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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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  • Yes, you had a vitamin B12 deficiency that went on for some time to get neurologic signs and symptoms. Elevated methylmalonic acid (MMA) in the blood or urine means you have vitamin B12 deficiency. Could be you have autoimmune pernicious anemia. You are lucky that you had an elevated mean corpuscluar volume (MCV) or your red blood cells--- because it finally gave one of your doctors to check for vitamin B12 deficiency. This is a common error--- doctors think that people have to have an elevated MCV and anemia to think B12 deficiency, but that is a mistake, because at least 1/3 of patients exhibit neurologic manifestations well before MCV elevation or anemia presents. This is extremely important for physicians to get reeducated because if the B12 deficiency goes undetected or untreated for too long, there may be permanent neurologic injury. Your neurologic injury will not progress--- once you get treatment you will either be the way you are now--- or you can improve. After 6 months to 1 year of aggressive treatment--- you basically will be where you are at. It depends how long you were deficient, some people get total reversal of symptoms, and others get 25%, 50%, 75% improvement, and yet others get no improvement. There are people that have been misdiagnosed that are permanently crippled in wheelchairs or use specialized crutches to ambulate. Others it affects their mentation, and some have permanent cognitive problems--- others dementia. You should ask your doctor to prescribe you a 30ml vial of Hydroxocobalamin and have them teach you to self inject (just as diabetics learn) you too can learn how to give yourself a shot--- or have a family member learn. Maybe this is why they won't give them more frequent to you. The B12 lozenges you are taking make sure they are methylcobalamin (this form the body does not have to convert) and I would take 5,000 mcg 12 hours apart--- and see if this helps. You stated you were diagnosed in November, so you are 4 months into therapy--- you are trying to reverse as much damage as possible. Remember, if you are left with any lasting signs and symptoms---- you have a malpractice case. B12 deficiency should never get to the state of causing permanent injury or chronic paresthesias or pain. You will learn this from the book. If you were going to a doctor complaining of these symptoms and no one checked you, they are liable. If you were high risk for B12 deficiency for a variety of reasons and no one checked you (meaning ordering appropriate blood work--- B12, MMA, homocysteine, gastrin--- for a start) they are liable. This is why we wrote the book, to prevent poor health, injury, disability, nursing home placement, and even death. America's medical community must wake up regarding this disorder. It has been written about for over a century--- but somehow they have forgotten this easily diagnosed and easily treated disorder. In fact, in 1934 Minot, Murphy, and Whipple shared the Nobel Prize in Medicine regarding the discovery of vitamin B12 as a cure. It was also called pernicious anemia (meaning deadly anemia) because there was no cure and people died from this. The average person wouldn't think a little vitamin could kill you---- but it can. By the way, your homocysteine (Hcy) will be normal once you start receiving treatment (so ordering a Hcy after having B12 injections is useless) your Hcy should be normal now--- and it is as you stated. Hcy can be elevated for untreated thyroid disorder, renal insufficiency or failure, vitamin B6 deficiency, vitamin B12 deficiency, or folic acid deficiency. MMA elevation is specific for B12 deficiency and not the other B vitamins. You are another testimonial as to how B12 deficiency is commonly overlooked and undiagnosed causing neurologic injury. Hopefully in your case it will be reversable. All diabetics diagnosed with diabetic neuropathy must have MMA and Hcy testing along with the serum B12--- always as a series of tests together to aid in early diagnosis. Many diabetics have an undiagnosed B12 deficiency which their doctors just ASSUME that the neuropathy is caused by their diabetes. The only way to know for sure is to test their patients.
    Anonymous 42789 Replies Flag this Response
  • You have to insist on a MMA and homocysteine test. Find out what your serum B12 level was. Doctors mistakenly state that your B12 is "normal" if it falls within the labs accepted range. But, many patients who fall under 400pg/ml have found to be deficient by ordering the MMA and Hcy test. Your symptoms absolutely sound like B12 deficiency, but you also could have some other neurologic disorder (like MS)--- but don't forget MS and B12 deficiency have similar signs and symptoms and are both demyelinating diseases. Doctors also mistakenly believe that a patient has to be anemic (low hemoglobin/hematocrit) and/or macrocytic to suspect B12 deficiency---- this is untrue. If you have had any B12 pills high dose (or injections) or sometimes even injections of steroids can screw up the lab tests. Before you start taking high dose B12 on your own--- you must get the tests to see if you really have it--- because if you do---- then you have a diagnosis and they aren't going to be guessing and putting you through other tests. It also will dictate how you are treated (series of injections--- etc.) and that this is life-long. Also, if you are found to be truly B12 deficient, then your doctor has to find out why--- autoimmune disease (pernicious anemia), malabsorption problem (ie celiac disease) etc. BTW: Lhermitte's sign is also a sign of B12 deficiency.Your doctor must properly rule out B12 deficiency--- because B12 deficiency has a treatment--- and neurologic injury can result--- I'm sure your doctor doesn't want to injure you or have a malpractice case against him/her if you prove to have a B12 deficiency. All it is --- is simple screening/testing, just like they screen for thyroid disorders or diabetes, you need to be screened for B12 deficiency with more sensitive tests. Time is ticking. Many patients that have contacted me regarding their diagnosis and misdiagnosis --- have used our book as leverage--- to get their doctors to test them--- kind of sad, but whatever you got to do. An excellent journal article to refer your doctor to is from Post-Graduate Medicine ---July 2001 (2001;110(1);99-105. Titled: Approaches to vitamin B12 deficiency: Early treatment may prevent devastating complications. By: Dr. T.S. Dharmarajan. They can download it for free--- you can too. Discusses MMA and homocysteine. You being only 28 years old--- probably makes them not think vitmain B12 deficiency, but many young adults have B12 deficiency for a variety of reasons--- but I am proud that they at least did a serum B12 ---- but it is not good enough.You can contact me via my publisher if you need help: (800) 497-4909
    Anonymous 42789 Replies Flag this Response
  • Hi Sally-I just finished your book. I wanted to be prepared when I get back the results of my b12 serum blood test. Here's my story--in a nutshell.Was diagnosed with low thyroid and a goiter about 5 years ago. Have been suffering from what I thought was "restless" legs for quite some time and I've been taking Requip at night to help with the severe aches in my legs. Over a year ago, I had 3 metetarsal fractures in my left foot.( for no particular reason) Had a boot cast for almost 12 weeks because they weren't healing very well. Also started having nerve problems and a lot of pain. Podiatrist diagnosed me with RSD, because of the hot and cold, color changes and shiny appearance of my foot.Went to a neurologist who did Emg and said I had peripheral neuropathy. I started doing water therapy in my hottub which seemed to help. The week before I was set to go back to work ( I was a n outside sales person and couldn't do my job ) I was walking slowly and felt a sharp pain in my right foot. Went immediately to get an xray which showed alot of fluid and nothing else..had an mri done ..still just fluid..was told it was probably lupus and to see a rheumitologist. He ordered a string of urine and blood work including a bone scan and bone density. No lupus or osteoperosis, but did find a fracture in right foot that was just begining to heal. Then went to an ortheopedic who said it was my back and sciatica. Not so, said the back dr. it's probably Marie-Charcot-Tooth disease and to see a Neuro on the university teaching level. Went to U of Penn to see expert on peripheral neuropathy. He ruled out any large nerve damage and did glucose test for diabetes. Not diabetes, but mentioned, almost offhand that my b12 is in the low normal range and ordered MMa ( but not urine test)My symptoms are these:Severe pain in calves and feet--feet feel like they have broken bones. When I wake up in the morning, I shuffle to the bathroom because it feels like walking on sharp rocks.Shooting pain and numbness-especially in morning, in hands up to elbow.Awkward gait and balance--tend to veer off course when walking.Pain and achiness after doing any physical exercise, even walking around the block.Breathlessness.Fatigue.Weight gain--this is where I don't seem to fit the mold. But I've been eating alot ( I'm a good cook and have always loved to eat) and haven't been able to work out because of injuries. I'm also depressed.Memory loss I attributed to "old age"--I'm 45.Unfortunately, I like to drink wine.Two to three glasses. Everyday. Does this make me an alcoholic? I've been to so many doctors who don't seem to know a thing, and am getter physically and emotionally worse. I feel like a complainer all of the time. Four years ago, I was a personal trainer with 14% body fat. Now, I'm a fat shadow I what I used to be--in pain all of the time, tired, and seemingly, losing my ability to even walk anymore. When I try to start even the lightest workout, I'm in so much pain the next 2 days, I've been fearing any exercise at all. What do you recommend I seek as far as more testing? I know you can't determine until my test comes back, but have you ever heard of the symptoms that I have been experiencing? That you so much for you book and your time...
    ladycooks 3 Replies Flag this Response
  • Help! I am so frustrated I am ready to cry. I’ve been trying to get a diagnosis for close to six months now and still know next to nothing. My doctor is very uncommunicative.Here are some of my symptoms: I get thirsty even though I drink plenty of water (thirstier at night). I get pins and needles in my legs (usually at night), get occasional cramps in my calf, though not lately (usually at night), get stiff and occasionally painful knees, on and off i get a kind of weakness around my pelvis ligaments or muscles, get brain freeze (suddenly can’t remember a word or name), get very tired (usually in the afternoon is worst), get lightheaded (early afternoon right after lunch is worst). I frequently get lots of gas and occasionally indigestion and constipation. The skin on my face has been broken out for many months now and I used to have great skin. I take Claritin for my hayfever, but I have been having getting red welts and swelling in response to bites from even the tiniest bugs -- Benadryl helps, but makes me even more tired. First the doctor tested my blood for diabetes and it was negative. She also said I was not anemic. She then tested my blood for B12 and she said it was a “little low,” but I think it might even have been in the “normal” range. Then, she ordered a bunch more more blood tests, but didn’t tell me what they were or why she was ordering them. I’m not sure what they all were, but the person who took my blood said that one was for homocysteine and one for “autoimmunity” or something like that. There were more, but I don't know what they were for. These tests all came back “normal.” If my homocysteine level is normal, does that mean that my B12 levels necessarily are okay and I don’t need to do a urinary test? I’m a little freaked out because my maternal grandmother had MS and my father had a B12 deficiency and a stroke in his early fifties. (I’m 41). I have a history of sort of low blood pressure and a very active autonomic nervous system (or something like that). Plus, I’ve gained about 30 pounds in the last few years (I’m at about 165). But, I doubt that can explain all my symptoms.I’m seeing my doctor again on Tuesday. Can you please suggest tests or questions I should ask of her? Any advice would be very, very much appreciated.I’ve also got an appointment with an allergist coming up the following week. Maybe he can come up with an explanation. Any suggestions for questions or tests from him?Thanks!P.S. I went to multiple bookstores in search of your book, but couldn’t find it, and have now ordered it from Amazon. Thank God for the Internet!
    Anonymous 42789 Replies Flag this Response
  • 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
  • Help! I am so frustrated I am ready to cry. I’ve been trying to get a diagnosis for close to six months now and still know next to nothing. My doctor is very uncommunicative. Here are some of my symptoms: I get thirsty even though I drink plenty of water (thirstier at night). I get pins and needles in my legs (usually at night), get occasional cramps in my calf, though not lately (usually at night), get stiff and occasionally painful knees, on and off i get a kind of weakness around my pelvis ligaments or muscles, get brain freeze (suddenly can’t remember a word or name), get very tired (usually in the afternoon is worst), get lightheaded (early afternoon right after lunch is worst). I frequently get lots of gas and occasionally indigestion and constipation. The skin on my face has been broken out for many months now and I used to have great skin. I take Claritin for my hayfever, but I have been having getting red welts and swelling in response to bites from even the tiniest bugs -- Benadryl helps, but makes me even more tired. First the doctor tested my blood for diabetes and it was negative. She also said I was not anemic. She then tested my blood for B12 and she said it was a “little low,” but I think it might even have been in the “normal” range. Then, she ordered a bunch more more blood tests, but didn’t tell me what they were or why she was ordering them. I’m not sure what they all were, but the person who took my blood said that one was for homocysteine and one for “autoimmunity” or something like that. There were more, but I don't know what they were for. These tests all came back “normal.” If my homocysteine level is normal, does that mean that my B12 levels necessarily are okay and I don’t need to do a urinary test? I’m a little freaked out because my maternal grandmother had MS and my father had a B12 deficiency and a stroke in his early fifties. (I’m 41). I have a history of sort of low blood pressure and a very active autonomic nervous system (or something like that). Plus, I’ve gained about 30 pounds in the last few years (I’m at about 165). But, I doubt that can explain all my symptoms. I’m seeing my doctor again on Tuesday. Can you please suggest tests or questions I should ask of her? Any advice would be very, very much appreciated. I’ve also got an appointment with an allergist coming up the following week. Maybe he can come up with an explanation. Any suggestions for questions or tests from him? Thanks! P.S. I went to multiple bookstores in search of your book, but couldn’t find it, and have now ordered it from Amazon. Thank God for the Internet! The methylmalonic acid test (MMA) is specific for B12 deficiency, and is elevated when B12 deficiency exists. Homocysteine also rises when one is B12 deficient, but it also rises in folic acid deficiency, B-6 deficiency, hypothyroidism, renal failure or insufficiency. So your doctor needs to do the MMA test. I have seen people with normal homocysteine but elevated MMA. It is interesting that your dad had a B12 deficiency. It could be that your family has undiagnosed celiac disease--- which could cause a B12 deficiency. Did your dad ever get a reason or diagnosis of why he was B12 deficient? Yes, your symptoms could be MS--- but it could be B12--- and you did have a low value--- ask your doctor what it was. Sometimes doctors make the mistake that if your antibody tests come back negative (intrinsic factor and parietal cell antibody) then you don't have a B12 deficiency---- this is wrong--- for there are many reasons a person can have a B12 deficiency. Since you have constipation, weight gain---- I'm sure they checked your thryoid (with thyroid antibodies). Celiac disease (gluten enteropathy) can cause constipation, fatigue--- from numerous nutritional deficiencies. Your adrenal glands should be checked out. At least your doctor checked out your B12 and is doing further tests--- that is great----just make sure the MMA test and serum gastrin (blood test) was also done.In a previous communication, I wrote about celiac disease and the IgG and IgA antibody tests that need to be done, along with stomach and small intestine biopsy. Your father having a B12 deficiency and then having a stroke is because untreated B12 deficiency causes elevated homocysteine (Hcy)--- (hyperhomocysteinemia) which causes early vascular disease (strokes, heart attacks, pulmonary embolism, DVT's), because excess Hcy causes your blood vessels to lose their elasticity, making it harder for them to dilate, and damaging their inner lining. That damage, in turn, allows cholesterol, collagen, and calcium to attach to the inner walls of your blood vessels, where they can from sticky deposits called atherosclerotic plaques.Your doctor needs to test your adrenal glands, cortisol levels and antibody for the adrenal gland--- check you out for Addison's disease--- which is an autoimmune disease. Make sure your doctor did the MMA test before anyone gives you a B12 injection. Also, you do not have to be anemic to have a severe B12 deficiency---- a common misconception amongst health care professionals. Sally
    Anonymous 42789 Replies Flag this Response
  • 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
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  • PLEASE HELP! (sorry for the length of this post but I don't want to leave anything out they may be important for helping my daughter) My daughter Bella is 5 years old and was recently diagnosed with mild B12 deficiency believed to be caused by longterm use of Prevacid. Bella has silent GERD and had been on Prevacid since she was 9 months old until we recently took her off this past November 2006 and started to treat her with Nascobal Nasal Spray 500mcg Cyanocobalamin in each nostril once every 4 weeks. Her uMMA was at 5.3 and three months after treatment went down to 3.8. We are continuing to stay off Prevacid so far only using Gaviscon on occassion and continue with the Nascobal nasal spray. My daughter's symptoms before diagnosis was complaining of hot feet (see below for background information that led to correctly diagnosing my daughter). Since treatment she rarely complains of hot feet anymore but she still complains of hot hands sometimes, though that seems to have gotten better too, but now she complains of hot eyes, often licking her fingers and touching her eyelids to "cool them down". On two occassions she said her her neck was hot and licked her fingers to touch the area to cool it down. She says no pain just hot feeling that lasts for a minute or so. Should I be concerned???? Her uMMA is going down and some improvement in symptoms but then again she has the new symptom of the hot eyes and an occassional hot neck? I thought maybe it could be an awakening of nerves since her B12 is getting close to within normal range? Is that possible? Her doctors think she should not be subjected to shots since her uMMA is coming down and some of her symptoms are improving. But I just want to be sure I am doing the right thing? Her doctors don't know very much about B12 deficiecny or the uMMA and I have cited alot of information I read in "Could It Be B12" to them just to get them to diagnose her properly, so I don't exactly have alot of confidence that they know what is the right thing to do. Bella stared to complain in June of 2006 that her feet felt hot, like they were on fire. It usually only lasted a minute or two and then she was fine. She started to complain more frequently and I would sometimes have to get her a wet paper towel or SARNA lotion to put on her feet. Again after a few minutes she said they were fine. I asked her if her feet hurt and she said no just hot but it does not hurt. I mentioned this hot feet thing to my pediatrician at the time and he did not know what it was but basically just ignored it. After a couple more months my daughter complained enough that I could not let the issue rest and I started to google burning feet which took me to the Mayo clinic website where they talked about burning feet syndrome could be neuropathy. To appease my concerns my pediatrician sent me on to a pediatric neurologist who examined my daughter and said that what she describes as her feet being hot does sound like neuropathy but that his physical examination showed her to be very strong with no muscle weakness or anything else so he ordered a bunch of lab work. Everything came back normal offering no explanation for her burning feet. In the meantime I had started to do some research myself and found out the longterm use of PPI drugs like Prevacid could cause a B12 deficiency which neuropathy can be a symptom of. Well I thought to myself my god I never knew that and my daughter has been on a PPI for almost 4 years!!!! I immediately asked her pediatric GI about all of this and he said yes he had heard that can happen but he has never had a patient that develped B12 due to longterm use of PPIs but that he has always maintained that it is ideal to try and give the patient periodic breaks from PPI drugs if they can tolerate it. In the meantime (October 2006) all the labs the neurologist ordered can back normal in particular a vitamin B12/Folate serum test showed Vitmain B12 at 796 and Folate at 11.3 which her doctor said was normal. But I had read Could it Be B12 and about the same time as the serum test was done I sent a urine sample to Norman Clinical Lab for a uMMA test and it tested elevated at 5.3 which Dr. Norman told me indicated my daughter had a mild B12 deficiency and should be treated for it. I took the uMMA test results to my daughters pediatric GI, Neurologist and pediatrician. Her GI doctor had me stop the Prevacid and prescribed Nascobal Nasal Spray (cyancobalamin) 1 spray (500mcg) in each nostril every 4 weeks. Recently I saw a metabolic specialist to make sure we were not overlooking any other possible cause for her B12 deficiency. His tests came back normal just like the neurogolists blood and urine tests. He also wasn't yet convinced that she had B12 deficiency from the uMMA test results b/c she did not have macrocytic anemia and he did not know if you could have B12 without macrocytic anemia. I cited "Could it Be B12" as proof that you can and that ofter neurologial issues show up way before tests would show anemia. He said he would do some research and see if he could get some more information. So he called the Mayo clinic to ask and get some information about the uMMA test I had done and to see if they felt nascobal nasal spray was sufficient for treatment. He said that the Mayo Clinic told him that they considered anything over 10 on a uMMA as a concern neruologically that would require B12 shots. So basically to recap my daughter has no other medical problems than silent GERD and now mild B12 deficiency due to longterm use of Prevacid. Overview of her general health ...she is very intelligent, active, she eats well, sleeping well, physically strong and adept. None of the specialist I have seen really knew much about B12 deficiency and the uMMA by GC/MS. I just want to know that I am doing the right treatment for her and that I got to it in time to reverse any neurological damage that may of been done . Everytime I see her lick her fingers and touch her eyelids saying her eyes our hot I wonder ....should I go ahead and demand they do B12 shots of methylcobalamin? Lord knows I do not want to put my daughter through anymore then she need be but I also don't want her to have permanent neurological damage b/c I did not speak up and go against what her doctors think is the best course of therapy. I would appreciate any help,Jennifer (Bella's mom) Hi Jennifer, Yes, Bella has a B12 deficiency caused by a proton-pump inhibitor and a uMMA of 5.3 is significant and should be treated. Bella is describing neuropathy. Because her uMMA only came down to 3.8--- she should be treated more aggressively--- and I suggest she receive a hydroxocobalamin shot 1,000 mcg every week for 6 weeks. When you think that children with diabetes get shots twice a day--- children get immunizations--- she will do fine and not remember them. It is so important to replace her stores and to try to repair any nerve damage--- I would also suggest she suck on or chew methylcobalamin lozenges 5,000 mcg every day in-between injections. There is a man I know that was on PPI for 20 years--- and now suffers dementia at the age of 55 because no doctor ever thought that a PPI can cause B12 deficiency. It induces it over time. It stops the parietal cell from excreting hydrochloric acid and intrinsic factor--- and of course prolonged use will cause B12 deficiency! The nasal B12 is working--- but way too slow--- therefore it is not effective. Regarding the doctor that told you that a uMMA is significant when it is above 10----is WRONG. This is how they classify inborn errors of B12 metabolism. Bella's was caused by PPI--- drug induced. Children with MMA's over 10 can have permanent mental retardation--- and significant developmental delay. To wait for a child's MMA to be over 10 and not to treat aggressively is CRAZY! An adult with a uMMA of 5.3 is significant and causes symptoms in an adult. Thank goodness you investigated what peripheral neruopathy was and figured it out!!!! An excellent mother on your part--- your gut told you something was going on---even though Bella's doctors ignored it--- and didn't have enough sense to know that PPI's cause this!Read on Amazon.com "Could It Be B12?" ---- there is one review from a mother who wrote in stating, "This book saved my son." Her 10 month old son's uMMA was around 24--- and her numerous pediatricians knew nothing--- the infant was having developmental delay, microencephaly, and she had to fight with them regarding this. There is such a knowledge deficit regarding B12 deficiency in adults--- but when it comes to children---- it is probably doubled.Any problems in getting proper treatment--- feel free to contact my publicist Andrea Wright at (800) 497-4909 and I would be more than happy to discuss this issue with Bella's doctors. The B12 lozenges you can do on your own--- and I would start ASAP. Jarrow is a reputable brand. Bella doesn't need methyl-B12 shots because she does not have an inborn error--- it is drug induced, and she does not have autism--- where this form of B12 is found to be superb verses other forms (per a few physicians)--however, formal studies need to be done on what form and route is best for autistic children. In addition, Bella was also underdosed with the nasal B12--- in each nostril every 4 weeks is like giving a shot once a month-----in the beginning of treating a b12 deficiency---whatever the cause---a series of injections or sprays would be in order to replenish the bodies stores-- she would need a nasal spray every day x 7, then taper off---- I still would get some injections because she has neuropathy---- goal is to completely reverse this. This is exactly why serum B12 is not good in every case, and MMA must be done simaltaneously. Good job in sending her urine in and researching this--- you saved your daughter! Sally Sally
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  • Hi Jennifer, Yes, Bella has a B12 deficiency caused by a proton-pump inhibitor and a uMMA of 5.3 is significant and should be treated. Bella is describing neuropathy. Because her uMMA only came down to 3.8--- she should be treated more aggressively--- and I suggest she receive a hydroxocobalamin shot 1,000 mcg every week for 6 weeks. When you think that children with diabetes get shots twice a day--- children get immunizations--- she will do fine and not remember them. It is so important to replace her stores and to try to repair any nerve damage--- I would also suggest she suck on or chew methylcobalamin lozenges 5,000 mcg every day in-between injections. There is a man I know that was on PPI for 20 years--- and now suffers dementia at the age of 55 because no doctor ever thought that a PPI can cause B12 deficiency. It induces it over time. It stops the parietal cell from excreting hydrochloric acid and intrinsic factor--- and of course prolonged use will cause B12 deficiency! The nasal B12 is working--- but way too slow--- therefore it is not effective. In addition, Bella was also underdosed with the nasal B12--- in each nostril every 4 weeks is like giving a shot once a month-----in the beginning of treating a b12 deficiency---whatever the cause---a series of injections or sprays would be in order to replenish the bodies stores-- she would need a nasal spray every day x 7, then taper off---- I still would get some injections because she has neuropathy---- goal is to completely reverse this. This is exactly why serum B12 is not good in every case, and MMA must be done simaltaneously. Good job in sending her urine in and researching this--- you saved your daughter! Sally SallySally,Thank you so much for your reply. I just wanted to add that Dr. Norman at Norman labs just called me with Bella's latest uMMA result taken on May 2. I am thrilled to report it is 1.6 well within normal range he said. Knowing that it is now 1.6 do you still feel I need to discuss with her doctors that she should be getting shots vs just being off the Prevacid and using Nascobal nasal spray twice a month? Bella just had a bad virus that caused her to have to be hospitalized for a day to be hydrated with an IV and she gets so extremely upset at just the mentioning of the doctors b/c she has been through so much in the past I hate the thought of doing shots now but I will do whatever I need to do to make sure she is taken care of properly. I know from past discussions with her doctors they feel like she does not need to have the shots so I know I will have to be really well prepared to argue otherwise. Since I just got the latest uMMa results I thought I 'd check in with you before I go forward. I am so deeply grateful for your book Could it be B12 and for your responses. You have truely helped me save my daughter!!! I know there are thousands of children on PPI drugs like Prevacid for acid reflux and I just pray that the pediatric GI community will start making sure that these chidren get B12 supplementation as long as they are on a PPI. I belong to a web community for parents with chidlren from GERD and have tried to spread the word but of course I think everyone is assuming my daughter is one of the rare side effects that most chidren wont experience but I think it is more common than not and unfortunately any problems that arise in children may be blamed on complications of reflux instead of the fact they may of been or are B12 deficient which is simple to treat if caught early. Thank you again, I will be anxious to hear you thoughts on Bella's latest uMMA of 1.6Jennifer
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  • My father is 70 yrs old and was just diagnosed with a vitamin B-12 deficeincy due to my prodding him to do so after reading the posts in this site. So first off, I would like to thank you all, especially Sally who I've directed my father to buy her book (which I will be doing as well now that it is confirmed). Since it has been confirmed, I was hoping for some detailed info on how we need to handle this to help him get as well as he can, i.e. shots, treatment, pill regimen, type of doctors needed, etc. In order to educate and expedite this, I will explain his medical history below.He was in very good shape, both mentally and physically until about 10 years ago. His only health issue was gout which he had been taking medication for since he was about 40. Realizing that anti-gout medication restricts the uptake of B-12, and his avoidance of shellfish because of it, I believe this is where his deficiency all started. Around the age of 60, he began to become anxious due in his mind to the stresses of his job and went on anti-anxiety medication (another b-12 inhibitor) which he is still on today. Soon after, he went into a depressive state and soon after developed a left hand tremor and sluggish left leg gait which led doctors to believe that he had "Parkinsonion-ism" as they called it and put him on anti-Parkinsons meds (another b-12 inhibitor I believe) 3 years ago. So as of now, he's on 3 pills that restrict his b-12 uptake and is only getting worse. He is more lethargic and nervous then ever, has terrible leg pains at night and can hardly walk until his first Parkinson's pill in the morning but that really doesn't do much. He's had heart murmurs, trouble swallowing, leg cramps, dandruff, fine motor-movement probs (such as writing) constipation and difficulty urinating which has got him on another pill to alleviate that problem. He has lost a lot of weight recently and also at one time had a gastrointestinal issue which he gobbled Tums to alleviate.So in a nutshell, I guess that covers it. My question is (and I don't have the MMA, Homocysteine or Serum B-12 numbers yet from his doctor, a new one I arranged for him to meet since I don't trust his GP (who is trying desperately to get him on insulin for diabetes, which I'm sure he doesn't have) or his Parkinsons doc. (who I'm sure misdiagnosed him as well)), what are the steps here? And, after the initial shots and pills are administered and whatever else you recommend, should we take him off the anti's (gout, anxiety, parkinsons) and see if this has been his prob. all along or what? I know he may have nervous system issues from the effects of the deficiency and the lengthy time he's been that way, but I never thought he had Parkinson's in the 1st place (although I've supported him and his treatment for it throughout. However, I was stupid and didn't ask if he'd had a 2nd opinion which I figured he would have, but anyway...). Case in point, due to his anxiety, his career was coming to an end and he identified who he was by it. We had a lengthy talk one night and, being the great athlete in H.S. and award-winning sales-rep, he said he "just wanted to be a champion again." I told him that no matter what happened, he would always be a champion in his friend's, neighbor's, peer's and family's eyes and after saying that, his ever-present hand tremor went away. It returned after we changed the subject, but I don't think Parkinson's works that way. Anyway, to sum up - 1) What now after the initial diagnosis?, 2) how do we decipher if his other problems are b-12 related and not from the other diagnoses? and 3) who do we contact to sue these irresponsible doctors to recover just a piece of the financial, physical and emotional strains their incompetence has placed on my father and his family as well.Thank you all once again.CB
    Anonymous 42789 Replies Flag this Response
  • My father is 70 yrs old and was just diagnosed with a vitamin B-12 deficeincy due to my prodding him to do so after reading the posts in this site. So first off, I would like to thank you all, especially Sally who I've directed my father to buy her book (which I will be doing as well now that it is confirmed). Since it has been confirmed, I was hoping for some detailed info on how we need to handle this to help him get as well as he can, i.e. shots, treatment, pill regimen, type of doctors needed, etc. In order to educate and expedite this, I will explain his medical history below.He was in very good shape, both mentally and physically until about 10 years ago. His only health issue was gout which he had been taking medication for since he was about 40. Realizing that anti-gout medication restricts the uptake of B-12, and his avoidance of shellfish because of it, I believe this is where his deficiency all started. Around the age of 60, he began to become anxious due in his mind to the stresses of his job and went on anti-anxiety medication (another b-12 inhibitor) which he is still on today. Soon after, he went into a depressive state and soon after developed a left hand tremor and sluggish left leg gait which led doctors to believe that he had "Parkinsonion-ism" as they called it and put him on anti-Parkinsons meds (another b-12 inhibitor I believe) 3 years ago. So as of now, he's on 3 pills that restrict his b-12 uptake and is only getting worse. He is more lethargic and nervous then ever, has terrible leg pains at night and can hardly walk until his first Parkinson's pill in the morning but that really doesn't do much. He's had heart murmurs, trouble swallowing, leg cramps, dandruff, fine motor-movement probs (such as writing) constipation and difficulty urinating which has got him on another pill to alleviate that problem. He has lost a lot of weight recently and also at one time had a gastrointestinal issue which he gobbled Tums to alleviate.So in a nutshell, I guess that covers it. My question is (and I don't have the MMA, Homocysteine or Serum B-12 numbers yet from his doctor, a new one I arranged for him to meet since I don't trust his GP (who is trying desperately to get him on insulin for diabetes, which I'm sure he doesn't have) or his Parkinsons doc. (who I'm sure misdiagnosed him as well)), what are the steps here? And, after the initial shots and pills are administered and whatever else you recommend, should we take him off the anti's (gout, anxiety, parkinsons) and see if this has been his prob. all along or what? I know he may have nervous system issues from the effects of the deficiency and the lengthy time he's been that way, but I never thought he had Parkinson's in the 1st place (although I've supported him and his treatment for it throughout. However, I was stupid and didn't ask if he'd had a 2nd opinion which I figured he would have, but anyway...). Case in point, due to his anxiety, his career was coming to an end and he identified who he was by it. We had a lengthy talk one night and, being the great athlete in H.S. and award-winning sales-rep, he said he "just wanted to be a champion again." I told him that no matter what happened, he would always be a champion in his friend's, neighbor's, peer's and family's eyes and after saying that, his ever-present hand tremor went away. It returned after we changed the subject, but I don't think Parkinson's works that way. Anyway, to sum up - 1) What now after the initial diagnosis?, 2) how do we decipher if his other problems are b-12 related and not from the other diagnoses? and 3) who do we contact to sue these irresponsible doctors to recover just a piece of the financial, physical and emotional strains their incompetence has placed on my father and his family as well.Thank you all once again. CB Hi CB, I am so pleased that you helped get your dad diagnosed, that is the mission of our book---to educate the public regarding this totally treatable and preventable epidemic. Knowledge is power---- it is too bad the the medical and health care community is lagging behind-- but eventually they will catch up. Yes, the drug colchicine used for gout impairs B12 absorption--- and taking it for 30 years would place him at high risk for B12 deficiency. Anti-anxiety drugs and drugs to treat Parkinson's disease do not cause a B12 malabsorption problem. But the sign or symptom of anxiety is a manifestation of B12 deficiency---therefore anyone with anxiety--- befor being placed on an anti-anxiety med--- their doctor should properly rule out B12 deficiency. Likewise tremor, shuffling gait, balance problems, are signs of B12 deficiency--- and can be easily misdiagnosed as Parkinson's disease----but if clinicians would test patients to make sure that it is not a B12 deficiency---- they would not make this injurous and sometimes fatal error. So-- to recap---anti-anxiety meds and Parkinson meds don't cause B12 deficiency like proton-pump inhibitors, colchicine, metformin, nitrous oxide do---- but anyone with a psychiatric diagnosis (anxiety) or neurologic diagnosis (Parkinson's) must have B12 deficiency properly ruled out! Yes, your dad had numerous signs, symptoms and risk factors, and should have been tested long ago! 1. Your dad is at risk because of his age (70) ---30-40% of seniors over age 60 have decreased levels of stomach acid which is needed to free B12 from animal proteins, so that it can be absorbed. 2. Second risk factor--- (I am assuming) on colchicine (you did not state what gout med he was on)--- and he was on this for 30 years!3. anxiety4. depression5. tremor6. sluggish left leg gait (which doctors assumed was Parkinson's)7. lethargy or weakness8. leg pains at night----restless leg syndrome (RLS)--- (everyone with a diagnosis of RLS must be tested for B12 deficieincy9. difficulty urinating---advanced B12 deficiency can affect nerves in pelvic region and make one incontient of urine and stool10. chicken scratch hand writing---difficulty with fine motor movements11. weight loss12. eating a lot of TUMS-- antacid Who diagnosed you dad with the B12 deficiency, and what tests were done?Before giving him any B12 high dose pills or shots---- his doctor should have done the basic 3 tests serum B12, methylmalonic acid, homocysteine. If he was found to have a low B12--- and or elevated MMA ---he needs to have the series of injections--- like I have written many times in this forum. 1,000mcg IM every day or every other day x 7, then once a week x 4 weeks--- and this time you would reevaluate how he is responding--- and would decide if he needs to have another 1 or 2 months of shots every week. On the days he is not getting the shot--- I would recommend Metanx (Rx) which contains methylcobalamin 2mg, folic acid 2.2mg and B6 25mg. The injectable B12 I would use is hydroxocobalamin verses cyanocobalamin. Yes, the other drugs he is on may make his signs and symptoms worse--- but his doctor needs to make sure he truly does have a B12 deficiency and not Parkinson's. If you have documented low B12 and or elevated MMA--- he has a documented B12 deficiency--- his doctor should try to ween him off some of his Parkinson's drugs--- once he gets on shots--- he shouldn't just stop these drugs cold turkey. It depends how long he has been on them-- and they may need to slowly take him off---but if someone has a true B12 deficiency--- and you give them other drugs-- it just makes things worse. Regarding contacting a malpractice attorney----each state in the U.S. has a statue of limitations (meaning when the patient became aware of the misdiagnosis)--some states have one year--- others have 2 years to file a lawsuit. Now of course you have to have documentation--- lab work showing that a deficiency was indeed present. (which would be the serum B12, MMA, homocysteine). And also the patient's record showing that when he was diagnosed with "anxiety" and "Parkinson's" that the doctor failed to test him for B12 deficiency using the B12 and MMA test. If your dad has a significant deficiency--- many times brain spine MRI's are abnormal showing demyelination--- and after B12 therapy--- many times the lesions reverse---also proving this was a B12 Deficiency--- so you may want him to get these MRI's (if he hasn't had them already).Hopefully he will improve---- but as you have read-- often times if B12 deficiency is left untreated for some time---permanent injury can result. He may have full recovery, partial recovery-- or no recovery. Regardless, he must get the series of injections. What state do you live in? I know of attorneys in Illinois and South Carolina that have actually won malpractice cases regarding misdiagnosed B12 deficiency. Any good malpractice attorney could take the case--- of course they will have to be educated on B12 deficiency--- which there are thousands of medical journal articles on--- and most of all there has to be proof that your dad truly has a B12 deficiency (by B12, MMA, his history, risk factors, age, etc.) If you can believe it--- I still actually work with doctors that refuse to test patients---who are at high risk and have multiple signs and symptoms---- arrogance and ignorance at it's finest. We really need to do a commercial (public health informing the public of the signs, symptoms, and risk factors, and tests for B12 deficiency--- and do a 2 minute bit educating the viewers). Keep us posted! Sally
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  • In May of 2005, I began to experience extreme fatigue - which I attributed at the time to a very demanding period in my job (high stress, high level of responsibility, 70 hour workweeks). By the end of 2005, I was unable to walk more than about a block due to muscle weakness and fatigue. I also started to have cognitive symptoms. I became unable to do simple math problems in my head (I had math through calculus) and was repeatedly forgetting - well, almost everything -- even the names of people I knew well. In January 2006, I was diagnosed with pernicious anemia (B12 level was 170) and started on a course of injectable B-12. I began to feel better quickly. As I began to feel better, I started to increase my level of activity but found that the muscle fatigue was not getting much better. I was seen by a neurologist to r.o. MS and a rheumatologist to r.o. some kind of rheumatic disorder. Finally, my endocrinologist suggested testing my Vitamin D levels.The Vitamin D level came back at 7.2 - which I understand is quite low. This was in August 2006. He put me on 2000 i.u. per day of Vitamin D. I improved somewhat but not enough (previous to all of this I was a very strong, physically active person). Four months later, he retested me and my Vitamin D level had increased to 14 - still low. He now has me on 4000 i.u. of Vitamin D each day, which I have been taking dutifully for the past 4 months. He could not explain to me why my Vitamin D was so low. He initially blamed lack of sunlight and diet (neither of which was accurate). After taking the supplements for 4 months and still having the levels low, he just said he didn't know.At this point, I'd had enough and went to see another specialist. They ruled out celiac's disease and a few other things. They did not think there was a central component to my hypothyroidism. They also did not have much to offer by way of an explanation for the Vitamin D levels - some kind of "metabolic problem."There is a very strong history of auto-immune disorders in my family:My mother had severe osteoporosis.My brother has moderately severe psoriasis.My nephew has Crohn's disease.My first cousin died in her 50's from severe rheumatoid arthritis.My other first cousin developed adult onset Type 1 "juvenile" diabetes.That cousin also had twins who both developed Guillaine-Barre Syndrome that left them permanently partially paralyzed.I am still suffering persistent weakness in my large muscles and in the last 4 weeks have developed a persistent, uncontrollable twitch in the thumb and forefinger on my right hand. Recently, my jaw gets very tired just chewing food (normal quantities of usual foods - I have to stop several times when eating a bowl of granola, for example.) And I still can't hold my arms over my head for any length of time. I am also tired all the time - even when I get plenty of sleep. I have Hashimoto's possibly with a central component involving the parathyroid glands.Insulin resistancePernicious anemiaVitamin D deficiencyhyperreflexive tendon responsesthin, brittle fingernails that split verticallythinning, prematurely grey hairI don't really know what to try next. I have felt like crap for the past 2 years. There are clearly a bunch of things wrong with me but I also feel there is something larger going on that connects all of these problems and that no one is seeing. I'd love to know what it is so I can know what, if anything might be next, and what to watch for. I will be going back to see my endocrinologist in a couple of weeks and would appreciate any thoughts on how to approach this situation in a way best calculated to find an answer?
    Anonymous 42789 Replies Flag this Response
  • Sally,in regards to your reply about no further improvment after 1 year, I find that just isn't the way it works. I have had continuing improvment for 4 years, partly from the methylb12 and partly from additional things fine tuning the methylation and mitochondrial functions such as SAM-e, L-carnitine fumerate, Tri Methyl Glycine, adenosylcobalamin and methylfolate. When I went from 10mg/day sublingual to 5mg/day injectable methylb12, after 3 years on sublingual, A whole new round of healing has kicked off. I had already had the feeling return in the skin of my feet. I'm getting the feeling back in the muscles of my feet, some of which have been numb for 13 years. According to some Japanese studies neural healing appears to be upregulated when the concentration gets high enough. Some experiments with intrathecal methylb12 are very promising. The peak of my neural healing of each round occurs at about nine months. I'm 3 months into the methylfolate and getting more feeling in my feet. I've had almost full remission of most neurological pain, note tha "most" is a comparitive, most is by no means all. And Deb, I think that you still have considerable healing to do. The brand of methylb12 sublingual, if you have tried those, makes a huge difference. In 10 brands we tested, 2 were very active, 1 was totally inactive and 7 were so-so active. I've only tried one kind of injectable methylb12 from a compounding pharmacy and it was noticably more active than the best sublingual and sparked off an entire new round of healing. For the neurological damage to heal one needs to be taking sufficient of all the cofactors.something like: 25000 A from fish oil1000 D from fish oil2+ grams of C400 E 8 factor high gamma supplementomega3 fish oil (for remyelenation of nerves)zinc, at least 50mg/daya good multi-coenzyme b-complex such as B-right, TWICE a day1600mg of folic acid or better yet 400+ mcg of methylfolateadenosylcobalamin (for energy production in mitochondria)calcium and magnesium One can improve from there depending upon what things make the biggest difference. Hi Fred, I'm glad you wrote in to clarify some issues. When I say after one year of B12 therapy---- people typically are where they are at neurologically (I mean using hydroxocobalamin and methylcobalamin injections only----not pills or lozenges). When I speak of B12 therapy (after one has been diagnosed to be truly deficient--- which was causing their neuro signs symptoms/injury---B12 therapy--- means trying intensive B12 therapy with methyl-B12 injections. You state yourself that you have been improving over 4 years--- but the first 3 years you were only on sublingual---not on injections---which I think is a mistake that many doctors make ---giving people only oral/SL than giving injections. You yourself noted a noticeable improvement after switiching from SL to methyl injections--- which from your post you have been on the injections close to a year. You must remember----everyone is different in how they are going to respond---- and I am only reporting back what I have read in medical texts--- that patients after a year of therapy--- that is basically where they are at neurologically---- but they are talking about using B12 injections---- and not oral SL form. However, I believe the medical texts are outdated--- and the amount of B12 injections they give people is way underdosed (in frequency) -- on how patients may respond. I don't want to give false hope to people--- when I really don't know how there outcome will be. There are no large studies of injured people from B12 deficiency taking high dose methyl-B12 or hydroxo-B12 injections telling what percent they improve. I wish there was---- but you must remember everyone is unique-- and it depends how long they were B12 deficient, their age, coexisting illnesses, other traumas or injuries, etc. But it is so important for people who have been injured from B12 deficiency to share their success and what their treatment protocol is --- thereby helping others. Some people who have been injured for years --- and when I talk about being injured--- I mean unable to walk--- the therapy you are taking---- they may have some kind of response--- but not like what you are talking about regarding pain. People reading this forum--- must always work with their doctor or pursue a doctor who will be willing to try these frequent methyl-B12 injections--- and other nutritional supplements. The supplements you list--- is yes-- a good protocol for neuropathy--- but others suffer from other problems from B12 deficiency---such as inability to walk, incontinence, cognitive problems, dementia. There is a man that was misdiagnosed with dementia---that was only 55 years old--- and turned out he had a B12 deficiency not cortical basal ganglionic degeneration (CBGD). He has been on frequent methyl-B12 injections 64.5mcg/kg subcutaneous every 3 days (which for his body weight---comes out to over 5,000mcg injected every 3 days. He did improve and did feel better--- it helped his sleep greatly--- which he also had a sleeping disorder--- and greatly helped his visual fields--- it did help his dementia slightly--- but after 3 months of therapy--- he has leveled off, the past 6 months there has been no further improvement. He is taking high dose folic acid and other B vitamins---- he has no neuropathy or neurologic pain. You see, everyone is different. He still suffers from major cognitive problems. Also, everyone must remember---I ALWAYS ADVOCATE proper testing before B12 is started---- to see if a true B12 deficiency is/was present causing the symptoms. Second, I advocate---always using B12 injections--- when B12 deficiency is diagnosed by a physician. I also advocate using hydroxo-B12 injections or methyl-B12 injections--- (not cyanocoblamain). I advocate much more frequent injections than what is written in medical texts. I believe that neuropathy--- from other causes--such as diabetes, dialysis patients--- may be tremendously helped with high dose methyl-B12 injections--- however, it may be hard convincing your doctor to treat you this way. Yes, there are studies in Japan where high-dose methyl-B12 injections is helping an array of neurologic disorders. But as you have read----people out there with signs and symptoms of B12 deficiency are having difficulty even getting their doctors to test them--- let alone treat them. And if they ask or beg for more injections--- their doctor typically refuses to. My answers are not intended as and does not substitute for medical advice---- the information presented is for patient education only. People still have to see and consult their personal physician for diagnosis, treatment and further evaluation of their indivicual case. I can only tell people what tests need to be done--- and the forms and frequency B12 appears to work better. Many times patients could have two disease processes going on at the same time. I would hate to advise people to be taking numerous supplements that they can buy over the counter---- when they may have an entirely different medical conditon going on (ie. Lupus, thyroid disorder, celiac disease, cancer). This is why every person must work with their doctor. And if their doctor is not listening to you ---- find a different doctor. People could also consult a nutritional doctor who may be more willing to give high-dose methyl-B12 ---don't forget -- you still need a prescription for tests and for injectable B12. When people start taking oral or SL B12 on their own---- they will alter their lab tests--- and will never know if that is what is causing their problems. This is not to say that if the results come back negative---- that you can't try B12 to see if it assists in your symptoms.Some people with B12 deficiency may have a B12 metabolic defect---- where high dose folic acid 2,200mcg or 2.2 mg may be greatly beneficial--- there are so many variables. I wish there were studies or reports of people's recovery from B12. (I hope people use this forum to write in and help us all learn). But Fred, you have been most helpful in sharing what worked for you. I hope more people will share what is working for them. Yes, I am sorry if I gave the impression to give up hope--- but I do know a few B12 victims--- that are severely injured greater than 10 years---- and they are unfortunately stuck at where they are at (and have not changed). Now, perhaps if their physicians initially tried frequent high-dose methyl-B12 injections---- there outcome may have been different. Yes, I have read the intrathecal methyl-B12 experiments--- and they do sound very promising. The U.S. is way behind the times. I wish more physicians using high-dose methyl-B12 in their patients--- would report their findings and publish it in a medical journal---for other physicians to learn by. Fred, I do agree with what you are taking for your neuropathy. When were you diagnosed with B12 deficiency--- and what caused it in you? What was your serum B12? And what futher testing did you have. What was the extent of your injury--- or what parts of your body were effected? Did you have any mental or cognitive problems initially? I wish they would do a study of using high-dose methyl-B12 injections on patients with dementia. There are so many studies that need to be done--- but unfortuantely because B12 is so cheap---- pharmaceutical companies are not interested verses making billions of dollars from new drugs invented that they could charge a great fee for. They still would be making a lot of money--- but it is very bizarre that in the U.S. B12 is very misunderstood and high dose injectable B12 is not investigated (like it is in Japan)----but maybe soon! Sally
    Anonymous 42789 Replies Flag this Response
  • In May of 2005, I began to experience extreme fatigue - which I attributed at the time to a very demanding period in my job (high stress, high level of responsibility, 70 hour workweeks). By the end of 2005, I was unable to walk more than about a block due to muscle weakness and fatigue. I also started to have cognitive symptoms. I became unable to do simple math problems in my head (I had math through calculus) and was repeatedly forgetting - well, almost everything -- even the names of people I knew well. In January 2006, I was diagnosed with pernicious anemia (B12 level was 170) and started on a course of injectable B-12. I began to feel better quickly. As I began to feel better, I started to increase my level of activity but found that the muscle fatigue was not getting much better. I was seen by a neurologist to r.o. MS and a rheumatologist to r.o. some kind of rheumatic disorder. Finally, my endocrinologist suggested testing my Vitamin D levels. The Vitamin D level came back at 7.2 - which I understand is quite low. This was in August 2006. He put me on 2000 i.u. per day of Vitamin D. I improved somewhat but not enough (previous to all of this I was a very strong, physically active person). Four months later, he retested me and my Vitamin D level had increased to 14 - still low. He now has me on 4000 i.u. of Vitamin D each day, which I have been taking dutifully for the past 4 months. He could not explain to me why my Vitamin D was so low. He initially blamed lack of sunlight and diet (neither of which was accurate). After taking the supplements for 4 months and still having the levels low, he just said he didn't know. At this point, I'd had enough and went to see another specialist. They ruled out celiac's disease and a few other things. They did not think there was a central component to my hypothyroidism. They also did not have much to offer by way of an explanation for the Vitamin D levels - some kind of "metabolic problem." There is a very strong history of auto-immune disorders in my family:My mother had severe osteoporosis.My brother has moderately severe psoriasis.My nephew has Crohn's disease.My first cousin died in her 50's from severe rheumatoid arthritis.My other first cousin developed adult onset Type 1 "juvenile" diabetes.That cousin also had twins who both developed Guillaine-Barre Syndrome that left them permanently partially paralyzed. I am still suffering persistent weakness in my large muscles and in the last 4 weeks have developed a persistent, uncontrollable twitch in the thumb and forefinger on my right hand. Recently, my jaw gets very tired just chewing food (normal quantities of usual foods - I have to stop several times when eating a bowl of granola, for example.) And I still can't hold my arms over my head for any length of time. I am also tired all the time - even when I get plenty of sleep. I have Hashimoto's possibly with a central component involving the parathyroid glands.Insulin resistancePernicious anemiaVitamin D deficiencyhyperreflexive tendon responsesthin, brittle fingernails that split verticallythinning, prematurely grey hair I don't really know what to try next. I have felt like crap for the past 2 years. There are clearly a bunch of things wrong with me but I also feel there is something larger going on that connects all of these problems and that no one is seeing. I'd love to know what it is so I can know what, if anything might be next, and what to watch for. I will be going back to see my endocrinologist in a couple of weeks and would appreciate any thoughts on how to approach this situation in a way best calculated to find an answer? See if he will put you on a trial of methyl-b12 injections like the protocol for autistic children 64.5mcg SC every 3 days--- and see if it improves your symptoms. I would use hydroxocobalamin or methylcobalamin verses cyanocobalamin injections. See if more frequent injections improve your symptoms. You may have another medical condition, yet to be diagnosed. Hopefully the endrocrinologist appointment will shed some light-- or further testing. Have you had your small intestine biopsied for celiac disease? It sounds like you have major malabsorption problems--- and some other condition is going on. You could also try methyl-B12 lozenges 5mg or 5,000 mcg daily in-between injections to see if this assists any of your symptoms. Sally
    Anonymous 42789 Replies Flag this Response
  • Sally - Thanks so much for the wealth of information on this board. I need an opinion on my current situation, and am hoping you can help.Over the last nine months I have experienced some worrisome neurological symptoms, that I have shared with my GP. They started with tingling in my hands and feet. My doctor stated that it could be a B12 problem and ordered serum B12 and folate tests. The levels came back at 317 and 6.3 respectively - within normal ranges according to the lab. She also sent me to a neurologist for an EMG, which also came back normal. At that point I was diagnosed with mild diabetic neuropathy, even though I had only been taking medication for type II diabetes for a couple of months prior. Since that time I have continued to have the tingling off and on. I visited the doctor again about 3 wks ago, due to continuing muscle weakness and fatigue. She did additional blood work to check for muscle or liver damage due to the statin drugs I've been taking for high cholesterol. Those tests also came back normal. Her recommendation now is that I see a rheumatologist for further evaluation.My question to you is - in your opinion, would a rheumatologist be the best doctor to visit next? I ask because I have the following risk factors you describe in your book - hypothyrodism, GERD (for which I take prevacid and zantac daily), and type II diabetes (currently treated with metformin). 9 months ago my serum B12 was 317, but I had no other tests to rule out a deficiency. Would another round of B12 tests be warrented now before I see the other doctor (my appt with him is in 6 wks)?Thanks you in advance for any advice you can give.Chris
    Anonymous 42789 Replies Flag this Response
  • First let me apologize if this message ends up posting twice.Over the past several months, I have been experiencing some worrisome neurological symptoms that I'm curious about possibly being related to a B12 deficiency.Last September, it started with tingling in my hands and feet. My primary care doctor did order B12 and folate tests, and the results came back at 317 and 6.3 respectively - within normal ranges according to the lab. She also sent me to a neurologist, who performed an EMG on both hands and one foot. These tests also came back normal, and I was diagnosed with mild diabetic neuropathy, as I had recently moved from borderline diabetic to full type II diabetic.About 3 weeks ago, I returned to the doctor because of continuing muscle weakness, fatigue, and a slight tremor in my hand. This time she ordered a blood panel to check for muscle/liver damage related to statins I have been taking for my cholesterol. Again these tests came back normal. She has since referred me to a rheumatologist for further evaluation. I have an appointment with that doctor in 6 weeks.After reading Sally's book, I have gone back to wondering about a B12 problem, even though my original tests came back normal. According to the the book, I have the following risk factors: hypothyroidism, GERD being treated with both Prevacid and Zantac, and type II diabetes being treated with Metformin.Since this board contains a wealth of information and experience on B12 deficiency, I'd love to hear your opinions on what your next move would be if you were in my situation.Thanks in advance for any ideas,Chris
    ChrisH 1 Replies Flag this Response
  • First let me apologize if this message ends up posting twice. Over the past several months, I have been experiencing some worrisome neurological symptoms that I'm curious about possibly being related to a B12 deficiency. Last September, it started with tingling in my hands and feet. My primary care doctor did order B12 and folate tests, and the results came back at 317 and 6.3 respectively - within normal ranges according to the lab. She also sent me to a neurologist, who performed an EMG on both hands and one foot. These tests also came back normal, and I was diagnosed with mild diabetic neuropathy, as I had recently moved from borderline diabetic to full type II diabetic. About 3 weeks ago, I returned to the doctor because of continuing muscle weakness, fatigue, and a slight tremor in my hand. This time she ordered a blood panel to check for muscle/liver damage related to statins I have been taking for my cholesterol. Again these tests came back normal. She has since referred me to a rheumatologist for further evaluation. I have an appointment with that doctor in 6 weeks. After reading Sally's book, I have gone back to wondering about a B12 problem, even though my original tests came back normal. According to the the book, I have the following risk factors: hypothyroidism, GERD being treated with both Prevacid and Zantac, and type II diabetes being treated with Metformin. Since this board contains a wealth of information and experience on B12 deficiency, I'd love to hear your opinions on what your next move would be if you were in my situation. Thanks in advance for any ideas, Chris Hi Chris, You need to immediately have the methylmalonic acid test and homocysteine test. It sounds like you have a B12 deficiency--- because your serum B12 is in the low range 317pg/ml (even though doctors consider this normal). You are at great risk because you have symptoms of B12 deficiency--- and your risk factors are the PPI (Prevacid), H-2 blocker (Zantac), and metformin. You also have a thyroid disorder. The MMA and Hcy tests are covered by insurance ---and Medicare if you have it. The reason it is important to get tested BEFORE you start taking B12---is because if your MMA comes back elevated this will give your doctor something to work with and treat you. Otherwise--- it will be a fight--- and if your MMA does come back elevated--- you would deserve a round of injections. This is not to say--- that if your tests come back negative that you shouldn't take B12. Once your blood is taken---- I would go out and get some methyl-B12 5,000mcg and start taking them daily---- but if you do this before --- it will alter the tests. I have seen numerous patients with their serum B12 in the 300's (some in the 400's and 500's) who were symptomatic and their MMA came back elevated---proving deficiency--- and not only teaching their doctor something---but no resistance in treatment.Because of your GERD drugs, metformin---- you will eventually get a b12 deficiency--- if these are taken chronically--- so after testing--- it would be a good idea to be on a high dose B12. There is a drug called Metanx that is Rx---that if you come back + your doctor may be interested putting you on. Because you have thyroid disorder (if it is caused from autoimmune disease) if you have antibodies against your thryoid gland-- you are at risk for autoimmune perncious anemia--- which also causes B12 deficiency.Testing is the way to go--- you need to document a deficiency if one exists---- and if it is not there--- you can begin high-dose for prevention---and to ascertain if it rids your symptoms. At least it will give your doctor some reference point to start looking else where of what could be causing your symptoms. Refer this article to your doctor--- that states serum B12 below 400pg/ml with risk factors or signs and symptoms needs the MMA and Hcy test: Dharmarajan, T.S. and Norkus, E.P. Approaches to vitamin B12 def.: Early treatment may prevent devastating complications. Postgraduate Medicine 2001;110(1);99-105. If you plug in yor search engine Dr. Dharmarajan and vitamin B12 deficiency--- this article you can get for free---read it --- and take it to your doctor----make an appt. and get yourself tested. Good luck. Sally
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  • I am reading CBC levels, yet I do not understand. Which levels are what? Should they be on the high side, on the low side, in the middle. You are all correct about testing B12 levels, in all the blood tests I have had in the last 2 yrs, only once was B12 tested for and that was at my request. At the time, I was taking 1200mcg daily and my level came back at 1237 with the range being 200-1100. The doc immediately decided B12 was not a problem for me. At the time, folate, serum was 11.7, the range being >5.4. This test was done in Oct 2005 and it was a non fasting test. Sally, I did ask all my kids to be tested for celiac disease and I have told 3 of them so far that they should have B12 levels checked. The son I told you about with high BP, Hasimoto's, etc is on state assistance for now--I'm hoping they will allow this test be done. His doctor will not test him at this time for celiac disease because he feels, "It is not necessary to test you at this time!" Another son requested to be tested for diabetes and celiacs and his doctor said to him, "You don't look celiac or diabetic, it's not necessary to be tested, just adjust your diet." Ignorance, is running rampant, at least that is how I feel. Do celiac's have 2 heads, is that why he doesn't "look" like he has it? I am not sure I ever "looked" celiac either, if his meaning is a celiac must be thin. When my intolerance's are in full force, I gain weight. At my sickest ever, I was the heaviest I have ever been. I just wish I could find the answers I need.
    darlindeb25 122 Replies Flag this Response
  • I am reading CBC levels, yet I do not understand. Which levels are what? Should they be on the high side, on the low side, in the middle. You are all correct about testing B12 levels, in all the blood tests I have had in the last 2 yrs, only once was B12 tested for and that was at my request. At the time, I was taking 1200mcg daily and my level came back at 1237 with the range being 200-1100. The doc immediately decided B12 was not a problem for me. At the time, folate, serum was 11.7, the range being >5.4. This test was done in Oct 2005 and it was a non fasting test. Sally, I did ask all my kids to be tested for celiac disease and I have told 3 of them so far that they should have B12 levels checked. The son I told you about with high BP, Hasimoto's, etc is on state assistance for now--I'm hoping they will allow this test be done. His doctor will not test him at this time for celiac disease because he feels, "It is not necessary to test you at this time!" Another son requested to be tested for diabetes and celiacs and his doctor said to him, "You don't look celiac or diabetic, it's not necessary to be tested, just adjust your diet." Ignorance, is running rampant, at least that is how I feel. Do celiac's have 2 heads, is that why he doesn't "look" like he has it? I am not sure I ever "looked" celiac either, if his meaning is a celiac must be thin. When my intolerance's are in full force, I gain weight. At my sickest ever, I was the heaviest I have ever been. I just wish I could find the answers I need.Dear-Read the book "Never Be Sick Again"- by Raymond Francis- it is an eye opener.If you can afford it- try BIOSET or NAET. naet.com. At least read about it.Try to get a Bioset or NAET doctor that can give you a discount or a payment plan or something. Testing for celiac is not necessary at this point- isn't that painful, risky and expensive?. NAET and Bioset can test you for all allergies and reverse the allergy! Yes- it can cure you too.There are message boards out there where NAET on babies and childrens is discussed all the time.The real celiac is supposed to be a genetic disease- I don't know how everyone now has it. Conventional Medicine is not necessary more reliable that its new counterpart NAET.I had so many intolerances- and I was really overweight- after reading Never Be sick Again and starting NAET I lost all the weight.I went from a size 12p to a healthy 2p - with a B cup.I wish the best!Sincerely,Fruity.As far as B12 goes- if you area allergic to B12 your body is going to remain sick no matter how much of that you inject in yourself. Doctors are not going to tell you that our bodies are so intoxicated that they get confused: we are now developing allergies and intolerances to essential nutrients. But this is for real.So- if you try NAET- you can find out if you are allergic to B12 and fix it in one session. Some people need more than one session but one session should be enough.
    Eatafruit78 960 Replies Flag this Response
  • Hi. I was trying to find a correlation to low B12 and ferritin levels and possibly low folate levels. I am now 40 and have three children. My 12 year old has spina bifida (SB), no family history of SB except occulta in my dad. I have been diagnosed with all sorts of things lately including high blood pressure, high cholesterol, pre-diabetes, Periodic Limb Movement Disorder from a sleep stuudy, low B12 and low ferritin levels. My iron level is ok, not anemic (yet). I am doing monthly B12 injections and feel a heck of a lot better (more energy) but one thing I noticed is that I don't sweat nearly as much as I used to. Very odd as I can't find any reason for this, but I am thankful. It was 101 F today and I was warm, but not sweaty. My question...I haven;'t been tested for folic acid deficiency, but since B12 and flic acid are both B viamins, are they linked in absorbtion, etc? Oh, I forgot the low thyroid levels and taking 75 mcg. of synthroid.Susan
    Anonymous 42789 Replies
    • August 16, 2007
    • 07:45 PM
    • 0
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