advice on next steps

hi all, I went to the doctors finally in October after 2 years of utter exhaustion, it was by then affecting my relationship etc as I had withdrawn from all socialising in the evenings etc. it took everything I had to do my full time job. at the time I did not link other symptoms which I now know to be linked ie pins and needles, stabbing pains in my fingers and chest, hair falling out. being psychologically so very low at times. I was lucky in that the doctor I happened to get an appointment with that day was knowledgeable in b12 and PA. he tested me and my b12 was around 150. I had loading injections every week for 5 weeks and now I am on every two months as the symptoms returned with vengeance after around 7 weeks. i tested negative for IF, this was done after all my loading doses. I haven't had any advice about next steps as I still dont know the route cause of my condition. can anyone advise whether I should press for this or just accept I am at least lucky to be receiving the treatment at the frequency I need it as I know many arnt from following this site.

5 Replies

  • "i tested negative for IF, this was done after all my loading doses."

    Are you in the UK?

    The BCSH Cobalamin and Folate guidelines mention "Antibody negative PA". It is possible to have PA even if IF test negative. I found page 29 in the BCSH Guidelines was useful. Martyn Hooper, the chair of teh PAS, tested negative on more than one occasion before finally testing positive.

    There are many causes of B12 deficiency besides PA.

    Have you ever had a Coeliac test? Thyroid tests?

  • My personal advice would be to accept that you have an absorption problem and move on. The treatment is the same whatever the actual absorption problem.

    Some causes are genetic- most probably are- and sometimes it can be worth finding out whether you have something obvious that could affect other members of the family - eg deformities in the ileum but personally I think you could drive yourself totally nuts trying to get to the bottom of it when tests can actually be so inaccurate that you can't draw a proper conclusion - the IFA test is at best 50% accurate so a negative doesn't mean that you don't have PA.

    Glad you are managing to get more frequent jabs - you should be on at least 2 months anyway if you have neuro symptoms like pins and needles.

    You might also want to look into other forms of supplementation so you aren't so dependent on the graces of GPS ... which can, unfortunately, be rather fickle. Current may understand B12 but no guarantee they won't move on.

    B12isn't toxic.

  • hi, yes you're probably right, I'm just very happy to have some alleviation of what I have endured to be honest and can stop thinking I'm going mad! my grandma had PA, I only found out after my b12 diagnosis when I mentioned it to family members. my mum has pretty bad upset tummys all the time for years but don't really know the cause. maybe they are linked, maybe not, who knows. my doctor put me on 12 weekly originally after my loading doses as I in fact hadn't mentioned or linked the other symptoms at the time, I'd only gone to him with the severe exhaustion which led to the b12 test. so yes it good that they have now adjusted the frequency for me.

  • I struggled for years before I was finally diagnosed with P.A. (due to gastric surgery when aged 17) told by my then doctor I had "two years to live", unless I either ate raw liver three times a day or monthly injections of Cytamen (cyanocobamalin) for the rest of my life.

    Much as love liver, onions & gravy I took the second option.

    I still do get the odd symptoms common to P.A. in the run up to the next injection (mine is on Monday, Hooray!) but I have "negotiated" with my now GP to have the occasional three week injection "when I feel the need".

    For years I have been ignorant about P.A. not ever knowing anyone else who had it and apart from the practice nurses who gave me the jabs had no one else to talk to about it - until I joined the PAS a few years ago and this forum more recently, both of which have been a great help with lots of good advice.

    My first question on the PAS site was something like "Does anyone else out there feel the need for more frequent injections of b12 in the run up to the next one?"

    I was absolutely amazed to find I was not alone....

    Rudders you are exceptionally fortunate that the "doctor I happened to get an appointment with that day was knowledgeable in b12 and PA" and it seems he has put you on a good regime - so "hang onto him and keep taking the injections" and don't worry too much.

    My first injection was given on 10th May 1972 - nearly 44 years ago and I'm still "clivealive" coming up to the age of 75.

    Be assured there is "life after P.A"

  • I use skin patches as well as the sublingual tablets - both methyl forms - but I'm doubtful the tablets do much. The patches also have folic acid in them. Its all been a case of trial and error for me. It appears that my body doesn't change the hydroxo into the usable form so its just as well I had been supplementing myself. Good luck, keep reading, there's a lot to get through but its worth the time and effort.

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