Hi everyone

Has anyone read anything about a link between lupus disease and B12 deficiency as the symptoms of both conditions are so similar , just looking down different avenues since my daughter in laws MMA blood test came back at a reading of 10 and since then she's reduced her sublingual B12 tablets to one a day and her behaviour as started to change and not for the better. Someone who has lupus disease has told her that the symptoms are very similar all I know is when she was taking 2/3 B12 tablets she was much better . She dropped to one tablet a day because someone's dr told her that it was dangerous to take more than one !!!!!

Thanks for any help /advice on this matter .

7 Replies

  • the symptoms of B12 deficiency have a huge overlap with a number of other conditions ... and those of lupus overlap significantly with others from looking at the lupus UK website.

    Lupus is an auto-immune disease - as is pernicious anaemia - the most common cause of B12 deficiency ... and having one auto-immune problem makes you more likely to have several.

    One drug used to treat Lupus is methotrexate which has been linked to B12 deficiency.

    There is also a Lupus forum on health unlocked so you could also ask there.

  • I have Lupus and Pernicious Anaemia both diagnosed at the same time nearly 30 years ago. I was lucky to have one of the best rheumatologists in the UK. At that time I was in Reading. I am now in Thanet, Kent and struggling to even get a 3 monthly B12. I also have Crohn's (lucky me - not). Luckily I am not on methotrexate.

  • If your daughter in law does not have PA - then it could be worth also checking the thyroid - which is often low when B12 is. Not just the TSH either - but the FULL Profile to include - TSH - FT4 and FT3. There are also Thyroid anti-bodies - Anti-TPO and Anti-Tg. Again Low Thyroid and Low B12 symptoms often overlap. Private Testing is available through Thyroid UK with Blue Horizon - several packages with Home Testing available.

    Maybe introducing a good B complex with the B12 will help to keep all the B's in balance. B9 - or Folate works with B12 in the body I have read - so good to have both on board.

    Always difficult trying to help family :-)

  • Hi Networker. Just a couple of quick questions as more information would help folks here to advise you.

    Has your daughter-in-law been tested for B12 deficiency? What was the serum B12 level (and the reference ranges). Has she been tested for IF and PCA, to see if she has PA.

    If she has been diagnosed with B12 deficiency, she should be having B12 injections. Notwithstanding, B12 - in whatever form - is not dangerous, so taking more will not hurt her. But if she has absorption problems, tablets will not work. Sublinguals work for some people, but B12 injections are the best method of treatment.

    If you have a look at the PAS pinned posts (to the right of the home page), these give lots of information about PA and B12 deficiency and should reassure you about the safety of B12. Whoever the GP was who told her that more than one table is dangerous is ill informed (to put it mildly).

    In terms of Lupus, I agree with Gambit62, there are many crossover symptoms and autoimmune conditions (if this is what she has) do tend to come along together.

    I have B12 deficiency and have recently had a positive ANA (antinuclear antibody) test. The result was extremely high and my neurologist has said that something is definitely 'going-on' with my autoimmune system....and guess what, he thinks I may have Lupus (referred to rheumatologist - appointment pending).'s certainly worth asking her GP to do an ANA test for your daughter-in-law. A positive test does not mean she does have Lupus (it's a very general test), but would indicate that she should be investigated further.

    Anyway, hope this helps.

    Good luck with getting the treatment she needs and please let us know she gets on x

  • Hi yes she has been tested for B12 deficiency over the last 7 years with varying results ranging from high levels to low levels but all the DRs do is treat her for anxiety they will not recognise b12 deficiency all I know is when she takes 2/3 sublingual tablets a day she's fine but it's got to the stage that she's questioning the b12 after knock back after knock back from the medical profession !!!!

  • ... absolutely heartbreaking for you. What did you think of my post earlier about the Thyroid - that too can be the cause of anxiety and worse.

  • Hi Networker. If she has been taking B12 supplements throughout the seven years of testing, this will possibly cause her levels to 'swing', depending on when she last had supplements and when the test was taken. And once supplementation has started it is very difficult to get a diagnosis of B12 deficiency. It can take between several months and up to two years for B12 levels to return to pre-supplement status.

    The fact that she is 'fine' when she takes the sublinguals is perhaps indicative of the fact that she needs them.

    One way to try and get a handle of this is to keep a symptom diary, marking down when she has supplements, what symptoms she has, and when these improve or get worse. This might help her to identify a pattern and work out if the symptoms are indeed B12 related.

    If they are, having the information will give her the confidence to approach her doctor again. She will also have some 'evidence' that she can show her GP to support her argument that her symptoms are B12 related.

    I also wonder if her GP's are aware that anxiety (and depression, and lots of other things too) can be a symptom of B12 deficiency? Has you daughter-in-law seen the list of symptoms on the PAS website? She may have symptoms without actually being aware that they are symptoms?

    It must be very difficult (and possibly frustrating) to try and help someone else with health issues, especially if she's questioning whether B12 is, in fact, the problem. And it may that there are other things going on - B12 has many crossover symptoms with other conditions, so it's often quite difficult to determine what the problem is.

    As supplementation has been started, the only way to try and find out whether B12 deficiency is involve is to either consistently take B12 (and get better) or stop completely (and become ill)! I think that's called being caught between a rock and a hard place!

    It's a shame she hasn't got a supportive GP to advise her and help her sort this out, one way or another.

    I suspect that if she is beginning to believe that B12 is not the problem, then she'll eventually stop the sublinguals completely. If she does this and then becomes I'll, it would be far better to get a serum B12 test before considering starting the B12 again.

    I really wish you well in this...I have a wonderful daughter-in-law but even so, am aware that there must be an invisible line that I really wouldn't want to cross (trouble is, not so sure I would know where it is) 😀😀.

    Take care both and please let us know how it goes.

    P.s. Agree with other replies about further testing for other conditions. Definitely worth a shot.

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