Hi there. Does anyone with this condition know whether it worsens if you stop B12 supplements?
As you know
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 some time ago to give me injections but she was a bit reluctant to do so as she said in her own words, 'they are very potent.'
However on testing both my B12 (b12 only just in range after supplementing) and my vitamin D, both were deficient.
So for the last few years I have supplemented with sublingual sprays and losenges (which have helped me in many ways) but the GP now wants me to stop for a month to have my levels tested.
The paradox is that after the shambles of Christmas when I went slightly hyperthyroid and they reduced my thyroxine to the point I was in tremendous joint pain, she has allowed me to alternate 75mcg / 100mcg every other day ... yet tells me to stop my B12 for a month!
Two weeks in and I already have many symptoms (some of which are tingling, numbness... like partially wearing a glove and sock, painful tendons etc) but the lichen sclerosis is now the worst it's been since being diagnosed 7 years ago.
Does anyone have any evidence that B12 deficiency can make this condition worse? I have posted on the PAS site too, just in case anyone else can shed any light.
I would appreciate any thoughts,
BB
Written by
bestbuddy
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B12 injections are very potent? Oh boy. It's something you can't overdose on! What a ridiculous thing to say!
I think you already know there's likely to be a link. Whether there's someone here who is in the same boat, time will tell.
Unfortunately, a mere month off B12 supplements might not be enough for the levels to drop, but what your doctor doesn't seem to appreciate is that B12 deficient people who know why they're deficient (and you do - you have Coeliac) are always going to need lots of the stuff to feel better. It's something of a pointless experiment she's doing on you...
The PA Soc forum members will doubtless help you out, but this does sound like something Martyn Hooper might be able to help you out with if you join the PA Soc which he heads up - for a very affordable £20 I believe. Your doctor is desperately in need of education. How many other patients is she keeping ill?
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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