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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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  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx
    Anonymous 42789 Replies Flag this Response
  • Hi, I am so glad to have found this webiste!I am 28 years old and discovered that I had a b12 deficiency when I was 21. I started to have many scary neurological symtoms along with stomach and bowel problems. After a few trips to the doctors he told me I had a deficiency and he was sending me to see a gastroenterologist for some investigations.They did a schillings test on me and it came back as borderline. My doctor was very vague about the whole thing and told me that I would need to have b12 injections for the rest of my life. From what I can remember I had one every day for about a week and then once every 3 months.The symptoms seemed to subside after a while but after about a year I started with terrible fatigue and almost flu like symptoms. This carried on and I was also suffering with neurological symptoms such as dizziness and pins and needles which seemed to come and go.I had an MRI and other tests for MS but were clear. whenever I had blood tests they said they were ok.Nobody really knew what was wrong with me and to be honest the doctors couldnt be bothered with me. They labelled it as post viral fatigue and fibromyalgia.Last year I had some more detailed bloods done and it showed I had a positive ANA along with a few other positive antibodies, but again nothing was conclusive so they washed their hands of me.Every so often I seem to suffer from terrible stomach problems, just as I did when I was first diagnosed with the b12 deficiency. I am also getting terrible nausea and loss of appetite. The symptoms seem to have gotten even worse these last few weeks, and I have been having the exact same kind of symtoms as when I was first diagnosed. Usually the stomach problems go away after a week or so but they are still here after a month.I really don't think my doctor is checking my b12 levels now as I asked him about this and he said that my problem is sorted now as I take the injections.I am sure that all of my problems over the years are due to my deficiency and I feel like crying because nobody seems interested.I have even had to give up work as my body is too tired to function properly.I saw a private doctor last year and he told me my b12 levels were low and prescribed me some tablets called intrisi/b12/folate.he said they were just as good as injections. I take one per day and still have my injection every 3 months but to be honest they havent made any impact.I would really appreciate some advice on my situation.Sorry its so long!charlotte. ukxx B12 injections every 3 months is way too long of a period to wait in-between injections. Make sure your doctor is giving you 1,000 mcg verses 100mcg of vitamin B12 --- and again the hydroxocobalamin. I have read in some medical literature where they state you can give 100mcg or 1,000 mcg every 3 months using the hydroxocobalamin--- but this clearly is not enough. It may change the hematologic picture---- but not the neuro picture--- if you are not getting enough B12 --- your neuro symptoms will return. 1. You need to receive more frequent B12 injections at 1,000 mcg at least every 4 weeks. Because you have been treated so long every 3 months--- and are feeling poorly---- I would reinstitute the series of injections and see if your symptoms vanish or improve. 2. Why do you have B12 deficiency? Your doctor needs to rule out celiac disease, H. pylori (which are GI reasons you could have B12 deficiency), or do you have autoimmune pernicious anemia--- gastric atrophy, achlorhydria. Since you have had B12 deficiency for so long--- and got it at a young age---- you should be having rountine endoscopy of your stomach and duodenum. They need to take a stomach biopsy--- to see if you have gastric atrophy, H.pylori--- plus when you have autoimmune pernicious anemia--- you are at a higher risk of getting stomach cancer. Because you are having such GI symptoms also--- an endoscopy is a must. 3. If you do indeed have autoimmune pernicious anemia--- and you have an autoimmune disorder--- your doctor should check you for other autoimmune disorders (thyroid, etc.) for you are higher risk. 4. Because you are getting B12 injections--- your serum B12 will be normal even high--- but it is NOT reflecting what is getting into the nervous system. Ask your doctor to prescribe you a 30 ml vial of hydroxocobalamin and learn how to self inject (or a family member) if one of the reasons he/she gives it so seldom is to cut down on office visits. 5. Some people have Transcobalamin II deficiency--- which they have an impairment in intestinal absorption of B12. This disorder of plasma B12 transport plays an important role in binding B12 within the enterocyte (intestinal cell) prior to its entry into the circulation. Transcobalamin II deficiency--- which is another reason for B12 deficiency--- can be successfuly treated by bypassing the normal physiology by giving B12 injections, which ensures B12 delivery into cells. This can occur if a person has a congenital defect of the distal ileum (last part of the small intestine), or diseased ileum (either from a chronic disorder or surgical removal). These people cannot swallow pills for absorption---- sublingual route and patches---need to be tested in this population---- have not read any studies using these routes. 6. You truly have autoimmune pernicious anemia--- you are at higher risk for getting other autoimmune diseases--- and your doctor should check you. 7. I would get the series of B12 injections again--- up your maintenance dose to every 3-4 weeks after the series, and make sure the B12 injections are 1,000 mcg or 1ml each (not diluted down) and is hydroxocobalamin. Have you had a parietal cell antibody, intrinsic factor antibody, or serum gastrin. When you have a biopsy of your stomach they should also biopsy your intestine for celiac disease--- which can cause B12 deficiency as well as other nutritional deficiencies such as iron.You can take high-dose methyl-B12 lozenges inbetween injections 5,000mcg--- but I would definitely get the injections. With all your stomach symptoms--- you need your stomach scoped and biopsied--- ruling out celiac disease, H.pylori, gastric or duodenal ulcer, gastric cancer, gastric atrophy. Your doctor needs to know why you were B12 deficient at such a young age--- for it will dictate what future tests and routine screening you need for your health.The neuro symptoms you are having sound like you are not getting enough B12---- and your new doctor proved this by doing a serum B12 (which means you really aren't getting enough B12-- you are being underdosed so your symptoms are returning. The B12/IF pills are not as good as the injections. He could do a MMA test---to see if this helps show anything--- but it may come back normal since you are already getting injections---and will depend when your last injection was. Regardless, do not waste time and start the injections--- if your symptoms are from inadequate B12 therapy---you want to reverse any neuro signs/symptoms before they become permanent. Your doctor of course also needs to rule out other disorders.
    Anonymous 42789 Replies Flag this Response
  • Thanks for the reply. The Valerone is a hormone mixed in with the B12. Several years ago i was tested and had zip hormone level and was having panic attacks. I know I have a history of a sensitive inner ear also could be the dizzy spells but the fatigue is what is really so bad. All other lab work has been normal. The internal doctor didn't mention hearing any bruits in the carotid area so guess they were ok. Haven't had a MRI in a long time though on brain. Just checked on drugs.com and saw where a lot of my symptoms could be due to interactions of most all my medicines that I take plus fatigure, nausea, dizziness etc. Thinking about stopping what I can and then adding back one at a time if have to and see if can tell the worst one.I go back in May to the internal doc, he was not happy the way I looked as to "exhausted" so at least he showed concern too. Thanks again for the post
    agypsygrl 79 Replies Flag this Response
  • Hi- I have been told I have a b12 deficiency and have been on the sublingual tablets for about a year now. I also have horrible digestive issues that nobody can seem to figure out. I have had a whole slew of tests and tried a bunch of meds. My symptoms in general are abdominal pain, nausea, frequent bowel movements, diarrhea and within the last few months significnt weight loss. I also have high platelets and the b12 deficiency which both started after the digestive problems. I am a vegetarian and lactose intolerant which may explain the b12, but I feel there is something more going on with it all. I have had terrible leg cramps for awhile now too. Usually in my upper legs but sometimes in the calves. A few days ago I fainted- this was the first time it had ever happened to me. I have no idea why it happened. After fainting I had a low grade fever of 99.7 for about 3 hrs. Since then I have been nauseous (which I usually am) and dizzy (which I usually am NOT). I have been waking up like that. It's not the kind of dizzy I am used to with average low blood pressure upon standing. I feel like I am spinning when I am lying down!!! COuld this all have to do with b12? pernicious anemia? IBD? i am trying to get a diagnosis or at least some form of treatment. any help is MUCH appreciated.
    Anonymous 42789 Replies Flag this Response
  • Hi- I have been told I have a b12 deficiency and have been on the sublingual tablets for about a year now. I also have horrible digestive issues that nobody can seem to figure out. I have had a whole slew of tests and tried a bunch of meds. My symptoms in general are abdominal pain, nausea, frequent bowel movements, diarrhea and within the last few months significnt weight loss. I also have high platelets and the b12 deficiency which both started after the digestive problems. I am a vegetarian and lactose intolerant which may explain the b12, but I feel there is something more going on with it all. I have had terrible leg cramps for awhile now too. Usually in my upper legs but sometimes in the calves. A few days ago I fainted- this was the first time it had ever happened to me. I have no idea why it happened. After fainting I had a low grade fever of 99.7 for about 3 hrs. Since then I have been nauseous (which I usually am) and dizzy (which I usually am NOT). I have been waking up like that. It's not the kind of dizzy I am used to with average low blood pressure upon standing. I feel like I am spinning when I am lying down!!! COuld this all have to do with b12? pernicious anemia? IBD? i am trying to get a diagnosis or at least some form of treatment. any help is MUCH appreciated.Hello,First of all--- you need to get on B12 injections--- many people do not do as well on the B12 lozenges--- and you already have a documented deficiency. Actually the injections are cheaper than lozenges--(if you or family member gives them) and are more effective. You have to get the series of B12 injections, then taper down to the once a month or every 3 week maintenance shot. If you doctor does a serum B12 level on you --- it will be sky high--- from the lozenges--- but may not reflect what is being crossed over thru the blood brain barrier.Second, you may have celiac disease which is also called gluten enteropathy-- it is an intolerance to gluten (found in wheat, rye, barley, oats). Celiac sprue is a disease in which there is intestinal malabsorption of virtually all nutrients, Some of the common deficiencies seen are (vitamin B12, iron, calcium, vitamin D, vitamin K). (Gluten free diet also excludes buckwheat and millet because of lack of reliable information about their glutamine content).Because you have B12 deficiency, and all the GI symptoms you wrote above (really sound like celiac disease)--- you have to insist on testing.1. You need to make an appointment with a gastroenterologist (GI doctor)2. The GI doctor needs to investigate celiac disease (along with any other disorder he/she deems appropriate when seeing you.3. You need to have these blood tests: tissue transglutaminase, IgA and IgGendomysial antibodies, SGOT, SGPT, alk phos4. The GI doctor need to schedule you for an EGD (endoscopy of you esophagus, stomach and duodenum)--- they sedate you --- take a scope that has a light on the end-- and will examine the lining of the above--- take biopsies, etc.5. Make an appointment immediately. --- I would also go on-line and Google celiac disease and get educated or go to a local library or book store and look through books authored on celiac disease--- and pick one that looks good--- to get yourself educated. One recommended by someone on this site was from Dr. Peter Green.6. If a person has B12 deficiency--- and it's cause is from celiac disease--- by just replacing the B12 and not taking care of the true disease entity (which is gluten intolerance) this is doing the patient a great disservice-- and the patient will still be ill--- and malabsorbing other nutrients, will be sickly, and the intestinal mucosal will continue to be destroyed and you will have a host of other nutritional problems and high risk of getting lymphoma.You still need the B12 replacement.To recap--- switch to B12 injections-- get series to replace stores-- regardles of what the serum B12 is--- get into a GI doctor soon--- and have him/her investigate celiac disease or gluten enteropathy.Sally
    Anonymous 42789 Replies Flag this Response
  • Absolutely not normal. You can ask the doctor what other ingredients are mixed in with it (preservatives)--- is the hydroxocobalamin from a pharmaceutical company? It sounds as if your wife is having other health issues. I can't stress how important it is to follow-up on this gluten intolerance. Your wife needs to have celiac disease ruled out properly. If she has it--- and does not cease eating gluten (as well as many supplements and other products have gluten in them)---- she will always feel ill and she will slowly destroy her body. In a few posts back you stated she was found to be "extremely intolerant" to gluten---that means she has a major problem. She needs to be seen by a gastroenterologist--- have an EGD done and biopsy taken--- other blood tests--- and needs to go on a gluten free diet. Sally Sally, The brand of hydroxocobalamin she has been prescribed is Neo-Cytamen. She has now had her third injection. Any nausea she had seems to have passed so maybe it was just coincidence. She is also slowly starting to cut out Gluten and her diet should be completely gluten free hopefully very soon. The course she is being given is one injection(1000mcg/ml) every second day for two weeks, then one injection a week for one month, then one injection a month. Do you agree with this ? Thanks Alex
    Anonymous 42789 Replies Flag this Response
  • Sally, The brand of hydroxocobalamin she has been prescribed is Neo-Cytamen. She has now had her third injection. Any nausea she had seems to have passed so maybe it was just coincidence. She is also slowly starting to cut out Gluten and her diet should be completely gluten free hopefully very soon. The course she is being given is one injection(1000mcg/ml) every second day for two weeks, then one injection a week for one month, then one injection a month. Do you agree with this ? Thanks AlexYes, this course sounds very good. Also, for less pain getting the injection--- she can use a 25 gauge needle verses a 21.5 gauge needle---- the higher the gauge the smaller the diameter--- and it will hurt less. The needle I draw up the B12 in, I discard---then I attach a new needle--25 gauge-- 1 1/2 inch long, to the syringe with the B12 in it. The reason you change needles is because it gets dulled going through the rubber top. Sally
    Anonymous 42789 Replies Flag this Response
  • Here is a list of related symptoms, symptoms and signs of individidual and combined methylb12, adenosylb12 and folate deficiencies. It's an interesting exercise to see how many of these a person has. While many of these symtoms have possible multiple causes, they also all have one "same cause". I was amazed to see that symptom lists for b12 deficiencies varied considerably from country to country. This is a combined list of all the symtoms from research done in many countries. There are still more to come. Is it any wonder that b12 deficiency is difficult to spot? It can look like many other things at the same time.mouth sensitive to hot and coldsore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habits. abdominal pain loss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptomspalenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature formerly known as megoblastic madnessirritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysisweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasantalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid wordblurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive Lhermittesneuropathiesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of details and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesdecreased deep tendon reflexPositive bilateral Babinski refleximpaired white blood cell responsepoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alertelevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected foliculesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurs.poor hair conditionpainfully tight muscles, especially legsfrequent muscle spasmsthin nailsBariatric surgeryDilantinrelative ever needing B12 shots or supplementsAS INFANT OR CHILDdelayed myelinationfailure to thrivedelayed speechdepressionfrequent toncilitis until removedfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for months sometimesheadachesgrowing painsskin problemsdandruffallergiesasthma
    Freddd 3576 Replies Flag this Response
  • Hi Sally, See that list of symtoms and signs I posted? I had about 2/3s of them starting with delayed myelination as an infant/child. At the time I started methylb12 I had over 70 of those. I was a total basket case with terribly severe FMS with no energy at all, burning lactic acid type pain in all my muscles for 16 years, severe pain in the muscles all over my body including the 18 firbro points, uncontollable spasms all over my body (dilantin and valium controled these sort of. I didn't seleep more than 5 hours a night for decades and it wasn't restorative. There was zero recovery from exercise. An added pain from exercise might last for months and months. I was in pain management for 3 years prior to trying methylb12. No doc EVER suggested testing serum levels. As soon as they found out I was on 1000-1500 mcg of oral cyanocobalamin and 400-800 mcg of folic acid they elimiminated from thought the posibility that it was b12 deficiency. I went to all kinds of specilists. My testosterone dtopped through the floor. I have benn taking thyroid extract, synthroid or levothyroxin since age 8. I'm 59 now. I had IBS, burrning bladder, beef-red sore burning tongue, burning mouth, frequent reflux and vomiting, severe dizzyness, nausea, anorexia, protein specific anorexia, polyneuropathy - peripheral, autonomic etc neuropathys, numbness in feet muscles (still present), blurry/double vision in each eye, brisk reflexes, cracks around corner of mouth, allergies, asthma, burning veins, severe chronic daily headaches, severe 3-5 day killer headaches each 2 weeks as regular as a clockwork, skin problems, edema - 80 pounds of excess water, high blood pressure, trouble breathing, frequent pneumonias, MVC 99.8, MCH 38 (since methylfolate started 3 months ago down to 96.3 and 34.1 respectively), changes in platelet volume and count, CRP 6, now down to Don't be mislead about the injection versus sublingual. For most people sublingual methylb12 of the right brand is every bit as effective as the shots. I am uniquely situated to compare how much sublingual must be consumed quickly, saturating all the mucosal tissues of the mouth for an hour or two to see if it is possible to absorb enough that way as to reach the blood saturation point at which the kidneys excrete it. I am designing a colormetric comparison system that will estimate the amount of b12 by visual scale comparison in a white toilet bowl of know capacity by daylight comparison. The just visible amount for injecting for me is 4.375mg. Going up to 5mg makes several Just Noticable Difference differences in shade. I can calibrate in mcg what each JND in shade indicates. My internist is just watching me, fascinated. My first appointment with him was 3 months before I first started methylb12. I was visibly different each 3 weeks to people who hadn't seen me in that long. It takes about 3 months for that much visible change now. He didn't dismiss me from his practice because he didn't feel threatened by having missed all this diagnosis since I had just started with him. Nobody would test me. In fact my suggestions or insistance on tests just convinced the docs even more that IAIYA (Its All In You Head). I actually had the audacity to think that the constantly changing array of symtoms actually meant something, being a systems analyst. Insisting that something was really wrong got me dismissed from several practices. As a systems analyst I integrated 5000 hours of research reading (this is something I do well) and can explain whats behind the constantly changing symptoms and all of that. Each step of the way, each additional supplement was based on journal articles pointing at it. I also had my lifetime history and that of my 3 children. I could see the same patterns with them as I had. I predicted to my internist that my MCV and MCH would come down with the methylfolate since it hadn't with the methylb12. Sure enough, they did. I researched on the internet. GOOGLE supplied the answer when I could ask the right question. I couldn't afford all they tests anyway, I did the ultimate test. I went down to a local healthfood store and bought a bottle of methylb12 for $8. The effects were not subtle. I began to have answers 45 minutes after I laid my money down. They were very powerfull and immediate. Symtoms went wild for a few days as 600+ stalled reactions all started up. In one hour the lights came on decisively, I no longer felt extremely fatigued, a lifelong depression started lifting a lot. And many pains all went wild, with me more aware sharply and clearly aware of them than I had ever been. Many symtoms went wild. I could immediately walk up the stairs without stopping and resting every couple of steps. In 10 days the burning bladder, burning tongue and burning muscles were all normal. In 9 months the headaches were totally gone. Constructing the pharmacokinetic calculator (adapted from a single compartment model I use for modeling time release opioids and will be on the market soon) allows me to make some statements. The data I based the calculator on was purely journal articles that included serum halflife information. Based on a population with an mean serum level of 700 (but still 100% with neurological sysmtoms) the longterm decrease rate was 1.89% per day which amounts to an approximately 36 day halflife. Let's just use 2% for easy talking. At a 2% daily loss rate a person has to absorb 14 mcg per day to maintain equilibrium at a blood level of 700. Except for vegans who have a ZERO intake of human active cobalamin, a person who intakes the same 14mcg/day and has a serum level of 100 has a daily loss rate of 14% instead of 2%, or they are only absorbing 2mcg per day or some combination. Whatever the exact numbers are, an equilibrium serum level indicates the long-term net absorbtion/excretion. It doesn't say which symtoms people will have. Sublingual appears to allow approximately 10% of methylb12 to be absorbed as compared to the 1% absorbtion that can occur in the intestines in the absence of intrinsic factor. This exact percentage is what I am going to attempt to determine with the colormetric analysis. With all of the profound neurological changes, mood changes and personality changes still going on I am not remotely the same person I was 25 years ago. First I lost almost everything on the way down. And then I reformed as, at least it seemed like this, various parts of my brain started waking up and working, working better or differently. I am really quite literally a new person. The 16 years of severe crisis have faded like a nightmare, it doesn't even seem like me any more. I don't feel the same. I don't think the same. I'm not remotely the same. My wife was the last person in my life from "before" and she divorced me 3 years ago saying that she couldn't go though all those changes again, she couldn't put up with it any longer. The person she married was a professional photographer, ski patrolman, intellectual, active. After the car wreck I couldn't carry the cameras and do the jobs afterwards. I haven't skiied in 20+ years due to b12 deficiency. My intellect became severely impaired during those years, bridge, chess, scrabble etc ceased to be fun or intresting and we had nothing to say to each other the last 10 years. My sense of smell changed and I couldn't stand the way she smelled. She couldn't touch me without it causing pain. The physical part of our relationship disappeared with the pain and malfunctioning neurology. I couldn't do anything, what she wanted, what I wanted, made no difference. The b12 deficiencies destroyed every part of our relationship.
    Freddd 3576 Replies Flag this Response
  • Hi Sally, I'm going to give you some more early history. I never went out for halloween until first grade because I was sick every year at that time. I had an average of 6 streps a year lasting about 2 weeks each. I missed 25% of the school year k-12. I would never have survived infancy without pennicillin. My toncils got infected early and never completely cleared up. They were removed while infected after they waited 2 years for a noninfected opportunity. I had swolen glands in my neck my entire childhood. A doc, at age 18 commented "Undoubtably just scar tissue now". Ten years later after 16 grams of vit C a day (ala Linus Pauling, "How much vitamin C is enough?" Pauling's answer "Until you stop getting sick") for 2 years, I had stopped getting sick, and for the first time in my life my neck glands were not swolen. I started taking vitamin C for a persistant drug resistant urinary track infection. I started with 1 gram twice a day. The symptoms were gone 2 days later. I discontinued the C a year later and it was back in a week. Again, I took the C and haven't stopped. At 4 grams a day my streps stopped immediately. I have had only one or two with my children in the 35 years since. When I get swolen glands now, it means something. The other affliction I had was that a simple cold vitually always went into prolonged bronchitus lasting months. I have had numerous "viral" pneumonias, 2 bacterial. Before methylb12, my mucous was very thick and sticky, like sticky jelly, not runny and slippery. It was very difficult to cough up. I had sinus problems from time to time for the same reason. The change in the mucosal tissues is part of the changes that b12 deficiencies make to epithilial tissues. Then I had "growing pains", a predictor of FMS, Osgood Schlatter's, associated with b12 deficiency, dermatological symptoms that can be caused by b12 deficiencies, easily irritable stomach and intestines that became IBS (b12 deficiency), allergies, allergic asthma (both associated with b12 deficiencies). Any illness, injury or vaccination could trigger a mysterious response of horrid fatigue and body pain (b12 deficiency), nausea and vomiting and dizziness (all b12 deficiency), "viral" pneumonia that lasted for months. I was given a "basal metabolism" test at 8 and put on thyroid extract (hypothyroid assiciated with b12 deficiency). I put on watery fat that seemed impossible to remove even on a fully supervised diet with lots of exercise. I was always a floater in water, until last August. I am an extreme mesomorph in body type. My shoulders and chest are large. At 212 pounds my waist is 37 and I wear a size 50 suit jacket. And I sink when I exhale. At 200 pounds my waist is 36 and I probably could fit a 48 jacket. At 180 pounds my waist is 34, and that's as small as it gets. I hope that I will fit in a 46 jacket then. I spent years in the insurance industry. Because of my combination of sizes I have custom or semi custom suits, a closet full at all sizes between 175 pounds to 280 pounds. Something fundamental has changed. I sink now. No more watery fat. I can easily take off weight just by eating a little less and exercising a little more. This is the first time in my life that this is true. I have some muscle definition for the first time in my life. Here I am 59 and my body has never looked better. My skin has never been better. My libido, after having been absent for about 20 years is back. There has really been only one drawback that I am aware of to the entirety of my program. 25 years ago I was going through a typical male pattern balding. That stopped cold for 20 years and now it is back full force. At least I have all my teeth and plan to keep them if I have a choice.
    Freddd 3576 Replies Flag this Response
  • Thanks for the reply Fred..............I think I remember reading that in an earlier posting by you. Since my Dr. denied my injection trial request, I've been thinking about up'ing my SL dose similar to that of an initial injection (for example, take 2 SLs/day every other day for a week then take a daily as I've been doing). I just don't want to "OD" so to speak on any of the other components of the SL. I am taking Superior Source "No Shot" SL with b12 w/methyl form 5,000 mcg, vb6 as Pyridoxine HCL @ 2mg, Folic Acid 800mcg, & Stevia Leaf Extract(?) 2mg. Would taking multiple SLs a day be harmful in any way?? Also, I think I am going to make my next purchase of SLs be either Jarrow or Enzy and see if I notice a difference.It just hit me after reading Debb's post regarding her upcoming surgery, that I have had 3 surgeries over the past 6 years. One included a cesarean section in which I do not remember receiving anything other than the numbing shot. But I have had 2 breast augmentations, one in 1999 & 2004 - is it possible that nitrous oxide would have been used in that type of procedure??? I've been racking my brain trying to figure out why my levels are as low as they are (though "normal" according to my Drs) considering I eat varied sources of b12 (always have) and I don't appear to have any symptoms related to malabsorption/stomach issues(abdominal pain, diarrhea, nausea, constipation).
    Anonymous 42789 Replies Flag this Response
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  • Thank you so much, Freddd, for taking the time to read all of the above and give your $.02!! :) I'll confess, I haven't read the entirety of this thread, but have read quite a few of your postings -- soooooo feel for you for the years of suffering, being misDXd/ignored/labeled "hypochondriac" (which most sufferers of chronic illness DREAD like the plague!!). I definitely know what it is to be a PT who does not present with the classic, typical S/S. For instance, it is virtually unheard of for a psoriatic to develop PsA prior to developing Ps; however, in my case, my first PsA symptoms began at age 19, and Ps at age 40. Consequently, I spent YEARS being tested for everything from SLE to rheumatic fever to leukemia (and that's an abbreviated list; I'm sure you get my gist). As for ocular manifestations, I've had the typical laundry list of eye disorders for a PsA PT over the years -- iritis, keratitis, CHRONIC conjuctivitis, corneal ulcers, severe dry eye ... but no double-vision (okay, except for one incidence while schnockered; does that count?? :p ). I did experience what my ophthamologist DXd as "ocular migraines" for several years, but w/o the classic migraine headache (meaning, just the visual disturbances). I AM extremely near-sighted and feared retinal detachment but retinas were A-OK. Was told ocular migraine was caused by the same mechanism responsible for migaine headaches -- and treated similarly -- but opted not to pursue TX; was just thankful it wasn't something more serious. These eventually ceased; haven't had one in at least 2 years. I DID just take a peek at pg. 42 of this thread, as you suggested. Few items of interest -- #1, your mention of years of not "dreaming." I, too, don't dream -- or at least, I have no recall of 'em if I do?? Always considered myself a real oddball as virtually everyone says they dream. (Curiously enough, whilst taking Lyrica & Cymbalta for RSD TX, I began experiencing NIGHTMARES, waking up sobbing ... in addition to the fact that these drugs turned me into a zombie, these "nightmares" were so disturbing to me that I ultimately just d/c'd the meds on my own -- AMA, of course.) #2, "loss of appetite for meat ... " is mentioned in the S/S list; in my case, the opposite is true. I have always been a big meat-eater but nowadays, I actually find myself CRAVING meat. :eek: For the heck of it, I copied & pasted the S/S list; those applicable to me specifically below: teeth sensitive to hot and coldburning bladder (no UTI) **on occasion**painful urgency (no UTI) **on occasion; urgency constant but doesn't always burn**sore muscleslack of muscle recovery after exercise **actually feel as if legs will COLLAPSE!!**dyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etc **esp. nausea when stomach is empty**intermittent constipationintermittant diarrheaSores, ulcers and lesions along entire GI tract or any part **in mouth**palenessrapid heart rateshortness of breathheart palpitationsdizziness - even unable to walk **on occasion**mental slowingpoor concentrationtirednessmemory lossmentally fuzzy, foggymild to severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysisweaknesssleep disorders non restorative sleepalteration of touch all over body, can be unpleasant **RSD**blurring of vision - can be sudden onset and sudden returntinnitus - ringing in ears **on occasion**always feeling coldpositive Lhermittesneuropathies **RSD**paresthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbnessparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbnesssudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementclumsinessMCV > 94 first warning, MCV > 99 alert **95.9 in May**elevated LDHheadachesinflamed epithelial tissuesinflamed endothelial tissuesdermatitis herpetiformis, chronic intensely burning itching rashfrequent infected folicules **folliculitis**Seborrheic dermatitis **psoriasis**dermatitis **lichen simplex chronicus on ankles**skin on face, hands, feet, turns brown, or yellow if anemia occurs.poor hair condition **have had some loss in recent years; very "thin"**painfully tight muscles, especially legsfrequent muscle spasms thin nailsrelative ever needing B12 shots or supplements **suspect my mother receives B12 injections but not 100% certain; parents are traveling presently so can't inquire at the moment** As a child:frequent strepgrowing pains Any specific advice re: diagnostic protocol??
    seedoubleyou 8 Replies Flag this Response
  • Hi TICI, Shots of B12 (probably cyanob12 if in USA), are mostly gone in a day, and symtoms can start returning within a week of a shot. For those with poor absorbtion in the first place there is also poor reabsorbtion and there are NO STORES of b12, just what is in the tissues or blood. The socalled store in the liver is just a buffer on the way out with the bile. Chances are excellent that unless you have been taking injections or subl;inguals of methylb12 daily or at most weekly that you are currently severely deficient. The symtoms you are reporting are not early symtoms, they happen when it is pretty far along in neural degeneration. You can buy some sublingual Jarrow or Enzymatic Therapy methylb12 and find out very quickly. THe severe dizziness and inability to focus my eyes went along with a fine muscle cluminess and severe fatigue and nausea. Fortunately methylb12 reversed those things within 24 hours for me. After 4 years I'm still healing and some of the neuropathies are all that's really left including pain associated with them.
    Freddd 3576 Replies Flag this Response
  • I know that you are pending the serum B12 test result---- but you need to have your doctor order the methylmalonic acid (MMA) test--- which if elevated means you have a true B12 deficiency. I have seen many "normal" serum B12 levels with elevated MMA results---indicating deficiency in symptomatic patients--- and their signs and symptoms reversed after treatment. You definitely have signs and symptoms (elevated RDW, paresthesia, fatigue, on metformin, etc.) Your doctor may state it takes around 5 years to get B12 deficient from being on metformin--- but it depends on your body's stores of B12 and other risk factors etc. Everyone is different--- so they must do the MMA test.You do not have to be anemic or macrocytic for B12 deficiency--- and you do not have to be old. I am so pleased that they ordered the serum B12 test on you--- but even if it is normal-- they must do the MMA test-- it is a very helpful adjunctive test. Sally Hello, It’s been a while since I posted for the first time back in Feb, but I finally have more information about what might be going on with me. My Iron level is 43 mcg/dl and my TIBC is 465 mcg/dl with a Saturation of 9.2%, so I guess that points to iron deficiency anemia. My Hemoglobin, Hematocrit and MCV are still slightly low (11.9, 35.6 and 73.4 respectively) and my RDW and Platelets are still high (15.7 and 507). My primary care doc told me that my B-12 is normal (243), but I had an appointment with my neurologist for something unrelated and she mentioned that given my symptoms, she’d like to get my B-12 higher and see if I start to feel better, even though technically it’s still in that “normal” range of 180-900. FWIW, my folate is 13.3 which is high? Normal? I’m not really sure about that or what, if anything, it means. My neurologist is going to follow up with my primary care doc and find out what the plan is as far as treatment is concerned, because so far, all he’s doing is referring me to specialists and sending me for blood work (although no MMA test yet). So far, he’s sent me to a cardiologist (because of palpitations, shortness of breath, muscle fatigue, weakness, etc), the neurologist (for tingling and numbness in my hands and feet) and now he’s kicking me back to my GYN since heavy periods are probably causing the iron deficiency. I had more blood work done just last week, but I don’t expect that will show anything different than the results from April and May. Honestly, I just think my meds aren’t playing well together, and since I’m finally on meds that work and have tolerable side effects, I’d rather take iron supplements and B-12 shots than mess with my primary medications. I guess I should be glad that he’s being so cautious and thorough, and ruling out the serious stuff and waiting on a treatment until he’s determined the cause of whatever is going on, but I can’t help but feel that I could see every specialist in the book and have blood work done for the next decade and it still might not be conclusive. I just want to start feeling better. I’m tired of getting winded walking up a flight of stairs, or feeling like my legs are going to collapse after walking from the parking lot to my front door. Is it possible to have an iron deficiency and a B-12 deficiency? Also, recently I've had bouts of nausea with cold sweats and headaches along with the palpitations and shortness of breath, etc.. Do you know if any of those symptoms are associated with either iron or B-12 deficiency? Thanks again.
    Tomboy 4 Replies Flag this Response
  • Hi Artselegance, What would I expect from b12 therapy? Let me tell you my experience with methylb12 sublingual tablets from Jarrow and Enzymatic therapy. I had most all your symtoms and more; 75 or so in all including blurry vision. The severe fatigue, pain, neuropathies, nausea, dizzy, etc had been going for 16+ years. In 5 minutes the severe fatigue retreated minute by minute. I was "rushing" for an hour. At the end of that hour the fatigue was gone, the lifelong depression was gone, the lights literally came on (about 4x brighter). In 10 days, the burning bladder, tongue and GI tract were all substantially improved and completely gone in 20 days. If I didn't take sublingual mwethylb12 every day, the symtoms started returning in 3 days. Some brands of "methylb12" also allowed return of symtoms within 3 days. An injection only lasts a few hours longer because of the pharmacodynamics which I will explain in another post. Improvements in many neuropathies were obvious within days. In 30 days, across the board I had about 80% overall improvement with half the symtoms entirely gone. In 9 months I had about 95% improvement across symtoms, having only a handfull left. If you don't have methylb12 for 1 week symtoms will be returning promptly. A month between shots would be shear ***l, 3 days of relief and 27 days of getting worse. If you are not getting these kinds of improvement, take sublingual methylb12 daily or shots DAILY. The advantage of shots is that they make it easier to maintain b12 levels at the level that some research suggests could upregulate neural healing. Vials of methylcobalamin are available from compounding pharmacies. University Pharmacy in SLC prices it at about $110/250mg vial, with a prescription. I use a 0.3mg 5/16" 31 gauge insulin syringe for subcutanous injections, very easy to do myself as I do it daily. With 5mg daily I feel good again in so many ways. I don't have any up/down cycle between injections. My body is improving and healing daily. If you are taking cyanob12 injections, they do at best about 1% of what sublingual methylb12 can do. I have made tests comparing sublingual to injections. It takes 25mg to 50mg of Jarrow methylb12 to equal the amount of methylb12 a 5mg injection gives in the blood stream in 1 hour. I wouldn't expect much more than about a 5% total improvement from cyanob12 injections. It has to be converted into methylb12 within a few hours before it is excreted.
    Freddd 3576 Replies
    • December 27, 2007
    • 09:40 PM
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  • Hi Mkor,I don't know about pulsating sensations. I have had them but do not know if they were related to b12 dfeficiecny. The b12 serumn test sets the lower limit so low that people may be symtomatic and responsive to methylb12 at 5times the lower limit. High homocysteine is indicative of methylb12 deficiency but normal homocysteine doesn not rule out b12 deficiency. High urine MMA indicates adenosylb12 deficiency but normal MMA does NOT indicate adenosylb12 sufficiency. THERE ARE NO DEFINITIVE TESTS FOR B12 DEFICIENCIES, PERIOD. The only definative test is a trial of methylcobalamin AND adenosylcobalamin. Enlarged red blood cells are highly indicative of methylb12 deficiency and/or methylfolate deficiency and/or certain liver problems.Are you willing to bet your life on a couple of tests that CAN"T actually tell you anything definative, that can't rule out b12 deficiency?Here is a partial list of symtoms and signs of b12 deficiency compiled from many sources from multiple countries and people with directly responding symtoms. The individual lists do vary considerably by country, both in what is included and how it is described. This list has many possible duplications; some are common description versus what the doctor might find, some are distinctions that have been made that I don't feel right combining as one description and might click and another similar one won't for any specific person. How all these symtoms and others manifest varies by individual. However, one of the common factors is as a doctor told me "You have too many symtoms to be believable". I had about 75 to 80 different symtoms, signs and co-correlates affecting every system of the body. That too is common in b12 deficiencies, a vast array of shifting symtoms. Over 600 biochemical processes can come to a near halt in various combinations without sufficient amounts of BOTH natural b12s, methylcobalamin and adenosylcobalamin. The other two often given as vitamins are both completely inactive and must first be converted to the active forms within a few hours before excretion. How many of these symtoms do you have? Are your "unknown cause" symtoms on this list? B12 DEFICIENCY SYMTOMS, SIGNS AND CO-CORRELLATES high urine MMA (specific shortage of adenosylcobalamin) high serum homocystein (specific shortage of methylcoabalmin) mouth sensitive to hot and cold sore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habitsabdominal painloss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become aroused MENerectile disfunction WOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptoms palenessrapid heart rateshortness of breathheart palpitationsweak pulsecongestive heart failureHypothyroid (direction of causality if any not established)psychosis, including many of the most florid psychosis seen in literature, formerly known as megoblastic madnessAlzheimers (very recent research, 2007)irritabledepressionmaniadizziness - even unable to walkdeliriumdementiaparanoiadelusionshallucinationsmental slowingpersonality changeschronic malaisepoor concentrationmoodinesstirednessmood swingsmemory losslistlessnessanxiety or tensionnervousnessimpaired connection to othersmentally fuzzy, foggymild to extremely severe fatiguecontinuous extremely severe fatigueeasy fatiguabilitysevere abnormal fatigue up to and including apparent paralysis leading to deathweaknesssleep disordersnon restorative sleepalteration of touch all over body, can be unpleasant and painfulalterations and loss of tastealterations and loss of smellloss of smell and taste of strawberries specificallyroughening and increased raspiness of voice, can smooth in mid word with methylb12blurring of vision - can be sudden onset and sudden returndimmed vision - usually not noticed going into it because change can be very slow, or present for lifeVisual impairment can be seen; ophthalmological exam may show bilateral visual lossoptic atophycentrocecal scotomatadiminished hearing - gradual onset or present for life, sudden returntinnitus - ringing in earsalways feeling coldBrainstem or cerebellar signs or even reversible coma may occurneural tube defect not caused by folate deficiency or child with itdemyelinated areas on nervessubacute combined degenerationaxonial degeneration of spinal cordunsteadiness of gaitataxic gait, particularly in darkpositive Rombergpositive LhermittesPositive bilateral Babinski reflexneuropathies, many typesprogressive bilateral neuropathiesdemyelination of nerves - white spots on nerves on MRIsloss of detail and sensual aspects of touch all over bodyparesthesias in both feet - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both legs - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etcparesthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbnessLoss of position sense is the most common abnormality (or vibration sense)Loss of vibration sense is the most common abnormality (or position sense)hands feel gloved with loss of sensitivityfeet feel socked by loss of sensitivitytoes turn up instead of down in reflex to sole stimulationsudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movementstanding with eyes closed, a slight nudge or bump causes loss of balancemost patients have signs of both spinal cord and peripheral nerve involvementMotor impairment may range from only mild clumsiness to a spastic paraplegiaclumsinessslowed nerve impulsesThe effect on reflexes is quite variabledecreased reflexesdifficulty swallowingbrisk reflexesbrisk reflexesimpaired white blood cell responsedecreased deep tendon reflexpoor resistance to infectionseasy bruisingpronounced anemiamacrocytic anemiamegablastic anemiapernicious anemiadecreased blood clottinglow hematocritMCV > 94 first warning, MCV > 99 alert (Mean Corpuscular Volume)elevated MCH (Mean Corpuscular Hemoglobin)elevated LDHbig fat red cells (when said this way usually with happy or healthy modifying it, completely misinterpreting results of MCV)platelet disfunction, low countwhite cell changes, low countheadachesinflamed epithelial tissuesinflamed endothelial tissuesmucous becomes thick, jellied and stickydermatitis herpetiformis, chronic intensely burning itching rashfrequent infected folliclesSeborrheic dermatitisdandruffeczemadermatitisskin on face, hands, feet, turns brown, or yellow if anemia occurspoor hair conditionthin nailspainfully tight muscles, especially legsfrequent muscle spasms anywhere in bodyBariatric surgeryDilantin and some other medicationsrelative (parent, grandparant, sibling, child, grandchild, ever needing B12 shots or supplements AS INFANT OR CHILD delayed myelinationfailure to thriveautismdelayed speechdepressionfrequent toncilitisfrequent strepfrequent pneumoniafrequent longlasting supposed viral illnesses that linger and linger and lingereverything goes to the lungs for extended periodsheadachesgrowing painsskin problemsdandruffallergiesasthma
    Freddd 3576 Replies
    • January 1, 2008
    • 08:26 PM
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  • Page 1 B12 DEFICIENCY SYMTOMS, SIGNS AND CO-CORRELLATEShigh urine MMA (specific shortage of adenosylcobalamin) high serum homocystein (specific shortage of methylcoabalmin) mouth sensitive to hot and cold sore burning tonguebeef-red tongue, possibly smoother than normalsore mouth, no infection or apparent reasonteeth sensitive to hot and coldburning bladder (no UTI)painful urgency (no UTI)burning urethra (no UTI)burning muscle painaccumulating muscle pains following exertionsore muscleslack of muscle recovery after exerciseexercise does not build muscledyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying, etcflatulencealtered bowel habitsabdominal painloss of appetite for meat, fish, eggs and/or dairy foods, the ONLY foods containing b12 - nutrient specific anorexiaintermittent constipationintermittant diarrheairritable bowel syndromeCrohns disease (direction of causality if any not established)Celiac disease (direction of causality if any not established) - gluten sensitivityDairy sensitivity, lactose and/or proteins (direction of causality if any not established)Sores, ulcers and lesions along entire GI tract or any partreduced libido - loss of sexual desireloss of orgasmic intensity, unsatisfying orgasmsinability to orgasmloss and/or change of genital sensationunable to become arousedMENerectile disfunctionWOMENpost partum depressionpost partum psychosisFalse positive pap smearsmenstrual symptoms
    Freddd 3576 Replies
    • January 6, 2008
    • 07:52 PM
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  • I have a colleague at work who was suffering with what was originally diagnosed as panic attacks. After lots of investigation from her doctor she was diagnosed with B12 deficiency.Many of her symptoms are similar to myself.Over the last 3 years I have suffered a catalogue of illnesses. Starting with glandular fever which took a good year to improve.I then started getting weird out of body feelings earlier in the year, which got worse and worse. I'd have dizzy spells where I'd feel like I was going to fall, feel very hot and fainty. Plus I'd have odd 'dropping' sensations.I've also now had 4 colds in as many months, most of which have been serious and led to a reasonable amount of time off work with chest infections.My brain is always churning away and never seems to switch off. Most mornings I wake up with a song playing over and over in my head.I get very panicky, plus on occasions very angry. I've alwasy been quite a stressy person so my GP has put everything down to stress.At Christmas it got worse and I had a racing heartbeat, was very hot, had another cold, and generally felt very weak and tired. My GP put me on betablockers which initially really helped.But I've been getting very stressy and angry again and having problems sleeping. I'm really tired all the time and generally for the last 3 years haven't felt myself and have generally been quite a tired and weak person. Before I came down with the glandular fever I was very active and visited the gym regularly.Do you think this could be something to do with a B12 deficiency?I'd just like to start feeling like me again and as if I can cope with the world. Whilst I've always been stressy, I've not generally felt this unable to cope with things.Your advice would be appreciated. Hi Worryingone, My 16 year long b12 deficiency crisis lasted until I tried methylb12. It was tirggered by what appeared to be an entero virus with sudden onset severe dizzyness, vision blurryness, weakness, nausea, vomiting, muscle pain, chills and fevers that took 6 months to fade a little and 16 years to go away just as suddenly as it started. It took only 5 minutes with an Enzymatic Therapy methylb12 under my tongue for me to realize my life was changed as the severe crippling fatigue lifted in minutes. The lights literally came on over the next little while in every sense; mood, sight, hearing, taste and so on. The blurryness was gone in a day, the nausea, vomiting etc never happened again in the same way. One kind of abnormal muscle pain, burning bladder, burning tongue etc were essentially gone in 10 days and fully gone in 20 days. How much of your problems are caused by b12 deficiency and how much by other secondary deficiencies who knows. The way to test that is to take one of the two effective methylb12 brands mentioned and the cofactors. Starting within 24 hours and within 9 months most of what is left won't be b12 and cofactor related except for severe possibly permanent damage. The effects of an effective methylb12 sublingual with cofactors is not subtle for somebody who is severely deficient. How many of the previously listed symtoms do you have? How many different parts and systems of body? How many symtoms do you have that are NOT on the list. Do these improve with the methylb12 + cofactors?Good luck.
    Freddd 3576 Replies
    • January 18, 2008
    • 09:03 PM
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  • I am 53 years old. I had a gastric bypass roux-n-y about 5 years ago. I have been treated for a B12 deficiency off and on since then. My last level was 762-taken 2 weeks after my last shot. I give shots every other month. My last ferritin was 29, down from 32. My RBCs were 3.84 (normal 3.8-?), my HGB was 12. My symptoms-chronic tiredness, always cold (TSH 1.6), tingling in fingers, shortness of breath, or at least a feeling of it, chronic sinus infctions since Sept., nausea, muscle cramp-especially in my abdomen- and just a feeling something is not right. I am very much in tune to my body as I am a diabetic (Type 1-in good control). I have also been having hypotension with blood pressure running in the 80-90/40-50 range. I am also taking 325 mg. of ferrous sulfate TID with vitamin C. Could my dr. be missing something in the B12/iron depatment?
    Anonymous 42789 Replies
    • February 2, 2008
    • 03:16 AM
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  • I am 53 years old. I had a gastric bypass roux-n-y about 5 years ago. I have been treated for a B12 deficiency off and on since then. My last level was 762-taken 2 weeks after my last shot. I give shots every other month. My last ferritin was 29, down from 32. My RBCs were 3.84 (normal 3.8-?), my HGB was 12. My symptoms-chronic tiredness, always cold (TSH 1.6), tingling in fingers, shortness of breath, or at least a feeling of it, chronic sinus infctions since Sept., nausea, muscle cramp-especially in my abdomen- and just a feeling something is not right. I am very much in tune to my body as I am a diabetic (Type 1-in good control). I have also been having hypotension with blood pressure running in the 80-90/40-50 range. I am also taking 325 mg. of ferrous sulfate TID with vitamin C. Could my dr. be missing something in the B12/iron depatment? Hi Lynn, What kind of b12 shots; cyanob12 or hydroxyb12? In any case you probably will find the sublingual methylb12 (Jarrow or Enzymatic Therapy) a very different experience from the shots you are presently taking. Also, at least 2mg of folate and 2x per day b-complex, zinc, fishoil a&d (25,000/1000) minimum, vit c (2000+mg/day), vit E (400 units) calcium, magnesium, etc. All of these other cofactors have to be taken if maximum healing can be the result. Also, for a lot of folks adenosylb12 (dibencozide, Country Life) is absolutely essential too. Most of your symtoms, boldfaced - are compatible with b12 deficiencies. Good luck.
    Freddd 3576 Replies
    • February 4, 2008
    • 02:28 AM
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