GP

Hi. Long story short, I had a bowel resection 20 years ago. I was given no advice or guidance from hospital or GP on how to cope with possible consequences. After ten or so years, I realised my health was deteriorating and was told by several GPs that depression was causing my body to degrade. Last year, for the first time, doc reluctantly did bloods and found macrocytosis and b12 def. I had loading injections and now have 3-monthly injections. My weakness, pain, extreme fatigue, digestive problems etc etc etc are no better. When I asked for more frequent injections I was told 'This is how we do it.' My GP has told me things will not improve but the injections are needed for life. I now need a Carer, fall over, can't do housework, can't walk more than a few yards, can't look after my grandson with ASD, might as well give up. Help?

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  • Hmmm

    Another GP with little knowledge of B12 ' this is not how you do it' if you have B12 deficiency and you display neurological symptoms then it is injections every other day until there is no further improvement. To say there is no chance of improvement is shocking firstly because they should have picked your B12 up earlier and secondly because they cannot state there is no improvement until you have had the correct doses of B12. As many have posted here before you need to get a copy of the Nice guidelines, available through the forum and present them to your GP. Do also get your Iron Ferritin and folate levels checked as you need folate with the B12 and if the iron levels/ ferritin are low then you should be prescribed Iron. Have you any recent blood tests you could post on the forum so others can offer support.

    You cannot live like this I know how it feels and had to resort to self injection. Don't give up and keep in touch with this great forum

    Mark

  • I am sorry to read of your predicament. I had several bowel resections from the age of 27 for Crohns and TB. That was 43 years ago and like you I was not warned of the consequences in relation to B12. However I am not in such a bad way as you - so is it possible there is something else going on in addition to the B12 deficiency ?

    Are you taking medication for your digestive issues ? Have you had your VitD tested ? Also your thyroid as that can cause similar symptoms to Low B12.

    As you have neurological issues you should be able to have more frequent injections. Did you have your Folate tested and Ferritin ? All these are important and need to be optimal and not just in range.

    If you are on a phone please scroll down and down until you see the heading *Pinned Posts* where you can read many useful articles with the information you need. On a PC these posts are to the right of yours :-) Also check out Sleepybunny - who posts endless links for you to be well informed.

  • You have been deficient for so long , there's no way that monthly injections will be sufficient . GPs are not knowledgeable about PA or B12 deficiency . You should consider self-injection . This is cheap if you buy in bulk . ( about £1 a shot ) Doing S.I. has changed my life ! I know that sounds dramatic , but it's true . It sounds as though you have PA . If this is so , digestive problems are common because PA means you have low or no stomach acid Hypochlorhydria or Achloryhdria . You need acid to digest your food and to absorb the nutrients in it . Lack of acid upsets the stomach flora . Probiotics help to restore the balance . So take a good probiotic and eat organic sauerkraut / kimchi etc . Some people have a drink of diluted organic cider apple vinegar or lime juice for acidity .

  • There are two different protocols for treating a B12 deficiency in the UK (well 3 if you count a deficiency caused by diet). If you have neurological symptoms - and it sounds likely that you do - then the recommended treatment (NICE and BCSH guidelines) is loading shots 3xweek until symptoms stop improving (with a review at 3 months) then maintenance shots every other month - which still isn't enough for a lot of people. You could try writing to your GP and pointing out that there is a different protocol.

    unfortunately getting treatment more frequently than two monthly can be really difficult, not least because injectable B12 is only licenced for use in the UK at a frequency of 2 months - not because of any health concerns but a quirk of the way the licencing is done and the fact that it hasn't been worth any manufacturer applying for the licence to be changed.

    Even though you have an absorption problem (because the ileum is impaired) you may still be able to absorb very small quantities of B12 elsewhere in the gut so really high doses orally/sublinguals (doses 1000mcg+) may help but there is no guarantee on that - I find that nasal sprays work quite well as a supplementation form for me and some find that skin patches work well for them so it may be worth looking into another form of supplementation if you really can't get any joy from writing to your GP and asking for 2 monthly ... or 2 monthly still isn't enough.

    Frustrating that doctors are so fixated on treating conditions rather than patients and seem to feel that one size will always fit all - when its actually quite rare for things not to vary from individual to individual ... and with B12 things can vary a lot.

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