B12, pregnancy and autism risk

[Roo32]

Hello

I'm currently treated with b12 injections every two months and have been taking a bcomplex vitamin almost daily for the last year or so on top. This has allowed me to manage some fairly unpredictable digestive issues which thankfully now seem to be under control and may even be down to b6 not b12.

I am now beginning to think about trying to conceive, but just recently I came across the 2016 research suggesting that very high levels of b12 in pregnant women may significantly increase the risk of autism in their children. I am now really concerned as I know that although not representative of effective treatment, most of us (and certainly I) have very high blood levels of b12 even after the first treatment dose injection. I also know that it can take many years for this to reduce and that I cannot reasonably wait that long to etc (I'm 34).

Is anyone able to offer any advice in this area, such as experience of pregnancy whilst managing b12 deficiency, or can advise of a doctor who they would recommend to speak to about this. I am interested now to see a private doctor about this.

Many thanks

D

[Gambit62 Administrator]

Are you having injections because you have an absorption problem - if so discontinuing could make conception more difficult and could result in birth defects.A higher risk means that there is a correlation between high B12 and levels of autism. It does not establish a causal link - so the cause could be something entirely different.

I suggest that you discuss with your GP but on the whole I am inclined to think that the risks associated with not continuing with injections (with established causal mechanisms) are going to outweigh the risks of discontinuing.

[Roo32]

Thank you for your reply. The research suggests a U shaped correlation, and yes it doesn't actually make a claim as such. However the findings present a hypothesis.

My concern is, no one is interested are they? It's just this enormous area of unexplored research. If we are lucky we are treated in such a way that is successful enough but no one much cares beyond that. So if in order to safely conceive children we would be best to have smaller injections more frequently for example, no one is exploring that.

In any case it has crossed my mind that if we just were able to somehow gather data on how many mothers who were treated with b12 injections during pregnancy subsequently had children diagnosed with ASD and compared it with the same number in the general population we might have some sense of the validity. It seems like it wouldn't be such a hard thing to test and yet no one is doing such research.

[Sammyo23 in reply to Roo32]

It's why there's always so many awareness campaigns for rare conditions. B12 deficiency can majorly affect your life when you have it, but we're invisible to the rest of the world.

[VellBlue]

This is pure speculation from my side, but since low B12 in babies is related to ASD I wonder whether it's the antibodies to transcobalamin which some people get after B12 injections which then causes a functional deficiency in the child later.

Having B12 injections causes some people to produce antibodies to transcobalamin. If you have such antibodies, it may be that your baby also ends up with the same antibodies (I don't know for sure) and then, because of that, has more of a tendency to become functionally deficient after birth. This is pure speculation from me, there may well be other reasons, and I also don't know what affects the amount of transcobalamin antibodies in the blood and whether they can go away. So even if that is the reason, it's not really any help!😊🌼 As Sammyo says, nobody is researching this...

[AmHW]

I know it’s can be worrying, but the risk of autism is still really really tiny, and many other factors could also cause autism… they still don’t really know. Anyway I can only give you my experience, I have a 12mo, she’s developing completely normally. I had b12 injections throughout my pregnancy as normal (3 monthly).

Some women do also develop b12 deficiencies because of pregnancy, and it’s treated with loading doses etc.

Every medicine comes with risks, and even if your child did develop autism, I don’t think you’d ever be able to say what specifically caused it. Easier said than done I know, but try not to let worry about it consume you. Many many people will have had b12 during pregnancy and only a teeny tiny minority will have babies which then develop autism.

[Gen89]

I don’t know anything about b12 injections and pregnancy. But you say you think it will take years for your b12 levels to go down once you stop injections. I’m not sure that is true as I was only at 500 a few months after having six injections eod for two weeks and I was only borderline deficient to start with. My GP was a bit surprised but it shows it does vary. If you wanted to stop injections then you could have a blood test to see what your b12 levels are. As others have said being low in b12 could cause other problems during pregnancy. I feel for you, as you say it’s a greatly under researched area. I hope you find a dr who can help.

[Roo32]

Thank you all. I should clarify by saying that I also feel embarrassed to be so worried about this. Autistic children are wonderful and precious like all children. I suppose my fear is more focussed around struggling to bond with a baby for whatever reason, and it’s manifesting with this focus right now. I’m not not an anxious person so maybe this is partly related to that, but how I wish for a medical professional with a real sense of interest rather than the dismissive attitude that I mostly encounter.

[Jilly5]

Can you share the link to this research please?Many thanks.

[Roo32]

ncbi.nlm.nih.gov/pmc/articl...