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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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  • my best friend and I both have read your book,she is suffering so badly.It all started in Feb.2006 she woke up with a weird feeling in her head.But it soon progressed to a dizzy feeling.She went to an ent because she thought it washer ear.Tubes later no help,they told her to live with it,they couldn't help.So she went to many nurologists first they said she had m.a.v. migraine associated vertigo. She got no better,went to a tmj guy,he almost killed her. She carried on like a trooper, until the terrible fatigue came on, just a few days,then a few more days,and now it is everyday non-stop! Then if that was not bad enough she now has debilatating muscle aches in her hips,thighs,calfs,and even her toes. She is also suffering from a cold numb feeling in her calfs. She has gone to a vasscular DR. nothing, nurologist,nothing. She has been to countless E.R.hospitals,therapists,yes she even thought maybe it was stress causing all these symptoms. Finally one Dr. suggested to do a b12 serum test, the test came back she was low 220. Finally something showed to abnormal, so the suggested her reciving b12 injections. She began the injections right away, but unfortunatly no one including her Dr. informed her about the potassium depletion that can occur. She had to find that out by reading your book. We had a question,when she went in for the potassium they took a b12 serum again and only after 2 injections it showed up a 1266. Is this normal? how can that be so high after only 2 injections? We are struggling with alot of questions, no Dr.'s she has been to know anything about b12 defficeny. They keep telling her it is stress,that is crazy.She needs help could you give us some insight,she has all the symptoms in your book, but no one will take her seriously . She has a little boy who needs his mother back. Thank you friend despretly trying to save her best friend.
    Anonymous 42789 Replies
    • February 28, 2007
    • 02:51 AM
    • 0
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  • I am looking for any advice or people with similar symptoms. I am 32 years old. I began taking prenatal vitamins about 3 years ago as I was planning to get pregnant. I got pregnant very easily, miscarried, then got pregnant immediately again. At about 20 weeks into my pregnancy, I began to experience L'Hermitte's sign. I didn't know what it was, I just thought it was some pregnancy weirdness. I also began to have severe anxiety and nocturnal panic attacks. I gave birth 5 weeks premature, not sure why. I am still nursing, my daughter is now 20 months old. I still take my prenatal vitamins. When my daughter was one year old, I began to have the L'hermitte's sign again and I had numbness and weakness that travelled all over my body. I had no pain. I also had a tight band sensation around my bra-line. These symptoms lasted a few weeks, then all disappeared except a funny glove like sensation in my hands. I had an MRI, there was a lesion in the C4 area, no brain lesions. The neurologist said I have a 20% likelihood of an MS diagnosis. She wasn't worried about my B12 because it was in the 400's. I am wondering if the high amounts of folic acid in my prenatal vitamins could be masking a b12 deficiency. I also have a history of floating stools and bloating/gassy stomach. My mother and grandmother have thyroid disease and my grandfather just died from pancreatic cancer. The neurologist wants me to get another MRI in a few months to check on the possibility of MS. I don't want to waste my money on the MRI, I would rather explore other causes. But, I don't know if I should get a second opinion or just go with the doctor who isn't worried about B12. Some days the sensations in my hands are worse than others. Some days my face will feel tingly and my tongue will feel tingly, but not always. I never really had any fatigue or pain. Any suggestions will be greatly appreciated.
    Anonymous 42789 Replies Flag this Response
  • hi, thank you so much. Your quick response really helped. She had a few more questions for you if you would'nt mind. she has been to three doctors who are not familiar with hydroxocobalamin, she finally convinced one to give it to her, but he said to only give 100mcg a week.It states in the drug insert the same thing, she is afraid to take more. Does the dose differ from the cyanocobalamin? She feels totally on her own treating this, she has also been dismissed by a neurologist he said that her b12 is not that low at 217. And should not cause these symptoms. Sever aching in legs-leg cramping-numbness in calf and muscle weakness. she would also like to know how long does it take for mental impairment_i.e.- depression,brain fog , inability to think clearly resolve? The doctors have been dismissing her telling her she just needs one injection a week for 4 weeks and one monthly.She thinks she is going crazy,and the keep telling her she just has depression,and one doctor said cronic fatigue syndrom. She is suffering so badly things just keep getting worse. We live in lombard ill. would you be able to suggest a doctor who knows what he is talking about. She has been sick for a year! You are so kind to put all this information out, people need to know about this. And even more so doctors need to be informed. And to all the other people, don't give up your not crazy.Thank you!
    Anonymous 42789 Replies Flag this Response
  • When I contacted my doctor about the constant lump in throat and ocassional fatigue, she sent me to URL and when nothing was found, she just told me I should be taking vitamin B supplements for a few months. And I did....I thought it gave me more strengthent as I didn't need any naps in the after noon like I did before. I am on a diet now, getting around 1500 calories a day and I stopped taking vitamin B (i forget) although the diet says I should be taking it. Should I put my mind to regular vitamin B supplement intake since I am not getting any from my diet????
    KnowSUMthings 153 Replies Flag this Response
  • Just found this site, 4:20 AM - have read and posted to several things but seeing your post just made me cry. I am 66 years old, have suffered for years with fatigue, pain, stomach problems, thryrod, erratic and extra heart beats, and have been diagnosed with everything from MS, MG, Fibromyalgia, Chronic Fatigue, Spinal Problems, Neuropathy, pain sydromes, and of course, stress and depression. I knew I wasn't crazy, and just kept my mouth shut until the pain or fatigue would get so bad I would try again. What is so funny, is that a few weeks ago, went to my primary, told him I was going for a consult with a wonder doctor in NYC, and he looked at my bloodwork and said that my B12 was about 400 (I think) and decided to give me a double or triple shot - don't remember. I noticed I was not crying, and my husband thought I was better with the shot, but I didn'tpay much attention. Went to NYC, and doctor said I had an auto immune disorder (Hashimoto's, dry mouth & eyes, etc, etc,) did a lot of blood work, gave me a shot of methotrexate and told me to inject myself once a week, gave me prescriptions for folic acid, Lyrica, Prednisone - and I am not happy with taking meds anyway, so haven't had anything but first shot of methotrexate, due to take another tomorrow. Don't want to - but it is 2 weeks since I had B12 shot - feel like crying again, and, although I don't sleep well, usually stay in bed, but heart pounding in head and chest and pain and cramping in feet, ankles, legs and hips were so bad had to get up at 1:00AM after lying there for only about 2 hours. Doctor in NYC said you can only get B12 shots every 6 months, primary told my husband I can have them weekly if I want to - Do you think I should do this and forget all the meds I was prescribed - I like to do only one thing at a time so I know what helps and what doesn't, and nothing has helped me over the years. I will be ordering your book. Hope that this was my lucky day. Thanks for your info.
    erni119 14 Replies Flag this Response
  • Just found this site, 4:20 AM - have read and posted to several things but seeing your post just made me cry. I am 66 years old, have suffered for years with fatigue, pain, stomach problems, thryrod, erratic and extra heart beats, and have been diagnosed with everything from MS, MG, Fibromyalgia, Chronic Fatigue, Spinal Problems, Neuropathy, pain sydromes, and of course, stress and depression. I knew I wasn't crazy, and just kept my mouth shut until the pain or fatigue would get so bad I would try again. What is so funny, is that a few weeks ago, went to my primary, told him I was going for a consult with a wonder doctor in NYC, and he looked at my bloodwork and said that my B12 was about 400 (I think) and decided to give me a double or triple shot - don't remember. I noticed I was not crying, and my husband thought I was better with the shot, but I didn'tpay much attention. Went to NYC, and doctor said I had an auto immune disorder (Hashimoto's, dry mouth & eyes, etc, etc,) did a lot of blood work, gave me a shot of methotrexate and told me to inject myself once a week, gave me prescriptions for folic acid, Lyrica, Prednisone - and I am not happy with taking meds anyway, so haven't had anything but first shot of methotrexate, due to take another tomorrow. Don't want to - but it is 2 weeks since I had B12 shot - feel like crying again, and, although I don't sleep well, usually stay in bed, but heart pounding in head and chest and pain and cramping in feet, ankles, legs and hips were so bad had to get up at 1:00AM after lying there for only about 2 hours. Doctor in NYC said you can only get B12 shots every 6 months, primary told my husband I can have them weekly if I want to - Do you think I should do this and forget all the meds I was prescribed - I like to do only one thing at a time so I know what helps and what doesn't, and nothing has helped me over the years. I will be ordering your book. Hope that this was my lucky day. Thanks for your info.Talk about "I was not crazy"--- I knew I was not crazy, but I had all these symptoms. I was willing to try anything- even the unorthodox approaches to my unexplained condition.A NAET practitioner told me that I had developed an allergy to Vitamin B complex. So that explained why in spite of me taking the best quality of Vitamin ever made, I had not been able to recover completely.I did NAET treatment for allergies to vital nutrients- ufff I feel 10 years younger. I was allergic to Vitamin B complex, calcium, sugar, egg protein.I am also allergic to Vitamin T. You should try NAET and make sure you will be using the nutrients.Sincerely,Eatafruit78/
    Eatafruit78 960 Replies Flag this Response
  • My reply to Sally Pacholok, R.N., BSNI have been struggling with some neurologic symtoms like Burning sensation/tingling/numbness in hands and feet, mostly in left side but do see in right side as well and also has cold feet in morning . In last Sept i was disgnose Hashimoto's Thyroidities (Hypothyroidism) since than i have been taking Levoxyl ,m my TSH and FT4 are normal now but i still have fatigue/tiredness/same PN symptoms before it was only tingling and numbness now i have burning sensation as well in the night . My GP tested b12 in oct and it came out 285 which is for her considerably low and need to start B12 supplment orally i started taking 1000mcg /every day . In dec i went to my Neruologist to get some investgation of muscles weakness and PN symptoms. He has done serious test to rule out Mysthania Gravis by testing some antibody test and also perform MMA and Homeostyine. All came back normal accept MMA which was considerably high i don't remember exact value but i can look for my previous result and let you know , however my b12 was normal it was 700. My concern is . Does oral b12 suppement is not working ?. I have been taking B12 supplement since Oct and test MMA in Dec which was high but normal b12 , so that means oral supplement is not really doing anything as i still hav neurologic symptons ?. Do you think Thyroid manifest all these symptoms even though it came to normal after regular dose of levoxyl ?Please advice any help to get my life normal and relief with PN symptoms which is infact getting bit worse than b4 ?I am going to order your book to learn more.Thanks
    Anonymous 42789 Replies Flag this Response
  • This is an excellent teaching case that perfectly demonstrates how high dose oral B12 is not effective in many cases. Your signs and symptoms of PN, fatigue, tiredness, burning and now muscle weakness are from B12 deficiency--- and the oral B12 is not effective in your case. It is not getting through the blood-brain barrier---you need to immediately start B12 injections (hydroxocobalamin 1,000 mcg daily x 7, then once a week x 4) and then go with how the neuro symptoms are going. Your serum B12 of 700 is irrelevant--- it is 700 because you have been taking orally 1,000mcg a day for about 2 months----- but your neurologist proved that your B12 deficiency is still present and the oral B12 is not effective--- because he was smart enought to order the MMA which is still elevated. When the MMA is elevated that means you have a B12 deficiency---- the serum B12 test can pick up analogues in your serum and report out high level from taking oral pills--- but it is not getting through to the nervous system or brain-- so the damage B12 deficiency causes---- is still going on. This is why when people start taking oral or sublingual high-dose B12 on their own--- before getting proper testing can really cloud the clinical picture (ie. lab tests) You having Hashimoto's (which is an autoimmune disease) is common for people to have B12 deficiency because one reason people get B12 deficiency is from an autoimmune disorder called (autoimmune pernicious anemia). People who have pernicious anemia need to have their thryoid checked yearly (because they are at higher risk of getting other autoimmune diseases----especially thryoid--- which is Hashimoto's and Grave's disease. You have to get on injections immediately--- your goal is to reverse the neuropathy---- now you are having muscle weakness----- which the B12 deficiency is progressing---- this is serious--- you can end up in a wheel chair or using assistive devices to ambulate and permanent painful neuropathy, among other problems. Again, I am so pleased your neurologist ordered the MMA---- this is proof the B12 deficiency still exists--- and you had a serious B12 deficiency. Maybe it would have been even higher before taking the pills--- but injections will bring down the MMA rapidly. The goal is to reverse your neuro S/S and any damage. You having a serum B12 of 285 and signs and symptoms of B12 deficiency (numbness of hands and feet, burning sensation, fatigue, etc.) indicated your signs and symptoms were caused by B12 deficiency. Your first doctor or family doctor should have ordered the MMA and homocysteine before placing you on high dose oral B12 (1,000 mcg). (even though a B12 of 285 and S/S of peripheral neuropathy indicates B12 deficiency)--- so I am proud that he/she determined it was B12 and started you on B12--- but you should have received injections--- and you wasted 2 months where your body is still deficient--- and you are now getting more symptoms. Start getting the injections immediately and in 3 weeks repeat the MMA and you will see it in the normal range.You are correct the oral B12 is NOT working, this is B12 deficiency--- not thyroid. I don't understand how your neurologist did not see that the oral B12 was not working, and see through the serum B12 of 700---and place you on a series of injections---- because in your history you have been taking 1,000 mcg orally x 6-8 weeks--- which will correct the blood B12--- making it appear that everything is fine--- but it is not--- and your neurologist proved it by you still having an elevated MMA. I cannot stress how critical it is to get on injections immediately--- time is of the essence--- because you want to reverse as much nerve damage that has been done. Also, do not let them give you only one injection--- or 100mcg---- you need a series of injections and 1,000mcg each--- and hydroxocobalamin would be preferred over cyanocobalamin. If you have any further problems getting treated or need me to speak with your doctors regarding treatment I would be pleased to do so. I can be contacted via my publisher (Quill Driver Books 1- 800- 497-4909) and they will connect us together. Your case clearly demonstrates why oral, SL, and even patches may not be in people's best interest. I do not object to these forms in-between monthly injections (once the series is given)--- but when one stops and educates themselves on what B12 deficiency does to the body--- causes demyelination--- just like MS does--- and can permanently damage nerves-- cause permanent brain damage--- cognitive problems, dementia---you can't play around with this. Misdiagnosis, undiagnosis, or delayed treatment, or poor treatment can all result in permanent injury or disability.
    Anonymous 42789 Replies Flag this Response
  • Sally, is it possible that a B12 deficiency may be incorrectly diagnosed as multiple sclerosis? I was diagnosed with MS three years ago, at the age of 29. My symptoms were rather mild (tingling/numbness in fingers, L'Hermitte's sign, occasional double vision), but an MRI of my brain and cervical spine did reveal numerous lesions. My lumbar puncture was negative for O-bands, though these are usually found in MS patients. Based on the MRI and my symptoms, I was diagnosed with MS and began taking Betaseron, one of the interferon treatments for MS. I didn't really question my MS diagnosis until late last year, when my internist discovered in my annual bloodwork that I was slightly anemic, and further testing revealed I had a B12 deficiency (serum level of 178). My internist then ordered MMA and Hcy tests, which were within the normal ranges. However, given my fatigue, neuro issues, etc., he started me on B12 injections in January--1x/day for a week, then 1/week for a month, now 1x/month. Since then, I have been feeling remarkably better, no MS symptoms, and no new lesions on my recent MRI done March 19th. I have continued to take the Betaseron concurrently with the B12 injections. My question for you is, is it possible that all along I have only had a B12 deficiency, and not MS? How do I go about separating improvement due to B12 from improvement due to Betaseron? I have an appointment with my neurologist next Monday and I would like to be as informed and prepared as possible, as I suspect he will not be interested in discussing the possibility of discontinuing the Betaseron. I do, in fact, have a copy of your book, I bought it shortly after I found out about my B12 level and it started me thinking about the whole MS thing. Thanks for any help you can give me.
    Aquarian Librarian 1 Replies Flag this Response
  • Sally,I have a question about my medical history. I have been trying to get answers for 4 years now and everything has gotten worse instead of better. I started seeing a Rhem for multiple joint pain with family hist of RA with 2 aunts. Bloodwork showed low ferritin(16) that was treated with hemacyte plus for 2 yrs. My level is now up to 71. Meanwhile additional symptoms developed as follows: dry eye and mouth with a diagosis of Sjogrens (lip biopsy) which led to infections, mouth and nose and throat ulcers, bladder pain and inflammation (with no explanation) which led to infections, petichie all over body, fatigue, brain fog and memory issues, some arthritis in multiple joints, pain in left side under ribs in back. Blood tests have varied...elavated SED, elavated C reactive protein, elavated in indeterminate range Cardiolipin, Parvovirus positive, RA-negative, celiac-negative, lupus anticoagulant-indeterminate range, slightly elavated gamma protein, slightly elavated BUN/Creatine ratio (1 month ago),slightly elavated TSH (2 wks ago), always elavated CO2. I get no explanations on most of these blood tests and symptoms. Two weeks ago the PA in the Rhem office told me that he thinks I have Fibro. not Lupus as they thought possible in the beginning! I dont know what it is, but I do know that I am 35 and I am tired of feeling more like 65 and I have gotten VERY frustrated!! Currently I am on Plaquenil, Mobic, Prednisone 5 mg, Neurotin (2 wks ago), Flexaril (Bedtime) Any suggestions or Ideas??Thank You!!Dee Deedkeigans@hotmail.com
    Anonymous 42789 Replies Flag this Response
  • Sally,I have a question about my medical history. I have been trying to get answers for 4 years now and everything has gotten worse instead of better. I started seeing a Rhem for multiple joint pain with family hist of RA with 2 aunts. Bloodwork showed low ferritin(16) that was treated with hemacyte plus for 2 yrs. My level is now up to 71. Meanwhile additional symptoms developed as follows: dry eye and mouth with a diagosis of Sjogrens (lip biopsy) which led to infections, mouth and nose and throat ulcers, bladder pain and inflammation (with no explanation) which led to infections, petichie all over body, fatigue, brain fog and memory issues, some arthritis in multiple joints, pain in left side under ribs in back. Blood tests have varied...elavated SED, elavated C reactive protein, elavated in indeterminate range Cardiolipin, Parvovirus positive, RA-negative, celiac-negative, lupus anticoagulant-indeterminate range, slightly elavated gamma protein, slightly elavated BUN/Creatine ratio (1 month ago),slightly elavated TSH (2 wks ago), always elavated CO2. I get no explanations on most of these blood tests and symptoms. Two weeks ago the PA in the Rhem office told me that he thinks I have Fibro. not Lupus as they thought possible in the beginning! I dont know what it is, but I do know that I am 35 and I am tired of feeling more like 65 and I have gotten VERY frustrated!! Currently I am on Plaquenil, Mobic, Prednisone 5 mg, Neurotin (2 wks ago), Flexaril (Bedtime) Any suggestions or Ideas??Thank You!!Dee Deedkeigans@hotmail.com Sounds like you have something autoimmune going on. Since your TSH was elevated maybe they can place you on a low dose thyroid medication and see if you respond--- hypothyroidism can cause many symptoms (some of which you described)-- but you definitely should have the MMA test, homocysteine, B12, gastrin, and parietal cell antibody. Steroids can help in autoimmune pernicious anemia --- and you are on Prednisone--- but you still need the tests above done. (Steroids are not the way to treat pernicious anemia--- but they found out in the mid 20th century while doing research that giving people steroids improved the autoimmune phenomenon of pernicious anemia and allowed the gut to absorb B12--- this is how they realized that one form of B12 deficiency "autoimmune pernicous anemia" is an autoimmune disease. I am not sure if Plaquenil will interfere with the MMA test. Get the tests done first. Regardless, since they are swaying towards fibromyalgia--- they should not object on a trial of B12 injections. Again, the slightly elevated TSH should be treated--- see if you get a response---- and they monitor your TSH. Armour thryoid is a natural thyroid verses synthetic and some people respond better---- you still need a prescription for it. Mary Shomman is a thyroid advocate and has written some books, and has an excellent website. Do not start taking high-dose B12 until you get proper testing. Sounds like your doctor has done a lot of testing--- and rheumatologists know about all the autoimmune diseases---- they shouldn't mind ruling out pernicious anemia. (in addition you at one time had a low ferritin--- which as you know indicates poor iron store--- a low ferritin is common in pernicious anemia--because this disorder causes achlorhydria--- no stomach acid, or hypochlorhydria (low stomach acid) and we commonly see low ferritin and low B12 together in people with autoimmune pernicious anemia, gastric atrophy, and achlorhydria. No, at 35 you definitely should not be feeling like this! Obviously something is going on, and it is not in your head.
    Anonymous 42789 Replies Flag this Response
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  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx
    Anonymous 42789 Replies Flag this Response
  • I just got results of my blood test performed my new doctor yestarday. She found my TSH value went too low , it is right now 0.02 which is way lower than average lower value . I initially disgnosed Hypothyroidism due to Hashimotos thyroditis.She said that can be one of the reason of your muscles weakness and fatigue as well so she wanted me to stop T3 (cytomel) and don't take any T4 for two days and than start with Levoxyl 75mcg. I am waiting for MMA/Intrinisic fator Antibody) result. I am still having hard time to get HYdroxcololimin injection , my doctor is trying that vendor you sent me. Thanks for all your help.
    Anonymous 42789 Replies Flag this Response
  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx B12 injections every 3 months is way too long of a period to wait in-between injections. Make sure your doctor is giving you 1,000 mcg verses 100mcg of vitamin B12 --- and again the hydroxocobalamin. I have read in some medical literature where they state you can give 100mcg or 1,000 mcg every 3 months using the hydroxocobalamin--- but this clearly is not enough. It may change the hematologic picture---- but not the neuro picture--- if you are not getting enough B12 --- your neuro symptoms will return. 1. You need to receive more frequent B12 injections at 1,000 mcg at least every 4 weeks. Because you have been treated so long every 3 months--- and are feeling poorly---- I would reinstitute the series of injections and see if your symptoms vanish or improve. 2. Why do you have B12 deficiency? Your doctor needs to rule out celiac disease, H. pylori (which are GI reasons you could have B12 deficiency), or do you have autoimmune pernicious anemia--- gastric atrophy, achlorhydria. Since you have had B12 deficiency for so long--- and got it at a young age---- you should be having rountine endoscopy of your stomach and duodenum. They need to take a stomach biopsy--- to see if you have gastric atrophy, H.pylori--- plus when you have autoimmune pernicious anemia--- you are at a higher risk of getting stomach cancer. Because you are having such GI symptoms also--- an endoscopy is a must. 3. If you do indeed have autoimmune pernicious anemia--- and you have an autoimmune disorder--- your doctor should check you for other autoimmune disorders (thyroid, etc.) for you are higher risk. 4. Because you are getting B12 injections--- your serum B12 will be normal even high--- but it is NOT reflecting what is getting into the nervous system. Ask your doctor to prescribe you a 30 ml vial of hydroxocobalamin and learn how to self inject (or a family member) if one of the reasons he/she gives it so seldom is to cut down on office visits. 5. Some people have Transcobalamin II deficiency--- which they have an impairment in intestinal absorption of B12. This disorder of plasma B12 transport plays an important role in binding B12 within the enterocyte (intestinal cell) prior to its entry into the circulation. Transcobalamin II deficiency--- which is another reason for B12 deficiency--- can be successfuly treated by bypassing the normal physiology by giving B12 injections, which ensures B12 delivery into cells. This can occur if a person has a congenital defect of the distal ileum (last part of the small intestine), or diseased ileum (either from a chronic disorder or surgical removal). These people cannot swallow pills for absorption---- sublingual route and patches---need to be tested in this population---- have not read any studies using these routes. 6. You truly have autoimmune pernicious anemia--- you are at higher risk for getting other autoimmune diseases--- and your doctor should check you. 7. I would get the series of B12 injections again--- up your maintenance dose to every 3-4 weeks after the series, and make sure the B12 injections are 1,000 mcg or 1ml each (not diluted down) and is hydroxocobalamin. Have you had a parietal cell antibody, intrinsic factor antibody, or serum gastrin. When you have a biopsy of your stomach they should also biopsy your intestine for celiac disease--- which can cause B12 deficiency as well as other nutritional deficiencies such as iron.You can take high-dose methyl-B12 lozenges inbetween injections 5,000mcg--- but I would definitely get the injections. With all your stomach symptoms--- you need your stomach scoped and biopsied--- ruling out celiac disease, H.pylori, gastric or duodenal ulcer, gastric cancer, gastric atrophy. Your doctor needs to know why you were B12 deficient at such a young age--- for it will dictate what future tests and routine screening you need for your health.The neuro symptoms you are having sound like you are not getting enough B12---- and your new doctor proved this by doing a serum B12 (which means you really aren't getting enough B12-- you are being underdosed so your symptoms are returning. The B12/IF pills are not as good as the injections. He could do a MMA test---to see if this helps show anything--- but it may come back normal since you are already getting injections---and will depend when your last injection was. Regardless, do not waste time and start the injections--- if your symptoms are from inadequate B12 therapy---you want to reverse any neuro signs/symptoms before they become permanent. Your doctor of course also needs to rule out other disorders.
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  • To Tenngal71: It is interesting that your husband is a veteran (39 years old) and has a B12 deficiency. Aprrox 6-8 weeks ago, CNN was reporting the poor care/conditions at VA hospitals--- one woman was giving testimony-- and all the signs and symptoms she was reporting sounded like B12 deficiency---and all these veterans (coming back from Iraq) need to have B12 deficiency ruled out (they shouldn't assume that any of their mental or neuro signs or symptoms are just post-traumatic stress disorder or are psychological--- they could also have a true medical problem causing their symptoms. This really peeked my interest further, because I was contacted by the Ireland Medical Journal to do a Q and A for their journal regarding B12 deficiency. There is a physican researcher in Ireland who believes that they are seeing more B12 deficiency cases because of the environment---(we already know that cyanide, mercury--- binds with B12---therefore using it up--- and can cause deficiency or exacerbate an existing deficiency) so one just wonders the chemical warfare that potentially could be used in our present war---- makes all the more reason why vetrens could be at higher risk for B12 deficiency. All veterns who are symptomatic need B12 deficiency ruled out. If they have received nitrous oxide (laughing gas) this destroys B12 in the body. (they could get this for skin grafts, surgeries from injuries received in war, and any dental work). In addition, they are more than likely not eating a diet full of B12 (meat, eggs, milk, cheese)--- and the amount of B12 in food or a basic vitamin supplements is not enough. Your husband who was diagnosed with B12 deficiency should have received a series of B12 injections--- to rebuild his stores. 1,000 mcg IM every day x 7 days1,000 mcg IM every week, x 4 weeks1,000 mcg Im every 4 weeks for maintenance He could take a methyl-B12 5,000 mcg lozenge daily inbetween injections.If he only received one shot--- and then had to wait another month for the next shot---- this is not enough. If the VA is missing injections because they did not order it--- that is absurd---- this is a serious condition, and must be treated properly!Don't let his doctor underdose him or treat him miserly with vitamin B12. His staff can teach you how to give the injections. Once he receives an injection, it typically makes his blood work look fine and his B12 level high enough--- which discourages many doctors to continue proper treatment. You don't monitor B12 deficiency by seeing what the serum B12 level is. Once your husband was identified with B12 def. , he needed the series, and continued treatment for life. His doctors should investigate why he was B12 deficient to begin with. To monitor his B12 status a test called methylmalonic acid is a more sensitive screening tool, if elevated indicates B12 deficiency at the tissue and cellular level. If you know of someone reliable in the government to address B12 deficiency in veterans, (that I could contact) to promote proper testing and treatment, please let me know.An interesting site you may want to visit is www.B12.com B12 deficiency attacks numerous body systems (neurologic, hematologic , immunologic , vascular, gastrointestinal, musculoskeletal, and genitourinary), so the signs are symptoms are many--- but everyone is different on how they present-- and they can predominate in one system.Typically B12 deficiency strikes the neuro system and people exhibit neuropsychiatric manifestations. So anyone with neuro or psych signs and symptoms must be tested for B12 deficiency:---paresthesias (numbness or tingling to extremities)---dizziness---balance problems---gait problems---clumsiness (incoordination)---frequent falling---tremor---muscle spasticity---visual problems---impaired fine mortor coordination---nocturnal cramping in arms and legs (like restless leg syndrome)---bladder-bowel incontinence (advanced--when B12 def. has been undiagnosed or misdiagnosed for an extended period of time) psych problems---depression---apathy---irritability---poor memory, memory loss, cloudy thinking---confusion, disorientation---dementia---paranoia---delusions---violent behavior---suicidal ideations---hallucinations---psychosis Other common signs and symptoms---fatigue---weakness---falls---pallor---anemia (but you do not have to have--- which fools doctors---sore tongue---weight loss There are more signs and symptoms--- but B12 deficiency attacks the myelin and is a demyelinating disorder---- similar to multiple sclerosis. That is why there are so many neuro signs and symptoms. If B12 deficiency diagnosis is made late--- and people suffer from signs and symptoms for some time--- they may suffer permanent neurologic injury. This is what we are trying to prevent--- disability, poor health, and even death (from misdiagnosis). B12 deficiency is serious---- in the late 19th century and early 20th century people died from B12 deficiency---(for their was no cure back then), eventually became anemic--- and they called it pernicious (deadly) anemia. Can learn more from our book, "Could It Be B12? An Epidemic of Misdiagnoses," Quill Driver Books, 2005. 13 reviews on Amazon.com
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  • Hi Sally, I am 30 year old women leaving in the UK & have been feeling pretty ill for about 3 months (with muscle aches, mild tremors, slight unbalance when walking, vision blurriness - with new floaters I have never had before, extreme fatigue, sore tongue, small white patches on skin). Although I have been having dizzy spells for about six months in total.I have had lots of blood work done by my doctor (which all came back fine) except for a low b12 of 162 (pg/ml) and fairly low / normal folic acid levels and was referred to a haemotologist. The haemotolgist said that I have good blood and should begin B12 injections as soon as possible & if the injections don't start clearing up my neurological symptoms within 6 weeks I should go to a Neurologist - she also gave me another B12 serum blood test (which came back 315 pg/ml - although I had taken some oral B12)I have had 5 B12 injections (1,000mcg hydroxocobalin) and am slowly starting to feel better and have 6 more planned, My energy levels have definately risen and I am definately not so achy. Although I am still having a slight difficultly with feeling off balance when I walk and blurry vision. I have ordered Jarrow 5,000mcg Methocobalin that I will take daily when not having my injections.My question is how long do you think the B12 supplements may take to work? And also is it to late for me to have MMA tests / HCY tests now that I have started taking supplements? Also, Would you recommend the Schilling test to determine the cause of my difficiency?Thanks, Kate
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  • Hi Sally, I am 30 year old women leaving in the UK & have been feeling pretty ill for about 3 months (with muscle aches, mild tremors, slight unbalance when walking, vision blurriness - with new floaters I have never had before, extreme fatigue, sore tongue, small white patches on skin). Although I have been having dizzy spells for about six months in total. I have had lots of blood work done by my doctor (which all came back fine) except for a low b12 of 162 (pg/ml) and fairly low / normal folic acid levels and was referred to a haemotologist. The haemotolgist said that I have good blood and should begin B12 injections as soon as possible & if the injections don't start clearing up my neurological symptoms within 6 weeks I should go to a Neurologist - she also gave me another B12 serum blood test (which came back 315 pg/ml - although I had taken some oral B12) I have had 5 B12 injections (1,000mcg hydroxocobalin) and am slowly starting to feel better and have 6 more planned, My energy levels have definately risen and I am definately not so achy. Although I am still having a slight difficultly with feeling off balance when I walk and blurry vision. I have ordered Jarrow 5,000mcg Methocobalin that I will take daily when not having my injections. My question is how long do you think the B12 supplements may take to work? And also is it to late for me to have MMA tests / HCY tests now that I have started taking supplements? Also, Would you recommend the Schilling test to determine the cause of my difficiency? Thanks, Kate Hi Kate,Yes, it is too late to have the MMA and Hcy tests, but you obviously have a B12 deficiency. You are very symptomatic and have a documented low B12. The MMA test is to help people who have normal serum B12 levels but are symptomatic--- so in your case it is not neccessary. It is an adjunctive test to aid in diagnosis, and we typically reccommend having all 3 at once (before therapy)---- but in your case, no problem. I am pleased that your doctor is giving you hydroxocobalamin injections and has given you the series. (Just make sure he/she is giving you 1,000 mcg in every injection verses 100mcg)----this is important. I think the injections are better than the lozenges (ESPECIALLY IF YOU HAVE NEUROLOGIC SIGNS OR SYMPTOMS)---and you do. I still would take the methyl-B12 lozenges between injections---- but you may need to continue frequent injections for the next 6 months (every 3 days or at least once a week)---- trying to recover whatever injury you have.Yes, you could have a Schillings test--- but it is not necessary. You should have antibody tests for pernicous anemia (PA) , and a serum gastrin. You should get thryoid tests and ferritin to check out your iron stores. It takes about 6 months to a year from the time B12 treatment was started to see what recovery you get or what injury has taken place. After your 6 weeks of treatment--- yes see the neurologist ----it sounds like you are on the every week shot now----- again, you need to get these injections every week or even every 3 days to try to repair as much injury as possible. At about 6 months you will have a good idea of where you will be at---- hopefully all or most of your symptoms will resolve. It sounds like this has been going on for some time--- because you mentioned you had dizziness for about 6 months--- and dizziness is one of the symptoms of B12 deficiency. Your B12 deficiency may be from an autoimmune disorder (PA) and because you have white patches on your skin--- show them to your doctor--- this may be vitiligo which is an autoimmune disorder--- highly related to pernicous anemia (PA). This will direct your doctor to check you for other autoimmune disorders (such as thyroid-- Hashimoto's thyroiditis, Graves disease). Your doctors will have to figure out why you had a B12 deficiency to begin with: diet, eating disorder, malabsorption syndrome (celiac disease, Crohn's, bacterial overgrowth) H. pylori, drugs (proton-pump inhibitors, H-2 blockers, chronic antacid use) nitrous oxide, autoimmune disorder (pernicious anemia), etc.) B12 deficiency is a very slow, insidious process that does not happen over night or over weeks or months---- your body is gradually depleted--- and then you begin having symptoms. This is why when people have any of the signs and symptoms of B12 deficiency--- their doctors should readily test them---- because we are trying to prevent permanent neurologic injury and disability. I wish you well--- and keep me posted of your recovery! Sally
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  • 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...
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  • 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
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  • 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. SallyThank you so much for the reply! I really appreciate it. This whole thing has me so anxious and it keeps dragging on and on.My father went on a really stupid starvation diet to lose weight and hardly ate anything for two months, which I assumed was why his B12 and electrolyte levels were so low. But, I inherited other allergies from him, so maybe I inherited a gluten intolerance from him, too? Can a person's body suddenly go into a general agressive allergy mode? I've never gotten so many hives from bugs in my life as I have in the last month or two.When I was researching the various causes of B12, I considered celiac disease because so many of the symptoms seemed to match, but my doctor kind of shrugged it off. Should I ask her to test for it or should I ask the allergist to test for it? Or some other kind of specialist? I do think that celiac disease could be an explanation; I ate half a box of matzoh to test it out and ended up with huge amounts of gas and exhausted through the following afternoon.Now that you mention "intrinsic factor", I think I did see "IF" written on the blood test form and that came back normal. I'll try to talk my doctor into a urinary MMA. And try to get her to tell me what she's testing for and why. I've never heard of Addison's Disease. I'll google and talk to my doctor about it. Thanks for the suggestion!At what B12 level (both for blood and MMA) should I ask for a B12 shot? My doctor didn't seem at all concerned about my B12. She didn't even suggest that I take a vitamin pill, though she told me in the past that she thinks that taking vitamin pills is unnecessary.Also, if I take the B12 lozenges, should they just be B12 or should they be the ones that also include Folic Acid and B6? I started taking the plain B12 ones this past week because I was so worried, but I guess I should stop so that it doesn't mess up the MMA. Thanks again. I've learned far more from this thread than I have from my doctor.
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