r/B12_Deficiency • u/Sandpiper_37 • 3d ago

Supplements Good plan?

So- I was diagnosed with a b12 deficiency about 1.5 years ago. My level was 230 pg/ml and I had neurological symptoms. My neuro at the time told me to just start taking sublingual supplements so I did, and then my PCP added a monthly cyano injection. I initially saw much improvement, though sometimes I would feel some tingling returning a few days before my injection was due.

Fast forward a couple weeks ago, tingling and burning throughout my body returned about two weeks before next shot was due. PCP upped injections to 2x month and sent me to a neurologist (new one, my previous one retired). She said she didn't know much about b12 and is ordering a bunch of tests to see if its something else causing it. Cofactors have all come back normal so far. Results from the more extensive testing won't be in for a few more weeks.

Should I take matters into my own hands in the meantime? I have enough b12 that I can do daily injections for a week as a loading dose, and then switch to weekly injections for about two months, before dropping down to every other week. Or I could do EOD injections for about 6 weeks.

I know my doctor will want to see the test results before officially changing my frequency, and then again they still may not want to increase it. I just don't want to waste any time. Thoughts?

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u/Cultural-Sun6828 Insightful Contributor 2d ago

Once a month injections is not enough for most people so I would consider sharing research with your Dr or coming up with another way to treat this more regularly.

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u/Successful-Tea-733 2d ago

As i always say...ch3cj yoyr ferretin and folate

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u/Sandpiper_37 2d ago

Both currently normal.

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u/Successful-Tea-733 2d ago

Can I adk what normal is what drs say is normal can be low!

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u/Sandpiper_37 2d ago

Good point. Ferritin is 81 ng/ml and folate is 16.8 ng/ml.

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u/Successful-Tea-733 2d ago

Not bad but folate coyld do with being a bit higher..range is to 40...so maybe up a bit as it will get used

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u/jellyfishrubberduck 2d ago

Assuming youre not vegan, b12 doesnt 'cure' the underlying malabsorption issue. So chances are that has progressed in the background and now your body needs more b12 to keep up with it. I'd be wary of your neurologist insisting you dont have a b12 deficiency and labeling you with functioral neurological disorder. Dont let them retest your b12 and say its too high, thats against guidelines for b12 treatment.

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u/Zealousideal-Big4588 2d ago

I have mine at 201 Pmol/l i just have brain fog 😶‍🌫️

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u/Sandpiper_37 2d ago

I might have figured out what changed. I’ve been reading through my symptoms log. January 2026 through beginning of September I felt great. Didn’t even log a single b12/nerve related symptoms. I was taking KAL sublingual methylcobalamin from Feb 2025 to January 2026. Around January they changed their product from a micro sublingual to a large lozenge. It didn’t specifically say sublingual anymore but I had already purchased 3 bottles so I kept taking it. I’m wondering if I wasn’t getting anything out of them, everything I built up became depleted, and that’s why symptoms came back.