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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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  • Anyone with documented B12 deficiency and has any neurologic signs or symptoms should get hydroxocobalamin injections (the series)--- you may take methylcobalamin lozenges inbetween injections when the series tapers down---- but people with neuro symptoms caused by B12 deficiency need to quickly try to reverse any damage (if possible) and this should be done with injections ---not oral, SL or patches. Again, you can use these inbetween. Methylcoblamain lozenges would be preferred to cyanocobalamin. Regarding reversing damage--- everyone is different--- it depends how long the deficiency was present and went undetected. Some people have complete reversal, others partial, and still others no improvement--- but --- the patients with no improvement--- must still get their B12--- for their condition will further deteriorate. Remember, in the early 20th century when there was no cure--- people died from B12 deficiency--- it eventually led to a severe anemia--- and they called it pernicious (which means deadly) anemia. Not a real good name for it now--- for it confuses the medical community--- you don't have to be anemic to have a severe B12 deficiency---- and that is one reason doctors misdiagnose it--- or late diagnosis and the nerve damage progresses.
    Anonymous 42789 Replies Flag this Response
  • Just to add some more figures in my last response. My MMA in Dec was 385 which is considerably high , However my B12 in Jan was 900 so oral B12 supplement did increase the level but did not subside my symptoms. Do you think i should be taking B12 Injection ?. I am taking B12 supplment which has cyanocobalamin, do you think i should take the one which has methylcobalamin ?. Does B12 test has any significance even values are above normal but MMA still shows B12 deficiency ?. Any help is greatly appreciate it . If MMA is still elevated this means B12 deficiency--- regardless of the serum B12. The pills are not working--- therefore--- get injections. The MMA will decrease to normal range after the injections--- see if your symptoms improve. B12 injections are cheap. A 30ml vial of hydroxocobalamin costs around $40.00--- and if you have a co-pay it will be less ($5.00, $10.00, etc.) So even if you didn't have insurance--- it is still cheap. 1 injection you use 1ml--- so it will last a long time (until it expires). Your doctor/nurse can teach you or another family member how to give an injection--- therefore repeated office visits will not be necessary.
    Anonymous 42789 Replies Flag this Response
  • Thanks for your response! I will go and get all three tests right away. Your book arrived Friday and I'm half way through it already. Easy and Informative read. I'm really enjoying it. Quick Question. How long after I stop taking an over the counter Vitamin B supplement should I wait until I can get accurate results on all the tests? If you have neuro symptoms I would not suggest waiting--- the blood work may be screwed up anyway--- the serum B12 certainly will be but the MMA is the most important. So see what your MMA is. You could stop the OTC B supplement for a week if you want, but you can't go by the serum B12--- for it will be normal. If the MMA is elevated you have a B12 deficiency. Some labs uses the range of 0-0.4 as normal---but articles from hematologists use anyone who is symptomatic with the value of > 0.27 and serum B12 <350 (without taking B12 supplements orally before testing) to be given a trial of B12.
    Anonymous 42789 Replies Flag this Response
  • Thanks a lot for your reply . I just faxed your response to my GP so she can start B12 injections. I have been struggling with this for last 8 months , they have started Antidepressant (Cymbalta) , Gabapentin (100mgx4) but none of those medicine seem to be working . I started having muscles weakness much more severe than before..I used to sleep with my hand under my pillow whole my life but unable to sleep that way for last 8 months and now if i have my hand under my head it just went to sleep (numb) .. I get tired too soon , also having eye floaters ... could that be because of B12 also. I am hoping my doctor start B12 injections that give my life back. People with B12 deficiency can get visual disturbances, have peripheral vision loss and it can affect the optic nerve---I suggest you read our book, "Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, can get on Amazon, or in book store and many libraries also have it. It will make you well versed in B12 deficiency--- it is referenced by 200 medical journals (from over 400 I have collected). It is easy to read for lay people--- but also will educate physicians. There is a special chapter for physicians and health care professionals--- but I urge lay people to read it--- it will sum up what is going on--- from the other chapters and is still easy to understand.
    Anonymous 42789 Replies Flag this Response
  • Reply to Sally Pacholok, R.N., BSNI had long discussion with my GP today , she is kind of not agree with b12 injection although i pushed her lot, Her argument is if i have pernicoius Aneamia which is one of the reason B12 is not absorbed than my B12 level will not increase by taking oral supplement although she has not test IF antibody . I force her to do MMA test atleast to make sure there is no elevation indication there. I don't know, i am tired to convience doctor here but they are not listening to me. I am going to try another doctor tomorrow to see if he or she can listen to me . If you know any doctor here in Bay area /CA please let me know so i can contact them .. Your explanation does make sense to me and i am totally convience to start B12 injection but looks like those prescibed one and w/o doctor prescription i can't do anything..
    Anonymous 42789 Replies Flag this Response
  • Sally, is it possible that a B12 deficiency may be incorrectly diagnosed as multiple sclerosis? I was diagnosed with MS three years ago, at the age of 29. My symptoms were rather mild (tingling/numbness in fingers, L'Hermitte's sign, occasional double vision), but an MRI of my brain and cervical spine did reveal numerous lesions. My lumbar puncture was negative for O-bands, though these are usually found in MS patients. Based on the MRI and my symptoms, I was diagnosed with MS and began taking Betaseron, one of the interferon treatments for MS. I didn't really question my MS diagnosis until late last year, when my internist discovered in my annual bloodwork that I was slightly anemic, and further testing revealed I had a B12 deficiency (serum level of 178). My internist then ordered MMA and Hcy tests, which were within the normal ranges. However, given my fatigue, neuro issues, etc., he started me on B12 injections in January--1x/day for a week, then 1/week for a month, now 1x/month. Since then, I have been feeling remarkably better, no MS symptoms, and no new lesions on my recent MRI done March 19th. I have continued to take the Betaseron concurrently with the B12 injections. My question for you is, is it possible that all along I have only had a B12 deficiency, and not MS? How do I go about separating improvement due to B12 from improvement due to Betaseron? I have an appointment with my neurologist next Monday and I would like to be as informed and prepared as possible, as I suspect he will not be interested in discussing the possibility of discontinuing the Betaseron. I do, in fact, have a copy of your book, I bought it shortly after I found out about my B12 level and it started me thinking about the whole MS thing. Thanks for any help you can give me.
    Aquarian Librarian 1 Replies Flag this Response
  • Sally,I have a question about my medical history. I have been trying to get answers for 4 years now and everything has gotten worse instead of better. I started seeing a Rhem for multiple joint pain with family hist of RA with 2 aunts. Bloodwork showed low ferritin(16) that was treated with hemacyte plus for 2 yrs. My level is now up to 71. Meanwhile additional symptoms developed as follows: dry eye and mouth with a diagosis of Sjogrens (lip biopsy) which led to infections, mouth and nose and throat ulcers, bladder pain and inflammation (with no explanation) which led to infections, petichie all over body, fatigue, brain fog and memory issues, some arthritis in multiple joints, pain in left side under ribs in back. Blood tests have varied...elavated SED, elavated C reactive protein, elavated in indeterminate range Cardiolipin, Parvovirus positive, RA-negative, celiac-negative, lupus anticoagulant-indeterminate range, slightly elavated gamma protein, slightly elavated BUN/Creatine ratio (1 month ago),slightly elavated TSH (2 wks ago), always elavated CO2. I get no explanations on most of these blood tests and symptoms. Two weeks ago the PA in the Rhem office told me that he thinks I have Fibro. not Lupus as they thought possible in the beginning! I dont know what it is, but I do know that I am 35 and I am tired of feeling more like 65 and I have gotten VERY frustrated!! Currently I am on Plaquenil, Mobic, Prednisone 5 mg, Neurotin (2 wks ago), Flexaril (Bedtime) Any suggestions or Ideas??Thank You!!Dee Deedkeigans@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • Yes, you could have been misdiagnosed with MS verses B12 deficiency. Two points towards B12 deficiency is that you did have a very low serum B12 of 178, and you had a positive response with the B12 injections. In addition, you had an anemia (this should have improved). You need to look at your risk factors (nitrous oxide administation--- surgeries or dental work---wisdom teeth removal, dental cleaning), GI disorders, drugs (PPI's, antacids, H-2 blockers, alcohol, etc), autoimmune diseases (thryoid, Lupus, Addison's, etc), diet (vegan, bulemic, anorexia, etc). Did you have the MMA test immediately after the low serum B12--- any B12 injections or supplements before the MMA taken---- and what was the result? The MMA is extremely helpful, but not the end all test--- and the urinary MMA is more sensitive than the serum MMA according to Dr. Eric Norman (the inventor of the urinary MMA). Norman Clinical Labs in Cincinnati, Ohio--- www.b12.com We do not know how MS drugs (Betaseron, Copaxone, Avonex) interact with the MMA test. Studies would have to be done on animals. There are numerous articles in the medical journals of lesions on MRI scans caused by vitamin B12 deficiency (Google these words together and you will find numerous references). Your next MRI--- would be interesting to see if the lesion in you spine is gone from the B12 therapy. There are articles showing normal MRI after B12 therapy-- 1 year later. Does the once a month injection hold you? Hydroxocobalamin may benefit you more than the cyanocobalamin injections. All the symptoms you described as MS are also signs and symptoms of B12 deficiency. You'll have to discuss this with your doctor. Don't forget, he/she is not going to want to say this is B12 deficiency over MS--- for fear of liability--- and they really probably don't know. If B12 therapy was started early enough--- your MRI lesions may change back to normal--- which would point towards B12 deficiency. This is a perfect example where the standard of care must be changed for all patients suspected with MS---- should get B12 deficiency ruled out with a MMA, Hcy, and B12 test--- as a start. Not if the neurologist feels like it---- the standard of care should dictate before placing patients on MS drugs----B12 deficiency is properly ruled out. Why? Because B12 deficiency has a treatment that is reversible, where as unfortunately to date MS does not. There are other tests Transcobalamin II, etc. Your doctor should check you for serum gastrin, parietal cell antibody, and intrinsic factor antibody.
    Anonymous 42789 Replies Flag this Response
  • Reply to Sally Pacholok, R.N., BSN I had long discussion with my GP today , she is kind of not agree with b12 injection although i pushed her lot, Her argument is if i have pernicoius Aneamia which is one of the reason B12 is not absorbed than my B12 level will not increase by taking oral supplement although she has not test IF antibody . I force her to do MMA test atleast to make sure there is no elevation indication there. I don't know, i am tired to convience doctor here but they are not listening to me. I am going to try another doctor tomorrow to see if he or she can listen to me . If you know any doctor here in Bay area /CA please let me know so i can contact them .. Your explanation does make sense to me and i am totally convience to start B12 injection but looks like those prescibed one and w/o doctor prescription i can't do anything.. Your doctor is misinformed. It was found that even in patients with pernicious anemia--- if they take a large enough oral dose >1,000mcg of B12 there is some passive diffusion. The serum B12 will go way up--- but the injections are more beneficial. We don't want the paper lab report to look good--- we want a patient response. There are many studies arguing that oral replacement is as effective as injections---even in pernicious anemia patients. You must remember, that once you start receiving injections your body stores it for many years--- so these studies can be flawed. There are many different manufacturers of B12 pills and lozenges--- which are not FDA controlled, and there are 3 main different kinds of B12 (methyl, hydroxo, cyano). Some people do well on pills, others do not. I myself switched over to the pill ---- taking 5,000mcg daily of methyl-B12--- and can tell a big difference when I get an injection---- not that I like injections--- but the benefits outweigh any minor fleeting pain from an injection. It is individualized, and there are many different reasons a person can develop a B12 deficiency, rather than from the classic perncious anemia. You could try to find a nutritional MD who would be willing to try the B12 injections on you. Only you can make the determination if it is helping. I don't know of any doctors in California---but a funny thing is it appears that many Hollywood stars easily get B12 injections (those who don't even need them)--- so it is crazy how the main stream physician is opposed--- especially if patients are symptomatic---- they could give some patients a therapeutic trial---- it is much better to be on B12 if it works than narcotics for chronic pain, antidepressants, neuropathy drugs, etc.I learned about the Hollywood celebrities from an interview I did with a reporter from Variety Magazine last August. (now some celebrities may indeed need the B12 injections--- but the reporter put it everyone gets them)---- too bad the average American who is greatly symptomtic is having such a rough time getting properly tested and proper treatment.
    Anonymous 42789 Replies Flag this Response
  • Reply to Sally Pacholok, R.N., BSN .I changed my doctor yestarday and new Internist agreed to start B12 injection . However we could not find Hydroxocobalamin , they only have cyanocobalamin injections. They even tried quite of few pharmacy here but none of them carry Hydroxocobalamin , we even tried vendor they don't even have it either . I search internet the only vendor carries Hydroxocobalamin one is "zalmo.com/swiss.html" .I already had two B12 injection so far but that is from cyannocobalamin . Can you please tell where i can get Hydroxocobalamin B12 injections. Should i order online the side i mention above. Should i also taking Methylcobalamin SL lozenges (1000mcg) dialy as well.
    Anonymous 42789 Replies Flag this Response
  • Sally,I have a question about my medical history. I have been trying to get answers for 4 years now and everything has gotten worse instead of better. I started seeing a Rhem for multiple joint pain with family hist of RA with 2 aunts. Bloodwork showed low ferritin(16) that was treated with hemacyte plus for 2 yrs. My level is now up to 71. Meanwhile additional symptoms developed as follows: dry eye and mouth with a diagosis of Sjogrens (lip biopsy) which led to infections, mouth and nose and throat ulcers, bladder pain and inflammation (with no explanation) which led to infections, petichie all over body, fatigue, brain fog and memory issues, some arthritis in multiple joints, pain in left side under ribs in back. Blood tests have varied...elavated SED, elavated C reactive protein, elavated in indeterminate range Cardiolipin, Parvovirus positive, RA-negative, celiac-negative, lupus anticoagulant-indeterminate range, slightly elavated gamma protein, slightly elavated BUN/Creatine ratio (1 month ago),slightly elavated TSH (2 wks ago), always elavated CO2. I get no explanations on most of these blood tests and symptoms. Two weeks ago the PA in the Rhem office told me that he thinks I have Fibro. not Lupus as they thought possible in the beginning! I dont know what it is, but I do know that I am 35 and I am tired of feeling more like 65 and I have gotten VERY frustrated!! Currently I am on Plaquenil, Mobic, Prednisone 5 mg, Neurotin (2 wks ago), Flexaril (Bedtime) Any suggestions or Ideas??Thank You!!Dee Deedkeigans@hotmail.com Sounds like you have something autoimmune going on. Since your TSH was elevated maybe they can place you on a low dose thyroid medication and see if you respond--- hypothyroidism can cause many symptoms (some of which you described)-- but you definitely should have the MMA test, homocysteine, B12, gastrin, and parietal cell antibody. Steroids can help in autoimmune pernicious anemia --- and you are on Prednisone--- but you still need the tests above done. (Steroids are not the way to treat pernicious anemia--- but they found out in the mid 20th century while doing research that giving people steroids improved the autoimmune phenomenon of pernicious anemia and allowed the gut to absorb B12--- this is how they realized that one form of B12 deficiency "autoimmune pernicous anemia" is an autoimmune disease. I am not sure if Plaquenil will interfere with the MMA test. Get the tests done first. Regardless, since they are swaying towards fibromyalgia--- they should not object on a trial of B12 injections. Again, the slightly elevated TSH should be treated--- see if you get a response---- and they monitor your TSH. Armour thryoid is a natural thyroid verses synthetic and some people respond better---- you still need a prescription for it. Mary Shomman is a thyroid advocate and has written some books, and has an excellent website. Do not start taking high-dose B12 until you get proper testing. Sounds like your doctor has done a lot of testing--- and rheumatologists know about all the autoimmune diseases---- they shouldn't mind ruling out pernicious anemia. (in addition you at one time had a low ferritin--- which as you know indicates poor iron store--- a low ferritin is common in pernicious anemia--because this disorder causes achlorhydria--- no stomach acid, or hypochlorhydria (low stomach acid) and we commonly see low ferritin and low B12 together in people with autoimmune pernicious anemia, gastric atrophy, and achlorhydria. No, at 35 you definitely should not be feeling like this! Obviously something is going on, and it is not in your head.
    Anonymous 42789 Replies Flag this Response
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  • Reply to Sally Pacholok, R.N., BSN . I changed my doctor yestarday and new Internist agreed to start B12 injection . However we could not find Hydroxocobalamin , they only have cyanocobalamin injections. They even tried quite of few pharmacy here but none of them carry Hydroxocobalamin , we even tried vendor they don't even have it either . I search internet the only vendor carries Hydroxocobalamin one is "zalmo.com/swiss.html" .I already had two B12 injection so far but that is from cyannocobalamin . Can you please tell where i can get Hydroxocobalamin B12 injections. Should i order online the side i mention above. Should i also taking Methylcobalamin SL lozenges (1000mcg) dialy as well.-----------------------------------------------------------------------This is the company I use--- took the information off the vial. Hydroxocobalamin Injection USP 1,000 mcg/ml (comes in 30ml vial)NDC 0591-2888-301-800-272-5525 (this was the # 5 years ago) Prescription (Rx) only for intramuscular (IM) useMtd by Watson Laboratories, IncPhoenix, AZ 85043 USAA subsidiary of Watson-Pharma, IncCorona, CA 92880 USA The NDC # will be important when your doctor or staff calls the company--- any drug store can get it--- but their wholesaler has to have them on the list. If they can't get it--- your local out-patient pharmacy hospital should be able to get it. More pharmacies will be getting it in hospitals for it has just been approved in the U.S. for the treatment of cyanide poisoning--- which we get cases in the ER and smoke inhalation. They have been using this in Europe for years--- the U.S. was behind the times. The doses for cyanide poisoning and smoke inhalation---- are extremely over what we use for treating B12 deficiency. The pharamacies I tried to get it from (long ago) also gave me the run around, even my own hospital pharmacy --- until I called the company myself and hooked them up with the pharmacist---- someone just needs to take the extra step. Any problems getting it let me know. Having the company name and NDC # will make it much easier--- the pharmacist will have to find a wholesaler who supplies it (this will be their job to do).
    Anonymous 42789 Replies Flag this Response
  • Almost forgot, yes you can take the methyl-B12 lozenges until you get your hydroxocobalamin---- when you get it--- the days you get your shot, don't take the B12 lozenges---- save them for between shots, not only to save a little money--- but the day you already got the shot-- there is no need to also take it in another form. If you are taking the 1,000 mcg dose--- take it three times a day-- breakfast, lunch and dinner or take the 5,000 mcg daily. You should really take greater than 2,000 mcg daily Make sure to check the labeling of the lozenges, some companies are tricky stating it is methyl-B12--- but when you look at the ingredients-- some state cyanocobalamin, others are pure methyl-B12 (so they say).
    Anonymous 42789 Replies Flag this Response
  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx
    Anonymous 42789 Replies Flag this Response
  • Question for Sally:-If your B12 level is higher in blood , dioes it effect anything if you are taking injection also?. Or higher B12 should not really impact anything at all ?. Any side effects of higher B12 level in blood although MMA still high ?I have ordered your book and i should have it by Next Monday.
    Anonymous 42789 Replies Flag this Response
  • I just got results of my blood test performed my new doctor yestarday. She found my TSH value went too low , it is right now 0.02 which is way lower than average lower value . I initially disgnosed Hypothyroidism due to Hashimotos thyroditis.She said that can be one of the reason of your muscles weakness and fatigue as well so she wanted me to stop T3 (cytomel) and don't take any T4 for two days and than start with Levoxyl 75mcg. I am waiting for MMA/Intrinisic fator Antibody) result. I am still having hard time to get HYdroxcololimin injection , my doctor is trying that vendor you sent me. Thanks for all your help.
    Anonymous 42789 Replies Flag this Response
  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx B12 injections every 3 months is way too long of a period to wait in-between injections. Make sure your doctor is giving you 1,000 mcg verses 100mcg of vitamin B12 --- and again the hydroxocobalamin. I have read in some medical literature where they state you can give 100mcg or 1,000 mcg every 3 months using the hydroxocobalamin--- but this clearly is not enough. It may change the hematologic picture---- but not the neuro picture--- if you are not getting enough B12 --- your neuro symptoms will return. 1. You need to receive more frequent B12 injections at 1,000 mcg at least every 4 weeks. Because you have been treated so long every 3 months--- and are feeling poorly---- I would reinstitute the series of injections and see if your symptoms vanish or improve. 2. Why do you have B12 deficiency? Your doctor needs to rule out celiac disease, H. pylori (which are GI reasons you could have B12 deficiency), or do you have autoimmune pernicious anemia--- gastric atrophy, achlorhydria. Since you have had B12 deficiency for so long--- and got it at a young age---- you should be having rountine endoscopy of your stomach and duodenum. They need to take a stomach biopsy--- to see if you have gastric atrophy, H.pylori--- plus when you have autoimmune pernicious anemia--- you are at a higher risk of getting stomach cancer. Because you are having such GI symptoms also--- an endoscopy is a must. 3. If you do indeed have autoimmune pernicious anemia--- and you have an autoimmune disorder--- your doctor should check you for other autoimmune disorders (thyroid, etc.) for you are higher risk. 4. Because you are getting B12 injections--- your serum B12 will be normal even high--- but it is NOT reflecting what is getting into the nervous system. Ask your doctor to prescribe you a 30 ml vial of hydroxocobalamin and learn how to self inject (or a family member) if one of the reasons he/she gives it so seldom is to cut down on office visits. 5. Some people have Transcobalamin II deficiency--- which they have an impairment in intestinal absorption of B12. This disorder of plasma B12 transport plays an important role in binding B12 within the enterocyte (intestinal cell) prior to its entry into the circulation. Transcobalamin II deficiency--- which is another reason for B12 deficiency--- can be successfuly treated by bypassing the normal physiology by giving B12 injections, which ensures B12 delivery into cells. This can occur if a person has a congenital defect of the distal ileum (last part of the small intestine), or diseased ileum (either from a chronic disorder or surgical removal). These people cannot swallow pills for absorption---- sublingual route and patches---need to be tested in this population---- have not read any studies using these routes. 6. You truly have autoimmune pernicious anemia--- you are at higher risk for getting other autoimmune diseases--- and your doctor should check you. 7. I would get the series of B12 injections again--- up your maintenance dose to every 3-4 weeks after the series, and make sure the B12 injections are 1,000 mcg or 1ml each (not diluted down) and is hydroxocobalamin. Have you had a parietal cell antibody, intrinsic factor antibody, or serum gastrin. When you have a biopsy of your stomach they should also biopsy your intestine for celiac disease--- which can cause B12 deficiency as well as other nutritional deficiencies such as iron.You can take high-dose methyl-B12 lozenges inbetween injections 5,000mcg--- but I would definitely get the injections. With all your stomach symptoms--- you need your stomach scoped and biopsied--- ruling out celiac disease, H.pylori, gastric or duodenal ulcer, gastric cancer, gastric atrophy. Your doctor needs to know why you were B12 deficient at such a young age--- for it will dictate what future tests and routine screening you need for your health.The neuro symptoms you are having sound like you are not getting enough B12---- and your new doctor proved this by doing a serum B12 (which means you really aren't getting enough B12-- you are being underdosed so your symptoms are returning. The B12/IF pills are not as good as the injections. He could do a MMA test---to see if this helps show anything--- but it may come back normal since you are already getting injections---and will depend when your last injection was. Regardless, do not waste time and start the injections--- if your symptoms are from inadequate B12 therapy---you want to reverse any neuro signs/symptoms before they become permanent. Your doctor of course also needs to rule out other disorders.
    Anonymous 42789 Replies Flag this Response
  • What are the common sign of B-12 deficiency??? My husband is a 39 year old veteran...the VA diagnosed him with severe B-12 deficiency...put him on shots he gives him every month...be he somtimes forgets to order his B-12...shouldn't they check his levels every so often to see if its gone up...and i think maybe i have a B-12 deficiency as well....i had blood work done last year...how would i find my B-12 level on the report...what is it called...Thanks for any help!:)
    Tenngal71 22 Replies Flag this Response
  • Thank you so much Sally for your reply. I can't beleive that I have not been monitered at all with this condition and more investigations done.I am going to see my doctor today and I am going to mention all of this to him. It just makes me so angry that people with this problem don't get taken seriously enough.I beleive I was on the cyanocobalamin shots, so I will ask about the Hydroxocobalamin as you mentioned.I think self injection is a great idea. I know dr's in the uk are usually against such things but I will see what can be done.Once again thank you so much for your help and I will keep you posted on my situation.Charlotte
    Anonymous 42789 Replies Flag this Response
  • I posted my story earlier in the thread, but I have a question - what's the best kind of doctor to see to get a B12 deficiency diagnosis? Family doctor, neuro, gastroenterologist, endocrinologist? Should I expect my family doctor know much about it? I see him on Monday for follow-up on something else and I'd like to bring this up with him, but I don't know if he'll have much of a clue. I don't know if I should talk to him about it or go back to see the neurologist that I saw (he was the one who tested my B12 and said it was fine). Sally - I did buy your book and went through the scorecard section where you add up points for your symptoms. I had 8 points and could have probably added a few more as it was sort of borderline on a few answers, so I didn't count them.
    snoopy24 9 Replies Flag this Response
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