most likely has to do with your nerves).

    If you have not had a test for diabetes, that might not be a bad idea either. I’m not familiar enough with fibromyalgia to make a comment about that, though.

    Best wishes on finding the root cause of your discomfort, and for deeling better!

  89. Dorothy said

    Gail…your site is very informative-thank you. I am a 45WF who has always been very healthy. I suddenly started having fatigue, tingling head, arm and leg–but only on my left side, dizziness and headaches. I am also nauseous and have no appetite. Afraid that these might be stroke symptoms, I went to see a neurologist who did a whole battery of testing (MRI, Echo, full blood screening). All showed well but my blood test results. I have a very low B-12 level and she has referred me to a GP to get B-12 shots. Dr. indicated that this may well address the symptoms I am experiencing.
    I also came back positive for SLE lupus. Is there any correlation between the B-12 deficiency and the positive lupus results? I am also going to see a rheumatologist re the lupus, but I want to know what kind of questions I should ask as I don’t want to just be put on drugs because of a positive test result. Thanks for your (or any other reader) insights.

  90. Gail said

    Hi Dorothy, while I don’t know of any correlation that having a B12 deficiency could cause a positive SLE lupus result, I do know that having lupus puts you at risk for a B12 deficiency. And yes, your symptoms are classic for a B12 deficiency.

    As I am not all that familiar with lupus (symptoms, testing, etc.) I went on a little search and found the following site to have some giid information to check out: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523

    Best wishes on feeling better soon with the B12 shots!

    • Dorothy said

      Gail…thanks for the (very quick) reply. Needless to say, my husband and I are kind of freaked and everything I’ve been reading doesn’t help to reassure us. I am really hoping that the SLE results are incorrect. I have to wait two weeks before I can even get in to the Dr. to confirm. Thanks again.

  91. Sybille said

    Gail…..I don’t know if it was just luck or what to find your site.I am a 38 year old female with more health issues than a hundred year old woman.I have been diagnosed with the following(hope this won’t bore you, it is a long list)
    first it started when I had my first son they diagnosed me with postpartum depression.I did not believe the doc because I did not like him so I never went back and never recieved treatment for that.After the birth of my second son(which I have two older daughters)which was combined with an emergency c section and early laborpain(six months into the pregnancy)it felt like my whole world was falling apart.At first I was and still am very tired you talking about sleeping …..every chance I get.So I took a sleep study which supposed to have revealed that I had sleep apnea so I got a C PAP,months later they said I have also Narcolepsy.Then I started having depressions,which I have been into the intensive outpatient program twice in the last two years.Then I graduated from having anxiety attacks to having panick attacks which brought me into the psych ward for five days this year,suicidle thoughts and you know just ‘crazy’.At the same time my depression started I had episodes of severe pain mostly lasting from one to four days.The pain is so bad that nobody is allowed to touch me,which brought me to the emergency room last week.After a lecture from the doctor that I was in an emergency facility and not a chronic pain clinic he still ran some bloodtest for arthritis.The reason why I told him that I was having these episodes over years was because they thought I have the flu……
    Today I went to my appointment with my psycholigist and I told her that my depression and anxiety are well under control but I still have no energy,no motivation,blurred vision (only in one eye)and lately I am having problems with my balance,since I take the generic of Valium I at first thought that what caused my balance problems but I actually don’t get dizzy or drowzy I have to hold on to what ever I can grab not to fall over.I also have problems with my memory.All the chores in the house have do be done by my children and my very good husband.I can’t take care of the household,my kids, and just barely make it to work every day.I have to get up one hour early just to get motivated to go to work.
    Anyway after I told my doctor the problems I am having she said right away I could have a b12 deficiancy and ordered a blood test.The test came back abnormal they said my level was 247 instead of 180 or 190,wich they say was too low.Well I don’t understand how a higher number can be too low,would you mind explaining this to me!?I am from a different country so there is a lot of stuff I don’t get over here or trying to understand.Please,I am not stupid….I just wondered if the bloodtest was good enough after reading your whole page and you suggest the MMA test.My doc suggested to start getting the shots as soon as possible.Do they have side effects?
    I just want to be’normal’ again and take care of my family.I am tired of my husband making fun because I sleep 24/7.I am just tired of this life period.So I hope what I got today was some good news.

    Thanks
    Sybille

  92. bvitamins said

    Hi Sybille, wow you have gone through a lot! And I am not surprised that you could be low in B12, as the medications you are taking are known to interfere with the uptake of B12. But in any case, a level of 247 for a blood test likely means that your true score (MMA) is lower. Now that isn’t written in stone that a blood test would show a higher number, but merely that a blood test can be influenced by other factors.

    OK, here are some psychiatric symptoms of a B12 deficiency:

    confusion/disorientation
    memory loss
    depression
    mania
    paranoia
    irritability
    apathy
    personality change
    delusions
    hallucinations
    violent behavior
    schizophrenic symptoms
    sleep disturbances
    changes to smell, taste, touch, vision

    At the very least, you need some B12 shots to stabilize your levels, since we already know you are deficient. And probably why your doctor said 180-190 is low but 247 is lower — he/she probably meant that 190 is “officially” the deficient mark, but anything under 350 needs further testing.

    (Interestingly, in some other countries, a value of 600 is considered deficient.)

    There are no side effects to B12 shots, and you cannot overdose on them.

    I’m crossing my fingers that the B12 deficiency is the root cause of this (and if nothing else, it sounds like it’s heavily contributing to it), and that with the B12 shots, you will start feeling better and start living a more normal life.

  93. Nicole said

    Wow, I didn’t realize all this could be caused by B12 deficiency…

    I am 24 and I am always tired..ALWAYS..I thought my body just required more sleep, but people kept on telling me that that was not normal and I need to go get bloodwork done ( I also experience heart palpitations/dizziness/memory loss—I am way to young for all this). The Dr. said my B12 was extremely low and prescribed Calomist..have you ever heard about this new drug? It is a nasal mist that needs to be used once a day. It is supposed to replace the shot. However, I am always weary about taking drugs and since this is such a new drug, and is a man made supplement for B12, I am unsure. I don’t understand why I can’t just take a B12 supplement. Do you have any knowledge of this new drug?

    Thanks,
    Nicole

  94. Gail said

    Hi Nicole, I took a look at CaloMist and while it seems to be a replacement for the B12 injections, there are a few things I’m not too sure about. Not because of taking B12 nasally, but because of any “extra ingredients” that may be in the spray.

    The reason I say that is because of the possible side effects (taken from the website):

    chest pain;
    feeling short of breath, even with mild exertion;
    swelling, rapid weight gain;
    unusual warmth, redness, or pain in an arm or leg.

    Less serious side effects may include:

    headache, dizziness, weakness;
    nausea, upset stomach, diarrhea;
    numbness or tingling;
    runny nose, sneezing, sore throat, swollen tongue;
    fever;
    joint pain;
    itching or rash.

    None of these are side effects of taking B12 normally; they are clearly from the nasal form.

    OK, what about taking B12 as a sublingual tablet? If your body doesn’t have a problem with assimilating B12 (and you either just aren’t getting enough or are taking other medications that interfere with it), sublingual B12 tablets are the way to go. You can find them about everywhere — drugstore, online — and I’d start with no less than 1,000 mcg a day (and probably more to start).

    However, if your body just can’t absorb B12 on its own, then you will need B12 injections or possibly CaloMist. Although for me, I’d rather have the injections, after reading the CaloMist side-effects.

    So, CaloMist is for people who need to take B12, but who cannot assimilate B12 from regular sublingual pills. It is the nasal equivalent of the B12 shots. My guess it’s so you don’t have to keep going back to the doctor for injections.

    It’s up to you, how you choose to use it. You may suffer no side effects at all with CaloMist. It would just not be my first choice (personally).

    • Nicole said

      Thank you so much for your input…that is exactly how I feel about this new spray. I was just diagnosed with B12 deficiency and I would much rather try the sublingual tablet before taking my chances on this spray and getting unwanted side effects.

  95. Luke said

    Gail, first of all thanks a lot for this informative website. My dad’s been having problems since April 2009. He is 65 yo, very active and functional (owns a CPA firm). Symptoms that he’s been having are:

    1) Weight loss in few months (lost 10%) 2) Irritability 3) Memory loss 4) Severe depression 5) Very emotional 6)Confusion 7) Brain fog (his words) 8) Loss of interest in anyting (even stopped working) 9) Fluctuations in behavior 10) Fatigue

    I might have forgotten few but these are the primary symptoms. His B12 level came out 160
    (end of May 2009). He immediately started getting shots (once every day for 1 week, then now on a once a week basis in cynacobolamin form) and he is also getting 1000 mcg of methylcobolamin form of sublinguals every day. It’s been 2 months and no change. During that time, a brain MRI was done. It didn’t show anything. He went to see a GI. GI conducted an endoscopy; nothing came out. Neuropsychiatric test was conducted to see if there are signs of alzheimer’s/dementia. The lady who conducted test ruled out alzheimers but thinks frontal lobe dementia. Then we went to a psychiatrist and dad started taking anti-depressant (cymbalta). That does also not show any sign of help. Lastly, we went to a new neurologist who order a very detailed blood work. He wants to rule out any type of infection. Then his plan is to have a lumbar puncture. He believed it’s something serious and complicated. He doesn’t believe it’s B12 that’s causing these symptoms. We are puzzled as what happened to him and why it’s so difficult to find out. I also bought the book “Could it be B12″ and know that it’s something that can be easily misdiganosed. Wanted to share our experience so far and would appreciate any comments or suggestions. Thanks.

  96. Gail said

    Hi Luke, wow, sounds like your dad has gone through a lot! And based on the symptoms (plus the really, really low B12 reading), my first thought would be B12 deficiency causing many of these problems. Which they probably are, or rather contributing to the overall problem.

    I must say, your dad’s doctor is thorough in ordering the tests — that’s so good to hear, becuase so many physicians don’t test for B12, and they dismiss the symptoms your father is suffering as “just getting old”.

    I have heard of severe infections causing dizziness, brain fog, disorientation and such. A lumbar puncture would help to rule out anything that affects the nervous system.

    If it were my father, I would continue on the course the neurologist plans, with the detailed tests. I would also make sure that he continued to take the B12. While this problem very likely is something else, the B12 deficiency needs to be addressed with the shots and sublinguals, so that your father’s health isn’t compromised in that regard.

    Also, in case you haven’t done so lately; remove as much of the “whites” (white bread, white rice, white potatoes, white flour, etc.) from your father’s diet as possible. Also try to remove as much pre-packaged foods as possible. The reason: excess sugar and preservatives can interefere with the body’s uptake of vitamins (any vitamins). Fresh fruits, veggies, whole grains, poultry, fish, lean meat — all the foods we tend not to eat because it’s so easy to eat the fast, pre-packaged foods!

    Best wishes to your father, Luke. Thanks so much for sharing!

    • Luke said

      Thanks so much for the quick reply. Does it matter what form of B12 he gets? Cyano, hydroxo or methyl? And is there time frame in which one should see improvements in symptoms after the shots have started? I know it changes from person to person but just curious. Thanks.

  97. Amy said

    Gail
    Just one question if you find out that you do have B-12 deficiency low levels Do you really need to pursue reasoning why levels are low? Ie Celiac? anemia?
    I was just wondering what qualifications that you have? and work for which company? Thanks alot.

  98. Gail said

    Hi Amy, I would think it would depend on circumstances as to pursue why. For example, if someone is a vegetarian and doesn’t routinely take B12 sublingual supplements, that could certainly be a reason for low B12. Or, if someone regularly takes medication (over-the-counter or prescription) that is known to interefere with B12, that could certainly be a reason.

    But I also know (personally) some people whose deficiency is a result of their body’s inability to use B12 through normal means. In those situations, one would want to know why. Anemia? Gastric issues? Auto-immune diseases? You’d want to know why in case there are other things wrong that need attention.

    I’ve never hidden that I am not a physician or medical professional (I’ve mentioned it in quite a few responses). I am someone who has a B12 deficiency and know others who have the same (some far worse than mine). I do not work for any medical organization. I researched and built this site so that others would have information about B vitamins.

  99. Jenn said

    I started on B12 injections a few weeks ago. once a week for 3 weeks and then once a month. tomorrow is my last weekly. The doctor didn’t do an MMA, or any other B12 specific test but sent me for a blood workup and emg of my legs/feet. supposedly everything turned out ok, but after reviewing my long list of symptoms and taking note that I’ve been on antacids since ’80 that this must be it. I do remember last year, I noticed something in the low normal range on my blood work that dealt with B12 but that doctor dismissed it and hung a Fibro sign around my neck.

    When I had the EMG, and the test was on one certain nerve, I felt my whole foot, not just parts of it….more than I have in years. This happened on one leg more than the other. I took note of this since the same thing happened with my ulnar nerve in my arm when i had that tested…it was since relocated but still not right. Could B12 actually have caused this much damage?

    My main question is, roughly how long before the B12 injections actually makes a difference per studies? and the pain, the stabbing sensations, the electrical/lightening body shocks, the fatigue, muscle spasms, swelling, etc etc etc (the list goes on) and the walking barometer aspect cease and focus, memory, and the ability to walk around the block start?

    All this started in 2000 and an instant cure isn’t rational but I would like some relief and nothing seems to help. So much so that I stopped all the meds back in September…feels the same.

  100. Gail said

    Hi Jenn, you’re right, an instant cure isn’t in the cards. Since this has been going on for 9 years, the effects of the B12 shots will be more gradual. From what I’ve researched, it seems like it’s roughly a month per year before final improvement is shown. Obviously, that is not written in stone, and the healing process will happen along that timeframe, not all at once.

    A B12 deficiency can cause nerve damage, when the deficiency goes on for an extended length of time. How much or how little depends on the person, the amount and length of the deficiency, and whether there are any other factors (other diseases, other deficiencies, etc.)

    I’m glad you are getting the shots, and am wishing you all speed of your symptoms diminishing.

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