Active B12

[nightingale-56]

I know not to take notice of high readings for serum B12, but does the same apply to an Active B12 blood test. Is this useless to do after a diagnosis of PA just going by symptoms? grateful for any information.

[Nackapan]

I thought with both you need a 3 month gap after a B12 injection. May be wrong. Since I've started on b12 injections I've never had that gap so go by symptoms alone. I've been tempted to have an active b12 blood test as is more accurate. Be good for a baseline. Not had one because of frequency of injections.

[nightingale-56 in reply to Nackapan]

The Active B12 was part of a larger range of tests (all good apart from Cholesterol and GFR - neither drastic) and I had forgotten it was for Active B12. I have been doing every other day injection after GP would only give 1 every 8 weeks. Diagnosed by symptoms at Hospital. Also started NDT for hypothyroidism in February 2019, which has improved my blood levels, so it could be more to do with this.

[Nackapan in reply to nightingale-56]

Could be. So we're you told active b12 would be accurate as on every other day Injections? I thought it would come out high on that frequency

[nightingale-56 in reply to Nackapan]

No I was not told that it would be accurate. I have had to find all information from this very helpful site. I really have not beengiven any information at all from GP. I was diagnosed at A&E going by symptoms (also bad chest infection present at time), and told to see GP about injections. Was given loading doses at end of February and then was offered one every 8 weeks. By May I had been si more frequently until July when I started every other day.

[Gambit62 Administrator]

both active and serum B12 are going to pick up the effect of the B12 from injections for months after an injection - one reason for going by injections rather than using either serum or active B12 to manage a B12 deficiency after injections have started.

[nightingale-56 in reply to Gambit62]

Thank you for this information Gambit62 . I rather thought that would be the case. the tinnitus had almost gone and when I have left off the injections for a couple of days, it begins to return, so will carry on with every other day injecting.

[pvanderaa]

If you’re on injections, expect it to be high.

I found that, in trying to wait to get another test, all my symptoms started coming back and I couldn’t stand waiting.

I’ve also found that if the test results aren’t >1500 pg/ml my neurological symptoms return fairly quickly.

Are you taking folic acid?

[nightingale-56 in reply to pvanderaa]

I have methylfolate in the Lamberts B50 B-Complex - 400 ug (not got correct symbol). Is this enough please pvanderaa ?

[fbirder in reply to nightingale-56]

400 mcg of methylfolate should be plenty.

[pvanderaa in reply to nightingale-56]

400 mcg is typically the minimum.

It sounded like you were keeping a logbook to track your symptoms. If you do, you might try higher amounts of folic acid and monitor your symptoms.

Don’t take more than 5000 mcg. Add a 400 or 800 mcg OTC supplement every two weeks and see if things get worse or better or don’t change at all.

I feel I need 4800 mcg to keep my neurological symptoms at bay but when I initially tried 5 mg, I had a whole lot of new symptoms that were concerning like thumping in my ears. So I had to stop.

I found it was a balance between B12 and folic acid. When I finally got enough B12, I could handle the higher amount of Folic acid and my symptoms started to improve. But not from the B12 alone.

Repair of neurological damage is extremely slow so use your logbook to assess a severity score (of your own choosing) to each symptom. Treat the jab as day zero each cycle and reset the day count in the logbook. Compare results from the same day each cycle to eliminate the effects of the roller coaster ride day to day.

[nightingale-56 in reply to pvanderaa]

I was not keeping a logbook, but have just had bloods done and my serum folate is 16.98 (> 3.89 - no upper limit, but believe it is about 20). My symptoms have definitely improved. I am not quite sure by what you mean by each cycle? Could you explain please.

[fbirder in reply to nightingale-56]

Folate of about 17 ng/mL should be fine. That's what mine is and I take 1000 mcg a day of methylfolate.

[pvanderaa in reply to nightingale-56]

Cycle = between injections.

Doesn’t really apply if you’re injecting weekly or more frequently.

[nightingale-56 in reply to pvanderaa]

I thought that was what youmeant,but was not sure, as I am si every other day.