Getting b12 injections but still feeling the symptoms

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First of all I'm not from the uk im Irish but Im hoping I'll still be able to get some answers.

I am often prone to mouth ulcers and I get them fairly bad but took no notice. But in August I had them for nearly 2 weeks and they just werent going away so I went to the doctor hoping she would give me something to help I didn't think there was any underlying problems. So I went and she gave me an inhaler(I think it was steroids), a paste to put on after the inhaler to keep it in, a treatment for thrush (my tongue was completely white) and a pain killer which had some anti inflammatorys in it. She also took my bloods, which I thought was just a precaution but a few days later I got a call off her secretary saying my b12 and folate was low and that I should come in and she would explain everything. Looking back I had been in a constant bad mood but at the time I didn't think anything of it and I had been quiet tired but just put it down to working 50 hours a week waitressing (on my feet all day).

I went in but she didn't explain much only how to inject the b12 (she told me to take orovite tablets for 2 months, they're nearly gone now). So she never actually mentioned the words pernicious anemia to me but I think I do have it as she gave me a prescription for 10 injections, 1 everyday for 5 days and after that every 3 months, and when I asked how long these injections were for she said 'from now on' and to get my bloods checked every year. My mom had just a normal check up a few days after me and she thinks that she did mention pernicious anemia to her and she said she tested me for celiac disease too but I didn't have it.

So it's been nearly 2 months since I had the last of my 5 injections and my next one should be around mid November but I've got mouth ulcers again fairly bad I haven't eaten properly all week I'm starving but the pain of hunger is more bareable than the pain of eating. I'm feeling quite tired again as well, unable to stay awake in lectures (I'm back at college now) but not in the really bad mood that I was before.

Is it normal to still have symptoms even though I'm being treated? Thanks in advance.

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  • Posted

    Hi, I'm not a medically qualified person but am sorry to read about your problems.  I am unable to say whether there is a connection between P.A. and mouth ulcers but I think I read into your comment that they improved whilst you were having the loading doses of B12.

    Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

    By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

    Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.It seems your doctor has prescribed injections for you for the first paragraph whereas if you do have P.A. you should be treated as per the highlighted paragraph.

    Do you know if you have been tested for Intrinsic Factor?

    Also, you must keep your Folate level healthy as this is essential to process the B12.

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    • Posted

      Ya my doctor said the mouth ulcers probably were by it. They did improve as she gave me an inhaler etc but they've since come back.

      I'm not sure exactly what i was tested for but I'm going to ring next week to confirm that I do have PA.

      My doctor seemed to say it was the other way around that be folate was own because my b12 was low not the other way around. She said that it would come back up again when my b12 came up again.

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    • Posted

      B12 and B9 (Folate) are two separate vitamins both normally obtained via two completely different types of food.

      B12 is derived from meat, fish, eggs, poultry, dairy produce - cheese, milk etc.

      Folate comes from eating leafy green vegetable, sprouts, broccoli, peas, beans nuts etc.

      Eating the two together in normal, traditional "meat, potato, greens and gravy" meals provides the supply of both which we need.

      However the processing of B12 depends essentially on Folate and whilst your level of B12 will rise "artificially" via the injections that won't "automatically" have any effect on the level of Folate as your doctor seems to be suggesting.

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  • Posted

    Hi meadbh! 

    I'm Irish too and I was diagnosed with this in March. I had a few other issues and was diagnosed in the Glaway Clinic. After I was discharged my GP took over and that's where my story gets very like yours. I got loaded up in the beginning and then was reduced back to a shot every 3 months. 

    I have been back to my GP every month since with horrible symptoms again. I go back, get a blood test which reads my levels as very low again, so i get a course of 4 shots and then get told to reduce back to one every 3 months. I had my last shot the first week of sept and am not due to go back until the end of dec but already I can feel some of the symptoms starting. 

    If it feels like an uphill battle you are not alone. I'm sorry I cant give you more reassurance but I can at least tell you that I feel your frustration. 

    My advice is to just keep going back to the GP. 

    Hang in there! 

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    • Posted

      Hi Anarie (what a lovely name) I'll say the same to you as I did to Meadhbh that if you have been diagnosed with P.A. your treatment should be as follows:

      Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

      You don't mention your Folate level having been tested. Folate is absolutely essential to process the B12 you are having injected.

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    • Posted

      Hi Anarie,

      It sounds as though the treatment for PA is different here to UK.

      Were your loading shots the same as mine? (1 everyday for 5 days) becauses what I read online is usually every second day for 2 weeks/until no further improvement.

      I'm actually living in Galway now as well since I've gone back to college, which means I can't go back to my own GP but I can go to the student health unit. I will definitely go there this week and ask for another blood test.

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    • Posted

      Hi Clive!

      Thanks for your advice, I don't think anyone has ever discussed floater with me, in the hospital or the gp.

      I'm going back this week as I've been having some circulation problems in my hands and feet, so I will ask them to look into it for me. Thanks again for your help Clive

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    • Posted

      I think it is different here to the uk. I wasn't in hospital for 4 days so I got a shot everyday there and one more in the GP, then I got one a week for two weeks.

      I was supposed to then cut back to one every three months but I've never lasted more than 4/5 weeks without having to go back for another.

      One tip I picked up lately is to get the gp to prescribe you 10 or more shots on the prescription, works out much cheaper than buying them as you go.

      Hope you're feeling better 😊

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    • Posted

      I had fairly similar to you so but not the exact same. Definitely more similar than what I've read other people on the internet seen getting.

      My doctor actually did prescribe me 10 all at once so I could just have another one now if I wanted. But I don't really want to without her say so in case she's won't prescribe More when they time comes

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