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Vitamin B12 Deficiency

  • 29-01-2010 4:27pm
    #1
    neil_18_
    Closed Accounts Posts: 631 ✭✭✭


    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?


«13

Comments

  • #2
    colrow
    Registered Users, Registered Users 2 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!!!!!!!!!!!!!!!


  • #3
    smiley girl
    Registered Users, Registered Users 2 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?


  • #4
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 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........


  • #5
    emzolita
    Registered Users, Registered Users 2 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.


  • #6
    vinylqueen
    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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  • #7
    Reeni
    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.


  • #8
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 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?


  • #9
    vinylqueen
    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!


  • #10
    dazey82
    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! :)


  • #11
    cynder
    Registered Users, Registered Users 2 Posts: 4,128 ✭✭✭cynder


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


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  • #12
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 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


  • #13
    katiewobbles
    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)


  • #14
    neil_18_
    Closed Accounts Posts: 631 ✭✭✭neil_18_


    katiewobbles wrote: »
    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


  • #15
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 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.


  • #16
    annk1
    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?


  • #17
    Erren Music
    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.


  • #18
    Reeni
    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 :)


  • #19
    Reeni
    Registered Users Posts: 131 ✭✭Reeni


    Erren Music wrote: »
    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.


  • #20
    Erren Music
    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?


  • #21
    DrIndy
    Registered Users, Registered Users 2 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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  • #22
    joconnell
    Registered Users, Registered Users 2 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!


  • #23
    Reeni
    Registered Users Posts: 131 ✭✭Reeni


    Erren Music wrote: »
    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!


  • #24
    deadpoet
    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.


  • #25
    joconnell
    Registered Users, Registered Users 2 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.


  • #26
    McConkey
    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.


  • #27
    neil_18_
    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!


  • #28
    DrIndy
    Registered Users, Registered Users 2 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.


  • #29
    Erren Music
    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.


  • #30
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 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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  • #31
    joconnell
    Registered Users, Registered Users 2 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?


  • #32
    Erren Music
    Closed Accounts Posts: 384 ✭✭Erren Music


    joconnell wrote: »
    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?

    I have had 70+ injs in the last 16 months, and I still have very low b12 and the same symptoms. It is not a cure for some of us.


  • #33
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Erren Music wrote: »
    I have had 70+ injs in the last 16 months, and I still have very low b12 and the same symptoms. It is not a cure for some of us.

    Ditto- I've gotten Neocytamen injections (the 1000Mg ones) every 2 weeks, for over 10 years- and am still low.......

    Very often low B12 can be a sympthom of something else altogether........


  • #34
    Erren Music
    Closed Accounts Posts: 384 ✭✭Erren Music


    smccarrick wrote: »
    Ditto- I've gotten Neocytamen injections (the 1000Mg ones) every 2 weeks, for over 10 years- and am still low.......

    Very often low B12 can be a sympthom of something else altogether........

    Tell me about it.

    I have been tested for thyroid, insulin, MRI, cat scan, had the internal camera check, and the newest test was for cushings, which I am awaiting results (have 3-4 symptoms).

    Biggest worry is pancreatic cancer.

    I would just like my old brain power back though.


  • #35
    joconnell
    Registered Users, Registered Users 2 Posts: 362 ✭✭joconnell


    I feel your pain erren - I had a good few months being uncoordinated and stupid before I went to the doc to get it looked at (thought it was caused by something else that was wearing off) and it really does a bit of a job on your nut. It's very annoying that it's so hard to find out what is causing it - as you say the not knowing is another thing that occupies your mind too. Best of luck with the results and hopefully it's something you can clear up :)


  • #36
    ballsymchugh
    Registered Users, Registered Users 2 Posts: 7,938 ✭✭✭ballsymchugh


    hey guys,
    regards the TMJ disorder, it's not really something to do with vit b12 defic. it's caused mainly by stress, which may or may not be induced by worrying over vit deficiency. the state we are all in now though, there's plenty of things to stress over.
    anyway, if you grind, then you may have to get a custom made biteguard which would be tougher than what you would buy in the shop. for those who have painful clicks in the joint just in front of your ear, you may need to see a specialist about it. there's only a handful of them in ireland, eamonn murphy in cork springs to mind but there's a couple of facial pain specialists in dublin that are well clued in. your dentist would know more about it than your gp though, and would know who to refer you on to also.

    one more thing, one other symptom of vit b12 defic is a burning sensation in your mouth. it's more common in those with a crap diet than those of you that have absorption trouble though.


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  • #37
    Reeni
    Registered Users Posts: 131 ✭✭Reeni


    I went to my doctor yesterday and he confirmed I had TMJ. I'm guessing caused by stress too since I'm under alot of it, but I'm not sure if its related to the B12. Probably all part and parcel. He's also sending me to get my levels checked so I'll know them in a week or so. He did say that I shouldn't need Neo-Cytamen once a month that it should be once every months at most. I explained that if I go without for a few weeks I become symptomatic and he said that this was because my levels had necer been built up properly. I decided not to mention that he was the one 'building them up' in the beginning and I'll wait and see what the blood results say.


  • #38
    Erren Music
    Closed Accounts Posts: 384 ✭✭Erren Music


    joconnell wrote: »
    I feel your pain erren - I had a good few months being uncoordinated and stupid before I went to the doc to get it looked at (thought it was caused by something else that was wearing off) and it really does a bit of a job on your nut. It's very annoying that it's so hard to find out what is causing it - as you say the not knowing is another thing that occupies your mind too. Best of luck with the results and hopefully it's something you can clear up :)

    Thanks mate, have something thats destroying the B12 as fast as I can inject it. I am not bothered anymore, whatever happens will happen.
    ballsymchugh wrote: »
    hey guys,
    regards the TMJ disorder, it's not really something to do with vit b12 defic. it's caused mainly by stress,
    Reeni wrote: »
    I went to my doctor yesterday and he confirmed I had TMJ. I'm guessing caused by stress too since I'm under alot of it, but I'm not sure if its related to the B12. Probably all part and parcel.

    Yeah, but you will find if your B12 gets as low as mine did, that other symptoms will surface because of the Psych and nerve damage issues.
    ballsymchugh wrote: »
    anyway, if you grind, then you may have to get a custom made biteguard which would be tougher than what you would buy in the shop.
    Agreed, but any mouthguard will do until you get one made.


  • #39
    neil_18_
    Closed Accounts Posts: 631 ✭✭✭neil_18_


    Erren Music wrote: »
    Thanks mate, have something thats destroying the B12 as fast as I can inject it. I am not bothered anymore, whatever happens will happen.




    :eek:
    You're going to stop taking them?

    Are you sure ?

    Do you get them every week is it? I suppose that would be very annoying.

    Would you not get them every month even?

    Then at least you would have some B12.


  • #40
    o1s1n
    Registered Users, Registered Users 2 Posts: 35,253 ✭✭✭✭o1s1n
    Master of the Universe


    Just after seeing this thread on the front page..I'd completely forgotten that I'm meant to be getting b12 injections.

    A little over three years ago I had fairly major bowel surgery where they removed about a foot around my ileum due to Crohn's Disease. Its been in remission ever since and will hopefully stay that way for a long time to come. (Fingers crossed)

    I'm meant to be getting a Neocytamen shot every two months. Did for a good while, but then I missed one appointment, missed another/found the stuff hard to get my hands on, had an accident that resulted in me taking Warfarin/requiring blood tests on a regular basis...and just more or less forgot about it completely.

    And I have to say, I haven't noticed any difference at all. Maybe I'm just one of the lucky ones? The only symptom I really have of the above is paleness..several doctors have always thought I'm slightly anemic but my bloods come back fine.

    I dunno, must go and have a word with my GP about this.


  • #41
    neil_18_
    Closed Accounts Posts: 631 ✭✭✭neil_18_


    o1s1n wrote: »
    Just after seeing this thread on the front page..I'd completely forgotten that I'm meant to be getting b12 injections.

    A little over three years ago I had fairly major bowel surgery where they removed about a foot around my ileum due to Crohn's Disease. Its been in remission ever since and will hopefully stay that way for a long time to come. (Fingers crossed)

    I'm meant to be getting a Neocytamen shot every two months. Did for a good while, but then I missed one appointment, missed another/found the stuff hard to get my hands on, had an accident that resulted in me taking Warfarin/requiring blood tests on a regular basis...and just more or less forgot about it completely.

    And I have to say, I haven't noticed any difference at all. Maybe I'm just one of the lucky ones? The only symptom I really have of the above is paleness..several doctors have always thought I'm slightly anemic but my bloods come back fine.

    I dunno, must go and have a word with my GP about this.

    Hope it remains ok! Wouldnt want a boardsie getting sick now would we?

    Maybe you just dont need the injections anymore.

    Definitely best to go to a doctor, what harm can it do.


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  • #42
    sersh
    Registered Users Posts: 11 ✭sersh


    Hi all, I am a 29 year old female who has just got blood results back. i have a B12 level of 138, apparently this is low but not to bad, i have to take the course of intensive injections for a few months then get tested again. i am a little worried though as i have heard that a b12 deficiency can affect the mental health? is this true ? if so does it have to get to a really low level for this ? i have all the normal symptoms as well as of late im easily agitated, and have mood swings, i put this down to pms but am not sure now and getting a little worried. Does anyone have any advice on this ? i would appreciate any advice . Thanks
    user_online.gifreport.gif progress.gifedit.gif


  • #43
    neil_18_
    Closed Accounts Posts: 631 ✭✭✭neil_18_


    sersh wrote: »
    Hi all, I am a 29 year old female who has just got blood results back. i have a B12 level of 138, apparently this is low but not to bad, i have to take the course of intensive injections for a few months then get tested again. i am a little worried though as i have heard that a b12 deficiency can affect the mental health? is this true ? if so does it have to get to a really low level for this ? i have all the normal symptoms as well as of late im easily agitated, and have mood swings, i put this down to pms but am not sure now and getting a little worried. Does anyone have any advice on this ? i would appreciate any advice . Thanks

    You might improve once you get the injections. We can't give medical advice here though.

    There is a doctor who comes along and posts here on a regular basis. Dr. Indy I think his username is. I'm sure he'll answer your question when he sees it.

    Hope you start feeling better after the injections :)



    On another note, this thread is going really well. When i started it i didn't think i'd get this many responses! Its more common than i thought!


  • #44
    sam34
    Closed Accounts Posts: 8,073 ✭✭✭sam34


    sersh wrote: »
    Hi all, I am a 29 year old female who has just got blood results back. i have a B12 level of 138, apparently this is low but not to bad, i have to take the course of intensive injections for a few months then get tested again. i am a little worried though as i have heard that a b12 deficiency can affect the mental health? is this true ? if so does it have to get to a really low level for this ? i have all the normal symptoms as well as of late im easily agitated, and have mood swings, i put this down to pms but am not sure now and getting a little worried. Does anyone have any advice on this ? i would appreciate any advice . Thanks

    if you have new symptoms you should speak to your doctor, as they may or may not be related to the B12 deficiency


  • #45
    Erren Music
    Closed Accounts Posts: 384 ✭✭Erren Music


    neil_18_ wrote: »
    :eek:
    You're going to stop taking them?

    NO


    Do you get them every week is it? I suppose that would be very annoying.


    Yes 1 a week

    Would you not get them every month even?

    Not enough, read my earlier posts for B12 usage

    thanks


  • #46
    TequilaMockingBird
    Registered Users, Registered Users 2 Posts: 4,392 ✭✭✭TequilaMockingBird


    Reeni wrote: »
    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 have Pernicious Anaemia, and should get the injection once a month, but I let it slide far too often.

    I'd love to be able to do it myself, but I'm not sure I'd have the nerve. My sister used to do it for me, but she can't face it anymore - it freaks her :D.

    I'm not looking for medical advice, but if you could tell me a bit about it, I could think about it and have a chat with my GP.

    .


  • #47
    miss no stars
    Closed Accounts Posts: 2,957 ✭✭✭miss no stars


    Only found out about having B12 deficiency a couple of months back, have had a few injections since and the difference is incredible. My hands aren't iceblocks anymore! Actually only went to get bloods done out of pure chance. I was in getting a vaccination and the nurse decided I looked tired and that my skin didn't look right (dry and splitting all over the place) and she decided that I should have a thyroid test done, but threw in the whole works while she was at it. Yay for nurses and doctors who actually look at the person they're dealing with! Due another injection on monday and for the last week I have been feeling rather low on it. Had been getting injected every two weeks initially but the last one was about a month ago. Might ask if I can run with 3 weeks for the next one.

    Does anyone know if you have to keep getting injections indefinately if they seem to be working to start with?

    Also, my fbc came back as normal so would that indicate that I just can't absorb it but am still making IF? I ask because I'm lactose intolerant but never had a scope done so don't know what state my insides are in tbh, what damage I've done since becoming lactose intolerant (a gradual thing that I really only started to notice around 7 years ago, funnily enough). If it could be that by keeping small amounts in my diet I'm destroying my ability to absorb B12 I'd sure as hell like to remove that lactose!


  • #48
    mcdermla
    Registered Users Posts: 120 ✭✭mcdermla


    Have you had a Schilling test? It's a procedure where you ingest B12 and are injected with B12 and your urine is monitored and tested. Normally that's the best diagnostic measure. Gastroscopy and bone marrow aspirate and biopsy are also used but are very invasive.

    Pernicious anaemia can be a primary disorder with no known cause; it's thought to be an auto immune response that results in the atrophy of the gastric mucosa, i.e. the body does it to itself for no apparent reason. It is also considered to be genetic so it might be worthwhile to get your loved ones checked out. Pernicious anaemia may be a secondary disorder caused by a strict vegan diet (B12 is generally found in meat), lack of intrinsic factor or non-absorption in the terminal ileum. I suspect in your case it might be primary.

    The typical pernicious anaemia patient initially requires a 1mg intramuscular injection of Hydroxocobalamin (basically just B12) 3 times a week for two weeks. Maintenance is 1mg every 3 months afterwards. But this isn't the same for every patient. However medication IS required for life so it's important that you attend every appointment so as not to become symptomatic again. And make sure you eat a B12 rich diet, lots of dairy or soya if you don't like dairy foods, you can also get it in supplement form.

    Pernicious anaemia can be debilitating if not addressed so make sure to take extra care of yourself! Sorry if this post was a bit waffly I hope it helped!


  • #49
    Bookworm85
    Registered Users Posts: 247 ✭✭Bookworm85


    Hi all,

    I also have b12 deficiency. I first diagnosed in January, but I had been showing symptoms for nearly 2 years. I was constantly cold, and generally feeling like crap, feeling weak, dizzy and always tired. I was going to my family GP with these symptoms and he always put it down to having a virus or a cold. I was falling asleep at the drop of a hat, and could sleep for hours during the day and still sleep all through the night.

    Anyways everything came to a head when I fainted after donating blood after xmas. I felt fine during and immediately after they took blood, but fainted about 6 hours afterwards at home. I rang the blood transfusion serv and they told me to go to my GP just incase. I woke up the next day and felt worse than ever.

    Anyways went to the doc and she did a full blood test. Results came back over a week later, with a b12 level of 76! So I went back to her for injections of cyanocabalamin (spelling?) once a week for 5 weeks and once every 2 weeks for nearly 2 months. My levels went up to 200 and something, she said still kinda borderline so she told me to come back after 3 months for another blood test. The difference the injections made was fantastic, plenty of energy and no dizzyness, no falling asleep everytime I sit down:)

    But my energy levels have been dropping again, and starting to feel a bit crappy so I have made an appoinment to go back this week instead of waiting till the middle of June.

    edit*

    I also suffer from very bad psoriasis which is thought to be auto immune. I've read that b12 deficiency is linked to auto immune disorders. Does anybody else here have other auto immune probs?


  • #50
    ImAYesGirl
    Closed Accounts Posts: 10 ✭ImAYesGirl


    Hi all

    I was diagnosed with this today. I have been experincing the symptoms you all describe above. Along with some others. They have been getting worse lately especially the forgetfullness, tinitus, and headaches. Im amazed the amount of symptoms I had from reading about this all day!

    I wake up daily with a headache. its eases of once i get up an walk around so I went to doc to see about these headaches and aura migraines I started getting recently. Did an mri, that was normal. Also did bloods and showed very low b12.
    Im glad i know now whats been going on with me for the past 8-10 months. For me, its definetly not my diet as I eat tonnes of dairy,meat and fish.

    So im going to be getting weekly injections for 10 weeks and monthly injections for 4 months. I dont know yet what the plan is for after this treatment. Its a bit worrying that some of you say this is a life long treatment.....

    Does anyone know if health insurance will cover this treatment? as its going to be 35 euro for each injection for the next few months. Ive already spent a fortune on several doc visits over the past 3 weeks.

    Thanks in advance.


  • #51
    Bookworm85
    Registered Users Posts: 247 ✭✭Bookworm85


    Hi Iamayesgirl,

    Wow €35 is a lot. My GP Gives me a script for the b12 capsules (its about €7 for 5 capsules) and she charges me €10 to do the injection. If she is not available then the nurse does them too.

    Is there a nurse in your GP's surgery? If there is check out how much she charges.Maybe if you aren't squeamish ask if the GP will teach you how to administer the injections yourself.

    I dont know if your health insurance will cover the whole cost. Do you have a plan that allows you to claim against GP fees? If you do, maybe you could recover some of the costs that way?


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