Confusion rules! :-(

[Moomin8]

I have RA but also a low B12. The doctor has prescribed 50mcg cyanocobalamin daily via a phone call, without discussing my symptoms. This didn't seem enough so I went back to discuss my symtoms. His reaction was to suggest I have anxiety problems ! Ermmm...isn't that a low b12 symtom?? I respect my doctor and so declined the medication offered for anxiety politely, and left. I researched and found Solgar Sublingual Methylcobalamin 1000mcg which I subsiquently bought from town in Holland and Barrett. I took 1 a day for about a week- some symptoms seemed to be improving. Feeling guilty I took them into my chemist (who is great!) to ask his opinion. He said that as these come under a food supliment and not medical , there is nothing to ensure that what is in the bottle is a) Methylcobalamin b) containing as much as it says c) what it might be mixed with! He explained about a colleague who looked into something similar which, out of nearly 50 different brands, none of them contained what they were supposed too!!

Confusion is...I know the 50mcg is not going to touch my symptoms but 1000mcg of 'who knows what!' might not either. I'm not due another b12 blood test until May and I'm not at my rheumatologist until April.

[Gambit62 Administrator]

Supplementing is going to skew the results of the next B12 test.

The only form of b12 that is covered by the rules regarding medicines in the UK is injectable B12 and this is only because it is injectable. All other formats are regarded as vitamin supplements. However, these will still be covered by the trade descriptions act so if it isn't what it says on the packet the retailer will be liable to prosecution.

Things are going to get more difficult if you are sourcing over the internet as it is more difficult to regulate that but you should be okay if you are buying from a high-street retailer. If you have any doubts then take it to your local retail standards and ask them to check it.

However, the 1000mcg is definitely going to affect the next blood test if you take it so if you have an absorption problem that you want to get identified using it is going to scupper that.

Some people are okay with high dose oral and if you noticed an improvement in symptoms then sounds like you could be one of them - but it doesn't work for everyone and it obviously isn't as efficient as injections would be ... but if you are comfortable continuing to treat yourself .... though you probably could source similar a lot cheaper from a reputable on-line supplier.

[Moomin8 in reply to Gambit62]

Hi- thanks for your reply. May I ask: what's your opinion of my taking 50mcg cyanocobalamin daily (prescribed by gp) plus 1000mcg methylcobalamin daily (bought in Holland and Barratt by me)? That way I appease the doc and hopefully start feeling human again?? Btw- still on 10mg methotrexate plus 5mg folic acid weekly for RA .

[Gambit62 Administrator in reply to Moomin8]

You can't overdose on B12 so that isn't an issue.

1000mcg is theoretically enough to overcome a B12 deficiency caused by an absorption problem and I'm guessing that you aren't vegan so that's the most likely cause. 99% of B12 is absorbed in the ileum so if you are taking 100 x RDA in theory enough can get through - but its slow and not very efficient.

Was the GP prescribing because he thought your problem was down to diet? 50mcg is okay if you are sure it is dietary but is totally inadequate if it is an absorption problem.

Good that you are on the folic acid with methotrexate as you need it to counter the effects of methotrexate. The downside though is that it will mask macrocytosis which, whilst not always the first sign of a B12 deficiency - is often present [wasn't for me] so can delay picking up a B12 deficiency, ie you may have been deficient for a long time.

nejm.org/doi/full/10.1056/N...

You could try going back to the doctor and educating him about B12 but from the rest of the post it sounds as if you have had enough of doing that. Personally I'd go for using the high dose oral if it is having an effect at the moment and if you feel you want to try more than 1000mcg then there's no reason not to. I probably take somewhere closer to 10000mcg a day in order to feel like a human being and have a life.

[Moomin8 in reply to Gambit62]

Thanks- it's so hard knowing what to do and I'm against self-medicating generally.