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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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  • Once you get an injection, yes the serum B12 will be high--- that is normal----- but, your friend needs to get a series of injections to replace her body stores. A common mistake is for the doctor to retest her serum B12 after they give an injection or two--- which when it comes back high---they think they don't need anymore, or will only give you a shot once a month--- 2 shots is not replacing body stores. Hopefully her doctor not only checked her B12 but did a MMA test and homocysteine test---which would help prove if she had a severe deficiency. A serum B12 of 200 is low-- and she needs treatment. Now that she received 2 injections, the MMA is pointless. The typical protocal for B12 injections is 1mg every day or every other day x 5 to 7 times, then once a week for 4 weeks; then once a month for life. She also should take the injectable for hydroxocobalamin verses cyanocobalamin. Also, she should buy methylcobalamin 5mg which equals 5,000mcg sold as lozenges (a reputable company is Jarrow) www.jarrow.com and take them daily. She should keep a diary of how she is feeling. Certainly her signs and symptoms sound like B12 deficiency and she did have a reported low B12 of 200. Yes, B12 deficiency can cause dizziness and doctors can mistake it for vertigo. She should also look into if she received any nitrous oxide which would use up her B12 stores (dental or other surgery).Regarding the potassium--- this typically only happens when patients are severely B12 deficient---- where they have been misdiagnosed for a long period and they are severely anemic and are getting daily injections. Two shots should not have depleted her potassium. Your friend may have a B12 deficiency---- but she may have something else going on with it. They should check her thyroid and iron stores using the test (ferritin) for a thyroid disorder and iron deficiency. She should also see a neurologist to rule out MS. But, she must take the daily high dose methylcobalamin and try to get some more shots. She should record her response. Do not worry what the serum B12 is ----now that she had injections or will be taking B12 lozenges--- because now it is irrelevant. This is why it is so important to get tested first before people start taking high dose oral B12 on their own, because they will screw up the tests--- and then their doctors will think B12 is not the problem and they will continue to get misdiagnosed or think their patient is nuts. I know in her case she did not do this, but thank goodness some doctor at least did a serum B12--- but he/she should of done the MMA and Hcy after the B12 came back low. No harm done--- now she needs to get more B12--- and should also follow up with a doctor to make sure nothing else is going on, like MS. But it sounds like she made the rounds to many doctors---and got no where. Her case is typical where many doctors ignored checking her B12 status when they really have a problem, then when they can't find anything wrong, they think the patient has a psychiatric problem (which as you know--B12 deficiency also causes). Good luck.
    Anonymous 42789 Replies
    • February 28, 2007
    • 03:42 PM
    • 0
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  • I have similar stories to everyone here on the board. I'm 29 year old female, and have had severe dizziness for years, along with recent headaches, and much back pain. I've been to three different doctors for blood work and the normal ENT tests, all come back normal. I've checked my eyes, got a new monitor at work, and a new chair at work. Now, I've had Irritable Bowel Syndrome since I was 14. I'm going to buy your book now, but I have two questions. One, is the Vitamin B group absorbed in the stomach or in the bowels? Two, I just started taking a Super-B pill last night, with good levels of all the different B's. So, my second question is can a vitamin pill work as good as the shots you suggest?
    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
  • 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.
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  • To Tenngal71: It is interesting that your husband is a veteran (39 years old) and has a B12 deficiency. Aprrox 6-8 weeks ago, CNN was reporting the poor care/conditions at VA hospitals--- one woman was giving testimony-- and all the signs and symptoms she was reporting sounded like B12 deficiency---and all these veterans (coming back from Iraq) need to have B12 deficiency ruled out (they shouldn't assume that any of their mental or neuro signs or symptoms are just post-traumatic stress disorder or are psychological--- they could also have a true medical problem causing their symptoms. This really peeked my interest further, because I was contacted by the Ireland Medical Journal to do a Q and A for their journal regarding B12 deficiency. There is a physican researcher in Ireland who believes that they are seeing more B12 deficiency cases because of the environment---(we already know that cyanide, mercury--- binds with B12---therefore using it up--- and can cause deficiency or exacerbate an existing deficiency) so one just wonders the chemical warfare that potentially could be used in our present war---- makes all the more reason why vetrens could be at higher risk for B12 deficiency. All veterns who are symptomatic need B12 deficiency ruled out. If they have received nitrous oxide (laughing gas) this destroys B12 in the body. (they could get this for skin grafts, surgeries from injuries received in war, and any dental work). In addition, they are more than likely not eating a diet full of B12 (meat, eggs, milk, cheese)--- and the amount of B12 in food or a basic vitamin supplements is not enough. Your husband who was diagnosed with B12 deficiency should have received a series of B12 injections--- to rebuild his stores. 1,000 mcg IM every day x 7 days1,000 mcg IM every week, x 4 weeks1,000 mcg Im every 4 weeks for maintenance He could take a methyl-B12 5,000 mcg lozenge daily inbetween injections.If he only received one shot--- and then had to wait another month for the next shot---- this is not enough. If the VA is missing injections because they did not order it--- that is absurd---- this is a serious condition, and must be treated properly!Don't let his doctor underdose him or treat him miserly with vitamin B12. His staff can teach you how to give the injections. Once he receives an injection, it typically makes his blood work look fine and his B12 level high enough--- which discourages many doctors to continue proper treatment. You don't monitor B12 deficiency by seeing what the serum B12 level is. Once your husband was identified with B12 def. , he needed the series, and continued treatment for life. His doctors should investigate why he was B12 deficient to begin with. To monitor his B12 status a test called methylmalonic acid is a more sensitive screening tool, if elevated indicates B12 deficiency at the tissue and cellular level. If you know of someone reliable in the government to address B12 deficiency in veterans, (that I could contact) to promote proper testing and treatment, please let me know.An interesting site you may want to visit is www.B12.com B12 deficiency attacks numerous body systems (neurologic, hematologic , immunologic , vascular, gastrointestinal, musculoskeletal, and genitourinary), so the signs are symptoms are many--- but everyone is different on how they present-- and they can predominate in one system.Typically B12 deficiency strikes the neuro system and people exhibit neuropsychiatric manifestations. So anyone with neuro or psych signs and symptoms must be tested for B12 deficiency:---paresthesias (numbness or tingling to extremities)---dizziness---balance problems---gait problems---clumsiness (incoordination)---frequent falling---tremor---muscle spasticity---visual problems---impaired fine mortor coordination---nocturnal cramping in arms and legs (like restless leg syndrome)---bladder-bowel incontinence (advanced--when B12 def. has been undiagnosed or misdiagnosed for an extended period of time) psych problems---depression---apathy---irritability---poor memory, memory loss, cloudy thinking---confusion, disorientation---dementia---paranoia---delusions---violent behavior---suicidal ideations---hallucinations---psychosis Other common signs and symptoms---fatigue---weakness---falls---pallor---anemia (but you do not have to have--- which fools doctors---sore tongue---weight loss There are more signs and symptoms--- but B12 deficiency attacks the myelin and is a demyelinating disorder---- similar to multiple sclerosis. That is why there are so many neuro signs and symptoms. If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury. This is what we are trying to prevent--- disability, poor health, and even death (from misdiagnosis). B12 deficiency is serious---- in the late 19th century and early 20th century people died from B12 deficiency---(for their was no cure back then), eventually became anemic--- and they called it pernicious (deadly) anemia. Can learn more from our book, "Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, 2005. 13 reviews on Amazon.com
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  • Sally, I'm hoping that you can help me as I'm very troubled with the symptoms I've been having.I believe I have a b12 deficiency. My symptoms started about two weeks ago when I felt dizzy and felt some really bad vertigo. I sat down and ate and drank and felt fine. Now my dizziness, vertigo, difficulty concentrating, extreme weakness, tiredness, etc are nonstop. I went to a doctor and mentioned a possible deficiency to her after reafing this thread... she took 4 vials of blood and then told me I'm absoltely "healthy." She said I need to gain some weight and sent me home without any diagnosis.I must also mention that this is very scary for me because Ive been vegan for about 10 months and have NOT been taking b12 supplements. The only b12 I was getting was from my irregular usage of multivitamins and fortified soymilk.I have an appointment to see a different doctor on the 12th, but I'm scared of waiting that long. I want to request the uMMA test as well as more bloodwork. Do you think this will be possible for them to do? I'm afraid they will tell me that they don't know what the test is..Also, I wanted to start taking b12 supplements under my tongue, but I'm not sure if I should wait for the diagnosis first.If you could help me out I'd really appreciate it. I am completely freaked out after reading so much about b12 deficiency online. I want to fix this before it turns into something more serious than it already is.Thanks,Natalie
    Natalieee 1 Replies Flag this Response
  • Hi Sally, I am 30 year old women leaving in the UK & have been feeling pretty ill for about 3 months (with muscle aches, mild tremors, slight unbalance when walking, vision blurriness - with new floaters I have never had before, extreme fatigue, sore tongue, small white patches on skin). Although I have been having dizzy spells for about six months in total. I have had lots of blood work done by my doctor (which all came back fine) except for a low b12 of 162 (pg/ml) and fairly low / normal folic acid levels and was referred to a haemotologist. The haemotolgist said that I have good blood and should begin B12 injections as soon as possible & if the injections don't start clearing up my neurological symptoms within 6 weeks I should go to a Neurologist - she also gave me another B12 serum blood test (which came back 315 pg/ml - although I had taken some oral B12) I have had 5 B12 injections (1,000mcg hydroxocobalin) and am slowly starting to feel better and have 6 more planned, My energy levels have definately risen and I am definately not so achy. Although I am still having a slight difficultly with feeling off balance when I walk and blurry vision. I have ordered Jarrow 5,000mcg Methocobalin that I will take daily when not having my injections. My question is how long do you think the B12 supplements may take to work? And also is it to late for me to have MMA tests / HCY tests now that I have started taking supplements? Also, Would you recommend the Schilling test to determine the cause of my difficiency? Thanks, Kate Hi Kate,Yes, it is too late to have the MMA and Hcy tests, but you obviously have a B12 deficiency. You are very symptomatic and have a documented low B12. The MMA test is to help people who have normal serum B12 levels but are symptomatic--- so in your case it is not neccessary. It is an adjunctive test to aid in diagnosis, and we typically reccommend having all 3 at once (before therapy)---- but in your case, no problem. I am pleased that your doctor is giving you hydroxocobalamin injections and has given you the series. (Just make sure he/she is giving you 1,000 mcg in every injection verses 100mcg)----this is important. I think the injections are better than the lozenges (ESPECIALLY IF YOU HAVE NEUROLOGIC SIGNS OR SYMPTOMS)---and you do. I still would take the methyl-B12 lozenges between injections---- but you may need to continue frequent injections for the next 6 months (every 3 days or at least once a week)---- trying to recover whatever injury you have.Yes, you could have a Schillings test--- but it is not necessary. You should have antibody tests for pernicous anemia (PA) , and a serum gastrin. You should get thryoid tests and ferritin to check out your iron stores. It takes about 6 months to a year from the time B12 treatment was started to see what recovery you get or what injury has taken place. After your 6 weeks of treatment--- yes see the neurologist ----it sounds like you are on the every week shot now----- again, you need to get these injections every week or even every 3 days to try to repair as much injury as possible. At about 6 months you will have a good idea of where you will be at---- hopefully all or most of your symptoms will resolve. It sounds like this has been going on for some time--- because you mentioned you had dizziness for about 6 months--- and dizziness is one of the symptoms of B12 deficiency. Your B12 deficiency may be from an autoimmune disorder (PA) and because you have white patches on your skin--- show them to your doctor--- this may be vitiligo which is an autoimmune disorder--- highly related to pernicous anemia (PA). This will direct your doctor to check you for other autoimmune disorders (such as thyroid-- Hashimoto's thyroiditis, Graves disease). Your doctors will have to figure out why you had a B12 deficiency to begin with: diet, eating disorder, malabsorption syndrome (celiac disease, Crohn's, bacterial overgrowth) H. pylori, drugs (proton-pump inhibitors, H-2 blockers, chronic antacid use) nitrous oxide, autoimmune disorder (pernicious anemia), etc.) B12 deficiency is a very slow, insidious process that does not happen over night or over weeks or months---- your body is gradually depleted--- and then you begin having symptoms. This is why when people have any of the signs and symptoms of B12 deficiency--- their doctors should readily test them---- because we are trying to prevent permanent neurologic injury and disability. I wish you well--- and keep me posted of your recovery! Sally
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  • Sally, I'm hoping that you can help me as I'm very troubled with the symptoms I've been having. I believe I have a b12 deficiency. My symptoms started about two weeks ago when I felt dizzy and felt some really bad vertigo. I sat down and ate and drank and felt fine. Now my dizziness, vertigo, difficulty concentrating, extreme weakness, tiredness, etc are nonstop. I went to a doctor and mentioned a possible deficiency to her after reafing this thread... she took 4 vials of blood and then told me I'm absoltely "healthy." She said I need to gain some weight and sent me home without any diagnosis. I must also mention that this is very scary for me because Ive been vegan for about 10 months and have NOT been taking b12 supplements. The only b12 I was getting was from my irregular usage of multivitamins and fortified soymilk. I have an appointment to see a different doctor on the 12th, but I'm scared of waiting that long. I want to request the uMMA test as well as more bloodwork. Do you think this will be possible for them to do? I'm afraid they will tell me that they don't know what the test is.. Also, I wanted to start taking b12 supplements under my tongue, but I'm not sure if I should wait for the diagnosis first. If you could help me out I'd really appreciate it. I am completely freaked out after reading so much about b12 deficiency online. I want to fix this before it turns into something more serious than it already is. Thanks,Natalie Hi Natalie,If your doctor doesn't know what the methylmalonic acid test is ---- you could always print out what it is from Dr. Eric Norman's website www.b12.com which is very informative. He also will test your urine without a doctor's prescription---- but then the insurance company won't pay for it. I believe it costs $80.00 now to do the test.If you start taking the B12 lozenges--- you will alter the tests--- and then it clouds the diagnosis for your doctor.It any event--- being a vegan you will not get enough B12 if you do not supplement it with high dose supplements. 10 months doesn't sound long enough to become B12 deficient----BUT, it depends on where your B12 stores were to begin with, your medical history, other risk factors, etc. So you could be B12 deficient--- and need proper testing. A woman from the U.K. recently wrote and she had dizziness for 6 months and was found to be B12 deficient. When your doctor took the 4 vials of blood and told you that you were healthy--probably because you were not anemic or macrocytic----but you don't have to have either of these for B12 deficiency. Ask the doctor that took your blood if he/she did a serum B12? You still need the MMA either serum or urine. Sally
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  • Quick Question: My doctor appt is in 30 minutes!I am also having many of the symptoms of B12 deficiency (dizziness, tingling feet, difficulty concentrating, etc.) I am taking a prenatal vitamin that has both folic acid & B12, but maybe not enough? Question: If I ask for testing today will it be accurate since I've been taking prenatals for ~3 months? I purposely did NOT take the vitamin this morning, but did yesterday. How long to clear my system? Thanks!!
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  • Quick Question: My doctor appt is in 30 minutes! I am also having many of the symptoms of B12 deficiency (dizziness, tingling feet, difficulty concentrating, etc.) I am taking a prenatal vitamin that has both folic acid & B12, but maybe not enough? Question: If I ask for testing today will it be accurate since I've been taking prenatals for ~3 months? I purposely did NOT take the vitamin this morning, but did yesterday. How long to clear my system? Thanks!! Do not worry, have your doctor order the MMA test with the serum B12. Prenatal vitamins do not have that much vitamin B12 in them. Taking oral vitamins that have some B12 in them --- may raise the serum B12--- but this is why the MMA will be important. After your blood is drawn-- you should try a high dose B12 (methyl-B12 5,000 mcg lozenges)--- but make sure your doctor did the MMA test.
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  • Haven't been invited to speak at any conferences, but would gladly do so if invited.... Discussing B12 deficiency and everything in the book would be an excellent conference for physicians and other health care professionals .... If you know of anyone interested, they can contact my publicist at (800) 497-4909 . Hi Sally, I recently joined & have read most of your book in an attempt to educate myself so that I can: 1) advocate for my 82yr old father who has been very ill for over 2 yrs. and slipping gradually before that. 2) learn how to advocate for your information & book, and 3) try to credibly, intelligently & tactfully approach the MDs who are responsible for missing this B12 help in my once wonderful, intelligent father's life thus far. To that end, QuillDriver Bks was very kind in giving me a disc. for 25 books which I intend to send out to everyone involved, but would like advice lst & an organized approach in how to be a proper B12 PR / Patient Advocate. I'd love to set up a number of lectures for you on East Coast/New England if I knew how to proceed-- I can approach your publicist /would need further suggestions... tell me, what can I do? I feel very determined about this.... I think it is utterly criminal what is happening in this epidemic of missed B12 deficiency diagnoses, what has happened to my father & so many others. This post will be long, I'm sorry. Should I email you privately rather than take up too much space? I'd like your feedback v. much, as I'm convinced that B12 is the main issue, a mess of an undiagnosed/ misdiagnosed situation... Here are the facts as I know them, taken from an attending Family Practice Dr's & a GeriatricPsychiatrist's reports. The psychiatrist had been chosen in 2005 by my father & stepmother to be his main attending physician. Psychiatrist's assessment & plan 03/06/07:"An 82yr old man w/ history of depression now presents w/depression, withdrawn affect & vegetative symptom of anorexia w/over 10lb weight loss. Labs are signif. for a mild anemia, low normal folate + B12. Patient appears undernourished. I suspect pt's anemia is multifactorial w/component due to nutrit.def. 2nd to anorexia from depression. I see no medical contraindic. in patient receiving meds already prescribed incl. Megace, Wellbutrin, Xanax, Ambien, Namenda, Aricept, Prozac, Zocor & Synthroid. Nutrition should eval. to see if benefit from any supplementation. If pt. observed to have difficulty ambulating, recommend occ. & phys. therapy evaluate for ambulation safety. His complaints of dizziness may be due to weakness and debilitation. Dr. F. neurol. will be also evaluating for any neurol. component to pt's symptoms."NO mention in earlier reports re anemia, no suggestion for B12, or follow-up w/ "Nutrition".] "Past surgical history: pyloric stenosis repair 78 yrs ago, then sounds like an incisional hernia in approx. 1993, then a small bowel obstruction secondary to adhesions, and in 2000 laparoscopic lysis of adhesions. Prostate cancer treated w/cesium implants 1999; pronounced kyphoscoliosis; constant pain in right upper quadrant (at lower rib) for over 30 yrs" . Bladder cancer treated with KGW? washes 2005-6 at which time it seemed he became much sicker quickly, but urologist says no connection. Test results early March '07: CBC: WBC 4.7L/ RBC3.67L/ HGB 13.1L/ HCT 36.8L /MCV 100.5H/ MCH 35.7H/ MPV 7.2L/ Granulocytes 49.5 ...etc. Metabolic Chem: Glucose 109/BUN 16/ creatinine 0.9/ cholesterol 135/ total protein 5.3, alb 3.5/ AST 18/ TSH 0.1, freeT4= 1.01/ VitB12= 303, folate 12/ potass. 3.8/ chloride 110/ calcium 8.8L Our personal experience of him is as follows: For about a year, Dad's been now in bed 22 of 24 hrs, a virtual invalid; in pain from the 30yr mystery ailment in his right side; memory loss/"dementia"; depression, some suicidal ideology, a few hallucinations last yr; cold all the time; neuropathy; 10-25lb weight loss over last 2 yrs; lesions in mouth & gums> attrib. to denture problems (but no beefy red tongue I know of); constipation treated w/meds; an indescribable dizziness/ vertigo/ brain?-something; increasing weakness, not surprisingly; motor problems> a slight shuffle; small tremor sometimes in hand, worse in legs; 2 recent falls in the bathroom, & a very,very bad fall over a yr ago in a restaurant parking lot attributed they think to a raised edge on walkway, or possibly they wonder, a TIA; 3 bouts of weeklong (!)admission into the Senior Behavior Center of Sharon (CT) Hospital for observation, tests, feeding; MRI's show small white matter abnormalities. In short, a total failure to thrive, and they all have given up, call him a total mystery!Over 2 yrs, nothing but dead ends from his MD's, every CT, MRI, every test (no tests you suggest were given exc. B12/folate only a couple times), the latest push from his psychiatrist was for ECT (shock treatment) for his depression & malaise! His symptoms have not followed the Alzheimer or LewyBody Disease path, so they finally ruled that out.He's been too sick&weak to go very far or try 'every dr in the book', though we kids have tried to push for 2nd opinions & Geriatric 'experts' in NYC etc. The problem/resistance is as much between my dad/stepmom, as between the local unknowing medical Drs. Now new Dr wants to focus on Parkinson's, Lyme disease, & hopefully the diabetes. Still not>>B12! :mad: Truly criminal, don't you think? Finally last month we got them to allow a naturopathic Dr to see him; and, based only on his high MCV/MCH etc hematologies, she immed. diagnosed severe B12 def., pernicious anemia, & urged B12 shots ASAP, as well as bringing the untreated diabetes again to light. W/o further testing lst, she started him 3-4 wks ago on: FolaPro (5-methyl tetrahydrofolate) 1/day; Activated B6 as P5P50, 2/day; Super B-complex, 2/day; and recommended B12 IM, 1cc/day for at least 7 days,(perhaps even 14 in his case) and then 1 inject./wk for a month, etc. At this point, I went into OT intensive study, learning from this site, others, +your book that he indeed has virtually every symptom for B12 defic., PA, whether irreversible over such a long time is anyone's guess. By last Mon, he was up & the best I had seen him in ages, had even gone to 2 sessions of exercise class!! after 3 wks of the above supplements. However, very unfortunately, that Mon. pm I upset my father & stepmom terribly with an over the top outburst of anger, frustration & too much wine to boot, at being called presumptuous, hysterical, no credentials, no knowledge, & their also saying the Naturopath has no real med.credentials, "how can we poss. know he's better just because of her advice", etcetc.They would never consider a malpractice suit at this point. So now he has suffered a real setback & is back in bed fulltime>my fault. My whole rest of family has put the lid on any discussion of or further meddling into his health, & we are having to leave him & stepmom to their own devices & MD's. I've been forbidden to interfere any further. I did try to lobby for a urine sample to send to Norman Labs for the uMMA before the shots were started (still don't think they even yet have been!), but was unable to accomplish due to circumstances. The bloodwork just taken did include Hcy due to recom. of the naturopath, tho Dr said it won't be accur. bec. of supplements; also testing for Lyme Western bloc, lead, A1C, folate, urine culture. Of course MD didn't recommend the MMA test or acknowledge anemia. And when the test results come back, they won't be interpreted correctly on top of everything else bec. of what you have spelled out as the skewing of results.Can you believe this story?? ....unfortunately, I'm sure you can... Perhaps I'm overly biased by believing in a naturopath's abilities, by my internet studies & am presumptuous or wrong, so that's why your feedback would be so appreciated & timely at this juncture, if poss. I realize time is of essence for Dad's proper, continued treatment & then he might just have a chance.... but we are in a predicament here of everyone's making, my hands are now tied, I don't know what to do. Let it go? Pray & trust that the MD's will miraculously 'get it' & do the right thing in the next few weeks? Figure it's just dad's karma to die like this? Hope that if he ever gets the B12 shots he'll rally so noticeably that no one can deny that's all it ever was? I don't yet have an organized plan of how to proceed w/ all the books I ordered, but do plan to send them around to family&friends, hope to heck they'll read, & also would like to anonymously send one to each MD involved in the care of my father, hoping THEY'll read it! But seriously, would most like to do in an appropriate manner ASAP so as to really reach the most relevant health professionals, give the message & information the best chance at being heard & believed to make real change happen. So as not to ramble further & apologize++:( for length, I would most appreciate feedback/suggestions. With blessings & many thanks ~your book & this forum has really made a difference~ nlbstj
    NlbStJ 4 Replies Flag this Response
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  • Hi Sally, I recently joined & have read most of your book in an attempt to educate myself so that I can: 1) advocate for my 82yr old father who has been very ill for over 2 yrs. and slipping gradually before that. 2) learn how to advocate for your information & book, and 3) try to credibly, intelligently & tactfully approach the MDs who are responsible for missing this B12 help in my once wonderful, intelligent father's life thus far. To that end, QuillDriver Bks was very kind in giving me a disc. for 25 books which I intend to send out to everyone involved, but would like advice lst & an organized approach in how to be a proper B12 PR / Patient Advocate. I'd love to set up a number of lectures for you on East Coast/New England if I knew how to proceed-- I can approach your publicist /would need further suggestions... tell me, what can I do? I feel very determined about this.... I think it is utterly criminal what is happening in this epidemic of missed B12 deficiency diagnoses, what has happened to my father & so many others. Psychiatrist's assessment & plan 03/06/07:"An 82yr old man w/ history of depression now presents w/depression, withdrawn affect & vegetative symptom of anorexia w/over 10lb weight loss. Labs are signif. for a mild anemia, low normal folate + B12. Patient appears undernourished. I suspect pt's anemia is multifactorial w/component due to nutrit.def. 2nd to anorexia from depression. I see no medical contraindic. in patient receiving meds already prescribed incl. Megace, Wellbutrin, Xanax, Ambien, Namenda, Aricept, Prozac, Zocor & Synthroid. Nutrition should eval. to see if benefit from any supplementation. If pt. observed to have difficulty ambulating, recommend occ. & phys. therapy evaluate for ambulation safety. His complaints of dizziness may be due to weakness and debilitation. Dr. F. neurol. will be also evaluating for any neurol. component to pt's symptoms."NO mention in earlier reports re anemia, no suggestion for B12, or follow-up w/ "Nutrition".] For about a year, Dad's been now in bed 22 of 24 hrs, a virtual invalid; in pain from the 30yr mystery ailment in his right side; memory loss/"dementia"; depression, some suicidal ideology, a few hallucinations last yr; cold all the time; neuropathy; 10-25lb weight loss over last 2 yrs; lesions in mouth & gums> attrib. to denture problems (but no beefy red tongue I know of); constipation treated w/meds; an indescribable dizziness/ vertigo/ brain?-something; increasing weakness, not surprisingly; motor problems> a slight shuffle; small tremor sometimes in hand, worse in legs; 2 recent falls in the bathroom, & a very,very bad fall over a yr ago in a restaurant parking lot attributed they think to a raised edge on walkway, or possibly they wonder, a TIA; 3 bouts of weeklong (!)admission into the Senior Behavior Center of Sharon (CT) Hospital for observation, tests, feeding; MRI's show small white matter abnormalities. In short, a total failure to thrive, and they all have given up, call him a total mystery!Over 2 yrs, nothing but dead ends from his MD's, every CT, MRI, every test (no tests you suggest were given exc. B12/folate only a couple times), the latest push from his psychiatrist was for ECT (shock treatment) for his depression & malaise! His symptoms have not followed the Alzheimer or LewyBody Disease path, so they finally ruled that out.He's been too sick&weak to go very far or try 'every dr in the book', though we kids have tried to push for 2nd opinions & Geriatric 'experts' in NYC etc. The problem/resistance is as much between my dad/stepmom, as between the local unknowing medical Drs. Now new Dr wants to focus on Parkinson's, Lyme disease, & hopefully the diabetes. Still not>>B12! :mad: Truly criminal, don't you think? Finally last month we got them to allow a naturopathic Dr to see him; and, based only on his high MCV/MCH etc hematologies, she immed. diagnosed severe B12 def., pernicious anemia, & urged B12 shots ASAP, as well as bringing the untreated diabetes again to light. W/o further testing lst, she started him 3-4 wks ago on: FolaPro (5-methyl tetrahydrofolate) 1/day; Activated B6 as P5P50, 2/day; Super B-complex, 2/day; and recommended B12 IM, 1cc/day for at least 7 days,(perhaps even 14 in his case) and then 1 inject./wk for a month, etc. At this point, I went into OT intensive study, learning from this site, others, +your book that he indeed has virtually every symptom for B12 defic., PA, whether irreversible over such a long time is anyone's guess. By last Mon, he was up & the best I had seen him in ages, had even gone to 2 sessions of exercise class!! after 3 wks of the above supplements. The bloodwork just taken did include Hcy due to recom. of the naturopath, tho Dr said it won't be accur. bec. of supplements; also testing for Lyme Western bloc, lead, A1C, folate, urine culture. Of course MD didn't recommend the MMA test or acknowledge anemia. And when the test results come back, they won't be interpreted correctly on top of everything else bec. of what you have spelled out as the skewing of results.Can you believe this story?? ....unfortunately, I'm sure you can... Perhaps I'm overly biased by believing in a naturopath's abilities, by my internet studies & am presumptuous or wrong, so that's why your feedback would be so appreciated & timely at this juncture, if poss. I realize time is of essence for Dad's proper, continued treatment & then he might just have a chance.... but we are in a predicament here of everyone's making, my hands are now tied, I don't know what to do. Let it go? Pray & trust that the MD's will miraculously 'get it' & do the right thing in the next few weeks? Figure it's just dad's karma to die like this? Hope that if he ever gets the B12 shots he'll rally so noticeably that no one can deny that's all it ever was? I don't yet have an organized plan of how to proceed w/ all the books I ordered, but do plan to send them around to family&friends, hope to heck they'll read, & also would like to anonymously send one to each MD involved in the care of my father, hoping THEY'll read it! But seriously, would most like to do in an appropriate manner ASAP so as to really reach the most relevant health professionals, give the message & information the best chance at being heard & believed to make real change happen. So as not to ramble further & apologize++:( for length, I would most appreciate feedback/suggestions. With blessings & many thanks ~your book & this forum has really made a difference~ nlbstj[/quote Yes, I would love to work with you to educate others regarding vitamin B12 deficiency. Contact Andrea Wright at Quill Driver Books (800) 497-4909 and she will put you in touch with me. Yes, unfortuantely it sounds like your dad had a B12 deficiency for some time. Simple clues (low range 303pg/ml, elevated MCV)----- even if he didn't have these with all his symptoms---this should of led them to run a MMA--- I am really shocked how the medical community does not know about MMA. Hcy is nice to test for too--- but it can also be elevated in folic acid deficiency, B-6 deficiency, renal failure, hypothyroidism. Because your dad is malnourished--- his B12 of 303 could be at this level if he ever got MVI in an IV solution for nourishment. If they ever gave him a multi-vitamin the B12 test can pick up analogs--reporting out a higher serum B12 level. (as you have read--many factors can alter this). Because your dad had all the recent B12--- his uMMA test will be altered. It is proof that your father responded to the B12--- shows that the form he was given--- he responded to---- yes a round of shots would still be in order--- along with the high-dose supplements in-between. Perhaps you could send your dad-- or let him read that B12 deficiency--- is a disorder that MD's should test for and treat. Remind him of the epidemic in the late 19th century and early 20th century where people actually died from this disease process--- that they even won the Nobel Prize in medicine and physiology for it's discovery by Minot, Murphy, and Whipple. This isn't a holistic doctor's diagnosis or voo-doo---just a disorder that has been overlooked, ignored, and commonly misdiagnosed--- that doctors are failing to look for, and often times are barking up the wrong tree--- and placing patients on numerous meds, compounding their problem--- and allowing the deficiency to worsen causing injury and/or death. Looking forward to talking with you and working with you! You could also send your dad and step-mom an excellent article in a recent medical journal called "Geriatrics" that made the cover discussing vitamin B12 deficiency (March 2003). Too bad most of the medical community didn't read this--- it is an excellent overview---it may prove to your dad or step-mom---- that this is real and all MD's must get reeducated. This really is a public health issue----they should be doing MMA's at Project Healthy Living or Health-O-Rama's. Medicare and insurance companies pay for MMA testing just like any other lab test---that the doctor deems needs to be done. The problem is the medical community needs to be reeducated. There should be clinics to test people who are in need --- in the long run--- it would be saving billions of dollars and more importantly millions of lives. Sally
    Anonymous 42789 Replies Flag this Response
  • This is very interesting. I have had just the B12 serum testing done...not the other as you mentioned and since it was so elevated my doctor thinks I am fine. I suffer from fatigue but its blamed on long hours (I work for a doctor in the business end of it) so have 10 hr days. Even with that test being so high I can tell almost to the day when a month has gone by without a B12 shot. ...with Valerone in it. I have dizziness a lot, don't actually fall but run into things a lot, heart rate runs low but now in the 60s sometimes as low as 50, then have systolic hypertension.Would I have other symptoms if was needing the other B12 testing? or do you think I fit your description even close?I could write the order for it to be done if you think so.
    agypsygrl 79 Replies Flag this Response
  • The B12 test is nice to look at, and can diagnose some people, but not all. This is why if a patient is symptomatic for B12 deficiency the MMA and B12 should be done together. It saves time getting an accurate diagnosis-saves time in getting treatment-it saves you a trip back to get the MMA, and it is more accurate using together. Your doctor may not know what MMA is--- or may need to read up on it. "Regular B12 bloodwork", if your doctor means just a B12 and complete blood count (CBC) he/she needs continuing education and is at high risk of misdiagnosing many of his/her patients. SallyHi Sally, I got my lab results today and the B12 level was 714-which the doctor said was well within normal. Does this high a level mean that I probably don't have a deficiency? My feet are tingling like crazy and I have some of the other symptoms (fatigue, dizziness). Not sure where to go from here, any ideas? Thanks!!
    Anonymous 42789 Replies Flag this Response
  • Hi Sally, I got my lab results today and the B12 level was 714-which the doctor said was well within normal. Does this high a level mean that I probably don't have a deficiency? My feet are tingling like crazy and I have some of the other symptoms (fatigue, dizziness). Not sure where to go from here, any ideas? Thanks!! Your doctor needs to check your out for thyroid disorders (including antibodies), Lyme disease, herniated disc, chronic fatigue, etc. You should still have the MMA. If other disorders are ruled out--- I would still ask for a round of B12 injections and see if they help-- but I would use hydroxocobalamin. Compare it to trying a round of Neurontin or Cymbalta that are oral drugs that they can use for neuropathy. If you are taking oral B vitamins or a multivitamin it can alter the serum B12 test. A B12 in the 700's will typically not give an elevated MMA. But I have seen it happen. If they cannot find a reason for your symptoms ask for a therapeutic trial of B12--- ask to be taught how to give the injections. Could even ask for a prescription of Metanx--- it is oral methyl-B12, Folic acid and B6--- and see if any change in 4 weeks. Sally
    Anonymous 42789 Replies Flag this Response
  • This is very interesting. I have had just the B12 serum testing done...not the other as you mentioned and since it was so elevated my doctor thinks I am fine. I suffer from fatigue but its blamed on long hours (I work for a doctor in the business end of it) so have 10 hr days. Even with that test being so high I can tell almost to the day when a month has gone by without a B12 shot. ...with Valerone in it. I have dizziness a lot, don't actually fall but run into things a lot, heart rate runs low but now in the 60s sometimes as low as 50, then have systolic hypertension.Would I have other symptoms if was needing the other B12 testing? or do you think I fit your description even close?I could write the order for it to be done if you think so. I don't know what "Valerone" is. If you are getting B12 shots already--- testing with the MMA will be normal. If they are mixing your B12 injection with something else-- make sure you are getting 1,000 mcg and they are not giving you only 100mcg. In addition, some people need B12 injections every 2 weeks verses every 4. Regarding your heart rate being 50 or 60---- you should be seen by a cardiologist--- and you are having dizziness which can be a cardiac issue---- you need a Holter monitor that stays on you for 24 hours to see what your heart is doing--- it may get low in the 40's and enough blood is not pumping up to your brain ---giving you dizzy spells. You may be on some heart medication which slows the heart rate--- and this is what your doctor wants it to do-- but you should be seen by your cardiologist. You can also get dizziness from your BP not being in control, and you need a carotid doppler to see the blood flow of your carotid arteries--- to see if there is any narrowing--- which can also cause dizziness. If these are all normal you will need a CT of the brain or even an MRI. B12 deficiency can cause dizziness--- but so can a lot of other disorders. You can get the MMA test--- but if you are getting B12 injections--- it will be normal. If you feel better getting frequent injections then go every 2 weeks verses every 4, but you must have the other conditions checked out. Sally
    Anonymous 42789 Replies Flag this Response
  • Thanks for the reply. The Valerone is a hormone mixed in with the B12. Several years ago i was tested and had zip hormone level and was having panic attacks. I know I have a history of a sensitive inner ear also could be the dizzy spells but the fatigue is what is really so bad. All other lab work has been normal. The internal doctor didn't mention hearing any bruits in the carotid area so guess they were ok. Haven't had a MRI in a long time though on brain. Just checked on drugs.com and saw where a lot of my symptoms could be due to interactions of most all my medicines that I take plus fatigure, nausea, dizziness etc. Thinking about stopping what I can and then adding back one at a time if have to and see if can tell the worst one.I go back in May to the internal doc, he was not happy the way I looked as to "exhausted" so at least he showed concern too. Thanks again for the post
    agypsygrl 79 Replies Flag this Response
  • 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 One other thing--- of course your doctor doubts your symptoms have to do with B12 deficiency. He/she doesn't want a malpractice suit. The simple fact you were on a drug that induces B12 deficiency over time (PPI)-- can explain it--in of itself. Interesting--- how they test you ----for the MMA and Hcy----after you start taking high dose B12---- it screws up the tests. They are covering their tracks. They you respond to the Metanx---which again supports the B12 deficiency. Then you respond to the injections---- and they try to make you think that it is placebo effect or you are psych. Your serum B12 in the low 300's is low--- and I have seen many elevated MMA's with serum B12's in the 300's. Your MCV of 96 could be lower like this if you had a co-existing iron deficiency-- and your ferritin is below 50. So if your doctors tells you it can't be a B12 deficiency because you weren't anemic or macrocytic--- copy the section of the book that explains it--- and give it to them as a gift. The MCV is a mathematical calculation and will be normal when a B12 deficiency and iron deficiency co-exist. The MCV will also be normal if there is enough folic acid in the diet or if supplements are taken--- for it masks the enlarged cells---shrinks the big cells down-- to a normal level--- which is why doctors should not be going by the MCV solely--- this is how they misdiagnose a lot of people. The elderly are at greater risk--- because many cardiologist place their patients on high dose folic acid 1mg--- and it will bring down the MCV. People too, on their own take high dose folic acid for health--- which there is nothing wrong with this--- it is just don't forget about the B12. In addition, in 1998 they fortified grains and cereal with folic acid in the U.S. to help prevent birth defects---- therefore--- U.S. public is getting enough folic acid--- so we have to be more aware of B12 deficiency--- and reeducate the medical and health care community regarding looking at the MCV to think B12 deficiency. I had an 89 year old woman--- who was macrocytic on the weekend and her chief complaint was "dizziness"--- do you think they tested her--- of course not. So even though patients have the "old classic" signs for B12 deficiency----physicians don't think B12 deficiency. The intern who wrote her orders---- ignorantly and arrogantly told me that it was not B12--- (how did he know--- did he have super powers?)--- he told me it was more than likely from her drinking--- oh---an 89 year old alcoholic-- doing pretty good to make it to 89 being an alcoholic--- he assumed this. I proceeded to ask him--- what makes an alcoholic macrocytic----then when I caught him in a corner-- he stated he knew all about B12 deficiency (obviously not) and that she was more than likely dizzy because of an old stroke in her brain----he had an answer for everything--- he told me that they work people up for emergent conditions-----like B12 deficiency isn't--- and it is low priority. Then he proceeded to tell me that he was going into orthopedics and that he didn't have to be concerned with such silly things. First of all, he was doing a medical admission--- not playing orthopedic doctor yet. And more importantly, because he was going into orthopedics--- he should be aware that all his elderly patients that come in for broken bones and hips froms falls---many of them will be caused from undiagnosed B12 deficiency---- but he was too arrogant and too ignorant. Luckily--- I discussed the case with an ER physician who is up to date--- and readily will order the needed tests-- and we tested her. Her results are pending. She may not have a B12 deficiency--- but she is symptomatic---- and deserves to be tested! Sally
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  • I'm not Sally, but the short answer to your question is yes. I highly recommend a book on Celiac Disease by Dr. Peter Green. He explains how gluten affects the intestines in people with celiac. The consequence of the damage to the intestine is that there can be malabsorption of minerals and vitamins like B12. On the bright side, apparently, most celiacs who eliminate gluten heal their intestines and they eventually can absorb vitamins and minerals. There are a number of websites like celiac.com where you might be able to find useful information.I have read books on celiac disease--- but never came across the oligoclonal bands as false positives, which is extremely important to know--- for patients diagnosed with MS--- for they may have celiac disease. Yes, I know celiac disease causes B12 deficiency-- and we describe that well in our book. The problem is --- doctors who finally diagnose celiac disease-- often times tell patients that the intestinal mucosa will rejuvenate (which it will in time) BUT--- because of the numerous nutritional deficiencies (one of them being vitamin B12)--- this must be treated aggressively if the serum B12 is low or MMA high---- reason being--- is B12 deficiency causes nerve damage and demyelination---- which has to be taken seriously---- and treated. It makes NO sense to let the body start absorbing B12 from foods once the intestinal lining rejuvenates--- because #1 (how long will that take?--- several months----- and #2-- if the person has a documented deficiency--- the patient's B12 stores have to be replenished--- it would take years to build up --once the lining heals--- and one would never catch up to refill the body stores of B12 without intervention with shots and high-dose B12 lozenges. People who are treated this way are in poor health, take longer to recover, and are apt to suffer permanent neuro damage. One must treat the B12 deficiency--- along with letting the mucosa heal-- and strict adherence to a gluten-free diet. I had a case like this --42 year old male--- had to argue with his gastroenterologist regarding placing him on B12 shots--- it was one of the nurses aides husbands that I work with. After she read our book, she asked us to test him, "I know my husband has a B12 deficiency--- he has all the symptoms". We tested him--- and she was right! He had been seeing a gastroenterologist for years, numerous ER visits, and primary care doctor visits. His urinary methylmalonic acid was significantly elevated--- the cause of his B12 deficiency turned out to be celiac disease--- and they never checked this man for B12 deficiency--- even though he had numerous signs and symptoms of B12 deficiency (you see the B12 deficiency aided the doctor to explain the B12 deficiency)--- and then they told him--- Oh you will start absorbing B12 again, once you stay away from gluten. Not treating his existing documented B12 deficiency and numerous signs and symptoms (anemia, fatigue, weakness, dizziness, paresthesias, pallor, leg pains, depression) this is absurd. By giving him the B12 -- it corrected his deficiency and gave him a significant jumpstart back to health. My co-worker won the fight--- and the GI doctor gave in and started B12 injections.After his series of shots, ---he was a new man. (BTW-- he was on anti-depressants for years)----has been off them now for way over a year.Sally
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  • I'm curious after reading this thread about vitamin b12 def. I've been seeing a neurologist because of dizziness, fainting, headaches, tremor numbness and tingling. I have not really got any answers from him yet, in the last 5 months. Other then i had an inner ear problem for 5 months and then he thought i might be depressed. Anyways last week when i went back (i had blood work done a few weeks ago) he said my vitamin b12 was a low normal at 286. So he wrote me a prescription for metanx, 2.8mg i'm suppose to take one a day. He said it may help a little bit, he does not act like the vitamin b12 is the "real" problem though. I mean i don't know if it is or not and i just found out about vitamin b12 def. I don't know if 286 is low or normal but i just noticed alot of talk about injections and i was wondering is 286 low? If it is a possible vitamin b12 problem is metanx enough to help? Thanks Ashley
    anw6943 2 Replies Flag this Response
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