I've posted before re my high b12 level & had some really helpful replies but just couldn't get to the bottom of it & constantly had the shutters pulled down by my gp surgery. Brief background - diagnosed with low b12 (139) - no pa diagnosis. Gp started me on b12 injections for about 5 years then suddenly pulled me off them over 2 years ago because he said my level was too high 🙄. 2 years down the line started having neuro symptoms muscle twitches lethargy, very depressed, pins & needles & this coincided with very bad heartburn to which I was referred to gastro. Had some blood tests & b12 came back high 1900 without supplements of any sorts. Asked gp for b12 injections to be reinstated after the help i had on this forum & took various paperwork which stated that b12 should be for life & even with a high b12 level i could still be deficient due to my body not absorbing it properly (it's a complicated process & I cant even begin to explain it but it can & does happen!). Gp said "no" "no" & "no" again how dare you keep asking for injections when your level is through the roof!
One visit I saw a locum gp & she took a bit of interest in my high b12 & recommended I have a "special " blood test to see if I was absorbing b12 properly 👍she called it "macro b12" (b12 complexed to immunoglobulin) apparently! I had the blood test & it was sent to Consultant Chemical Pathologist). I heard nothing for a month so I phoned my surgery who couldn't find any results on the system so I made a telephone appt with my gp who never phoned me at the allotted time but a week later. Almost accusatory she told me the blood test was normal & i couldn't have the b12 injections reinstated & please stop asking. Oh & would i like some antidepressants?
Meanwhile I was having gastro tests scans etc to get to the bottom of the heartburn. Nothing really turned up apart from esophagitis & a strange condition called pancreas divisum. I have no idea whether this affects absorption of b12 as I have yet to look into it. Anyway, 6 weeks ago I had my follow up appointment with the gastro & I mentioned how awful I was feeling & showed him my twitching muscles!
He said he would have a word with the Consultant Chemical Pathologist & let me know what he says. I went away & thought nothing of it. 2 weeks later I was called to my surgery & told my b12 injections needed to be reinstated straight away. I had a copy letter from my gastro who told my gp he had spoken to the CC Pathologist & he had diagnosed me with macro b12 earlier in the year!! My gp had lied to me & I dont know why.
Sorry to bang on but high b12ers dont give up - there is always a reason for high levels- some quite serious and they must always be investigated.