Welcome

Once in a while life throws something our way which is completely impossible to ignore.

I was diagnosed with B12 deficiency in 2012 and the profound lack of knowledge of this condition inspired me to join others in raising awareness of this very common but little known, life threatening deficiency.

Please consider signing and sharing our petition – you will be helping to save lives.

Please go to www.b12deficiency.info for access to information, advice and support.

Thanks for visiting,

Best wishes

Tracey

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19 thoughts on “Welcome

  1. Hi, have come across this place by accident. Have pernicious anaemia. Am severely deficient- going bright yellow again with all other symptoms. Was told injections stopped for lockdown but have heard NHS has stopped them all permanently, buy tablets. Please does anyone know if this is true and where to get the written “law” that says this is so? thanks for your time best wishes

  2. I have 2 auto immune conditions one of which is linked to pernicious anaemia. I was given B12 3 monthly but then was diagnosed with kidney cancer. Kidney removed and I felt great initially but as the months and years have passed I’ve deteriorated and now feel dreadful on a daily basis. One if my illnesses is hypothyroidism but each time I go to the doc they just keep saying “levels are fine” I’ve got really bad brain fog in a daily basis and my eyesight can just go at a moment’s notice.

  3. Hi Tracey, I am also B12 deficient (coeliac) and have injections. My eyes have been opened to how important this vitamin in for a myriad of functions. I work within the NHS at a reasonable senior level. Do you ever come and do talks to people? I could probably help arrange this. BW, Carolyn

  4. I was diagnosed with P.A. 46 years ago and put on cyanocobamalin 1mg (Cytamen) injections every four weeks.

    I had a very bad reaction to hydroxocobamalin when it was introduced in the 1980s so have continued with the cyano ever since.

    I am now being told by my pharmacy that they can no longer dispense my prescription because N.I.C.E have decreed that cyanocobamalin “injections are not prescribable in NHS primary care”

    https://healthunlocked.com/api/redirect?url=https%3A%2F%2Fbnf.nice.org.uk%2Fdrug%2Fcyanocobalamin.html

    Am I the only P.A. patient in the UK who doesn’t “get on” with hydroxo and what do I do now?

    Clive Parsons

    • Hi Clive, I know of a few patients like you who do better on Cyanocobalamin injections, have you spoken to your local CCG regarding this? Have you asked your GP to help you? Best wishes Tracey

      • Thanks Tracey,

        My Pharmacist actually telephoned my doctor who gave his “go ahead” for her to dispense the prescription for 5 x cyanocobamalin 1mg and a note has been inserted in my records to the effect that future prescriptions may also be dispensed,

        When ‘phoning to tell me that I could now collect my B12 the Pharmacist said that there appears to be a “shortage” of cyano “due to manufacturing difficulties” so this saga may be ongoing. At least I’m OK until October and at my age (77) every month is valuable.

    • I also had a reaction to Hydroxy….my blood pressure fell and was unrecordable…..blue lights to casualty..but I recovered at that time without need for intervention just time……it was suggested that the carrier might have been the cause…..but my go was not keen for me to have injections…..low dose oral sub lingual replacement was useless….
      I now buy over the Internet large dose sub lingual b12 but feel that after a few years it is insufficient…..
      I live in Lincolnshire and feel that there is no interest or deep knowledge of b12 deficiency in the local medical population at all……..I visited a haematologist in Nottingham who suggested that I increased my vegetable intake ?…….!!!

  5. I was diagnosed 20 years ago. My doctor knows very little about this disease. I’ve started having neuropathy symptoms in my limbs and glad I found this site in hopes to get information on how to better treat this disease.

  6. Hi Tracey,
    I was diagnosed last year, and I have to say the injections have changed my life. I used to think I was suffering from depression, when in fact it was so simple. However, I have discovered a pattern last year where my symptoms recur after around 9 weeks. My doctor this week told me I can have the injection earlier, but rolled his eyes because he says my levels, if tested, would still be high. I wonder, since you clearly have details of a great many of us, would there be any call to find a professional who would conduct a study and analyse data from all our experiences?? I am not a scientist, but perhaps some sort of standardised diary of symptoms for example and dates of injections could be useful. If there is no clinical evidence why don’t we create some? Just a thought

    • Absolutely Carole, there have been studies carried out by the PAS and more ongoing via support groups so hopefully one day we will get our voices heard! I am so pleased you discovered your deficiency. Your doctors reaction is all too common I’m afraid, shocking that they are still so ignorant of the facts!

  7. Hi Tracey, I support your goals and thought you may be interested in in my wife’s solution. It took a few years to diagnose her deficiency but after losing our hydroxocobalamin supply and finding that cyanocobalamin did more harm than good we got a new source in the USA.

    We now both take the sublingual daily and it is very cheap compared to the injections. I have my wife and life back. Feel free to contact me.
    Good luck,
    Charles S.

    • Dear Charles

      Thank you for your comment, I am so glad you have your wife back!
      Unfortunately sublinguals just don’t ‘cut the mustard’ for many patients. In the UK injections cost very little and we are very lucky that the NHS uses hydroxocobalamin. I have to say that whilst Cyanocobalamin injections may not suit everyone it is a form that keeps millions of people alive and they can convert it.

      It would be lovely if clinicians could find the right form for all patients as we are all so different, methylcobalamin does nothing for me at all in any form.
      Best wishes Tracey

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