B12 deficiency: I received another... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,335 members10,532 posts

B12 deficiency

stillwaiting profile image
6 Replies

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 :)

Lynn.x.

Written by
stillwaiting profile image
stillwaiting
To view profiles and participate in discussions please or .
Read more about...
6 Replies
MaryF profile image
MaryFAdministrator

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

stillwaiting profile image
stillwaiting in reply to MaryF

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.

L.x.

MaryF profile image
MaryFAdministrator in reply to stillwaiting

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

CanaryDiamond10 profile image
CanaryDiamond10

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.

panda60 profile image
panda60

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.

Kazzapeaky profile image
Kazzapeaky

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...

B12 Deficiency

not unusual to have a B12 problem if you are a Thyroid patient, taking a pill for B12 will alter...

Has anyone got a vitamin b12 deficiency?

APS in December after having 2 miscarriages. Didn't take the news to well!! Been suffering from...

Vitamin D deficiency.

so I sent my doctor a follow up message about that. My vitamin D level is 24. I have been taking...

Anyone IgA Deficient with APS? Sarcoidosis APS

My nearly 50 year old husband has just been diagnosed with APS after 2 different bouts of multiple...

Superdrug b12 test

purchased a do it yourself b12 kit, but I was unable to get enough drops of blood to the fill...