B12 Deficiency

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I was diagnosed with pernicious anemia in May. I had my loading dose of B12 and 1 booster since then, however some of my symptoms still remain.

I still have difficulty with my vision at times and struggle to focus properly; I'm still feeling exceptionally tired and days when I'm at work, I'm asleep by 9 and weekends I need an afternoon nap if I want to do anything during the evening. But my biggest concern is the pain I feel, especially in my hands but also in my feet, at times too.

Another thing is that my skin is in really poor condition and I requently get bad spots.

Can anybody let me know if these things will improve or if I'm stuck with feeling 'rubbish' all the time.

 

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6 Replies

  • Posted

    what is your folate level , do you take it when your on b12 injections x?
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    • Posted

      I have no idea what it is. I've not even seen a doctor, just got a phone call telling me to book injection appointments.  Not sure if there's a NHS guidance or if it's each surgey's own decision on how to treat patients

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  • Posted

    most people need b12 injections every other week , and not 3 month like most gps do, there is great groups on facebook that will keep you right
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  • Posted

    Hi Paffette, I'm sorry to read that you are struggling and disgusted with your doctor for his/her offhand treatment of you.

    Firstly, it is not uncommon for some symptoms to appear to be getting worse before they get better.  In a perverse way this is a "good sign" that the B12 you are having injected is starting to repair the damage caused by the deficiency.

    Secondly, as Jazzyanne mentioned you need a healthy level of Folate (folic acid) as this is essential to process the B12 you are having injected.  Check with your doctor to see if this was tested for.

    Thirdly you should be being treated in accordance with the BNF guidelines as below.  Sadly doctors tend only to read the first paragraph and not the one I have highlighted in bold italics.

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

    I suggest you make a list of your neurological symptoms and present them to your doctor.  If possible take someone with you who can verify your symptoms as the doctor is less likely to pooh pooh you in front of a witness.  

    You are entitled to ask for injections evey other day until there is no further improvement and only you will know when this will be - not your doctor.

    If you have any further questions please don't hesitate to come back on here but be assured thare is life after P.A. as I have had it for 45 years and I'm still "clivealive" at the age of 75.

    I wish you well

      

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  • Posted

    Hi Paffette

    So sorry you are having a difficult time...You need to be assertive. If your loading dose was May and you have had but 1 booster. .this is November

    ...I seriously question that you have not received many more booster injections. Pernicious Anemia is an inability of the gastrointestinal tract to ab adsorb B12. B12 is an essential. you can not live without B12.

    Go back to your physician. If you ate still dissatisfied, search out a new doc.

    I have no doubt that you are exhausted. please stay in touch.

    kind regards

    judith

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