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Can levels DROP even with B12 injections?

annagaia06 profile image
14 Replies

Hi everyone,

Is this something anybody has dealt with and may know why it's happening? I've been getting monthly injections for B12 since 2017 or so. I stopped for a few months between then and now, but still... this is what my levels have been:

July 2017: levels were 148 pmol/L

July 2017: Monthly injections started (CYANOCOBALAMIN 1000 ug/ml)

October 2017: levels were 900-ish pmol/L

October 2017: Injections stopped

September 2019: levels were 263 pmol/L

September 2019: Monthly injections started (METHYLCOBALAMIN)

December 2019: levels were 1150 pmol/L

February 2020: Injections stopped

May 2020: Feeling ill again, hematologist said to resume monthly injections for life (without testing my levels based on previous levels)

(2 monthly injections of CYANOCOBALAMIN 1000 ug/ml)

July 2020: levels were 725 pmol/L

(2 monthly injections of CYANOCOBALAMIN 1000 ug/ml)

November 2020: levels were 564 pmol/L

Why is it that my levels are DROPPING while getting monthly injections? They increased for a bit, and then started decreasing again... but I haven't stopped the monthly injections since June 2020. Can anyone shed light on this? I wondered if it was Methylcobalamin versus Cyanocobalamin, but doesn’t seem to make a difference when looking at my body’s response above.

Thanks a lot,

Anna


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14 Replies
Nackapan profile image
Nackapan

Do you think you need a higher frequency. Are your symptoms coming back before a month?

Once on regular b12 I jections testing levels isnt necessary.

Go by your symptoms

annagaia06 profile image
annagaia06 in reply to Nackapan

But clearly, the testing is revealing something odd, right? So maybe testing is good until we figure out why it's not keeping my levels up? I definitely feel tired and foggy with some shortness of breath a week before my injection is due, though this month wasn't as bad as previous months!

Nackapan profile image
Nackapan in reply to annagaia06

Sounds like your symptoms are telling you your levels are falling. Perhaus you need a 3 weekly injection. ??

They dont mean much once on injections . It's well documented.

annagaia06 profile image
annagaia06 in reply to Nackapan

I know the levels aren't realistic in the sense that they can be too high once on injections, but if the testing shows levels are dropping, that's not a false reading right? I'm wondering if this means I need more frequent injections as you said...

Foggyme profile image
FoggymeAdministrator in reply to annagaia06

Annagaia06.

This pattern of B12 rising / falling when on injections is what would be expected.

B12 injections raises levels, levels then fall (a different rates for different individuals), then rise again once another injections has been given.

Testing B12 levels following injections won't tell you anything - just demonstrate the pattern you've already identified.

As Nackapan says, go by symptoms. If symptoms return before next injection, then you need more frequent injections. The ultimate aim is to space frequency of injections so you have them before symptoms return.

annagaia06 profile image
annagaia06 in reply to Foggyme

So I guess it's not unusual to increase when first getting treated, and then decrease while still continuing treatment? Sounds so odd to me! haha.

Foggyme profile image
FoggymeAdministrator in reply to annagaia06

No. Not odd. It’s like a good cuppa...fill it up, drink some, then fill again to replace what’s been drunk (or in the case of B12, excreted via the kidneys and/or used by the body).

annagaia06 profile image
annagaia06 in reply to Foggyme

Thanks for this info and feedback. It's challenging to find the right balance, especially with chronically low ferritin levels as well. Hard to distinguish which issue is causing which problem, but it'll take the time it needs. Thank you :)

FlipperTD profile image
FlipperTD in reply to annagaia06

Scientist, not medic...

You mention 'chronically low ferritin levels'. Maybe this is part of your problem, and that might be a good place to start. Don't however start experimenting with iron therapies without medical supervision. Iron is horribly toxic in excess.

As others have said there's little [as in 'no'] point in repeated testing of B12 levels once you're on injections. They confuse the best of us, and it's not unknown for someone to get their injections stopped simply because their serum B12 is 'normal' or 'raised'. If someone can't absorb from their diet, then injections are the usual way forward.

Good luck!

Cherylclaire profile image
CherylclaireForum Support in reply to Foggyme

Good cuppa, Foggyme ? Lovely analogy.

Hi, the same happened to me in the beginning even on monthly injections. My Doctor in India where I was living at the time was quite surprised. She put me on bi-weekly injections. Five years on, I inject myself weekly as I run long distances and have honestly never felt better.

fbirder profile image
fbirder

The serum B12 test is neither precise, nor accurate. Results from testing the same sample twice can vary by more than 10%. So a true level of 640 may give readings above 725 and below 576.

NorthallertonBob profile image
NorthallertonBob

Probably because your body is NOT naturally converting food intake into B12. Logic seems to indicate: An injection gives you the vitamin B12; your body uses B12, your level drops ... An Injection puts more B12 into your body ..... you use up B12, your level drops .... etc etc etc. Pernicious Anaemia is a condition where the stomach will not absorb B12 from food or tablets into the blood .... one needs to have the B12 injected into a muscle.

Elf3 profile image
Elf3

Drinking alcohol can impact absorption..!!

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