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Vitamin B12 deficiency is commonly misdiagnosed.

Posted In: Medical Stories 17082 Replies
  • Posted By: Anonymous
  • February 17, 2007
  • 00:51 AM

I diagnosed myself at the age of 21 with vitamin B12 deficiency. The only sign I had was enlarged red blood cells, no anemia. I am now 43 and have been an ER R.N. for 20 years and have also been researching vitamin B12 deficiency and pernicious anemia for 20 years. I frequently encounter patients who have signs and symptoms or are at high-risk for B12 deficiency, but doctors do not test. The one's that rarely do--- are not ordering a more sensitive test than the serum B12 test. All patients should always have a methylmalonic acid test, along with serum B12 (to aid in diagnosis). Out of frustration, witnessing patients who needed to be tested, and teaching doctors how to diagnose B12 deficiency, I co-authored the book, "Could It Be B12? An Epidemic of Misdiangoses," Quill Driver Books, 2005. 12 reviews on Amazon.com (3 from physicians). Many disorders or diseases don't have a treatment--- but B12 deficiency does. It is criminal for patients to sustain neurologic injury or permanent disability because health care professionals are not educated properly on B12 deficiency. This is a totally preventable and treatable disorder. My mission is to get a standard of care change in the early diagnosis of B12 deficiency to prevent poor health, injury, disability, poor outcomes and even death. Major malpractice cases have been won by patients who are permanently injured.
All seniors who fall should always have B12 deficiency ruled out with methylmalonic acid testing. B12 deficiency can cause gait and balance problems, tremor, orthostatic hypotension, parasthesias, confusion, dementia--- which makes a patient high risk for falling----- yet there is no standard of care to check seniors for B12 deficiency when they present with a fall. This is currently a project I am working on. I have seen many patients who have fractured their hip or femur--- who proved to have true B12 deficiency. We are wasting billions of dollars and more importantly affecting millions of lives being ignorant regarding this disorder.
Recent article I wrote for "Nursing 2007" January issue regarding B12 deficiency and the elderly. In addition, anyone with beginning dementia or with a diagnosis of dementia needs proper screening to rule out B12 deficiency. There is a critical window of opportunity to treat B12 deficiency or permanent injury will result.

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  • I am looking for any advice or people with similar symptoms. I am 32 years old. I began taking prenatal vitamins about 3 years ago as I was planning to get pregnant. I got pregnant very easily, miscarried, then got pregnant immediately again. At about 20 weeks into my pregnancy, I began to experience L'Hermitte's sign. I didn't know what it was, I just thought it was some pregnancy weirdness. I also began to have severe anxiety and nocturnal panic attacks. I gave birth 5 weeks premature, not sure why. I am still nursing, my daughter is now 20 months old. I still take my prenatal vitamins. When my daughter was one year old, I began to have the L'hermitte's sign again and I had numbness and weakness that travelled all over my body. I had no pain. I also had a tight band sensation around my bra-line. These symptoms lasted a few weeks, then all disappeared except a funny glove like sensation in my hands. I had an MRI, there was a lesion in the C4 area, no brain lesions. The neurologist said I have a 20% likelihood of an MS diagnosis. She wasn't worried about my B12 because it was in the 400's. I am wondering if the high amounts of folic acid in my prenatal vitamins could be masking a b12 deficiency. I also have a history of floating stools and bloating/gassy stomach. My mother and grandmother have thyroid disease and my grandfather just died from pancreatic cancer. The neurologist wants me to get another MRI in a few months to check on the possibility of MS. I don't want to waste my money on the MRI, I would rather explore other causes. But, I don't know if I should get a second opinion or just go with the doctor who isn't worried about B12. Some days the sensations in my hands are worse than others. Some days my face will feel tingly and my tongue will feel tingly, but not always. I never really had any fatigue or pain. Any suggestions will be greatly appreciated.
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  • Reply to Sally:- >>>>If you get a B12 injection it will bring down the MMA quickly----so having a MMA test after an injection is pointless and a waste of money.If your serum B12 was low---- then you need to take injections or high dose B12 lozenges. You don't necessarily have to have a + IF antibody to have pernicious anemia (could only have a parietal cell antibody) and elevated gastrin. >>> What you comment above that means if your serum B12 level is low than i need to take either injection or Lozenges . In my current test my b12 is above normal and MMA drop down as well that could be because of one B12 injection 18 hours prior to perform test . Which means that one injection dropped MMA level , so should i continue taking B12 injection the way you are directed in earlier responses . By the way i got Hydroxycobolomin injection yestarday after long run around from multiple vendors and pharmacies. Can it be possible the symptoms i have are due to Hyperthyroidism as my TSH dropped down to .002 in my last test , i initially Hypothyroidism due to autoimmune disorder but due to too much Levoxyl/Cytomel i became Hyper. The problem is your doctor didn't do the B12, MMA, and Hcy together. Then tested your MMA after an injection of B12. So, it will depend on your signs and symptoms--- after your thyroid med dose is corrected. People with hyperthyroidism (who have not been diagnosed or treated yet) can use up more B12 and can contribute to a B12 deficiency that is more than likely already starting --- but just with too much medication, it is not as likely. As you know, they will have to adjust your thyroid medication--- and taking too much thyroid medication and make you have tremors, weight loss, jittery feeling, anxiety, diarrhea, difficulty sleeping, heart palpatations etc. I would take the hydroxocobalamin injections--- and see how you do. It will not harm you, and you already have it. When you are done with the series--- you will get an injection a month, for insurance. You are at high risk for autoimmune pernicious anemia because you have an autoimmune thyroid disorder.You and your doctor will have to review your signs and symptoms and how you feel and determine if you need life long B12. This is a perfect example why doctors should not inadvertantly give out B12 shots before proper testing---- because then no one really knows---- was I really deficient, do I need this life long, etc.Your doctor should do a parietal cell antibody test, intrinsic factor antibody test and a serum gastrin---- this is for autoimmune PA--- which is important--- because you have an autoimmune disease. If any of the above come back + , you should take the B12 injections for life. Once you are on injections, the serum B12 and MMA will always be normal--- unless you stop for years--- and then retest yourself--- which is a gamble of possible neurologic injury, poor health, elevated homocysteine, etc.But, the antibody tests and gastrin will not go back to normal after treatment with B12.
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  • I have symptoms similar to those I have read in these threads. Here is a list of my symptoms; does anyone think they could be attributed to B12 deficiency? *Shooting, stabbing, burning pain in both legs, feet and toes ~ feels like the muscle and the bone*Pins and needles in legs, feet and toes (painful burning at times)*Pins and needles in arms, hands and fingers (painful burning at times)*Knee, ankle and toe bones feel like they are on fire*Wrist and finger joints feel like they are on fire*Extremely painful muscle spasms and cramps that will last for days in my calves, feet and in right bicep (leg spasms make it difficult or impossible toe walk)*flashing colored lights in peripheral vision of my left eye (they do not interfere with my eyesight, just annoying). So far, I have been diagnosed with depression, bipolar and anxiety. I did try paxil for a while but it did not help. The neurologist I went to said my flashing lights were migraines (no headache though) and prescribed depicote. I did not take it and do not plan to. I also had an MRI that did not show anything of particular concern. I have been shuffled from MD to MD and have just about had it. Any thoughts or suggestions out there? Thanks and God Bless!
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  • I have symptoms similar to those I have read in these threads. Here is a list of my symptoms; does anyone think they could be attributed to B12 deficiency? *Shooting, stabbing, burning pain in both legs, feet and toes ~ feels like the muscle and the bone*Pins and needles in legs, feet and toes (painful burning at times)*Pins and needles in arms, hands and fingers (painful burning at times)*Knee, ankle and toe bones feel like they are on fire*Wrist and finger joints feel like they are on fire*Extremely painful muscle spasms and cramps that will last for days in my calves, feet and in right bicep (leg spasms make it difficult or impossible toe walk)*flashing colored lights in peripheral vision of my left eye (they do not interfere with my eyesight, just annoying). So far, I have been diagnosed with depression, bipolar and anxiety. I did try paxil for a while but it did not help. The neurologist I went to said my flashing lights were migraines (no headache though) and prescribed depicote. I did not take it and do not plan to. I also had an MRI that did not show anything of particular concern. I have been shuffled from MD to MD and have just about had it. Any thoughts or suggestions out there? Thanks and God Bless! Your signs and symptoms sound like B12 deficiency but could also be the beginning of MS. You absolutely have to have B12 deficiency ruled out by having any doctor order the following: serum B12, MMA, homocysteine, B12 binding. Get these tests done before taking high dose B12 supplements. Don't let a doctor give you 1 shot to see if it helps---- and never do the tests. Tests have to be done before shots and high-dose oral B12. It would be a good thing if it was B12 deficiency--- because there is a cure and a treatment. Your doctor also should rule out thyroid disorder. Sally
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  • This is a most interesting site about B-12. This entry may explain why my daughter's doctor found her B-12 test to be within normal range. She had been B-12 dependant for many years at that time. When she was nine years old in 1964 she showed signs of being disturbed. I gave her 25 mcg a day of Cobalamin Concentrate for two weeks and she became like her old self. When the store change brands she became disturbed again within two weeks. I checked the bottle, and found that the B-12 was 25 mcg of Cyanocobalamin. When we found a new source of Cobalamin Concentrate, she once again responed positively to it in two weeks.She may have taken a B-12 table prior to her visit to the doctor, which would explain why her deficency did not show up.She is still taking Cobalamin Concentrate and functions quite normally. I have sent her many bottles of it over the years when I found a new source which had the Cobamamin Concentrate in whatever mcg it contained.Dorothy Hi Dorothy, This is very interesting about your 9 year old daughter in 1964. I have never heard of Cobalamin Concentrate. Could you tell me what company you use to use (and does your daughter still take it)-- and what dose? You stated the 25mcg worked--- was this in a liquid form? Was the cobalamin concentrate methyl-, cyano-, adenosyl-, or hydroxo- B12--- or was it a combination of the different B12 forms? When you say she was "disturbed", could you describe her behavior? Was she diagnosed with a mental illness? Was she ever tested for B12 deficiency? Did you put her on this yourself--- or did her pediatrician recommend it? The reason I am asking--- is because autistic children could be viewed as "disturbed" and B12 deficiency and inborn errors MUST be ruled out in every "autistic" child. But the medical community--- is not up to date regarding this, hence most children are not tested--- and many could be helped and are not--- but left in their own worlds. This is another error the medical and health care community is making--- the connection between autism and vitamin B12. In our book, we expose how many children diagnosed with autism---may have a B12 deficiency or inborn error of B12 metabolism--- and every child diagnosed with autism, PDD, or Asperger's must have proper testing (MMA, homocysteine, B12, B12-binding) before B12 given, and then a trial of high dose B12 should be given. As you are probably aware B12 deficiency causes numerous mental signs and symptoms which has been well-documented in the medical literature for over a century. (confusion, irritability, depression, psychosis, dementia, poor-memory, foggy thinking, anxiety, suicidal ideations, etc.). What clinicians are failing to realize--- is that B12 causes brain atrophy, can cause dementia and poor memory--in adults we call this dementia. In infants and children, it has been documented that developmental delay, speech problems, learning difficulties, low IQ, mental retardation and even death can result from an untreated B12 deficiency. We don't call geriatrics "autistic" and we don't label children as "demented or senile"--- but classify them somewhere on the PDD scale (mild to severe). I have seen children diagnosed with autism that really had a B12 deficiency---proven with tests--- and excelled once B12 therapy started. Other clinicians and physicians have documented this. Therefore, it would stand to reason that every child diagnosed with autism--- must be screened and a therapeutic trial of B12 started. But this is NOT happening. It is absurd! Recently the governement was given large sums of money to research in finding a cause--- yet no one is broadcasting the connection of the role B12 plays. 60 minutes, The View, Oprah, NBC & ABC Evening News all had specials on autism--- and not once was B12's role mentioned! All parents have a right to know this information. Most people don't know our book reveals this--- and there is a chapter regarding children and B12 deficiency, and autism. What I am trying to point out to the readers--- is that in 1964 your daughter was "disturbed" and responded well to vitamin B12. Please people reading this--- if your child has been diagnosed with autism--- or is having symptoms of autism, language delay, speech problems, seeming like they are in their own world, socialization problems---- you must have your child tested first. Even if the child comes back negative--- a trial of B12 is recommended. The reason the child needs to be tested is because it will dictate the child's treatment, will give an explanation for the developmental delay, and it will help other children and set a protocol to help others. (it may show the children who come back + for B12 deficiency, respond better than the children who do not). In one study, 20% of children tested for B12 deficiency (who had "autism")-- had an elevated MMA-----which clearly means they had a functional B12 deficiency causing their behavior. Another 5% had an elevated homocysteine. This is significant. I have personally seen a 4 1/2 year old boy respond from vitamin B12 injections. There are many reasons children can be B12 deficient, and this needs to be discussed in front of a national audience. It is very interesting---- that the University of California Davis--- is doing a study on children diagnosed with autism between the ages of 3 and 8--- and are giving methyl-B12 injections, it started in 2005. This is the same institution that when my book was sent from Vanderbilt University for review by medical review (for they were also interested in publishing our book), laughed at the autism connection--- and thought it was absurd. Not so absurd is it-- or they would not be studying it now! I would not budge on autism, Alzheimer's, or MS (sometimes misdiagnosed-- where the patient really has a B12 deficiency or an inborn error of B12 metabolism)---therefore I chose a different publisher (Quill Driver Books). Numerous children have been helped. What we don't know, is if transdermal patches could be used verses injections, and if high-dose chewable or B12 lozenges could be used---- and what the best form would be. Others report only methyl-cobalamin can be used. But the boy I witnessed come out of his fog-- and autistic behavior was on hydroxocobalamin injections. A year after our book came out, a nurse from Wisconsin reported her 7 year old son (whose doctors, social workers, trainers---advised her to institutionalize him) for he would severely injure himself or others---- dramatically changed after the mom gave cyanocobalamin chewable 3,000 mcg three times a day-- took about 2 weeks. Unfortuantely she did not test the child before doing this---- which would really help researchers and others. Other researchers state that only the methyl-B12 can be used. Obviously this is not the case. This role B12 plays in helping autistic children must be discussed and documented--- to help society as a whole. It is the only responsible thing to do---- what good is all this information tucked away in our book? There is a critical window of opportunity to treat B12 deficiency in children or adults or permanent injury will result. Sally
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  • I wrote back to you already--- somewhere else it will show up---but I forgot your other question, yes it is good to take a good B50 complex---all the B vitamin work well together--- the only problem is 50mcg of B12 in this supplement is not enough for a person with a B12 deficiency--- so they will have to take separate B12 lozenges at a high dose and/or get injections. They do make supplements that have a mixture of B12, folic acid, and B6--- one that is by prescription is called Metanx--- and it is the one that has 2,000mcg of methyl-B12, 2.2mg of folic acid, and 25mg of B6. So whoever has good prescription insurance or a decent co-pay, this may be more cost effective, plus it has the methyl-B12. But other companies are also reputable, Life Extension, Jarrow, etc. SallyThanks so much for the info. I’m not sure what I should do in terms of taking B12. I saw my doctor today and got a copy of my blood tests. The first blood test for B12 was 287 and the reference interval was 211-911. The last blood test she did had a homocysteine result of 5.4 with a reference range of 5.0 – 12.0. (That’s good, right?) The IF test came back negative. Also, that last blood test included a serum methylmalonic acid test that came out at 302 with a reference range of 73-376. That lab result had a note saying “The reference range for methylmalonic acid had been set at +3sd above the mean for healthy blood bank donors. In the clinical assessment of patients with megaloblastic anemias a cutoff of +3 sd provides greater specificity in the diagnosis of the vitamin deficiency states, despite the sacrifice of some sensitivity.” I have no idea what that means. In any event, today the doctor was insistent that my B12 was normal and that I do not need any B12 shots or pills, though I can take vitamin B12 pills if I want since they won’t hurt me. (There’s no way she’s going to give me a urinary MMA test.) Should I just take a regular pill or take the sublingual? And how much per day? BTW, I’ve found some sublingual methylcobalamin with folic acid and B6 that does not require a prescription. Maybe others reading this can comment if they’ve used any of these or at least I’ll save them a google if they’re looking for some themselves. :) This is what I found:http://store.ourhealthcoop.com/ProductDetails.asp?ProductCode=FA&Show=TechSpecshttp://www.wonderlabs.com/itemleft.php?itemnum=3292&kbid=1610http://www.vitacost.com/CountryLifeBiochemSuperiorB12http://www.evitamins.com/product.asp?pid=6202I just don’t know if all the amounts are safe in isolation or in combination. Is that too much B6 or folic acid? Which is the best combination? BTW, my doctor says she thinks my symptoms are caused by anxiety and that everyone seems to think that they have celiac disease these days. (She didn’t mention MS at all.) She placated me by agreeing to test for celiac, but when I looked at the form at home I saw that it only had anti-gliadin Abj and anti-endomysial Abj. You had suggested four different tests. Is what she wrote for me good enough? I’m planning on going to the lab to give the blood sample tomorrow, but do you think I should wait until I go to the allergist next week and try to get him to give me a blood test for all four of these tests? This whole thing is just very confusing. When I first called my doctor five months ago, I wasn’t feeling anxious, but after dealing with her, now I am! LOL. Can anxiety really explain all these symptoms? Even pins and needles in the feet and legs, thirst, and stiff and painful knees? The doctor wants me to come back again in a month to talk to me about treatment for anxiety. You’re a saint for responding to so many posts. It’s obvious from the number of views for this thread that lots of people need this information, so thank you so much for helping. You’re a wonderful contrast to my doctor, who seems to think that patients don’t need any information and have nothing of use to add. Your patients are very lucky.
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  • Thanks so much for the info. I’m not sure what I should do in terms of taking B12. I saw my doctor today and got a copy of my blood tests. The first blood test for B12 was 287 and the reference interval was 211-911. The last blood test she did had a homocysteine result of 5.4 with a reference range of 5.0 – 12.0. (That’s good, right?) The IF test came back negative. Also, that last blood test included a serum methylmalonic acid test that came out at 302 with a reference range of 73-376. That lab result had a note saying “The reference range for methylmalonic acid had been set at +3sd above the mean for healthy blood bank donors. In the clinical assessment of patients with megaloblastic anemias a cutoff of +3 sd provides greater specificity in the diagnosis of the vitamin deficiency states, despite the sacrifice of some sensitivity.” I have no idea what that means. In any event, today the doctor was insistent that my B12 was normal and that I do not need any B12 shots or pills, though I can take vitamin B12 pills if I want since they won’t hurt me. (There’s no way she’s going to give me a urinary MMA test.) Should I just take a regular pill or take the sublingual? And how much per day? BTW, I’ve found some sublingual methylcobalamin with folic acid and B6 that does not require a prescription. Maybe others reading this can comment if they’ve used any of these or at least I’ll save them a google if they’re looking for some themselves. :) This is what I found: http://store.ourhealthcoop.com/ProductDetails.asp?ProductCode=FA&Show=TechSpecs http://www.wonderlabs.com/itemleft.php?itemnum=3292&kbid=1610 http://www.vitacost.com/CountryLifeBiochemSuperiorB12 http://www.evitamins.com/product.asp?pid=6202 I just don’t know if all the amounts are safe in isolation or in combination. Is that too much B6 or folic acid? Which is the best combination? BTW, my doctor says she thinks my symptoms are caused by anxiety and that everyone seems to think that they have celiac disease these days. (She didn’t mention MS at all.) She placated me by agreeing to test for celiac, but when I looked at the form at home I saw that it only had anti-gliadin Abj and anti-endomysial Abj. You had suggested four different tests. Is what she wrote for me good enough? I’m planning on going to the lab to give the blood sample tomorrow, but do you think I should wait until I go to the allergist next week and try to get him to give me a blood test for all four of these tests? This whole thing is just very confusing. When I first called my doctor five months ago, I wasn’t feeling anxious, but after dealing with her, now I am! LOL. Can anxiety really explain all these symptoms? Even pins and needles in the feet and legs, thirst, and stiff and painful knees? The doctor wants me to come back again in a month to talk to me about treatment for anxiety. You’re a saint for responding to so many posts. It’s obvious from the number of views for this thread that lots of people need this information, so thank you so much for helping. You’re a wonderful contrast to my doctor, who seems to think that patients don’t need any information and have nothing of use to add. Your patients are very lucky. It is most unfortunate that your doctor is making you feel this way--and adding to your anxiety. A serum B12 of 286 is in the lower range (it is below 350), the MMA of 302--- is above 271--- and some hematololgists give this advice to the elderly: If the B12 is It would make more sense for you to be given a trial of B12 verses any doctor thinking assuming your symptoms are psychiatric in nature--- and starting you on psych drugs or anti-anxiety drugs. You deserve a trial of B12 because of your above results and your symptoms. You don't really want to take any more than 50 mg of vitamin B6, and folic acid you should be taking 800mcg daily for health---but food is fortified with folic acid now--- and your homocysteiene reflected this (plus folic acid is easy to absorb from food, supplements). If you have Rx insurance--- Metanx would be good and may be cheaper than buying over-the counter. At least we know the manufacturer is putting 2,000 mcg in it.Since they won't give you a trial of shots---I would get methyl-cobalamain 5,000 mcg and take twice a day. You could buy a B50 complex (which gives you all the B vitamins) 50mcg of B12 (which won't do much) and 50mg of the other B vitamins--- it will give you 400mcg of folic acid.----Give it 4 weeks and see how you feel. If your doctor or some other doctor would give you a trial Rx of Metanx--- you could take one of these per day--- plus one 5,000 mcg lozenge of methyl-cobalamin. A gastroenterologist is one that would work you up for celiac disease, at least she is doing some preliminary tests. For some reason your B12 is starting to get low--- and reflected by the MMA. You can also prove you have a beginning deficiency-- by taking the B12 oral for 4 weeks--- and you should see the MMA # come down. Just because your IF antibody is negative doesn't mean that B12 deficiency cannot exist. Do not worry--- you will work around your doctor---take the B12 and see how you feel--- if your symptoms resolve in the following weeks--- this is good---- but then I would see a gastroenterololgist to see why you began to get a b12 deficiency (if you yourself can rule out that diet, eating disorder, nitrous oxide, PPI, etc.) did not play a role. Taking the oral route may take longer to respond--- so that is why you want to give it 4 weeks. If you still are having neruo symptoms after 4 weeks, then you should see a neurologist--- but give the B12 some time to work. If this fails--- then you could pursue if you need an anti-anxiety agent etc. Do not worry-- do one thing new at a time--- to see what works and what does not. Thanks for the websites--- this will help people---- the B6 in them is somewhat low. Keep us posted of your response! Sally
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  • It is most unfortunate that your doctor is making you feel this way--and adding to your anxiety. Yeah. I think I need to find another doctor. It's not just that she's so uncommunicative and lacking in much of a bedside manner. She doesn't seem to know much about B12. When I first told her that my father had a stroke and the doctors thought it was partly due to low vitamin B12, she told me that B12 has nothing to do with strokes. (She did eventually test me for homocysteine, though, so I think she might have figured out the connection at some point.) When she first told me my B12 was a little low, I asked her what foods had B12 in them and she said meat and bread. (Yes, bread.) I know from your book that this information is not the greatest, so I kind of question how good she is as a doctor. I don't eat much red meat (or bread for that matter, LOL), but I do eat plenty of chicken, seafood, dairy products, and eggs. So, it seems unlikely that diet explains my B12 levels. I don't have an eating disorder and haven't had nitrous oxide. Don't know what a PPI is. If you have Rx insurance--- Metanx would be good and may be cheaper than buying over-the counter. At least we know the manufacturer is putting 2,000 mcg in it. I'd need a prescription, though, and my doctor won't give it to me since she doesn't even think I need vitamin pills. So, I'm going to try finding something else that contains what you recommend.For some reason your B12 is starting to get low--- and reflected by the MMA. You can also prove you have a beginning deficiency-- by taking the B12 oral for 4 weeks--- and you should see the MMA # come down. The doctor won't order another MMA since she thinks my B12 levels already are perfectly normal. I'll just have to see how I feel after taking the B12. Thanks again for posting here. Also, thanks to both you and your co-author for the book. I thought that it might be a little difficult to understand because I have no science background, but I was pleasantly surprised to find that it's quite easy to follow. If anyone has a particular sublingual methylcobalamin product they've used and liked, please post. Thanks!
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  • I am a fatigued hypothyroid being treated with T4, who has B12 and ferritin concerns. After reading around trying to solve the long-standing mystery of my unrelenting fatigue, I saw that many hypos have anemia, deficiency or depletion concerns. I decided to start supplementing both b12 and iron. After a month of sublingual treatment (5000mcg/d sometimes 10,000), my serum b12 went from 414 (range 193-982) to 1875 (yes 1875) (range 243-894). I had a few years earlier been 287 (range 180-900) so I knew there was a problem here. My father, grandmother and sister all rec b-12 shots, but were/are diagnosed with anemia. I don't really feel much better, only as if I am tired and had too much coffee if anything - not a nice energy. I compare this to the few times in my past that I was given a b-12 shot by a dr upon request, but as a one time only deal..."You are not anemic, so you don't really need it..." On those occasions, I felt really well, with a strong sense of well-being. Of course, I thought I was imagining it, esp after all the looks of sceptisim from drs over the years given my hypo complaints. I wondered if it is really valid that a sublingual treatment, as I have been doing, is the same as IM injections? I have not had an MMA test as no one seems to offer it or even know what it is. I am wondering from your experience, if in some the seeming qualitative difference btwn IM and sublingual is real, and if so, do you think I should pursue the MMA (with my own money of course!). Incidentally, would my low ferritin 18 (range 9-120) be impeding any progress on the fatigue front? Also, of note, my folate was rather in the high range - ">15" (range 3-17) Finally, strangely, my MCV has always been the lowest in any range if not below sometimes, and I realize that typcially the MCV is high in pernicous anemia and low in iron deficiency anemia. Just another mystery I guess. Thanks;) You really should get the B12 shots. I myself have tried he methyl-B12 SL---- and really feel a difference in the shots verses the lozenges. Since your other family members have this condition--- you may too. Your MMA will be normal--- and no concern that the B12 is high in the blood--- the question is --- is it passing through the blood-brain barrier. Your ferritin of 18 is low--- which would make sense that your MCV is low--- which would indicate an iron deficiency. You may not have enough hydrochyloric acid which is making you low in B12 and iron. You should ask for a serum gastrin ---- which will be elevated if you have poor stomach acid. Yes, see what your serum iron is--- sounds like you need to start on iron (since your ferritin is 18 and your MCV is low), and switch to the B12 shots and see if you feel a difference. Ask for the hydroxocoblamin---- and learn how to self inject or a family member to learn--- and that way maybe your doctor will comply more--- if they don't want you coming in to the office--- taking time away from other patients. Iron deficiency will make you fatigued and sometimes real cold hands and feet. Make sure your thyroid levels are where they should be---- and see if any other autoimmune diseases are present (your doctor could test for). I think with all the B12 you have been taking--- the MMA will be normal, but the injections for some reason people feel a great difference (I do--- and if I felt the same with lozenges that I do with shots--- of course I would stick with the lozenges---- but I do not. You did have a low B12 long ago and have a thyroid disorder--- so you may have autoimmune pernicious anemia. You see, that is the problem--- we may make the blood look good on paper taking lozenges--- but what is the true clinical response and effect in people--- the injections are far more superb in many people. This is not to say that others will not do well on B12 lozenges--- it may depend on why they have a deficiency. And even though doctors may say it is the placebo effect---- they have no background or personal knowledge to make that assumption or comment. When you look at it --- wouldn't we rather have people taking B12 injections for chronic pain for neuropathy or depression--- than having them get addicted to narcotics for chronic pain, or even have a substance abuse problem--- let alone having them driving in society--- impaired--- causing additional problems--motor vehicle accidents. The medical community is so miserly when it comes to B12--- but no problems pushing anti-depressents, pain meds, anti-anxiety agents, expensive drugs for neurogenic pain. But when a patient asks for B12 or a trial--- like they are asking for them to brake the law or something---- it is absolutely backwards. (Let alone the medical community is not testing people properly when patients present with B12 deficiency signs and symptoms). Sally
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  • Sally,This is from the 40yr old RN who you've helped a few times. Brief recap: After years of gastric complaints and over the counter tagamet and prilosec use...Acute onset of tingling, tremors, buzzing, "weird gate", burning paresthesias that spread all over body in January. MRI's neg, Lumbar puncture neg...initial blood work was B-12 301, Ferritin 20, MCV 96 ...all "normal" according to Dr. Gave B-12 shot, started on Mentanex and Lyrica (for neuropathy) then 6 weeks later drew a homosystine and MMA...normal. (duh) After 5 weeks on Mentanex..symptoms have "stablized" some days minimal..some days bad, but more better days than bad. With a sock or a shoe on I feel like I walk normal, barefootedness feels weird still.Took your book with me to my visit on Thursday, and he agreed to do Antiparietal cell Antibody test and Intrisic factor antibody test after seeing newly aquired "white freckles" on my legs and arms. He gave me a perscription for Cyancobalmin 1000mg injections Sub-Q every two weeks in addition to the daily Mentanex I am taking.(Even though he is doubtful B-12 has anything to do with this!) Also agreed I should see gastrointerologist "just in case" because I am still complaining of gerd. (That is in two weeks). I am giving myself the injections every other day for the first week like you recommended and then will do once a week for a month etc. I feel pretty good after having two injections...hoping its more than placebo effect. A couple of questions:1.Why do you say IM instead of sub-Q? ( I did do it IM eventhough he said sub-Q)? 2. Would an MCV of 96 be significant given the B-12 of 301 and Ferritin of 20? 3. Do you recommend K replacement with so much B-12 or just add more into diet? Thank you for your input. I was blown away by your book and have talked it up to my coworkers at the hospital! Even if I do not have PA, I am convinced my B-12 level was too low for me and the fact that I have leveled off with symptoms and feel better since supplementing encourages me. I am embarrased that as an RN I didn't pay enough attention to the amounts of OTC acid reducers I was taking...I just figured it was stress, caffeine and working the over night shift. I am only 130 pounds and 5'6" never been overweight, never smoked, only drink the occasional alcoholic drink.....considered myself indistructable! Again, thank you for your time!Angela Hi Angela, I'm glad you are feeling better! No, the injections are not a placebo effect, you needed the B12! I state in the book intramuscular (IM) verses subcutaneous because that is what the manufacturer of the B12 states how to give it (unless they have recently changed it on the package insert--- but I doubt it). The hydroxocobalamin package insert from the pharmaceutical company also states to give it IM. People who are obese, as you know being a R.N.-- we try to give it IM-- but it obviously sometimes goes in the SQ tissue. It won't hurt you if it goes in SQ and won't injure the tissue--- but (it won't leak out--sometimes SQ injections can ooze out a little--- but basically relaying what the manufacturer reccommends. Being on PPI for as long as you have been--- can explain your B12 deficiency--- you don't necessarily have to have pernicious anemia. B12 deficiency (from whatever cause) can cause the same damage to the body if untreated. A big mistake physicians make is this --- when the patient doesn't have a parietal cell antibody or intrinsic factor antibody they conclude --- you don't have PA--- and take away the B12 shots--- which is silly-- because there are many other reasons for B12 deficiency. B12 deficiency (whatever the cause) if untreated---is just as injurous or deadly as B12 deficiency from PA. I really don't understand why many doctors conclude this--- but I have had numerous patients report that their doctor tested for these antibodies and the B12 was taken away. Last week, I had another case of chronic misdiagnosed B12 deficiency. A 66 year old man who had 8 visits to the ER in 4 months with 4 admissions and numerous outpatient blood work done---- he was seen by a gastroenterologist, psychiatrist, internist, family doctor, surgeon, ER doctor and all failed to diagnosis his blatent B12 deficiency. This man is from India, (living in the U.S. for decades) has been a vegetarian for 30 years, and for 8 years has had no chicken, fish, or red meat. He stopped eating chicken 8 years ago because he was having such stomach problems that the meat would just sit in his stomach and he couldn't digest it--- so his diet consisted mostly of pureed beans and pita bread. He was a very good historian, and readily admitted he was depressed-- yet had intense anxiety, was paranoid, and kept stating his "head was not right". He had paresthesias and severe leg pains. He used a single prong cane to walk, had balance problems-- and stated had near falls for the last month--but furniture would catch his fall. He wore gloves while in the ER because his felt numbness to his fingers and felt they were cold--- yet they were warm. July of 2006 he suffered a PE and was placed on Coumadin (chronic B12 deficiency causes hyperhomocystinemia--- which causes blood clots). (this is what the woman in chapter 1 who won the 3.1 million dollar malpractice--- how they finally figured out her B12 deficiency when she had a PE). He also was having severe upper abdominal pain--- and had a pallor to his Indian skin. He was also on a PPI. Anyway, I pleaded with the ER physician to test him and he was indeed B12 deficient with an elevated MMA. Surprise, surprise. It is really unbelievable that this man couldn't have been diagnosed by the numerous doctors and other health care professionals he encountered---until he was seen by an ER nurse---- totally absurd--but very telling on what an epidemic we really have on our hands. I gave this example because this man had a severe B12 deficiency because of his diet--- but it is just as injurous or deadly. (he also really needs his stomach scoped EGD because of some other symptoms he was having-- yet they did a colonoscopy--- months ago-- but never an EGD. Anyway, his signs and symptoms were textbook for B12 deficiency--- and him being a vegan---- placed him at high risk. If it is hard for the medical community to diagnose easy classic text-book cases--- can you imagine what is happening to the rest of society? They even placed him on a PPI!I think they didn't contemplate B12 deficiency because he was not anemic or macrocytic--- which is a big mistake. I believe you will do better on the B12 injections--- and hopefully all your neuro signs and symptoms will reverse. Glad you liked the book--- please write a review on Amazon.com---- it will help others. Sally
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  • Hi Angela, I'm glad you are feeling better! No, the injections are not a placebo effect, you needed the B12! I state in the book intramuscular (IM) verses subcutaneous because that is what the manufacturer of the B12 states how to give it (unless they have recently changed it on the package insert--- but I doubt it). The hydroxocobalamin package insert from the pharmaceutical company also states to give it IM. People who are obese, as you know being a R.N.-- we try to give it IM-- but it obviously sometimes goes in the SQ tissue. It won't hurt you if it goes in SQ and won't injure the tissue--- but (it won't leak out--sometimes SQ injections can ooze out a little--- but basically relaying what the manufacturer reccommends. Being on PPI for as long as you have been--- can explain your B12 deficiency--- you don't necessarily have to have pernicious anemia. B12 deficiency (from whatever cause) can cause the same damage to the body if untreated. A big mistake physicians make is this --- when the patient doesn't have a parietal cell antibody or intrinsic factor antibody they conclude --- you don't have PA--- and take away the B12 shots--- which is silly-- because there are many other reasons for B12 deficiency. B12 deficiency (whatever the cause) if untreated---is just as injurous or deadly as B12 deficiency from PA. I really don't understand why many doctors conclude this--- but I have had numerous patients report that their doctor tested for these antibodies and the B12 was taken away. Last week, I had another case of chronic misdiagnosed B12 deficiency. A 66 year old man who had 8 visits to the ER in 4 months with 4 admissions and numerous outpatient blood work done---- he was seen by a gastroenterologist, psychiatrist, internist, family doctor, surgeon, ER doctor and all failed to diagnosis his blatent B12 deficiency. This man is from India, (living in the U.S. for decades) has been a vegetarian for 30 years, and for 8 years has had no chicken, fish, or red meat. He stopped eating chicken 8 years ago because he was having such stomach problems that the meat would just sit in his stomach and he couldn't digest it--- so his diet consisted mostly of pureed beans and pita bread. He was a very good historian, and readily admitted he was depressed-- yet had intense anxiety, was paranoid, and kept stating his "head was not right". He had paresthesias and severe leg pains. He used a single prong cane to walk, had balance problems-- and stated had near falls for the last month--but furniture would catch his fall. He wore gloves while in the ER because his felt numbness to his fingers and felt they were cold--- yet they were warm. July of 2006 he suffered a PE and was placed on Coumadin (chronic B12 deficiency causes hyperhomocystinemia--- which causes blood clots). (this is what the woman in chapter 1 who won the 3.1 million dollar malpractice--- how they finally figured out her B12 deficiency when she had a PE). He also was having severe upper abdominal pain--- and had a pallor to his Indian skin. He was also on a PPI. Anyway, I pleaded with the ER physician to test him and he was indeed B12 deficient with an elevated MMA. Surprise, surprise. It is really unbelievable that this man couldn't have been diagnosed by the numerous doctors and other health care professionals he encountered---until he was seen by an ER nurse---- totally absurd--but very telling on what an epidemic we really have on our hands. I gave this example because this man had a severe B12 deficiency because of his diet--- but it is just as injurous or deadly. (he also really needs his stomach scoped EGD because of some other symptoms he was having-- yet they did a colonoscopy--- months ago-- but never an EGD. Anyway, his signs and symptoms were textbook for B12 deficiency--- and him being a vegan---- placed him at high risk. If it is hard for the medical community to diagnose easy classic text-book cases--- can you imagine what is happening to the rest of society? They even placed him on a PPI!I think they didn't contemplate B12 deficiency because he was not anemic or macrocytic--- which is a big mistake. I believe you will do better on the B12 injections--- and hopefully all your neuro signs and symptoms will reverse. Glad you liked the book--- please write a review on Amazon.com---- it will help others. Sally Forgot you last question. No you don't need potassium supplementation---- that is for people who are severely anemic (requiring blood) --- because of the severe B12 deficiency--- that they need to monitor their potassium levels. Sally
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  • Hi there. I am wondering if I have a B12 deficiency. In January I started having migrating numbness in my hands and toes while I was sleeping. It wakes me up at night when a hand or several toes go numb. Also, I began having tingling in my fingertips during the day, and extreme cold sensitivity all over, but particularly the hands, that I have never experienced. I am a 41 year old extremely healthy distance runner with a questionable wheat or gluten allergy/intolerance. I have been avoiding gluten products for more than a year, with much improvement of my GI symptoms. I also battled with anorexia and bulimia in high school, but that has been resolved for a very long time. My diet is very healthy with a lot of fresh foods, and I am a very healthy weight.My PCP told me that the numbness was from anxiety, but that is ridiculous because I am certainly not anxious while I am asleep! Also, any anxiety I do have is directly related to concerns about these recent physiologic changes, and lack of a corresponding diagnosis. They did work me up with sed rate, c-reactive protein, ANA test, and of course a CBC and BMP. Everything looked normal. A neuorosurgeon at work told me he thought I had the beginnings of peripheral neuropathy (but there is no underlying reason I would have it) and suggested I start on high dose B vitamins. This has reduced my numb occurrences to occasional from being a nightly one. My tingling, while still there, is reduced most days. I am taking B1, B2, B6, B12 (large doses) and folate 800 mcg. At my insistence, the PCP sent me to a neurologist. He did a nerve conduction test of my hands and forearms to rule out carpal tunnel and polyneuropathy. These came back normal. He drew a cmp (normal), and a serum B12 and folate and MMA test. The only thing on out of the normal range was the serum MMA. I had eaten breakfast, though, so I'm not sure the result is even accurate. My MMA level was high at 440, with the normal high end of the test range being set at 375. My B12 level was 495, but this is while I had recently been taking B12 (but not as high a dose as I am on now---I now take 5000 mcg sublingual every day).The neurologist told me that my symptoms are too vague to diagnose, and to "just keep taking B12 since your MMA was high and your B12 wasn't all that high", and to come back if I get more severe symptoms.Does this sound to anyone like a b12 Deficiency?Thanks so much for your help and consideration.
    itsmarianne 3 Replies Flag this Response
  • Everyone is different, but injections should release slower than the sublingual form. The only way to find out is to try it. Is the B12 helping your "brain fog". Your doctor needs to work you up for other disorders/disease processes. But a B12 of 200 is low. Your doctor also needs to find out why your B12 is low (diet, celiac disease, other malabsorption problem, H.Pylori, drugs (proton pump inhibitors, nitrous oxide, etc.) I would absolutely try the B12 injections--- I know when I get my injection--- it is the next day where I feel the best, not the day of. SallyThanks so much for your thoughtful response. I haven't given the sublingual B12 a fair trial because of the intense anxiety I experience when I take it. I am going to ask the doctor if I can do daily self-injections and see how that goes (maybe a little smaller dose). I haven't had any nitrous or PPIs... I am guessing that I don't have a malabsorption problem since other nutrients have checked out okay. I don't have typical celiac symptoms. I was vegan for three years and have reverted to being vegetarian for the last six months so I am sure that's at least part of the source of the deficiency. In the last week I've started to eat seafood including shrimp almost daily so hopefully this well help my B12 status a little. I wonder if my case will be easier to treat since it may be solely nutritional?? I'll check back in and post any new labs I get as well as a report on how the injections go. Thanks again, Mike
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  • Hi there. I am wondering if I have a B12 deficiency. In January I started having migrating numbness in my hands and toes while I was sleeping. It wakes me up at night when a hand or several toes go numb. Also, I began having tingling in my fingertips during the day, and extreme cold sensitivity all over, but particularly the hands, that I have never experienced. I am a 41 year old extremely healthy distance runner with a questionable wheat or gluten allergy/intolerance. I have been avoiding gluten products for more than a year, with much improvement of my GI symptoms. I also battled with anorexia and bulimia in high school, but that has been resolved for a very long time. My diet is very healthy with a lot of fresh foods, and I am a very healthy weight.My PCP told me that the numbness was from anxiety, but that is ridiculous because I am certainly not anxious while I am asleep! Also, any anxiety I do have is directly related to concerns about these recent physiologic changes, and lack of a corresponding diagnosis. They did work me up with sed rate, c-reactive protein, ANA test, and of course a CBC and BMP. Everything looked normal. A neuorosurgeon at work told me he thought I had the beginnings of peripheral neuropathy (but there is no underlying reason I would have it) and suggested I start on high dose B vitamins. This has reduced my numb occurrences to occasional from being a nightly one. My tingling, while still there, is reduced most days. I am taking B1, B2, B6, B12 (large doses) and folate 800 mcg. At my insistence, the PCP sent me to a neurologist. He did a nerve conduction test of my hands and forearms to rule out carpal tunnel and polyneuropathy. These came back normal. He drew a cmp (normal), and a serum B12 and folate and MMA test. The only thing on out of the normal range was the serum MMA. I had eaten breakfast, though, so I'm not sure the result is even accurate. My MMA level was high at 440, with the normal high end of the test range being set at 375. My B12 level was 495, but this is while I had recently been taking B12 (but not as high a dose as I am on now---I now take 5000 mcg sublingual every day).The neurologist told me that my symptoms are too vague to diagnose, and to "just keep taking B12 since your MMA was high and your B12 wasn't all that high", and to come back if I get more severe symptoms.Does this sound to anyone like a b12 Deficiency?Thanks so much for your help and consideration.YES, YOU HAVE A DOCUMENTED B12 DEFICIENCY! I CAN'T BELIEVE YOUR DOCTORS ARE BEING VAGUE--- AND GIVING YOU THE RUN AROUND!1. You have symptoms of B12 deficiency---paresthesias (numbness and tingling)--- even a neurologist told you it sounded like peripheral neurpathy--- yes he was correct--IT'S FROM B12 DEFICIENCY2. Your risk factor for B12 deficiency and/or causes: History of anorexia/bulemia---- and gluten intolerance (which causes B12 deficiency from a malabsoprtion syndrome)3. What is wrong with your doctors? They test you for MMA and B12 ---after they place you on B vitamins--- this will alter the tests ---- and make it harder to get a diagnosis.4. You are on the High dose B vitamins---- and your symptoms improve--- which again supports B12 deficiency.5. When you report that you improve---- they then think--- well maybe it is B12 deficiency--- and not all in your head--- accusing you of being a psych patient--- or have anxiety---- and then they decide to test you (which they should of tested you INITIALLY BEFORE GIVING B12 SUPPLEMENTS!)6. You were really deficient---- because despite the oral B vitamins and B12--- your MMA still came back positive! Which again proves you had a B12 deficiency. I have seen the results of 100's of MMA results--- and trust me---fasting does not alter the test. YOU HAD A SIGNIFICANT B12 DEFICIENCY.7. Then to add insult to injury--- they have the nerve to tell you that "your symptoms are too vague to diagnose" and that "your MMA was not that high".Your doctor has a major knowledge deficit ---- or he is covering his tracks.8. Your serum B12 is higher now because you have been on oral B vitamins which contain vitamin B12. The serum B12 test vitamins it picks up the analogues reporting out a higher value-- it is not reflecting what is in your tissues. 9. You need to get a series of injections --- your MMA is still high--- and if you still have any neuro symptoms or neuropathy (paresthesias) you must demand them--- they will work faster than your pills.10. You need to read our book--- so you will be able to understand B12 deficiency and be an advocate for yourself.11. All the money your doctors spent with your insurance companies and co-pays (you had to pay) and seeing different specialists for tests that you really didn't need--- that were very expensive---when all you had was a simple B12 deficiency. You need the shots to try to reverse any damage--- you DO NOT want permanent neruopathy. Keep taking your 5,000 mcg B12 daily--- and get the series of shots--- take the lozenges in-between injections.You are a perfect example how patients get mismanaged and misdiagnosed--- and it takes numerous doctors to make a simple diagnosis--- they start treatment which is way underdosed-- and also will alter lab tests-----and then they decide to test you (which I am proud the neurologist decided to test you) but then he/she downplayed your obvious deficiency---that is even documented with the MMA test! He/she stated your symptoms are vague (?), hardly. What part of paresthesias/neuropathy don't they understand?Sally
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  • Sally--I am 32 years old. I had L'Hermittes sign during my first pregnancy, less than 2 years ago. I didn't know what it was. It went away, then came back just after my daughter's first birthday. I had other traveling numbness/tingling symptoms in my legs, and a tight band sensation around my bra-line. My MRI showed no brain lesions, but one spinal cord lesion at the C4 level. My B12 was in the 400's. However, I take a prenatal vitamin with 1 mg folate. Do you think this could be masking a deficiency? My current symptoms include anxiety, some hand tingling, and a funny itchy/tingly sensation on my tongue. The doctor wants another MRI this month since it has been 6 months. I don't want to spend the money if they could try a blood test first. Any advice is greatly appreciated. Jessi
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  • Sally--I am 32 years old. I had L'Hermittes sign during my first pregnancy, less than 2 years ago. I didn't know what it was. It went away, then came back just after my daughter's first birthday. I had other traveling numbness/tingling symptoms in my legs, and a tight band sensation around my bra-line. My MRI showed no brain lesions, but one spinal cord lesion at the C4 level. My B12 was in the 400's. However, I take a prenatal vitamin with 1 mg folate. Do you think this could be masking a deficiency? My current symptoms include anxiety, some hand tingling, and a funny itchy/tingly sensation on my tongue. The doctor wants another MRI this month since it has been 6 months. I don't want to spend the money if they could try a blood test first. Any advice is greatly appreciated. JessiHi Jessi,Yes, the 1mg of folate can mask a B12 deficiency--- and the amount of B12 in prenatal vitamins is not enough to correct a deficiency--- yet because you are taking the prental vitamin that has some B12 in it--- it can make your serum B12 report out higher (in the 400's). You have to insist on a methylmalonic acid test. Do not take any high dose B12 or any other form of B12 until you get this test. After they draw your blood or take your urine (which you could do either MMA test)--- insist on B12 injections as a therapeutic trial. Many documented cases of true B12 deficiency have seen lesions in the C-spine with MRI. I would get the series of B12 injections (1 every day or every other day x 7, then once a week x 2 months) and see how you are doing. The days you are not taking the injections--- I would have your doctor prescribe Metanx (which has methyl-B12, folic acid, and B6)----to substitue your prenatal vitamins (if you are not pregnant at this time).If you prove to be B12 deficient--- by blood work--- or by resolution of symptoms with therapeutic trial--- then your doctor needs to find out why you were B12 deficient. (ie. autoimmune pernicious anemia, celiac disease, vegan, etc.)If your children show any signs of developmental delay or poor head size growth--- they need to be tested.Do not let your doctor just give you the Metanx and not the injections. State that you will be willing to learn to do it yourself or family member (that way they may be more cooperative--- for they do not want you to keep coming to their office, etc.--- and fear of insurance company reimbursing them).In addition, you need to allow them to rule out other disorders--- but you need to do what I describe above.Sally
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  • Sally,I hope I am posting this right, i am having trouble with it, Please help me!!!I have had my CT Scans and MRIs of brain and spine and everything has come back normal. However, my blood showed that I had a very low B12 count, it was a 73, I also had low magnesium, which was low on a normal level. I have been having really bad 'headaches' if you want to call them as my main symptom, they are headaches, and also sometimes feel burning and tingling, I have almost little or no other tingling anywhere else. I have had anxiety and been feeling really sad lately. My MD told me i was depressed and gave me effexor, which i refused to take. I have read that B12 symptoms can cause depression. I do not feel depressed about life per se, just about my condition, my headaches are not as bad as they used to be, however, they used to be incredibly debilitating. I also have had trouble sleeping, chest pains, and abdominal pains (very slight). Also, lately my blood pressure has been really high, which has not usually been a problem for me. Everything was tested, my heart, blood, etc, and it was concluded nothing serious was wrong. I DO have acid reflux, but have only been on the meds this time for about 1 month, and 3 years ago for about 1 month (protonix). I have had B12 injections of 1000mcg each for a total of about 13 injections over the past 4 weeks. My headaches got worse and now are slightly better, but are not gone. Do you think the B12 is the cause? What else could it be? Any thoughts or advice would be greatly appreciated, as I have been battling this for over 5 months now. I have seen MD after MD and everyone thinks that I am crazy or depressed! PS-I have an appt. with a GI for an EGD on May 15th. Also, I bought your book and cant wait to read it (I also have an autistic brother). I cant wait to hear your suggestions. Thank you so much. Katie
    Katie0414 9 Replies Flag this Response
  • Sally,I hope I am posting this right, i am having trouble with it, Please help me!!!I have had my CT Scans and MRIs of brain and spine and everything has come back normal. However, my blood showed that I had a very low B12 count, it was a 73, I also had low magnesium, which was low on a normal level. I have been having really bad 'headaches' if you want to call them as my main symptom, they are headaches, and also sometimes feel burning and tingling, I have almost little or no other tingling anywhere else. I have had anxiety and been feeling really sad lately. My MD told me i was depressed and gave me effexor, which i refused to take. I have read that B12 symptoms can cause depression. I do not feel depressed about life per se, just about my condition, my headaches are not as bad as they used to be, however, they used to be incredibly debilitating. I also have had trouble sleeping, chest pains, and abdominal pains (very slight). Also, lately my blood pressure has been really high, which has not usually been a problem for me. Everything was tested, my heart, blood, etc, and it was concluded nothing serious was wrong. I DO have acid reflux, but have only been on the meds this time for about 1 month, and 3 years ago for about 1 month (protonix). I have had B12 injections of 1000mcg each for a total of about 13 injections over the past 4 weeks. My headaches got worse and now are slightly better, but are not gone. Do you think the B12 is the cause? What else could it be? Any thoughts or advice would be greatly appreciated, as I have been battling this for over 5 months now. I have seen MD after MD and everyone thinks that I am crazy or depressed! PS-I have an appt. with a GI for an EGD on May 15th. Also, I bought your book and cant wait to read it (I also have an autistic brother). I cant wait to hear your suggestions. Thank you so much.Katie Hi Katie, A serum B12 of 73 is extremely low. Yes, B12 deficiency causes "burning" feeling of the feet, hand, numbness and tingling (which can be intermittent or constant), depression, anxiety, gastric reflux, chest pain, visual disturbances, headaches--- and a host of other problems. For your B12 level to be this low---you were B12 deficient for some time (at least a year or or two)---people with serum B12's in the 200 and low 300's have symptoms.I would keep getting the injections--- and ask your doctor to give you a prescription for Metanx (which contains 2mg of methylcobalamin, folic acid 2.2 mg, and vitamin B6 25mg) and take these in-between injections.Make sure your injections are 1,000 mcg each verses 100mcg. Did you doctor also do the following tests when he found your B12 level low--- methylmalonic acid, homocysteine? They are too late to do once the B12 injections were given. The following tests should also be done now--- and the B12 injections will not affect the results: serum gastrin, parietal cell antibody, intrinsic factor antibody, ferritin. When you have your EGD on the 15th---they will more than likely taking a biopsy of your stomach---they will be able to tell if you have chronic atrophic gastritis. They should be checking for H.pylori, and while they are down there they should take a biopsy of the small intestine to see if you have celiac disease (gluten enteropathy)--- which can cause B12 deficiency over time. Also, since your will be fasting for the EGD--- they need to check the pH of your stomach---- in perncious anemia--people don't have stomach acid and the pH will be elevated above 6. This is important for them to do---because when people have no stomach acid or poor stomach acid they get gastric stasis (which it is hard and takes longer for the food to digest and pass out of the stomach)-- so people get gastric reflux-- and many times they get changes of distal esophagus and the doctor assumes this is from acid splashing back into the esophagus (acid reflux)---- but they need to know if it is acidic or alkaline--- because without testing the pH--- they assume it is acidic and end up placing you on a proton-pump inhibitor (which what this drug does is stop your stomach's cells from producing hydrochloric acid--- which is silly to do--- because if you don't have any stomach acid to begin with--- it is a waste of money--- and you are blocking any acid that you have to begin with. So insist they check the pH--- you may end up teaching your gastroenterologist something. You will enjoy the book and it will answer many of your questions. Regarding your brother with autism--- he must have a methylmalonic acid, homocysteine and serum B12 test---BEFORE ANY B12 IS GIVEN TO HIM. Please get him tested. There are 2 chapters in our book--chapter 6 dealing with children and chapter 12 describing B12's role in autism. He must be tested. Sally
    Anonymous 42789 Replies Flag this Response
  • Hi – sorry for the long post - have been searching B12 deficiency since I was diagnosed in September 2005, and just found this link. Can so relate to most of the threads here . . . misdiagnosis, months of MS tests, 3 brain MRI’s, as well as all the gastro tests (upper and lower GI), tilt table test, 3 EEG’s (one 24 hour one showing cortical irritability). By the time b12 was dx 9/05, I was bruised all the time from walking into things, I knocked things over as I have impaired body space awareness, word recall issues, cognitive functioning issues, dizziness, that weird feeling you get in your head, gait issues, balance issues, migraines, history of severe feet cramps. I am 36 now, was about 30 at onset of symptoms.Migraines started this process four years ago – then fatigue a year later. Took me another 2 years to get the b12 dx, and the neurologist was sending me to a psychiatrist in the same visit – as to that point they had found nothing measurable wrong with me – that was the 2nd of three neurologists I had seen, and the one that I still see. By the time they tested my b12 serum I was at 158, and was verified days later at 150. No wonder I had all those symptoms huh? I started weekly shots, then stepped down to monthly and my b12 level was only 300. I went back up to weekly and barely maintain at 800, which baffles my hematologist. MMA and homocystine were checked prior to treatment and verified b12 deficiency. I have had gastro and blood verification that I have the intrinsic factor, and do not have celiac or sprue. I am not anemic. The fatigue is so bad at times that it is hard to get out of bed. I drink a can of coke in the am to get started. Other days I can get to the gym before work, which seems to help overall. On top of the b12 I have carnetine deficiency, and 80% of my amino acids are low, especially in a urine sample, though they are low to low normal in the blood sample too. No one can figure out why. I have ongoing issues with my stomach, always have, heart burn, constipation, gas and bloating etc, have a history of reacting to a glucose tolerance test though my glucose numbers were normal. Have shooting pains up the back right side of my head that no one can explain. Rapid heart beat for seconds, or feeling of skipping a beat. PCP told me at one point I may just need to accept no knowing why – which would be fine if I could be treated effectively. But they are still missing something. It was that statement, almost in tears, that pushed the neuro to test for b12, and send me to a psychiatrist. Hx of depression, anxiety (or was it b12) and alcoholism (haven’t had a drink is 13 years). The good news is that most of my symptoms got markedly better when my b12 levels went up. I still battle almost daily with fatigue, migraines monthly (down from upwards of 9 a month), balance and gait issues, and word recall when severely fatigued. I sleep soundly for 8-9 hours and wake like I never slept some days. I can’t stand still for more than a few minutes without holding onto something (chair, wall) or I feel like I will topple over. I still have periodic grey outs (where I feel like I am going to pass out but don’t), dizziness. Oh yeah – my diet has been reviewed, I eat a “normal healthy intake”. I am on no other meds except birth control.Sally – one of my searches led me to your book which our local library had and I read twice. A lot of answers, for that I thank you. I have a better understanding of what my body is doing. But not why, or how to make it stop, as none of the common reason fit. I am so tired of feeling sick and no knowing why, or not being able to do anything about it. Mitochondrial disease has been suggested and half heartedly ruled out. MS was ruled out (3 clean MRI’s), PA, celiac, ruled out . . . .everything common ruled out. Any other directions to try would be helpful. I appreciate everyone’s experiences . . .and will keep reading - be well.Al
    Anonymous 42789 Replies Flag this Response
  • My father is 70 yrs old and was just diagnosed with a vitamin B-12 deficeincy due to my prodding him to do so after reading the posts in this site. So first off, I would like to thank you all, especially Sally who I've directed my father to buy her book (which I will be doing as well now that it is confirmed). Since it has been confirmed, I was hoping for some detailed info on how we need to handle this to help him get as well as he can, i.e. shots, treatment, pill regimen, type of doctors needed, etc. In order to educate and expedite this, I will explain his medical history below.He was in very good shape, both mentally and physically until about 10 years ago. His only health issue was gout which he had been taking medication for since he was about 40. Realizing that anti-gout medication restricts the uptake of B-12, and his avoidance of shellfish because of it, I believe this is where his deficiency all started. Around the age of 60, he began to become anxious due in his mind to the stresses of his job and went on anti-anxiety medication (another b-12 inhibitor) which he is still on today. Soon after, he went into a depressive state and soon after developed a left hand tremor and sluggish left leg gait which led doctors to believe that he had "Parkinsonion-ism" as they called it and put him on anti-Parkinsons meds (another b-12 inhibitor I believe) 3 years ago. So as of now, he's on 3 pills that restrict his b-12 uptake and is only getting worse. He is more lethargic and nervous then ever, has terrible leg pains at night and can hardly walk until his first Parkinson's pill in the morning but that really doesn't do much. He's had heart murmurs, trouble swallowing, leg cramps, dandruff, fine motor-movement probs (such as writing) constipation and difficulty urinating which has got him on another pill to alleviate that problem. He has lost a lot of weight recently and also at one time had a gastrointestinal issue which he gobbled Tums to alleviate.So in a nutshell, I guess that covers it. My question is (and I don't have the MMA, Homocysteine or Serum B-12 numbers yet from his doctor, a new one I arranged for him to meet since I don't trust his GP (who is trying desperately to get him on insulin for diabetes, which I'm sure he doesn't have) or his Parkinsons doc. (who I'm sure misdiagnosed him as well)), what are the steps here? And, after the initial shots and pills are administered and whatever else you recommend, should we take him off the anti's (gout, anxiety, parkinsons) and see if this has been his prob. all along or what? I know he may have nervous system issues from the effects of the deficiency and the lengthy time he's been that way, but I never thought he had Parkinson's in the 1st place (although I've supported him and his treatment for it throughout. However, I was stupid and didn't ask if he'd had a 2nd opinion which I figured he would have, but anyway...). Case in point, due to his anxiety, his career was coming to an end and he identified who he was by it. We had a lengthy talk one night and, being the great athlete in H.S. and award-winning sales-rep, he said he "just wanted to be a champion again." I told him that no matter what happened, he would always be a champion in his friend's, neighbor's, peer's and family's eyes and after saying that, his ever-present hand tremor went away. It returned after we changed the subject, but I don't think Parkinson's works that way. Anyway, to sum up - 1) What now after the initial diagnosis?, 2) how do we decipher if his other problems are b-12 related and not from the other diagnoses? and 3) who do we contact to sue these irresponsible doctors to recover just a piece of the financial, physical and emotional strains their incompetence has placed on my father and his family as well.Thank you all once again.CB
    Anonymous 42789 Replies Flag this Response
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