B12 started at 153, went to 635, now down to 339

[Dopey-Grumpy-Sleepy]

Is this a normal progression while receiving monthly injections? Initially I received loading doses of 7 daily injections, then 4 weekly. Testing after one month's treatment showed the B12 had risen to 635. Now, 6 months and 6 injections later, new testing shows the B12 has dropped to 339.

Although I've been having symptoms off and on for years, I began noticeably deteriorating physically and mentally a year ago. Fatigue has improved (except for a recent downturn) and I have had some limited neurological improvement since diagnosis & treatment 7 months ago. However, I've just recently started having tingling and numbness in my hands and feet. This new neurological symptom is scaring me; I feel like Rome is burning (or has nearly burnt down) while the doctors fiddle. Does the drop in B12 and the new neuropathy-like symptoms indicate that

additional neurological damage is being done? What, if anything can/should I do about it?

thanks,

Dopey, Grumpy & Sleepy (aka Jayne)

[Gambit62 Administrator]

Normally B12 is stored in the liver and released into the ileum in bile as it is needed so blood levels can be quite stable. However, if you have an absorption problem this mechanism becomes inefficient and basically doesn't work which means that you are living off the levels in your blood and levels will actually be quite unstable and don't really mean a lot - so you need to go by symptoms rather than test results as serum B12 really isn't a useful test anymore. It is only significant if the results come back low indicating that the mechanism that does most of the reducing of levels (not your cells using it but your kidneys filtering it out of your blood) is working too well and removing the injected B12 more quickly than the average - so you need more frequent injections.

You could try explaining this to your GP - though if they are fixated on test result telling them everything then it can be quite difficult to get through to them that there is so much variation with B12 from person to person that averages can't just be applied straight back to every individual. If they want the reassurance of another test result then I'd suggest looking at MMA or homocysteine - two 'waste' products that build up if your body doesn't have enough B12 to recycle them into useful building blocks. You may also want to check on your folate levels to ensure these are still adequate as that will also affect being able to use B12.

[Dopey-Grumpy-Sleepy in reply to Gambit62]

Thank you, Gambit. Folate is 17.3, up from 13.6 before treatment started, both in normal range. But I haven't been tested for the other two; thanks for that tip. I've learned here that once B12 injections begin, testing serum levels of B12 is somewhat pointless, but the drop in my numbers by nearly half got my attention.

Two questions about your response. You wrote:

(1) "......serum B12 ... is only significant if the results come back low indicating that the mechanism that does most of the reducing of levels (not your cells using it but your kidneys filtering it out of your blood) is working too well ... so you need more frequent injections." At 339, do my results fit your description of "low"?

(2) I prefer not to have to self-prescribe additional B12 injections if I can avoid it, although I'll certainly go that route if I have to. If the neurologist and family doctor can't get beyond numbers. would an endocrinologist (I have Hashimoto's but normal TSH) be the next logical choice of a doctor with more familiarity and interest in treating B12? Or is B12 an orphan that no specialty is well-informed about?

thanks again, D-G-S

[Gambit62 Administrator in reply to Dopey-Grumpy-Sleepy]

I'd be inclined to regard 339 as a low result for someone who is on maintenance doses

you can get lucky with specialists in any field but you can also get unlucky - though given the links with B12 deficiency in Hashimoto's an endo that specialises in Hashimoto's might be a good way to go - sorry not possible to be more specific.