My quick background: I was found to be B12 deficient in July 2016 with a level of 150 that had apparently been going on unnoticed for 2-3 years. (I take PPIs for gastritis and esophogitis, which may be the cause.) I've had loading doses of 7 daily injections followed by 4 weekly injections and now monthly injections for 5 months. I have seen some physical improvements, but they are unpredictable and grossly inadequate.
I frequently read on the forum mentions of pernicious anemia test results and other in-depth test results, but no doctor is mentioning further tests for me, especially since my B12 numbers have jumped to 630. My neurologist, who was at first horrified to learn that I'd had a B12 level of 150 for 3 years and who told me that he sees neurological damage at levels of 300, is now telling me that as long as my numbers are now above 300, I'm just fine! I am being treated as if "all's well that ends well" now that my numbers are up, even though my symptoms are barely changed! I feel that no one but me cares if there is permanent neurological damage or brain atrophy!
Perhaps I can blame it on my extreme brain fog, but I can't seem to understand how some of you have moved on from B12 testing to other, more revealing tests. Should I be receiving further tests, or am I lacking an indicator for those tests? Does this new level of 630 mean anything other than that my body is capable of absorbing some B12 from the injections? And if these once-monthly injections are having little to no noticeable physical or mental effect, does that send a message of its own? And should I start taking sublingual B12? I'm in the US, with good insurance thanks to Obamacare (which Mr. Trump vows to strip from us), but this process has not been cheap, and I can't afford to waste money on junky brands of supplements or on inappropriate dosages. Can anyone steer me toward a supplement available on, say, Amazon? (If indeed a supplement is appropriate, that isl) And if not, where might I turn? And speaking of where to turn, what specialty field is best equipped to understand and help with this problem? I feel like I'm banging my head on the doors of doctors who don't understand or don't care. If there is no hope of improvement, at the very least I want to know so that I can adapt to that reality and stop getting my heart broken by false hope and disappointment.
thanks for all the information and encouragement that you share,
(alias) dopey (✔) grumpy (✔) sleepy (✔)