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  • B12 and Folic Acid Deficiency

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    Old 03-25-2007, 08:03 AM   #1
    Mooky80
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    B12 and Folic Acid Deficiency

    HI

    I was originally told I would be on folic acid for life, due to a deficiency. A few years on, and I began to suffer the same sort of symptoms as before I went on the Folic Acid (5mg), tingling fingers and toes etc. After a b12 and folate test, the levels were 399 and folate was over 24, which is on the upper level.

    I was told to stop taking the folate straight away. After 7 weeks I had a repeat b12 and folate test, which showed B12 was 273 and folate was 15.51 which is normal but at the higher end).

    Does anybody know if my B12 level should have dropped from 399 to 273 in 7 weeks? Maybe my deficiency was B12 all along and not folate? I am still tired, tingling fingers and toes, tingling tongue etc.

    Maybe it takes a while for your body to re-adjust after taking 5mg of folic acid for around 4 years?

    Does anybody know anything that can help?

    Thanks

     
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    Old 03-26-2007, 07:57 AM   #2
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    Re: B12 and Folic Acid Deficiency

    Don't mess around with the low B12 numbers!!! - find the reason you are having this anemia. There are several causes for low B12 so talk with your doctor and ask for a B12 shot right away. Personaly I was diagnosed with Pernicious Anemia which means it doesn't matter how much I eat I will never absorb the vitamin. Easy fix these days - just a regular shot. Good luck and I hope you feel better soon.

     
    Old 03-26-2007, 09:05 AM   #3
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    Re: B12 and Folic Acid Deficiency

    Hi

    Thanks for the reply. In 2003, when I was told I was folate deficient, and I would be on folic acid for life, the Doctor had put "Pernicious Anaemia" as the diagnosis. The Doctor I saw a few weeks ago, said that I have never been anaemic, and that the diagnosis of PA was not correct!! The Dr who diagnosed the PA, actually said to me a few weeks ago, when I suggested taking B vitamins, that my stomach would not absorb it!! It all seems a little strange. Maybe the 2nd Dr knows that the 1st Dr messed up in the diagnosis?? Maybe I should have had B12 or B12 and folate all along?

    What were your symptoms/levels etc??

    Thanks again for replying!!

    Last edited by Mooky80; 03-26-2007 at 09:11 AM. Reason: Incorrect spelling!

     
    Old 03-26-2007, 02:02 PM   #4
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    Re: B12 and Folic Acid Deficiency

    Mooky,
    I have a different form of anemia, hemolytic anemia, but it affects my B12 levels. I need shots to get my levels up. Your numbers are concerning, especially since you have numbness.

    You should be getting the B12 shots until your numbers come up, no matter what! You'll probably need a lot of tests to diagnose your condition, but in the meantime, you shouldn't suffer. Ask for the shots - they aren't overly expensive and they will make you feel better. Low B12 levels can cause nerve damage, so it's something to take seriously.

    Also, folic acid can affect your B12 levels, I believe artificially inflate them> I could be wrong, but definitely do not let this go for long.

    You can get sublingual B12 tablets at the vitamin store that should absorb into your system while you're waiting for your dr to do tests. These absorb into your bloodstream even if your stomach doesn't take in the vitamins. It isn't a solution, but it may help as a stop gap measure.

    I sympathize with you!

    Take care,
    Jill

     
    Old 03-26-2007, 04:47 PM   #5
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    Re: B12 and Folic Acid Deficiency

    Mooky - If youíre not familiar with Pernicious anemia it is something that gets worse with time and if untreated is life threatening and yes like the previous message can cause permanent nerve damage. B12 is a vitamin important to each and every cell in your body but inflicts the most damage to your nervous system which includes your brain.

    I was diagnosed June of 2006 but looking thru my medical history I have suffered ill effects off and on for 20+ years. About 3 years ago I finally reached a point where I am unable to make enough instruct factor to absorb the daily requirement of B12 so then my system started using up the storage in my liver. This process from what I have read can take up to 4 years before you start showing the serious symptoms of the disease.

    PA gets worse in time - some people can take supplements in the beginning but are watched because there will come a point where that wonít work and then injections are the only saving grace.

    I suffered from extreme fatigue, dizziness, vertigo, ringing in the ears, bright spots in my vision, vision disturbances, muscle spasms, muscle contractions, joint pain, electric shock sensations, uncontrolled muscle movements, numbness, loss of reflexes, complete loss of feeling over several areas of my body, difficulty concentrating, bowel problems, motion sickness, paranoia, loss of sex drive, nausea, shortness of breath, rapid heart beat, very cold sensations that started with hands and feet then continued to whole side of body, noise sensitivity, sleeping issues and many more. I got so bad I couldn't even drive let alone ride in a car, I was unable to go anywhere by myself since my system would just start shutting down in a very short time frame and I wasn't able to take care of myself.

    I am 9 months into replacement therapy (B12 injections every 2 weeks) and although life is much better I still have some difficulty and fatigue is still my nemesis. At least I am not sleeping some 12-16 hours a day but still find it hard to get thru a full day I look forward to the weekend for down time.

    During the 5 months it took to find the problem I had 8 specialist and around 30,000 in medical bills. Several of the doctors including a neurologist gave me lots of conflicting signals about how important B12 is. Lucky for me the ones who listened, cared and that I trusted the most were the doctors who pointed me in the right direction. Of course a little divine intervention also helped along with lots of prayers and support from friends and family. Itís a strange condition because generally you look healthy but your insides tell a much stranger story.

    I found - and still do - great comfort in this web site because finally I wasn't alone. There are lots of great helpful, gracious, kind and wonderful people who understand exactly what each of us is suffering thru and offer great support and words of encouragement.

    Sorry for the length. Wishing you good health in the very near future.

     
    Old 03-27-2007, 03:38 AM   #6
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    Talking Re: B12 and Folic Acid Deficiency

    Thank you to both of you for replying.

    I am sure that the 2nd Doctor has a suspicion that the 1st dr's diagnosis was not correct. The first time I talked to him about the folic acid, he said "there is B12 that goes along with that". After that, when my level was 399, then 273 7 weeks later, he said that they would not treat a level like that. I think the levels in the UK are 130 to 700 or something! Just how bad do you have to be before they will do something about it?? The trouble is in the UK, they do not want to treat you for B12 unless you are really deficient. I am waiting for an appointment to see someone at the hospital, so hopefully they will sort this out.

    The things that really bother me are, the pins and needles/numbness, which is mostly in fingers, toes, sides of feet. Did any of you have a tingling tongue?? I have also noticed that if I do a lot of housework, or something similar, I do seem to pay for it the next day or so. Do you both think that my level of 273 is low?? What level should I be aiming for??

    Thanks Mooky

     
    Old 03-27-2007, 05:06 AM   #7
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    Re: B12 and Folic Acid Deficiency

    Mooky,
    Yes, 273 is low. I know the drs aren't freaking out, but they have just now raised the levels that are low. Now, I believe, 400 is the lowest acceptable number. I can't find any reference articles, so I'd love if someone could point me in the right way. But 273 is too low for you - you're having symptoms. You need shots.

    I was in the mid to low 200's when my deficiency was discovered - I was having numbness, tingling, muscle jerks, it was awful. The symptoms slowly disappeared, but I was well over 800 for several weeks before the numbness went away. It is a very difficult vitamin deficiency to correct, I'm told, because B12 is used by your body in so many functions.

    You can help it along by using the sublingual B12 vitamins, but honestly, I would press the dr to give you the B12 shots. If you're symptomatic, which you are, it means your body is trying to ask for help. Numbness and tingling isn't good at all! It may mean nerves are being damaged.

    If this dr won't listen, get another one. Just because it's a vitamin deficiency doesn't mean it can't do damage and isn't very serious.

    You could feel so much better, and the solution is so easy - it's not like you need expensive or controversial meds to feel better - just B12 shots. Geez. I hope someone will listen to you. I really feel for you.

    Take care,
    Jill

     
    Old 03-27-2007, 06:14 AM   #8
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    Re: B12 and Folic Acid Deficiency

    Thanks so much for the reply! I have been taking some Vitamin B complex tablets for around 10 days now. They have 100% of RDA B12 (1 MCG) and 100% Folic Acid included. It does say take 1 or 2 on the tub, so I have been taking 2 on most days. Are the B12 sublingual tablets different to these? Do you dissolve them under the tongue? Do you think I should try to get hold of some of these and try them?

    Hope you are feeling better now!

     
    Old 03-27-2007, 08:54 AM   #9
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    Re: B12 and Folic Acid Deficiency

    Mooky,
    The sublingual B12 are different because they don't rely on your stomach to get into your system - they actually dissolve under your tongue. It's not an unpleasant experience - they come in different flavors. When I was at my worst - I was taking them twice a day, once in the am, once in the pm.

    It takes a few weeks to feel better, but you'll be amazed when the symptoms disappear - you probably don't even realize how much better you could be feeling.

    Try a vitamin store or a health food store.

    Take care,
    Jill

     
    Old 03-27-2007, 10:42 AM   #10
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    Re: B12 and Folic Acid Deficiency

    Jill

    You are an absolute star. I am definitely going to try some of those. At the moment, I feel so rough, then I start to feel a little better, but it doesn't seem to last long before I am feeling rough again! If I do too much, it seems to take it out of me. If I get these sublingual B12's and start taking them until I get my appointment through, hopefully they may start to make a difference. If they want to do any more blood tests, I will show them what I have been taking. You don't think, if these make a difference to my B12 level, they will try and fob me off?

    You really are a help! You seem to get much better treatment over there in the US! I will keep in touch with any developments

    Thanks!

     
    Old 08-31-2007, 07:50 AM   #11
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    Re: B12 and Folic Acid Deficiency

    Hi Mookey,

    I've had the same problem here in the UK. I've just got back from the Doc and he told me the same thing. My Vitamin B12 level is 291 so that is perfectly acceptable. 3 years ago I had it tested as part of a screening whilst living in Australia and it was 619. My Follate is 3.2 and that is only just above the lower level but he says they wont do anything. I had major stomach surgery twice and take huge amounts of Omeprazole which I have read can cause Vitamin B12 Deficiency. I seem to be a prime candidate. Just what do you have to do to get any action here in the UK.

    Good luck

     
    Old 09-01-2007, 12:45 PM   #12
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    Re: B12 and Folic Acid Deficiency

    Hi, Mooky. I just wanted to respond to your question about tingling in the tongue. I have a lot of symptoms in my head and mouth that cause me anxiety. My tongue doesn’t tingle except for one incident a couple of weeks ago. It felt like electricity was running through it for about a minute or less. That was scary because I didn’t know if it was some kind of allergic reaction or what was going to happen next. What happened next was what always happens next, no matter what symptom I’m having: nothing. It just went away. I do have some tongue issues, though. Sometimes it’s sore, extremely dry, or feels like it’s too big for my mouth. What happens more often is the roof of my mouth goes stiff for a second or two throughout the day. It’s not exactly a tingling sensation, but I have decided it’s just one of a long list of “electrical” sensations I get. Last night it was pretty intense, happening over and over again, and it kept me awake until 5am this morning. I was diagnosed with B12 deficiency two months ago and am getting plenty of B12 injections (two every week) and I feel I have a long way to go. My beginning level was 329 (range 200-1200), but according to the lab that read my test, between 5 and 10% of people with readings between 200 and 400 have symptoms. I haven’t had it tested since, but I do have an appt. this coming week. I hope the sublinguals help you.

    Last edited by Administrator; 09-20-2015 at 02:10 PM.

     
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