Sticky Blood-Hughes Syndrome Support
8,151 members8,379 posts

B12 deficiency

I received another appointment from St Thomas'. I asked if it had been sent in error as I have been discharged. Was told it was a follow up re bloods taken - but a phone consultation could be arranged just to discuss all my bloods before I was discharged. The antibody work isn't back as that takes a few weeks but I was told I am low in B12. I had some B12 jabs years ago and told I didn't need anymore. Do any of you have Hughes and low B12? St T's are also re-testing for lupus as well. I have been taking lansoprazole for many years and have now just read that that is renowned for lowering B12 uptake.

Confused :)


7 Replies

Hi there, it is very common to be low in B12 with autoimmune disease, same as Vit D, I am glad that they have picked it up for you. Our local paediatrician is about to help my children by starting them on this for their fatigue. Mary F x


Mary - thank you. Whenever I have a question you are there :) You are such a blessing.

I do hope your children benefit from this - your paediatrician sounds good. It is hard to go through this as an adult it must be so hard for your kids (and you). You are all in my thoughts and prayers.



I am very lucky currently, he is great, and knew nothing of the disease until I came along, and has mended our last experience which was to be sent to a neurologist who told us the headaches were not that bad - 'one whole year off school' and now part time. So there is always hope in every situation. MaryF x


I too have a B12 deficiency as well as Vit D. I have to have injections every 2 weeks. Although I was supplementing with Vit D I was still down to 35 on my last Vit D test so I think that this condition does have an affect on those two things.


My vit d levels were seriously deficient last year and I took massive doses for three months then tested normal. I now take the normal daily dose and the fibro pains I had are much better. Haven't been tested since though so might ring the rheumatologist I saw in July to see what he suggests.

1 like

I ruled out the thyroid as suggested by Apsnot and also scored a whopping 35 for Vit D. I'm taking 10,000 IU every other day. Otherwise all my bloods were OK except Anticardiolipin antibodies which have been steadily rising over the course of the past year.


Hi. I take lanzoprasole also. I have 3 monthly B12 injections and my GP practice said once you take them you have to continue indefinitely.


You may also like...