Functional B12 deficiency?

[Rummie]

My daughter was found to be deficient in B12 4 years ago. She started shots of 1ml hydroxocobalamin every 3 to 4 weeks. After 3 years she decided she didn't need them anymore, so she stopped. After about a year she started to get symptoms of deficiency again. She has been getting shots every 3 to 4 weeks again since March and some of her symptoms subsided. Since this summer some of her symptoms have ramped up-more fatigue, weakness, heightened sensitivity of her nervous system, and digestive difficulties. Her last bloodwork showed a serum B12 of nearly 2000 and this was about 2 weeks after her last shot. Should the level in her blood be that high that far away from her last shot? Would that be indicative of functional deficiency? If so, does it require more frequent shots? Thank you for your time.

[Nackapan]

On b12 injections its coming to have a high reading .This does not indicate a functional deficiency

[Rummie in reply to Nackapan]

I know the levels will be high with injections, but just wondering if the B12 is getting into the cells, should there be that much floating around nearly 2 weeks after last injection? I feel that she needs to have more frequent injections, but she resists because she has insomnia for 2 or 3 nights after injection.

[Nackapan in reply to Rummie]

I think its common to have that high level.In my mind her frequency is working .

I've had the same sort of discussion with one of my daughters.

Only they know how they feel.

My daughter has Stuck with 10weekly

My mum 8 weekly .

I have them weekly .

After trying 2 weekly for just ovef a year

It's not recommended levels are done once on Injections.

Go by her symptoms .

It takes time .

As for reaching cell level it should do with that amount in her bloodstream.

If you have functional b12 deficiency.

The treatment is the same .

It's got that name as b12 levels before in jections .ard often 'in range'

But higher levels are needed to get it to the cells

[Hockey_player]

If she has pernicious anemia (and it sounds likely she does) she will need shots or high dose sublingual B12 (if that works for her) for the rest of her life. It is bad to allow the nervous system issues to fester. They are completely reversible if it does not get too bad, but if it is left too long, there may be permanent damage.

[Cherylclaire Forum Support]

Nearly 2000 ng/L, 2 weeks after an injection, does not seem unlikely.

There is no real reason to test B12 levels after injections have started. Medical guidelines don't advise testing once treatment has started.

Because B12 joins with methylmalonic acid (MMA) in order to transport to where it is needed (cells, tissue), a build-up in serum of both B12 and MMA would suggest a functional problem. If the link is not made, both will remain in the bloodstream - and so be ineffective in reducing B12 deficiency symptoms.

Once serum MMA is found to also be high, both renal problems and SIBO need to be ruled out as possible causes. The test for MMA is difficult to request from primary care level, as many local hospital laboratories are unable to provide this service. Renal problems can be ruled out easily by blood test, SIBO requires a breath test series - again, likely to be expensive as it takes 3-4 hours, and results entered onto a graph in conclusion.

MMA tests and SIBO tests are available on the NHS. My first MMA test was requested by my GP - and was refused twice. I had five after that, but these were requested by secondary care consultants, mainly haematologists. The SIBO test was also requested by a consultant haematologist.

I think that it would be better, as suggested, for your daughter to be led by return of symptoms, the aim being to pre-empt this return in order not to use deterioration as an indicator that an injection is necessary. For that, a daily diary or symptoms chart could prove invaluable. A search for patterns.

A list of symptoms might also be useful - I wrote one out, with a sentence explaining each one. A haematologist copied this for her records. How can anyone possibly help us if they don't understand how B12 deficiency can affect all aspects of life ?

It is really not just about being tired and needing a bit of a boost, is it ?

Wishing your daughter well.