Pernicious Anaemia Society
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Lichen sclerosis

Hi there. Does anyone with this condition feel it gets worse if you stop B12 supplements? 

I am hypothyroid, have coeliac, lichen sclerosis and undifferentiated connective tissue disease (UCTD - I post on the lupus site too).

My GP was asked by the consultant to give me injections but she was a bit reluctant to do so as she said 'they are very potent.' On testing both my B12 (b12 only just in range after supplementing) and my vitamin D were deficient. 

So for the last few years I have supplemented with sublingual sprays and losenges and the GP now wants me to stop for a month to have my levels tested.

Two weeks in and I already have many symptoms (tingling, numbness, painful tendons etc) but the lichen sclerosis us the worst it's been since being diagnosed 7 years ago. 

Does anyone have any evidence that B12 deficiency can make this condition worse?

Appreciate any thoughts,


2 Replies

Pasting response that I've also put on thyroid forum - so possible that the links here may not work properly

Gps can be ridiculously stupid hen it comes to B12 ... and are woefully ignorant of the limitations of the B12 serum test in relation to a deficiency.

Drawing your GPS attention to this UKNEQAS alert on the need to look at symptoms may help

though the overlap between symptoms of PA and symptoms of B12 deficiency is going to muddy the waters somewhat.

A month probably isn't long enough to stop if the B12 serum test is going to be useful - more likely to need 6-3 months.

Looking at MMA and homocysteine can clarify if there is an underlying B12 deficiency as these are tests that look at nasties that build up if the body doesn't have enough B12 at the cell level to recycle them into good chemicals (will also be high if folate is low). These tests are giving a guide to whether B12 is getting through to the cells where it is needed which is the real problem with a B12 deficiency. It is quite possible to be deficient at the cell level whilst having high levels in serum ... and by high here I'm talking about over top of the range not just kicking around the bottom.

You may also find the BCSH guidelines useful - refer to the summary which says that it is important to treat neurological symptoms as effects can become irreversible and significant numbers of people develop neuro symptoms well into the so called 'normal' range - just because B12 is something where there is a huge amount of variation in people ... another reason why you can't just go on the numbers ... go on the numbness :)

I haven't come across lichen sclerosis - sounds very unpleasant though - and from what I can find nobody is quite sure what causes it - one theory is that it is related to the immune system - so another autoimmune problem and we all know that they tend to come in c;lusters so having thyroid, B12 deficiency from PA, and another autoimmune wouldn't be beyond the realms of possibility - far from it. Possible that the B12 is helping because B12 is important in maintaining a healthy immune system so it has put something that was out of balance back in balance.

I don't have thyroid problems but I do have B12 Problems - saw your question on PA forum so will also copy this reply there.

May be you should also tell your GP to look up the treatment for cyanide poisoning if she is worried that the doses that are normally given are 'very potent'.

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Thank you for your comments and links


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