Discussions By Condition: I cannot get a diagnosis.

they say B12 deficiency, but why do I have it?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • June 14, 2010
  • 01:35 PM

I was recently told I have a Vitamin B12 deficiency (below 175). I just found this website and want to cry.
For 18 months I have been going to my own doctor and sent to several others (neurologist, ENT, neurosurgeon, physical therapists, physiatrist). I have pages of notes that I have kept. It all started with a fainting spell 18months ago. I was told I had pneumonia and was put on antibiotics. However, over the next two months I had two other fainting spells. This was all accompanied with numbness in my L face, a bulging feeling in my L eye, ringing in both ears, lump feeling in my throat, incredible pins/needles sensations in my hands, tight band feeling around my upper arms, nonstop headache in the back of my head, burning sensation in my neck. I've also had periods of vertigo. I've had days where I can't drive because I feel so "not with it".
I was sent to a neurologist, then ENT. I've had 4 MRI's, a lumbar puncture, and multitude of other tests. Everyone kept telling me "everything is normal". I was put on Neurontin for 4 months to take the "creepy-crawly, pins/needles" feeling away. The only thing I saw from this medication was sleepiness, and dulling of tingling sensation. The 4th MRI of my neck showed a slight bulging disc. So I as then sent to a neurosurgeon, but he said it was extremely mild and that he thought the symptoms were definitely neurological. The neurologist however told me she could do nothing else other than raise the prescription strength. A second neurologist told me all my tests done previously were normal, get off the medication, it wasn't a tumor, MS, Lupus, Lyme Disease, etc. "go back to your primary doctor". I was sent to a physical therapist who then sent me to a physiatrist. I've had several Lidocaine injections in my back and neck which did take away the burning sensation in my neck.
However, after 18 months of numbness in my L face, ringing in my ears, a bulging pressure feeling in my L eye which has now become partially clouded vision to the L corner, and a tinging/numbness/heavy feeling in my arms and now feet - no diagnosis has been made. I am exhausted all the time, yet unable to fall asleep easily due to the nonstop humming/ringing in my ears - we keep a fan on in our room to add noise so the ringing isn't the only thing I hear. I used to run 140+miles a month, I am not able to run at all now. My running journal became my medical journal and I kept notes daily.
I went back to my primary doctor two weeks ago because I lost my vision momentarily while driving. I was coming off the highway and felt a twinge in my forehead and my heart felt like it was fluttering. My vision went from full, down to a black tunnel of nothing and then back again. It scared me so - I went immediately to my doctor's office. He ran an ekg and I was sent to a heart center for an echocardiogram. Nothing alarming was found.
Since then I have a fluttering (palpitations) randomly throughout the day. My hands feel numb/heavy and it's become painful to spread my fingers or toes. I can't clench my fingers to hook necklaces. I've found that I'm forgetful, have to write everything down for the day that I need to do, otherwise I forget most of my errands once I'm out. I've really questioned whether I should be driving. I've limited myself to short distances around town because I'm worried about another "spell". The numbness in my L face, hazy vision in the corner of my L eye, ringing in my ears has been constant.
I was sent to a new neurologist who ran a few tests. He called me within the week and told me to come back to the office. He said my Vitamin B12 level was very low - and that a year ago my records showed it being below 300. He said a year ago he would have been alarmed by my levels due to all the symptoms I was having - he says he is alarmed by anything under 500. He says he hopes there is no permanent damage since my levels have been low for so long.
I was sent back to my primary doctor for B12 injections. He wanted to start B12 injections without any further testing to find out why I have the deficiency. I said I wanted a reason, he ran some blood tests, however, called this weekend to say the tests for pernicious anemia was normal. In the meantime, I've had 3 B12 injections - subcutaneous - and he says I can now go once a month. However, much of the articles I've read say it should be a 5 day course, then weekly, then monthly - intramuscular.
I still have no answers and would like to know what is causing this deficiency. My doctor's message on the weekend was "I guess we have to decide whether to continue testing, or just go with the course of treatment of once a month injections".
I spoke to him this morning, he says any further testing would be gastric, our area hospital doesn't do this test, I'll have to go to Boston. I'd go to Timbuktu to get some answers.
I'm frustrated.
Heather -Massachusetts

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8 Replies:

  • Hi, I'm afraid I can't advise you - but can only sympathise. I can understand your frustration - I've been in a similar situation myself. I had a b12 test done 3 years ago and the doctor told me I was fine. My level was 240 - but I never asked for the number. I was stupid enough to trust the doctors. Then over the past year I have been having tingling and various other symptoms - although none as serious as yours. Anyway finally had a test done and was 179. I started taking oral tablets, but unfortunately seem to have an allergy to b12. But can't get any advice or help from doctors because they say that I don't need it and that I was only borderline deficient and it couldn't have caused my symptoms. When I say that when I took it my symptoms cleared but came back when I had to stop - I've was told that it was just a placebo effect :confused:. Years ago my brother had terrible neck pain and ended up in a neck brace for a month. He asked for a b12 test and was told it was fine (he also trusted doctors then and didn't get his number). Now he looked back at his records and saw it was 170. Both of us have suffered easily prevented damage because of doctors ignorance. I still don't know exactly why I am deficient. I have been tested for intrinsic factor and celiacs but that is it. I am sure I have a problem breaking down food. But trying to get a doctor to listen is like walking through mud. I've been trying for 4 months. I want my stomach tested - but because it can't be done with a simple blood test the doctors just fob me off. They don't seem to think it's important. I think it is vital - what about the other nutrients I may not be getting! I'm afraid that I think most doctors - including specialists - have extremely limited knowledge considering how much training they have. What do they do all those years - why do they know so little! There is a b12 thread that has loads of information and is heavily used - you might find it useful: http://forums.wrongdiagnosis.com/showthread.php?t=9948 Good luck
    pinkladybird 25 Replies Flag this Response
  • Hi, I'm afraid I can't advise you - but can only sympathise. I can understand your frustration - I've been in a similar situation myself. I had a b12 test done 3 years ago and the doctor told me I was fine. My level was 240 - but I never asked for the number. I was stupid enough to trust the doctors. Then over the past year I have been having tingling and various other symptoms - although none as serious as yours. Anyway finally had a test done and was 179. I started taking oral tablets, but unfortunately seem to have an allergy to b12. But can't get any advice or help from doctors because they say that I don't need it and that I was only borderline deficient and it couldn't have caused my symptoms. When I say that when I took it my symptoms cleared but came back when I had to stop - I've was told that it was just a placebo effect :confused:. Years ago my brother had terrible neck pain and ended up in a neck brace for a month. He asked for a b12 test and was told it was fine (he also trusted doctors then and didn't get his number). Now he looked back at his records and saw it was 170. Both of us have suffered easily prevented damage because of doctors ignorance. I still don't know exactly why I am deficient. I have been tested for intrinsic factor and celiacs but that is it. I am sure I have a problem breaking down food. But trying to get a doctor to listen is like walking through mud. I've been trying for 4 months. I want my stomach tested - but because it can't be done with a simple blood test the doctors just fob me off. They don't seem to think it's important. I think it is vital - what about the other nutrients I may not be getting! I'm afraid that I think most doctors - including specialists - have extremely limited knowledge considering how much training they have. What do they do all those years - why do they know so little! There is a b12 thread that has loads of information and is heavily used - you might find it useful: http://forums.wrongdiagnosis.com/showthread.php?t=9948 Good luck pinkladybird. Nutrition is really a specialist area and not a subject doctors study in their learnings... (Ive heard that they just do a few lectures on it but that is it!!! I studied Nutrition for 2 years as a subject at college and wouldnt call myself knowledgable in this area.. It is a big field.. 4 years of full time study). Doctors study illnesses and injuries (rather than nutrition and nutritional stuff which is specialised field). Dont expect doctors to be good when dealing with Nutritional problems. They arent gods, they just have a certain field (being "general medicine") while other specialists cover other fields eg Nutrition. (would you want answers to a serious heart condition from your doctor? No..one would go to a cardiologist as it isnt a doctors area. Dealing with vitamins and minerals, amino acids etc its the same thing..out of doctors knowledge field) They probably arent interested in finding the cause if its something they cant treat anyway eg be it genetic or a malabsorption issue. (our science is only just at the start of it's learning with genetic issues). The treatment would be the same.. B12 supplementation. I do agree they need to be aware of what levels of things may cause symptoms in some.. but as they are poorly or not really trained in this area. One is very lucky to get info of this sort from a general practioner. When you say you had an allergy, i myself wonder if it really was an allergy to B12?? As if one has been deficient in B12 when one starts it, one can get reactions as the B12 can give like a "healing crisis" as it starts trying to detox the body. If it was this which was going on.. one needs to build up B12 level slowly. If the B12 caused stomach/bowel reactions with a pill.. you could try taking subliminal B12 liquid (designed to take under the tongue and absorb from there) or B12 injections. for better advice on vitamins.. see a qualified Naturopath (as many of those have Nutrition as a subject for a couple of years) or a Nutritionist (4 yrs training) rather than a doctor who's just did a couple of Nutrition lectures.
    taniaaust1 2267 Replies Flag this Response
  • From my nutrition notes for pinkladybird and original poster.. Things which lower your B12 levels 1/ contraceptive pill!!! (this is a big one in women)2/ sleeping pills3/ Alcohol4/ low supplies of astringent factor caued by disease states (substance in stomach that protects B12 from stomach acid). best luck. I hope that helps
    taniaaust1 2267 Replies Flag this Response
  • From my nutrition notes for pinkladybird and original poster.. Things which lower your B12 levels 1/ contraceptive pill!!! (this is a big one in women)2/ sleeping pills3/ Alcohol4/ low supplies of astringent factor caued by disease states (substance in stomach that protects B12 from stomach acid). best luck. I hope that helps~ ~ ~ ~I don't drink, smoke, take antacids or any other medications - a Tylenol if I need it. So luckily that has been easy to eliminate those factors. But you're right - I was asked all those questions! I guess the next thing would be gastric tests.Thanks! Heather -Massachusetts
    Anonymous 42789 Replies Flag this Response
  • sounds like a magnesium deficiency to me... that would explain alot of your symptoms including your low levels of B12. do a search on transdermal magnesium and try getting some 'magnesium oil' rather then tablets and put it directly on the problem areas.
    Anonymous 42789 Replies Flag this Response
  • pinkladybird.. i hope you are following this thread and see my post to you. i saw you post on Cort's CFS site on the B12 thread but unfortunately my computer has some dislike of that site and i can never sign in (frustrating!) so thought i'd try to say something to you about your post here. "Not taken methylcobalamin for several weeks, no itching - histamine 39 (ref 28-51)After high doses methylcobalamin for a few days, itching and red bumps - histamine 59.So I guess me and my brother's symptoms are due to b12 raising our histamine levels." it sounds to me that it isnt a healing crisis the B12 is giving you but rather that you do have an allergy to it. eg the histamine and what sounds like hives!! i suggest to try another form of it.. maybe it has colouring, preservative or something in it which you are reacting to. ive heard of some not being good with a form of B12 but being ok with another one.
    taniaaust1 2267 Replies Flag this Response
  • Hi taniaaust1, yes that was me on the CFS site. We had considered that our symptoms may be allergy related. We've tried three forms of b12 (methyl, adenosyl and cyano) and about 5 different brands. I've also tried the other ingredients in supplements that do not contain b12 and had no reaction, so if it is an allergy I'm pretty sure by now that it is to the actual b12 and not an ingredient. However, neither me nor my brother have any other allergies at all and never had reactions to anything. So I thought it so unlikely that we are both having an allergic reaction to b12 - and very unlucky! It woud be very awkward if we were allergic - so I was trying to find another explanation, but I think we ought to get tested so we know. I was due to get an allergy test on the NHS, but the allergist decided that I did not need to take b12 (my serum level had gone into the normal range because I had taken a few tablets) and therefore he would not give me a test. So I'm going to have to go privately now, and it costs loads! :mad: quote=taniaaust1;232001]pinkladybird.. i hope you are following this thread and see my post to you. i saw you post on Cort's CFS site on the B12 thread but unfortunately my computer has some dislike of that site and i can never sign in (frustrating!) so thought i'd try to say something to you about your post here. "Not taken methylcobalamin for several weeks, no itching - histamine 39 (ref 28-51)After high doses methylcobalamin for a few days, itching and red bumps - histamine 59. So I guess me and my brother's symptoms are due to b12 raising our histamine levels." it sounds to me that it isnt a healing crisis the B12 is giving you but rather that you do have an allergy to it. eg the histamine and what sounds like hives!! i suggest to try another form of it.. maybe it has colouring, preservative or something in it which you are reacting to. ive heard of some not being good with a form of B12 but being ok with another one.
    pinkladybird 25 Replies Flag this Response
  • Your situation sounds familiar to me. After 16 years of doctoring I finally found out I had been suffering from Lyme disease. There is a specific test that cultures your blood that is more accurate than the standard Lyme lab test available at most MD offices. Good luck to you!
    Anonymous 1 Replies Flag this Response
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