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Vitamin B12 Deficiency

245

Comments

  • #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: 32,278 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 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 Posts: 7,936 ✭✭✭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 Posts: 34,392 ✭✭✭✭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 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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  • #52
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    I'd echo what Bookworm85 has said- if you are going to be taking these injections indefinitely- there is no reason that you shouldn't be shown how to do them yourself. Insulin dependent diabetics give themselves injections several times a day- admittedly this is an intramuscular injection, and not a subcutaneous one like insulin, but the context is the same. If its something that you are going to need on an ongoing basis, it makes a lot of sense to develop a degree of self sufficiency.

    I was given an orange and told to practise on it- and to show the nurse how I was doing it. Rudimentary- and I did make mistakes- but I kept with it.

    Those GP visits add up remarkably quickly when you're on a tight budget!!!

    S.


  • #53
    joconnell
    Registered Users Posts: 362 ✭✭joconnell


    Most of the pharmacies in city center dublin have run out of neocytamen which is a bit annoying - apparently the makers are annoyed at being under the discount scheme so have given no date for re-stocking. Only the regular cytamen around which is pretty inconvenient. Any alternatives?


  • #54
    ImAYesGirl
    Closed Accounts Posts: 10 ✭ImAYesGirl


    Bookworm85 - thanks for your reply, ya 35 is crazy really, i certainly wasnt given the option of getting a script. I will have to ask next time, or else I will go else where. There is no nurse there. Had my 2nd injection yesterday. I dont need an appointment. They told me I can just walk in when it suits and let them know im there for b12 and they will slot me in straight away. I do go a bit pale when i see needles...but its something id be willing to to get over and do myself.

    smccarrick - thanks also for your reply. that was a good idea to practice on the orange....i hope your mistakes were on the orange and not on yourself....eeekkkkk....
    I agree about being able to do it myself. I will be away for the last 3 weeks of this 10 week course. So will obviously not be able to go to my current gp to get them.


  • #55
    Bookworm85
    Registered Users Posts: 247 ✭✭Bookworm85


    Got my blood tested again last week and my GP buzzed me yesterday with the results. B12 down to 103 so back to her Friday for more injections :(

    She thinks I might have Pernicious Anaemia, so she has drawn up a list of foods to eat, (to make sure I am getting enough b12 in my diet) and said she wants me to keep a food diary for the duration of my next lot of injections. She said that if my levels dont pick up after that then she will send me for a colonoscopy (eek!) to check my gut for problems. I also have to take extra iron suppliments and b12 tablets and lots of vit c too!

    I do go a bit pale when i see needles...but its something id be willing to to get over and do myself.

    I used to be like that too, but I am totally over it now. Before I used to look away or close my eyes when doctors were taking blood/injecting. But I got braver and looked away when they were sticking the needle in, but would look back when they had it stuck in and would watch them take the blood etc. I just kept at it an when I was comfortable with that, I just started to watch the whole process.


  • #56
    Mistymaud
    Registered Users Posts: 45 ✭Mistymaud


    I know I'm resurrecting an old thread here - but does anybody in Ireland source methlycobalamin injections? Seems, on reading a few of the threads, that you sometimes have a problem getting the standard stuff so it is a bit of a concern.


  • #57
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    Mistymaud wrote: »
    I know I'm resurrecting an old thread here - but does anybody in Ireland source methlycobalamin injections? Seems, on reading a few of the threads, that you sometimes have a problem getting the standard stuff so it is a bit of a concern.

    Hydroxocobalamin is now the standard in Ireland (it used to be cyanocobalamin- but there were too many people reporting reactions against it). I'm not aware of methylcobalamin being widely available- perhaps someone involved in the industry can elucidate?


  • #58
    Mistymaud
    Registered Users Posts: 45 ✭Mistymaud


    I think you usually have to import it, so it would be interesting to see if any of your members have done so - and if they encountered any problems.

    I think it's hydrox that they use in the UK but I'm quite happy with the methyl and really, really, don't want to stop using it if I don't have to.


  • #59
    McConkey
    Registered Users Posts: 506 ✭✭✭McConkey


    In most pharmacies they will source the product from a wholesaler of unlicensed medicines such as Medisource for you, this can take a bit longer and it is more expensive but if you need it you need it. Not sure what happens if you are on the medical card with regard to payment for unlicensed products.

    Cobalamin H is what I have seen being used at the moment although I'm sure there are a few different types being imported.


  • #60
    littleaoibh
    Closed Accounts Posts: 6 ✭littleaoibh


    I was diagnosed with B12 deficiency a week and a half ago and got my 4th injection today. My level was 46, which I didn't realise was incredibly low until I started reading threads like this and seeing most people's levels were 100 when they were diagnosed! I was feeling extremely tired and only got checked up as my younger sister was diagnosed with pernicious anemia last month(which they suspect I might have too).

    To be honest I seem to feel worse after the injections than better.


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  • #61
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    littleaoibh wrote: »
    To be honest I seem to feel worse after the injections than better.

    I normally feel like crap for 2-3 days after each injection (not sure why). Give it a few days- if you still feel like crap- get onto your consultant or GP. The anaemia will have you feeling totally washed out anyhow........:(


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