Follow up to gp stopping b12 injections

[Irismay]

Hi again - I'm not sure how you follow up initial posts but here we go. My GP stopped b12 injections about 15 months ago as level was >2000. Recently started feeling awful so had more blood tests last week. The only out of range results were as follows: total white blood cell count 3.9 (range is 4.0 to 11.00 at my surgery so only just below normal) - neutrophil count 1.9 (range 2.0 to 7.5) so again only just below range - b12 level 1600 (range 200 to 960). I have a follow up appointment with gp in 3 weeks but receptionist said I might want to cancel this as the GP has marked my results as "No further action required". I will keep my appointment as I'm still feeling horrible & based on the links & help I've had from people on this site I think I may have a functional b12 deficiency. Do you think this could be right? Thanks so much xx

[fbirder]

A functional deficiency is possible. Not common, but not unknown.

An MMA or hCys test will show if B12 is getting into the cells.

[Irismay in reply to fbirder]

Oh thank you for that, I will take this info to gp & see if this is possible. Thank you for your help. Best wishes.

[fbirder in reply to Irismay]

You may find this helpful - pn.bmj.com/content/9/1/37.s...

Good luck.

[Irismay in reply to fbirder]

Thank you so much for taking time out to help, I appreciate it. Best wishes

[MrBrown7438]

Hi

I had much the same from a GP when I changed surgery. I was told by a very stressed doctor that my b12 deficiency was not enough to warrant any further action, I had been on b12 tablets for a year at that stage, and she simply struck them off the prescription, after a short while my health slumped down hill, I made an appointment to see another doctor in order to assess my medication, I was sent for blood tests again, after a day I was called by the surgery and they told me to see the doctor next day, I went to see her, and she told me that the count was low and I needed medication, thats when we both agreed on the injections, only after she had read my notes and could see that I had a stomach ulcer, this had been diagnosed in a Gastroscopy earleir that year, the stomach ulcer was stopping my stomach absorbing b12, and the medication for the ulcer was acting against the b12 tablets, this meant it had to be bypassed so oral medication was useless, I have had all my loading injections now, and waiting for a blood test to see how the red blood cell count is, when this is assessed then the correct dosage and interval periods can be set up.

in reality It was my persistence with the surgery that got me near to where I wanted to be with this, I feel full of energy, and I am being told by people who know me that My demeanor has changed, and its like having a new lease of life, I have not been in any anaemia troughs only on peaks.

[Irismay in reply to MrBrown7438]

Hi - wow you had to go through a lot to get to where you are now & I wish you continued good health. My GP won t reinstate my injections because my level is way above range but all my symptoms and more have slowly returned. I am due to see a gastroenterologist this Friday due to some tummy issues & I might take my latest blood test results for him to look at but he probably won t be interested either! All the best & thanks for sharing your story.

[Linda730 in reply to Irismay]

Irismay, once you have shots, blood work is going to be high and is therefore worthless for diagnosis. In other words, you still need your shots and will continue to fill awful until they are started up again. I know there have been many posts about the rules in the UK and blood tests for b12 levels are not supposed to be done once shots have begun.

I'm in the US and I had the same issue, with 2 doctors in a row freaking out over my level over 2000 and not giving me a prescription, so that was when I started buying my own b12 for self-injections on my schedule, which is now 2x a week (with cyanocobalamin, which is needed more often than what you probably got).

You need to get back on shots, but I believe it may take some convincing the doctor. Hopefully others will reply, with links to the correct documents for you to reference.

Don't let it wait, though. The longer you're off your shots, the longer it will take to recover and the greater the chance of some damage becoming permanent. Besides, you shouldn't be feeling awful - not when b12 is so accessible and harmless.

[Irismay in reply to Linda730]

Thank you Linda730 for your advice. I have had some great help on this site & I am armed with some great information if I can get it through to my GP in a couple of weeks time. I really don't think she'll be too imoressed though & she doesn't really listen. when I've tried to talk to her about reinstating the shots she says they're being phased out & I should take oral supplements instead. This time though I am a bit better informed thanks to the helpful people out there. Fingers crossed & I wish you continued good health.

[Irismay in reply to MrBrown7438]

As a postscript - I will be taking the advice of fbirder too & asking if I could have the MMA & hcys tests. Regards