I was diagnosed as probably having PA by a haematologist 4 years ago who said I should be treated with injections for life. (There is a family history, even though the IF tests and parietal cell tests didn't definitively show PA, and though I have gastric problems, they haven't been able to show that any is causing the B12 deficiency).
Initially I was given 3 monthly jabs by my old GP but eventually she agreed to 6 weekly jabs because I suffered from brain fog, fatigue, extreme anxiety and low mood in the last 6 weeks or so before the jab. This worked very well for me until I had to change practice and I had 3 years or so of stable health and anxiety was much better.
Unfortunately I had to change practice in Sept 2015, and, since then, have only had jabs every 9-10 weeks (they did a blood test when I arrived and said levels were good so I didn't need them more often...) In the last few weeks I have been feeling dreadful- really down and anxious and exhausted.
I have also had numbness down one side of my body - have been referred for MRI and to neurosurgeon, plus to a physio, and none of them found anything wrong. I wonder whether this can be linked to the B12 deficiency given that it's only down one side?
Anyway, my new GP eventually agreed to a jab yesterday (7 weeks from the last) and I do seem to be feeling a bit better so far, but she has said they don't generally give anyone jabs more then every 3 months. My latest blood test showed B12 was at 460 which she said was fine (I tried to tell her that the blood tests are not to be relied upon and also that it had dropped from 900, which was the result when I was feeling well, but she didn't seem to be listening). She suggests I go and see her "in 2 months" to discuss the way forward. Obviously, I don't want to leave it 2 months because (if she then does another blood test and waits for the result) it will then be 3 months in between jabs in any event.
What do people think- should I resign myself to 3 monthly jabs and take lozenges? Or should I try and see another GP at the practice soon (which runs the risk of putting their backs up because she said I should go and see her)? If I saw another GP I could perhaps try and have a jab 6 weeks in which I hope would mean I wouldn't need oral B12. The difficulty is that, if I start taking it, that may mean they'll never give me more frequent jabs..
Thanks very much!
Written by
ClaraJ
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Your new doctor really needs to learn to treat the symptoms, not the numbers.
Firstly, as you suffer from neurological symptoms your maintenance doses should be 8 weeks apart, not 12. This is according to the British National Formulary (your doc will have a copy). medicinescomplete.com/mc/bn...
My summary document includes excerpts from some scholarly articles (and links to those articles) that cover two important points - frankhollis.com/temp/Summar...
Testing serum levels of B12 once you've started supplementation is pointless.
Treatment should be based on symptoms if there is a discordance between those and the test results.
Download my summary and print it out. You may find it useful to download the BCSH guidelines and/or the BMJ article and give it to the doc.
You are experiencing what so many PA patients go through . In the end we are ground into the dust ,and give up .
Then we have to turn to DIY ! i.e . We self - inject . You are already experiencing neurological symptoms so you should act quickly , if they are to be reversed. So many of us have been forced down this path. If you decide on this, come back here for information . Also remember that you need good levels of folate which works in unison with B12 .Better still, take a good B vitamin complex . The IF test is not reliable . You can still have P.A. even if the antibodies don't show up in the test . (Scientific paper about this too )
460 result is NOT fine. Your doctor is not up to date with the guide lines which state that the symptoms are the most important indicators for PA /B12 deficiency .
Gasstric problems go hand in hand with PA . A gastroenterologist told me that PA patients have either low or no stomach acid (hypochlorhydria and achlorhydria ) This results in bad bacteria getting the upper hand in your stomach as the acid would get rid of them . It gave me stomach pain ,bloating ,belching and nauseous reflux.I was told that there was no treatment for it . But I found help with a water based probiotic called Symprove which helped enormously . Some people use hydrochloric acid betain with pepsin capsules to help digest protein . I didn't do this . Raw organic inpasteurised sauerkraut is full of great probiotics also and you can make this yourself . (online recipe)Other fermented vegs are also good (kimchi ) My tummy problems are gone now but I do still take a spoonful of organic sauerkraut every day . I don't know if this has helped you at all but I do hope so .. I wish you all the very best .
I get mine from a health food shop(don't bother with the tinned stuff that you can get in supermarkets )It's made by a company called Raw Health, but I know that there are other makes. It should be RAW,ORGANIC AND UNPASTEURISED It is certainly an acquired taste . You may not like it but do stick to it . I have just made myself some , using organic red cabbage and onion . I find this tastier ! Recipe online. It only took about 10 days to make and it will keep in the fridge for ages it must be eaten cold Heating it above 40 c destroys some of the probiotics
Regarding the methylcobalamin sub linguals there Is no harm in taking them( you do know that you cannot overdose on B12) They never helped me but I read that some members are helped by them or B12 nose spray . If lozenges and nosespray were really well absorbed , we would be prescribed them , wouldn't we , as it would be easier for the docs? Really glad to hear that your tummy is improving .I have actually read that the sauerkraut is the best remedy ! It contains a greater variety of probiotics than anything else ! All the best !
Thank you wedgewood I will order some now. I can eat anything if it's going to do me good. I have gone gluten free as well and that has really helped me. Thank you! X
Yes you're right ! .I didn't stop to think! But I always recommend that one can make it oneself, which makes it a lot cheaper. Also with home-made you can let it ferment to the degree of sourness that one likes. Longer fermentation--- more probiotics. Google for recipes.
I have just made my own, using red-cabbage with chopped onion and it's really good. I love my gin too, but I've never tried it in sauerkraut .As long as it doesn't kill off the probiotics! Thanks for all your input.Always worth reading.
It was when you mentioned adding juniper berries that I thought of adding some other botanicals - coriander seed, orange peel and angelica root - to make it taste more like gin.
Who knows if it'll work but, as a chemist, I feel impelled to give it a go.
You were so lucky with your first gp's - you must try to win your new gp around. It is never easy - but good advice from other posts here. Hang in there.
Yes, you're right, it was a shame I had to move in that respect. What I am not clear on is whether what the GP said to me the other day is a practice policy they all must follow or simply her own thinking on the issue. Thanks!
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Pernicious Anaemia
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