Questions about B12 supplements

[Ktululady]

Hi, I have all the B12 deficiency symptoms but my doctors said blood results were fine, I didn't ask what the levels were at the time but I will next time as I now know more about it.

I told my doctor the supplements seemed to help and she said to keep taking them if they helped. Since then I have experimented with different ones with varying degrees of success.

The B12 tablets worked really well for the first week, I had loads of energy and I was really hungry, then gradually they stopped working so I stopped taking them. Then I started again and then same thing happened.

I tried sub-lingual liquid which worked for about three days, then stopped working.

Then three days ago I tried sub-lingual tablets with folic acid and B6 which don't seem to be doing anything.

I don't understand why they start working then stop. Am I right in assuming that if I wasn't B12 deficient they wouldn't affect me at all?

Also, if I need more blood tests I would like to have them without any supplemented B12 in my system, so how long would it take for it to get out of my system completely?

I hope this makes sense as I am quite new to this, having only just realised this may be my problem I am now doing my own research.

Thanks

[Ktululady]

Also....should I feel the effect of these supplements pretty soon after taking them or do some of them take time to build up in the body?

[Gambit62 Administrator in reply to Ktululady]

What strength are the tablets that you are using?

B12 deficiency happens because something goes wrong with the absorption process. Most B12 is absorbed through the ileum and there are a large number of things that can go wrong there. !% is absorbed elsewhere so it is sometimes possible to flood the gut with B12 and have enough absorbed to make you feel a bit better.

Do you know what your folate levels are like? The body uses B12 and folate together and if you suddenly start processing B12 it may deplete your folate levels quickly, though that shouldn't have been a factor in the supplement that included B6 and B9.

The idea behind sublingual is that the B12 is absorbed through membranes in your mouth - but it doesn't work for everyone.

Having supplemented will have skewed the results on test if you had supplemented before the test - you need to stop for at least 3 months - probably 6 if you want to get a proper reading.

Is it that you go back to feeling lousy after 3 days or is it that the improvement stops after 3 days?

It may be that you have an autoimmune response once your B12 levels in your blood start to get high which means that your body produces anti-bodies to TC11 - the form that transports B12 to your cells for them to use. If so treating is likely to be tricky - most effective way seems to be very high doses that mean there is so much B12 in your system that the body can't produce enough antibodies to stop it all getting through - ie you could try higher doses and see what that does once you hit the brick wall.

Another possibility might be that at the point where you thing the B12 stops having an effect it is actually starting to repair things that you haven't really registered as being wrong so you aren't consciously noticing any effects but it is still working.

[Ktululady in reply to Gambit62]

Thanks for replying.

The supplements are 5000mcg.

I thought it might be an absorption problem as I am lactose intolerant and I read that can affect absorption.

After taking supplements for a few days I start to feel bad again, like I did before I started them.

My doctor said I have a lot of anti-bodies and seem to have some sort of auto-immune problem but she didn't know what it was as all the other blood tests were within the normal range (I had been supplementing B12 but she said it wouldn't affect the results).

She is very keen to help so I will go back when I have researched as much as I can.

[Gambit62 Administrator in reply to Ktululady]

You need to find out what antibodies your GP was referring to - could be any one of hundreds and would depend on what blood tests she was looking at. B12 supplementation will have effected test results for B12 in serum, active B12, IFA (an antibody test for intrinsic factor) and PCA (parietal cell antibodies) - later two are antibodies that are involved in Pernicious anaemia in the strict sense.

[Ktululady in reply to Gambit62]

Thanks for your reply, I will make an appointment and ask my doctor. This is all very confusing but I am not prepared to give up and put up with it until I have researched everything and started to understand it and i can tell my doctor what I have found out.

[Allyson1]

Hello, are you feeling like your old problems are returning after 5 days, or are you developing side effects from the supplements? B12 is pretty safe, but some people do experience side effects. Is it the same type of B12 each time? Different people tolerate different types. I only ask this because this was the case for me. I had a few good days on 5000 mcg methylcobalamin to start with but then quickly developed some pretty severe side effects. I am not definitely saying this is the case for you. Gambit's suggestion about antibodies to TCII sounds like it might be worth looking into for you.

One thing I would advise is to be cautious supplementing B6 experimentally- this one can actually cause nerve damage itself at too high doses.

[Ktululady in reply to Allyson1]

I don't think it's side effects, it's just the usual symptoms returning. Thanks for the advice about the B6, I'll check with my doctor next time I see her.