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  • Need advice - B12 deficiency please ????

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    Old 05-11-2006, 01:35 PM   #1
    Nanjee
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    Question Need advice - B12 deficiency please ????

    I am a 50 year old woman - who was relatively healthy until aprroximately 5 years ago. I have had FM for 24 years - but always lived "well" with it.

    I began, very slowly at first, to have strange dizzy spells, balnace problems, intestinal/stomach problems, tachycardia, and severe headaches.

    2 years ago I found out that I had severe gluten intolerance - NOT true celiac disease .... but an extreme gluten intolerance. I have adhered to a strict gluten free diet.

    I was found 1 year ago to be very deficient in Vit D - have been taking supps, and the numbers have come up nicely.

    I just had another B12 level drawn - it was down again to 220. I Know this isn't true anemia .... BUT can a person have all of the symptoms of anemia with a level of 220 ???? 2 years ago my B12 level was 258. Maybe it was too low already then ????

    My life style has decreased to the point that I am constantly exhausted, dizzy, off balance. The headaches are almost non stop - I have never had headaches like this in my life !!!! Also having loads of muscle problems - spasms/little tremors/tics .... and pain. I am hungry at times - but I get very quickly filled up ...... and just can't eat the way I used to. I have lost 40 pounds over the past 3 years ..... nausea/indigestion.

    I also have some visual problems .... difficulty focusing, etc. I have difficulty concentrating, and remembering what I am doing/saying. I have so much trouble sleeping at night ...... how can a person this tired not be able to sleep ??? Are sleep problems a part of low B12 ?????

    Also have a lot of "shakiness" in my legs, hands .... especially if I am up too long. Also get little shock like feelings - especially in my head, and also my legs. I stumble at times ....... my gait seems off.

    I am so exhausted --- getting ready and a trip to the doctor's office does me in for the day - then it's time for the recliner again ...............
    If anyone can give me some input - I would really appreciate it. I have gone from a very active person - to one who flops from couch to recliner.

    My doctor wants to retest the B12 with a differnet test ------ and is considering injections.

    After 5 years ----- maybe he is starting to listen !!! ???????

    Thanks so much for your time ...... I so look forward to some answers from you who have experience in this area....

    Thank You.

     
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    Old 05-11-2006, 04:56 PM   #2
    Merimac
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    Re: Need advice - B12 deficiency please ????

    As people age, the ability to utilize B-12 drops off. You did not say whether or not you are taking any painkillers, if you drink alcohol, or not, and a variety of other things that might reduce B-12. There are a variety of symptoms that are related to long term B-12 deficiency which mimic other diseases, most of which appear to be neurologic and disappear for the most part when treated with B-12. Injections work pretty well when it is just an intrinsic factor problem. IF you have not had a complete metabolic Panel blood test, it might help the doctor to find out if your liver is storing the B-12 or wasting it. Thyroid deficiency will also cause the physical symptoms you are describing and it takes a full thyroid panel evaluation for that as well.Finally, different people tolerate symptoms in different ways. So, what seems very uncomfortable to you might not be noticed by some one else. So, you always want to discuss what makes you uncomfortable, with your doctor so that those specific symptoms get addressed by whatever treatment is recommended.

     
    Old 05-11-2006, 06:32 PM   #3
    Nanjee
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    Re: Need advice - B12 deficiency please ????

    Thanks a lot for your response ..... I apprecaite it.

    I am getting complete blood work done, CBC, with liver enzymes this week.

    I am also low grade hypothyroid - Hashi's hypo. My doctor does NOT think it is severe enough to treat ........ but I am thinking otherwise.

    I think if I could get my B12 up , and the thyroid where it should be - I would feel better ...... right now life has been tough.

    Funny how these things sometimes go hand in hand ??? And my severe gluten sensitivity as well ???? Hmmmmmmmmmmmmm.

    I know so many gluten sensitive/celiac people who are on B12 injections and thyroid replacement.

    Thanks again --- I will continue to look into treatment.

    Nanjee

     
    Old 05-12-2006, 08:33 PM   #4
    Trish558
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    Re: Need advice - B12 deficiency please ????

    Nanjee- Your symptoms sound exactly like the ones I was experiencing last year this time. When I first went to my doctor I suspected I was vitamin B12 deficient because Pernicious Anemia runs in my family. Because my lab work did not indicate a low level, I was not treated. Ten months later, as the symptoms continued to worsen and I could hardly function. I started doing research on the internet and discovered, that MANY times, anemia will develop, before a persons lab work picks it up. I was so desperate to feel better, that I started taking the same Vitamin B12 sublingually (under the tongue) that my my mom takes for her pernicious anemia. After taking it for one month, ALL of my symptoms disappeared! No more foggy brain, aches, pains, extreme fatigue, tingling in my hands and feet. I was amazed. The vitamin B12 that I continue to take everyday, is something I order over the internet and I don't need a perscription. I cannot believe that such a simple little vitamin, taken subligually, cured me of so many awful symptoms. Please do a study of Pernicous Anemia. Your symptoms match them perfectly. -Take Care

     
    Old 05-13-2006, 09:30 AM   #5
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    Re: Need advice - B12 deficiency please ????

    Quote:
    Originally Posted by Trish558
    Nanjee- Your symptoms sound exactly like the ones I was experiencing last year this time. When I first went to my doctor I suspected I was vitamin B12 deficient because Pernicious Anemia runs in my family. Because my lab work did not indicate a low level, I was not treated. Ten months later, as the symptoms continued to worsen and I could hardly function. I started doing research on the internet and discovered, that MANY times, anemia will develop, before a persons lab work picks it up. I was so desperate to feel better, that I started taking the same Vitamin B12 sublingually (under the tongue) that my my mom takes for her pernicious anemia. After taking it for one month, ALL of my symptoms disappeared! No more foggy brain, aches, pains, extreme fatigue, tingling in my hands and feet. I was amazed. The vitamin B12 that I continue to take everyday, is something I order over the internet and I don't need a perscription. I cannot believe that such a simple little vitamin, taken subligually, cured me of so many awful symptoms. Please do a study of Pernicous Anemia. Your symptoms match them perfectly. -Take Care
    Trish, I could have written the same story! My level at the time was 180, and the nurse said it was ok! I also did some research, and found all my symptoms matched. I was even tested for MS, my symptoms were so bad. I insisted to speak to the Dr. about it, and she started me on shots, and I immediatly felt better. PA runs in my family also. I am also hypothyroid for many years, treated of course with meds.

    The bad thing is the range in the US put you as being normal at around 200. ALL the things I read says that range needs to be changed to at LEAST 500, and countries like China have already done so.

    I finally got my level up, and switched over to Foltx, recommended by my Neurologist and it worked fine. Unfortunately I have not taken it in a couple of years, and my symptoms seem to be returning, so I am starting up again.

     
    Old 05-13-2006, 12:55 PM   #6
    Nanjee
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    Re: Need advice - B12 deficiency please ????

    Bless you both for your replies .... I have like I was going a little "nutty" !!!!

    Had more blood work done yesterday ---- and should here from my doc the beginning of next week.

    I just KNOW that a level of 220 is NOT normal for me - I have way too many symptoms. The doc agreed, and ordered more blood work.

    I have begun as of lst night 1mg sublingual B12 .... I know this will not be an overnight miracle ............ but I feel the need to get some B12 in me ASAP

    Did either of you experience insomnia problems as well ????

    And the tachycardia/palps ....... it is ridiculous. The docs have put it off long enough to "anxiety" ..... I AM NOT anxious !!!! Just wired but tired ..... does that make sense ???

    Thanks again ..............

     
    Old 05-13-2006, 03:32 PM   #7
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    Re: Need advice - B12 deficiency please ????

    Quote:
    Originally Posted by Nanjee
    Bless you both for your replies .... I have like I was going a little "nutty" !!!!

    Had more blood work done yesterday ---- and should here from my doc the beginning of next week.

    I just KNOW that a level of 220 is NOT normal for me - I have way too many symptoms. The doc agreed, and ordered more blood work.

    I have begun as of lst night 1mg sublingual B12 .... I know this will not be an overnight miracle ............ but I feel the need to get some B12 in me ASAP

    Did either of you experience insomnia problems as well ????

    And the tachycardia/palps ....... it is ridiculous. The docs have put it off long enough to "anxiety" ..... I AM NOT anxious !!!! Just wired but tired ..... does that make sense ???

    Thanks again ..............
    In my opinion, (and should be all the Drs.!) 220 is toooo low You can take much more B-12 than that and it won't hurt you, and might help get your level up faster. Yes, had insomnia, still do somewhat, and was so sleepy and tired I could barely function, yet also felt all tense and wired up.

    Also, oddly about the time I was diagnosed, I was also found to have a seizure disorder. Hmmm, makes me wonder whether it was caused by the B-12 thing. So many of these neurological things have commonalities.

     
    Old 05-13-2006, 04:20 PM   #8
    Nanjee
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    Re: Need advice - B12 deficiency please ????

    Oh My God .....

    All I can say is "patient heal thyself"

    Thank you so very much ---- you will just never know !!!

    I feel so validated right now ....... it has been a terrible 3-4 years.

    A seizure disorder ???? YES - wonder what B12 has to do with that ??
    Scarey.........................

    I am SO wired and edgy (NOT nervous) right now I could climb a wall !!!! BUT I can't do anymore than a walk through the house and flop back into the recliner ......... so dizzy, weak, headachey, twitchy ... arrgghhhhh.

    Sorry you suffered as well ..... thanks again so very much

    I will post my outcome of the test results next week ..........

    Look forward to learning more !!!!!!!!!

     
    Old 05-30-2006, 11:35 AM   #9
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    Re: Need advice - B12 deficiency please ????

    Hopefully you've found your solution but permit me add a little of my story. I'm 55, fairly healthy, but troubled over the years with chronic tachycardia, terrible fatigue, aches and pains, headaches, feet pain, irritability, depression and anxiety. Amino acids helped immensely, but wasn't exactly a cure. I had an Organic Acid test done which pinpointed many deficiencies, and the Dr. gave me a laundry list of supplements. I started to feel the best that I had in years. Over time, I started dropping some of the vitamins, as it was getting expensive, and thinking I was better, I could just start being "normal" again...you know, eating what I wanted, maybe taking a multivitamin, and starting to live as if I didn't have any health issues. I did well for several months, and pretty much forgot about the medicinal side of all those supplements. Eventually, my symptoms came back. I went to a new doctor that was highly recommended for his sweet and gentle disposition, and the first thing he said to me, upon looking at the history and physical I had filled out, was "Don't take this the wrong way, but I think you would benefit from a mood leveler". I let him put me on Lexapro, "to start", but it was a depressant for me. And I just knew that wasn't right for me.

    I weened myself off, and said to myself, there HAS to be a better way. Well, long story short, I started investigating for myself, I discovered that when I started to feel so crummy, I totally missed the fact that I was no longer taking my B complex, specifically B1, B2, B3, B6, and B12. These missing vitamins were the key to my well being, and upon resuming them, most of my symptoms disappeared within 24 hours. It turns out that in trying to understand the Organic Acid test, I learned that I had a genetic imbalance of these vitamins. What's more, my mother has suffered for 20 years with shizophrenic type symptoms, but refused all medical care. A simple vitamin could have helped her!

    I give a lot of thanks to some very dedicated ladies on another health board, that shared their struggles, and their research. I learned so much, and am so glad I found that forum. I always think about the movie "Lorenzo's Oil". Very dramatic and inspiring.

     
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