How to correctly monitor/retest b12 with injection treatment?

[Raiinbow]

So after about 2 months of weekly IM b12 injections (that started with a one week loading dose time frame), I saw my dr to ask to test folate, b2, magnesium, and potassium. Just to make sure the dominos weren't falling on each other in terms of the vitamin dance that goes on with b12 treatment. Unbeknownst to me, she also decided to retest my b12 levels. I had just had a IM shot in the office, got the blood draw about an hour later. Of course my doctor's nurse called me today, saying that my b12 levels tested "far above normal" because they test serum levels. Now they're wanting to stop treatment.

I talked to the nurse over the phone and said that serum testing that close to a shot would present with a false elevated level. (I know that much.) That I was worried about stopping treatment if my body is still repairing my nervous system. I asked if the doctor would instead be willing to go on maintenance levels of one shot per month instead of once a week (I think once a month is what I read was a good time frame?). Waiting to hear back.

It's frustrating because my doctor has yet to seek the actual cause of my deficient b12. If it's an absorption issue obviously I would just be back tracking by stopping treatment, and that's the last thing I want when the health of my nervous system hangs in the balance. I already have enough chronic issues without that nonsense. (Plus a possibly dysfunctional autonomic nervous system. Long story short, I may very likely have POTS or another from of dysautonomia.)

Anyway, what is the proper protocol for motoring b12 levels during treatment? How long from my last injection (sub-q or IM) does the testing need to be? What tests should be run for accurate levels? I saw an article saying to advise serum B12, Active B12, MMA, and homocysteine. But apparently a lot of doctors don't know about these tests or how to interpret them. I tried reading more about that in journals, but my brain fog is too dense to wrap my head around all the scientific jargon speak.

Would really be appreciative of advice, explanations, direction, sources, etc. Thank you

[Gambit62 Administrator]

guidelines produced by BCSH

onlinelibrary.wiley.com/doi...

recommendation is that further testing isn't needed unless there is a reason to think that you are not complying with treatment (obviously not the case)

The result is meaningless given that it was an after after injection - it should have been off the scale at that point and I'd be worried if it wasn't - and that is just logic!

I would recommend that you get complete clarity on who 'they' is/are and speak to the doctor - and sounds as if that is what you intend.

If they want to see what levels are like after an injection then they only need to look at graphs in a study on retention of B12 measured by serum B12

[Raiinbow in reply to Gambit62]

I was astounded that no one realized that getting a serum retest right after an IM injection would give falsely elevated levels. The nurse was congratulating me that my b12 deficiency was corrected after 2 months. .. :/

It seems like this doctor wants a test or clinical guideline on when to end treatment. In all the articles I've read it talks about diagnosis and starting treatment, but nothing about what to do after that. How to tell when levels reach normal range, since apparently you can't test during treatment? How to decide when treatment should end. I just don't want the rug pulled out from under me when my body is very likely still healing.

[Bluebears2 in reply to Gambit62]

100 percent agree

[fbirder]

There is no point at all in testing any of those things once you've started injecting.

If the injections are not resulting in an improvement in symptoms then it may be worth getting MMA and hCys testing just in case there is a problem with the B12 getting to the places where it's meant to be.

[gingerbear644]

According to NHS, does not make sense testing after starting treatment since the blood levels will be elevated. It takes some time for the body to heal so treatment cannot be stopped.

aafp.org/afp/2017/0915/p384...

They are to stop loading doses ONLY when all symptoms disappear. Do all the research or if u want I can put all I have here and take it to your doctor. You have to educate them since they don't know.

[Raiinbow in reply to gingerbear644]

I'd be grateful for any info you have. I'm not sure what I'm looking for besides anything for length of treatment when someone presented with neurological symptoms, and how to determine when to cease treatment. Like in this link it says, to continue treating "until the deficiency is corrected and symptoms resolve". How do you know when the deficiency is corrected if you can't test the levels while on treatment?

All the articles I've read so far talk about diagnosis and treatment, but really nothing about what to do from there. Like when to cease treatment, or even tell if that's appropriate and when. I can't even find a solid guideline on dosage of injections and how often to give them. Every article is different. So I don't know what I should be asking for, for frequency of injections (dosage of 1,000 mcg) if I'm still symptomatic. I was doing once a week.

My worst neurological symptom (itching/fuzzy mouth sensations) is still present- much lessened, but still present- and I've had an uptick in nerve pain (apparently due to the nerve repair going on). So I can use that for now at least as an example that my body is still likely healing. But clearly this doctor seems to want some kind of test or other clinical guideline to follow on when to stop treatment, since she was so eager to pull it when she thought she was doing the right and accurate thing by re-testing serum levels.

Thank you for your time and help. I'm going through a extremely rough time right now with other aspects of my health, and it's much appreciated for you to put in the mental work in helping me with this.

[Gambit62 Administrator in reply to gingerbear644]

just to point out that the AAFP is actually american, though if that is the article I think it is, then it does refer to the BCSH standards - which are linked in my original response.

[Gambit62 Administrator]

stopping treatment:

if the problem is dietary then the treatment is to correct the dietary deficiency, eg with oral doses of around 50mcg per day x2, and then use of supplements to make sure that the diet isn't deficient

if you have an absorption problem that is treatable, eg a h pylori infection or tapeworm infection, then, in theory, you could stop treatment after the problem has been resolved.

If the absorption problem isn't treatable, eg PA, surgery affecting the ileum (eg gastric band), or it can't be identified then treatment should be for life.