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Vitamin B12 Deficiency

  • 29-01-2010 3:27pm
    #1
    Closed Accounts Posts: 631 ✭✭✭neil_18_


    Ok, it's not considered an "ilness" as such, but I think people need to be made aware of how common it actually is and easily treated. You feel so much better after the injections. I heard a really bad story about a man who got sick every morning and got a patch on his shoulder which had to be removed. And in the end it was only B12 deficiency.

    About Vitamin B12-deficiency anaemia

    As well as causing symptoms of anaemia, a lack of vitamin B12 can also affect the nerves, and so affect the senses of touch and pain.
    In adults, blood cells are made by red bone marrow, which is found inside the centre of the hips, ribs, breastbone and backbone, plus the ends of long bones such as the thigh. Red blood cells live for around 120 days before they are broken down and replaced, as part of a normal renewal process.
    Vitamin B12 is a crucial ingredient in DNA, the chemical that carries genetic information for new cells. It's found in meat and animal products but not in vegetables. You need vitamin B12 to make red blood cells and for maintaining healthy nerves.

    Symptoms

    The symptoms of anaemia include:
    • breathlessness
    • feeling very tired
    • dizziness
    • feeling very cold all the time
    • a rapid, weak pulse
    • palpitations
    • headaches
    People with vitamin B12-deficiency anaemia may also look pale or jaundiced (yellow-tinged skin and eyes).
    As well as the symptoms of anaemia, vitamin B12 deficiency may cause neurological symptoms due to inflammation of the nerves (neuritis). This is called vitamin B12 neuropathy. It affects movement and sensation, especially in the legs, and causes numbness or pins and needles. It can also cause confusion, depression, poor concentration and forgetfulness.

    Source : http://hcd2.bupa.co.uk/fact_sheets/html/anaemia_b12.html


    Do many people here have it?


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Comments

  • Registered Users Posts: 6,141 ✭✭✭colrow


    I was diagnosed with this a couple of years ago, I have type 2 diabetes and the B12 deficiency was noticed in my routine blood tests I have, I've stopped producing Intrinsic Factor which assimilates b12 into the body through digestion, so I can't get it my tablets/food etc.

    I have an injection of B12 Cocobalmin or something like that, every 2 months and take 5mg of folic acid daily.

    I certainly am well aware when its getting low!!!!!!!!!!!!!!!


  • Registered Users Posts: 442 ✭✭smiley girl


    About 3 years ago I was feeling unwell, so my doctor did a series of tests. It turned out to be Vitamin B12 deficiency. I was given infections, 6 in 2 weeks and then more every few months. That was the end of it.

    I didn't realise it was an 'illness' that recurred, or have I taken that up wrong?


  • Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    Vitamin B12 is absorbed in the terminal illeum- and as such in some conditions- such as Crohn's disease, deficiency is almost universal. I get by with monthly neocytamen injections, and have minor nerve damage throughout as a result of the undiagnosed deficiency. At present I'm having big issues sourcing Neocytamen- most recently it was ordered in for in a pharmacy in Belfast (last weekend) as my pharmacist here said the two distributors are unable to source it at present.

    A lot of the sympthoms you've listed above- are in common with lots of other conditions- its not really the case that you can take a shopping list of sympthoms and suggest its likely the person is suffering from B12 deficiency- and in many cases where the person is suffering from B12 deficiency- its a side-effect of something else- you really need to get a proper diagnosis rather than self-medicating........


  • Registered Users Posts: 1,602 ✭✭✭emzolita


    I was diagnosed with B12 dfficiency, I get monthly injections, and 6monthly Iron injections. although i NEVER feel any benefit from the injections.
    Im also on alot of epilepsy drugs too, so that doesn't help with tiredness, but I cant be this tired! I have to have a sleep everyday, and get at least 9hours sleep at night.

    I just read there in someone elses post about B12 causing coldness, that sounds like me alright, constantly sitting on the radiator, or shivering my ass off.


  • Closed Accounts Posts: 34 vinylqueen


    Trying to source neocytamin myself. Anyone had any joy with Dublin pharmacies lately? Had low b12 for a while but it's now dropped a lot so really need to get started on the injections and all the pharmacies keep saying maybe they'll get it back available in 2 weeks, but from the sound of things I could be in for a bit of a wait!


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  • Registered Users Posts: 131 ✭✭Reeni


    I suffer from chronic gastritis and due to trauma to my ileum, I can no longer absorb B12 from my food. This means lifelong injections of B12. I get neo-cytamen once per month, or when I can't source this I get cytamen once per week. I administer these injections myself. I know its not for everyone but if anyone would like some info on this I'd be happy to help as I found that having control over it lessened its impact on me(especially since my doctoe was charging me €47 a pop for the injections!). I also have some permenant nerve damage which can be particularly painful when stressed. Does anyone know of any ways to lessen pain from this nerve damage?

    i also noticed that in the months before diagnosis I had a variety of symptoms which I never knew were connected until recently such as white spots on my skin (on me mainly my stomach and thighs) which then flaked to expose raw skin, pain on the side of my face (turned out to be the nerve damage), eye tics, sharp pains in the palms of my hands and severe shooting pains on one side of my body. Has any one else experienced these symptoms? I only get them if I'm very low on B12 though. And of course the usual brain fog, memory loss, slurring etc etc.


  • Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    I know it may not be an option for all- I got a prescription from a GP in Belfast and picked up a few boxes of Neocytamen there when I failed to get it here. I've still 2 months worths in arrears due from my local pharmacy- I've given up hope on it at this stage to be honest..... Has anyone any idea of why its impossible to get B12 all of a sudden?


  • Closed Accounts Posts: 34 vinylqueen


    thanks for the replies guys! all i heard was that occasionally local production stops temporarily on certain drugs, pharma company send round letters to the pharmacies/GPs to let them know and we get a bit screwed trying to find dwindling supplies... dunno how accurate that is but she did say it normally isn't a long-term thing so hopefully this is a blip!


  • Closed Accounts Posts: 4 dazey82


    I went to my doctor a few years ago because of the restlessness in my legs. I had let it go for years because I figured it wasn't serious enough for a consultation in itself. I should have done it way sooner!

    He diagnosed B12 deficiency and started me on weekly injections. Now I have them every three months and even though my legs are still restless, they've improved a lot! I'm sleeping much better and I can sit still and be comfortable during flights or at the cinema! :)


  • Registered Users Posts: 4,128 ✭✭✭cynder


    My mother has it, ive been tested and im fine.


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  • Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    Apparently Cytamen is back in distributors again- and can be ordered via your local pharmacy. There is still a holdup on Neocytamen- current eta being quoted is 2 weeks.

    Shane


  • Registered Users Posts: 32 katiewobbles


    I just recently found out from my doctor that I had a b12 deficiency. It's because of my diet, being a vegetarian. I was faiting and getting light-headed, numb limbs and always cold :) but she started me on the daily cytacon tablets about three and a half weeks ago.

    My problem is: I feel no improvement, in fact I think I'm worse. Are the injenctions only for those who have a condition which block b12 absorption or should I wait longer for my levels to rise (I'm going to he doc this week anyway, just wondering I anyone knows more about it)


  • Closed Accounts Posts: 631 ✭✭✭neil_18_


    I just recently found out from my doctor that I had a b12 deficiency. It's because of my diet, being a vegetarian. I was faiting and getting light-headed, numb limbs and always cold :) but she started me on the daily cytacon tablets about three and a half weeks ago.

    My problem is: I feel no improvement, in fact I think I'm worse. Are the injenctions only for those who have a condition which block b12 absorption or should I wait longer for my levels to rise (I'm going to he doc this week anyway, just wondering I anyone knows more about it)


    I get injections because i cant absorb it, not because of my diet


  • Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    neil_18_ wrote: »
    I get injections because i cant absorb it, not because of my diet

    Ditto.
    You absorb vitamin B12 in your illeum. If you have a medical condition which hinders absorption- injections may be prescribed. You need to discuss this with your GP and/or consultant though.


  • Closed Accounts Posts: 1 annk1


    I was told by my doctor in dublin last week that I need to get weekly injections of Vitamin b12. The doctor charged me €50 for the priviledge but also advised that if I purchased the medication from chemist (cost circa €10) I could go to clinic and have them inject same for free. My dilemna is that I cannot recall type of clinic I require apart from it is where babies/children receive their immunisations. Have searched the web but to no avail, by any chance does anyone know the answer?


  • Closed Accounts Posts: 384 ✭✭Erren Music


    Hiya guys, I get weekly injections, and weekly bloods, got diagnosed in late 2008 and I have had over 70 injections since then.

    My levels never go above 200 with the exception of the week I got neo cyte, 4 injs in 1 week and my levels went to 1500.
    7 days later it was 750, 1 more week 430, next week back down under 200 again.

    I had a level under 100 when diagnosed first and I now have a lot of nerve damage. I have had other psych effects, fatigue, sore legs, crazy electrical impulses going through the legs, as well as all the standard symptons.

    My doc charges 10 euro an inj.


    Also had TMJ (stress side effect from such a low level).

    Get lots of tests because it is a sign of something bigger.


  • Registered Users Posts: 131 ✭✭Reeni


    annk1 wrote: »
    I was told by my doctor in dublin last week that I need to get weekly injections of Vitamin b12. The doctor charged me €50 for the priviledge but also advised that if I purchased the medication from chemist (cost circa €10) I could go to clinic and have them inject same for free. My dilemna is that I cannot recall type of clinic I require apart from it is where babies/children receive their immunisations. Have searched the web but to no avail, by any chance does anyone know the answer?


    Could be the public health nurse? Although she will (or used to) give the injections for free. There's a thread here dealing with how to get injectins cheaper (or to self inject): http://www.boards.ie/vbulletin/showthread.php?t=2055859533 Might get some info there too :)


  • Registered Users Posts: 131 ✭✭Reeni


    Also had TMJ (stress side effect from such a low level).

    I've been gettin exruciating pains along my the right side of my jaw and right cheekbone. I though it was nerve damage from having extremely low levels, never knew TMJ was a side effect! I must go to the doc and have that checked out. Do you happen to know if its treatable because I'm no longer low in B12 (taking the injections) but still have this pain, which seems to flare up when I'm stressed. And I'm eating difene like sweets just to dull the pain enough to function.


  • Closed Accounts Posts: 384 ✭✭Erren Music


    Reeni wrote: »
    I've been gettin exruciating pains along my the right side of my jaw and right cheekbone. I though it was nerve damage from having extremely low levels, never knew TMJ was a side effect! I must go to the doc and have that checked out. Do you happen to know if its treatable because I'm no longer low in B12 (taking the injections) but still have this pain, which seems to flare up when I'm stressed. And I'm eating difene like sweets just to dull the pain enough to function.

    Go to a sports shop and buy yourself a mouthguard and wear it in bed. You are grinding your teeth at night in bed. This is how I found out about my PA.

    How low did your levels go?


  • Registered Users Posts: 3,461 ✭✭✭DrIndy


    All good advice and discussion going on here.

    For some more general info:
    B12 deficiency can take up to 7 years to become apparent as that is normally how long you have a body store for. Only extreme vegans actually develop dietary deficiency as B12 is contained in virtually every animal product and as I said previously - you need to be animal free for 7 years normally.

    The body absorbs it in a very strange way - your stomach secretes intrinsic factor to bind to it and your terminal ileum (the last part of your small intestine located in the lower right side of your stomach and beside the appendix) has receptors to bind the intrinsic factor-B12 complex. Only with these two mechanisms can you absorb B12.

    Therefore - if you have stomach surgery or removal or severe scarring of the terminal ileum - you cannot absorb it.

    Additionally - the body can express an autoimmune condition (an immune system attack on your own body) where anti-intrinsic antibodies are produced. This means you no longer produce intrinsic factor which binds B12. This means your terminal ileum cannot absorb B12 as its not specially bound. There is a specific blood test for this - but if this test is negative - it does not mean you have another problem absorbing B12. This condition is also linked to other autoimmune conditions like Type 1 diabetes, crohns (independently from the scarring effect to the terminal ileum) and rheumatoid arthritis to name but a few where the incidence is higher (albeit low) compared to the general population.

    The only conclusive way to know it to get a B12 level. One of my patients had Pernicious anaemia (the medical term for anti-intrinsic antibody syndrome) and the lab refused to release the result and rechecked it 3 times because the result was undetectable and they thought their machine was broken!

    Symptoms are general and not specific - which is why if you are concerned - you need to see a doctor and get assesed and possibly get a blood test if they feel it is needed but they do include anaemia - notably with very large blood cells (macroscopic) although this is also shared with folic acid deficiency - which works through the same pathway and is why doctors sometimes prescribe this with B12 injections.

    B12 deficiency in its most extreme form does cause nerve damage as it is an essential nutrient and can first affect the peripheral nerves and then affect the brain itself.

    The good news is that B12 injections are normally way too much for requirement (although the exact amount anyone actually needs is still being determined) - but since like any watersoluble vitamin - your liver can break down the excess - you keep enough to keep you going.

    B12 deficiency is an unusual condition and one of the many I find very interesting. I hope this helps to pad out the details for people who are lurking.


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  • Registered Users Posts: 362 ✭✭joconnell


    Cheers for that Dr Indy!

    I'm in a similar situation, was feeling very out of sorts all last year and got a diagnosis for this in november. Got a neo-cytamen shot from a doctor near my parents which lasted approximately 6 weeks in total, went to a clinic in town for another when I felt weakness / tiredness coming back and got another. They said they'd administer them every 3 months but again I found I was getting symptoms after 6 weeks again. They refused to give me another shot but I had blood tests done at the same time to find out what level I was at - the results came back saying I was at the normal / low end.

    One question I have is that apparently b12 is used in lots of cell building functions and as I'm doing a lot of running and heavy weight training at the minute, would it be the case where the average level prescribed for people would be too low for me? I'm not sure what my mg number is, it's more that one of the trainers in the gym I'm at had something similar and had a series of injections a week apart for six weeks to build him up to about 1000mg. While I clearly don't know more than my doctor, I'm not sure she took into account my lifestyle whereas the doctor that treated the gym instructor was also in sports medicine.

    Anyone have any opinions? Interesting that a lot of folks have monthly as opposed to three monthly neo-cytamen shots. Also is there a general rule as to how long permanent damage would take if it wasn't treated?

    Cheers!


  • Registered Users Posts: 131 ✭✭Reeni


    How low did your levels go?

    I can't remember the figure at the time, but I had severe symptoms eg. slurring my words, memory/concentration problems, shaking, passing out. Also had some of the less well known ones like white patches on my skin, shooting pains in one side of my body etc.

    Also now that you've mentioned grinding my teeth I've become aware of clenching my jaw when I'm stressed. never noticed it before. I'll give the mouthguard a try, thanks!


  • Closed Accounts Posts: 63 ✭✭deadpoet


    colrow wrote: »
    I was diagnosed with this a couple of years ago, I have type 2 diabetes and the B12 deficiency was noticed in my routine blood tests I have, I've stopped producing Intrinsic Factor which assimilates b12 into the body through digestion, so I can't get it my tablets/food etc.

    I have an injection of B12 Cocobalmin or something like that, every 2 months and take 5mg of folic acid daily.

    I certainly am well aware when its getting low!!!!!!!!!!!!!!!

    Cobalamin.


  • Registered Users Posts: 362 ✭✭joconnell


    Just popped back yesterday for more injections - Apparently they've moved the goalposts on what is considered deficiency. I had 274 and apparently now this is considered towards the low end. They also recognised the nervous / mental symptoms and apparently once it gets to this stage it's take slightly more seriously so I'm for the 6 injections over a short period of time to put my levels up nice and high. Result!

    Hospital screwed up though and didn't do a full blood count so not sure if I've got pernicious anemia or not.


  • Registered Users Posts: 506 ✭✭✭McConkey


    Nice to see a thread on this! Was found to have this about 5 years ago. Initially it was tied in with iron and folate deficiency though after a long stint on galfer and clonfolic these returned to normal however the cytacon didn't do the trick and I get injections of Neo-cytamen these days. (Used to sleep about 15/16 hours a day, complete blindness for 10-15 s after standing up etc)

    I had anti-body testing initially then endoscopy and a colonoscopy in the last couple of months. My gut is normal, stomach villi normal so not coeliac thankfully.

    I had Neocytamen injections every month for a year there last year but stopped last Sept and (aside from feeling bitterly cold always) was ok till the last few weeks-now head rushes, dizziness and shallow brain starting again so popped into the nurse on Wed and waiting to see what the results say. No point in letting it get too bad. I have one of those white patches on my arm and a few on my stomach that are probably the same thing but never really thought about them before.


  • Closed Accounts Posts: 631 ✭✭✭neil_18_


    I've finished my 6 months injections, and blood test came back saying i dont need them now.

    But i'm constantly getting twitches in my fingers almost like electric shocks, but on the inside, and strange sensations down the back of my leg. Anyone else here get these? They are getting worse by the day. Think i'll be going to the doc again next week, and think i'll ask to get another blood test done!


  • Registered Users Posts: 3,461 ✭✭✭DrIndy


    Wise move. B12 deficiency can only be diagnosed by a blood test so your first port of call is your GP.

    The trouble with B12 deficiency is that although it is a rare but significant condition symptoms ranging from a feeling like you have a hangover to dangerous brain impairment and anaemia are in the spectrum. Only a GPs evaluation and possibly a blood test would let you know what is going on. B12 deficiency is not diagnosed clinically - only suspected.

    The best bet if you are concerned about this is to pop to your doctor to be assessed.


  • Closed Accounts Posts: 384 ✭✭Erren Music


    neil_18_ wrote: »
    I've finished my 6 months injections, and blood test came back saying i dont need them now.

    But i'm constantly getting twitches in my fingers almost like electric shocks, but on the inside, and strange sensations down the back of my leg. Anyone else here get these? They are getting worse by the day. Think i'll be going to the doc again next week,

    Yeah I get these, I can only explain them as superfast little worms zooming around inside the legs. My fingers freeze too. Do you get much brain fade? How tired do you get.
    neil_18_ wrote: »
    and think i'll ask to get another blood test done!

    I would recommend getting weekly blood tests where you have a gap after a lot of injections. That way you can monitor week to week how much B12 you are losing, and adjust YOUR injection schedule to that, rather than the wait and see approach.


  • Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    I was constantly getting twitches akin to those you're describing (to the extent that I'd have difficulty holding a cup of tea or coffee and drinking it without spilling it). The Neocytamen did help- but during a raft of blood tests- eg the FBC but also a T2-T3-T4 I discovered thyroid problems also (swinging over a 6-8 week period between very underactive and very over active).

    I'd suggest not assuming that simply because you need B12- that it is automatically going to be a magic bullet- its entirely possible (particularly for those with autoimmune issues) that other factors may also be at play.


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  • Registered Users Posts: 362 ✭✭joconnell


    Just curious for the folks that have gotten the series of 6 injections - I forgot to ask about the time scale of it sinking in - roughly how long did it take in your cases before you were back to normal / cleared up?


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