B12 and Folate levels

[headgirl]

Hi, I have been having B12 injections for around 5 years since diagnosis and thanks to the excellent advice on this forum I am now self-injecting every 3 weeks. ( My GP would only agree to every 8 weeks). Whilst taking blood for other medical issues, my GP has checked my B12 and Folate levels which have given the following results - B12 2000 and Folate 17.2. I am concerned that when I speak to her next week that she might stop further injections due to the high level. Any thoughts would be much appreciated. Thank you.

[wedgewood]

She might well do that if she is ignorant about P.A, as some doctors maintain that a result like yours is dangerously high. It would be if you were not supplementing with B12 . A high B12 reading can be dangerous in people who do NOT supplement with B12, You could look on the stichtingb12tekort.nl ( in Dutch !) B12 foundation for B12 deficiency . Your B12 result will always and must always be high . Scroll to bottom of the page and click on English articles and information.

You will find well-researched evidence , which you need . Print out the useful articles and use them as ammunition , as diplomatically as possible ( frail egos )

[headgirl in reply to wedgewood]

Thank you, I will be prepared!

[Cherylclaire Forum Support]

Once B12 injections have started, there really is no reason to check serum B12, as it will be high.

My B12 was checked as part of a set of blood tests a couple of hours after my injection - and was over 2000 ng/L as you would expect. Two months later it was checked again, and was down to 860 ng/L, still above "normal" range (197-771 ng/L). Two months after that, it was at over 2000 ng/L, just before my next injection. Yet by this time, I was much worse.

At the same time, my MMA was tested: it was over range. It continued to be over range for the next three years, despite frequent B12 injections (I gave up waiting for answers and started self injecting)- and then dropped back to comfortably within range, just as ferritin and folate also stabilised at a much improved level. I can only put this down to the frequent self-injecting and multivitamins and minerals. Bone density also seems to be improving just with prescribed vitamin D tablets alone now. I was found to have osteoporosis of the spine.

My NHS injections (by then, every 2 months) were eventually stopped by a GP (not my usual one) because he was alarmed about the fact that I was buying my own B12 and self injecting at a more frequent rate than that recommended. He wrote me a letter saying that my NHS injections would be reinstated only if I stopped self injecting and accepted a frequency that I knew would make me worse again. I couldn't do that.

At first, I was furious that he had done this without consulting my usual GP at all. Or me for that matter. Now I'm just relieved that I don't have to rely on the NHS for injections at all and that I have sufficient B12 supplies. Nothing has changed with my usual GP still checking my ferritin, folate, thyroid etc - and unfazed by high B12 results.

Wedgewood is right: high B12 in someone who is not supplementing can indicate serious problems. In those who do supplement, it is a waste of time and money to keep checking it since it is only measuring what has been put into your system.

MMA should not be raised after initial B12 deficiency has been addressed, as it binds to B12 - so should be down to well within normal range, certainly by the time loading dose has been administered. There can also be other causes for this: renal problems or small intestine bacterial overgrowth (SIBO) for example, but once these are eliminated as possibilities, a high MMA result is seen as a good second indicator of B12 deficiency if taken prior to initial B12 injection -or, where found to be still raised after injections, points to a functional B12 issue. A suspicion that this is the case might be a good reason to simultaneously check serum B12 after injections, but I can't think of another useful reason for retesting.

I hope your GP listens to you and looks at you (difficult right now)- and is aware of the difference that B12 is making to your health. So few do either.

[headgirl in reply to Cherylclaire]

Thank you, that's really helpful