Anyone had experience of low vitamin B12?

[MrsKCastle]

I had a whole set of blood tests done last week and strongly suspect that I have coeliac disease. That result hasn't come back yet, but most of the others are back. My calcium levels are slightly low, and B12 was at 148, with normal being >180.

Having googled B12 deficiency, it seems to be linked to lots of problems and sometimes needs to be treated with injections. Has anyone had this? Is it likely that I can sort it out with vitamin supplements? I'm also vegetarian, which may mean I get less in my diet.

I can’t remember my numbers....but I was very very tired with low b12 (asleep under the desk tired). Got an injection first time, then topped up with sublingual b12, melt it under the tongue, one a day.

Amazing difference. If I get a bit knackered I take the tablets again,

I have the injections every 12 weeks. My symptoms were bone aching tiredness and being unable to think straight. When I was diagnosed my level was 67, so very low. The injections go straight in to your system so if you are low due to being unable to absorb it, the injections would be better for you. Good luck with it all.

Thank you both. The tiredness definitely sounds familiar, as does not being able to think straight!

Mine was below a hundred. I had two weeks of a loading dose every other day then injections for life every 12 weeks.

Mine was at your level and I took a really really high dose b12 under my tongue twice a day with b complex and it helped x

Also if you like it, eat a ton of marmite on toast. Marmite is full of B vitamins and will keep you topped up if you're looking to eat something with it in.

They have a different scale in the US and mine was low 300s out of range up to 2000. Had the befuddled mind and tiredness. Had injections for 12 weeks weekly and got it up to 760, they stopped them and it’s dropped down to 460 in about 2mths. I’m not absorbing but for some reason they won’t do the injections (probably insurance). I ended up getting Patches that I change each day as I was getting ‘pilled’ out and if I’m not absorbing it, how can I from a pill! I seem to have more energy but really not sure if they work or not, have been meaning to google it

I’m not vegetarian and suffer with extremely low B12. I was 92 when I was tested.

I had my loading doses and started on a 12 week cycle but it wasn’t enough so I’m now on an 8 week cycle.

My understand is that if you are deficient due to diet then it’s possible to take the supplements. These don’t work for me in the slightest however.

It would also be worth checking your folate levels, as these need to be in range in order to take the B12 on board properly. I had to take a high dose of folic acid for 3 months when I was first diagnosed.

Hi OP

If it turns out that you do have Coeliac's, it probably means that you have trouble absorbing B12 (and other nutrients) through your gut. If the blood test for Coeliac's comes back negative it doesn't rule it out - if you have strong symptoms then you should be offered a biopsy.

If you eat a decent diet (including regular dairy and eggs) then it's unlikely that your B12 is caused by diet. You only need standard daily portions of these to reach the RDA.

There are various other tests they can do to try to get to the bottom of your low B12, but if the cause isn't dietary then you will probably need supplements for life - usually injections, but patches or sublingual lozenges work for some people.

B12 deficiency can cause loads of symptoms (including gastric ones) so it's sometimes hard to tell what's cause and what's effect.

Good luck. Check out the NICE guidelines for treating B12 deficiency as many doctors are ill-informed on this topic.

BI x

Hi OP I had B12 injections after I had DD1. I ached and hurt so much I couldn't get move out of bed for a week. Went to my doctor and I can't remember the exact levels but my B12 were worryingly low. I had intramuscular B12 injections for about a month and a half till they were up to acceptable levels (along with taking other vitamin supplements everyday). It felt a bit like someone hit me in the arm with a baseball bat but I felt the change to my aching and tiredness very quickly. Hope everything works out for you!

Hi OP, I just had my first b12 injection today. My levels were 130 but folate levels all ok and no anaemia so hopefully injections will work. I’ve been told to book a blood test for 6 mo the time to check again.

How quickly have people who have the injections started to feel more energetic? Any experiences?

My folate levels were normal, as were all the other tests except the calcium and slightly high cholesterol (but I don't suppose that is related). I guess I should start taking supplements straight away. I've got a doctor's appointment on monday, but don't know if the celiac test will be back by then, so might have to delay it.