For reasons that are too embarrassing to explain, I suspect I might have something wrong with my parietal cells. I've had the full blood tests, plus B12 serum, folate, and IF antibody tests - all 'normal' (i.e. B12 in the 'grey zone'), but I wasn't tested for Parietal Cell Antibody. Would anything have shown on any of the tests I've had if I had a Parietal Cell problem, and, more importantly, could I be tested now for Parietal Cell antibody if I've been taking 1200ug doses of B12 (sublingual)?
I'm pretty sure the B12 won't affect an antibody - it's either there or not, but I haven't really researched the parietal cell variety yet so I thought I'd double-check with the experts. I'm already provoking my doc by asking for B12 treatment when he thinks my level is acceptable, but I know something is wrong here and I think Parietal cells might be the root problem. I don't want to provoke him further by asking for more weird, and to him unnecessary, tests so can anybody reassure me that parietal cell antibody testing is like IF antibody testing and therefore immune to me taking B12 supplements?
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Don't know if B12 will affect test for Parietal Antibodies - it isn't a very reliable test from what I understand, which is one reason why it isn't generally done - even more unreliable that IF
To be honest I think it is easy to drive yourself mad wondering what might be the cause - and realise that you are trying to get a diagnosis of B12 deficiency so having a cause seems like it should make things clear cut with GP but not sure that it really works like that.
Hi Gambit, no, this isn't really for my GP - I couldn't care less what he thinks, frankly; I just don't want him to stand in my way! No, I'm more concerned with getting to the bottom of the real problem and not treating some 'surface' problem when the real problem is underneath, unresolved. I did that once before and lost my gallbladder because of it and, I suspect, inadvertently brought my current complaint on. That's an object lesson in not going with the flow if ever there was one!
I get what you are saying about driving yourself mad looking for a cause but the opposite is in play for me. While I have something to work on, some hope in sight, I find it easier to get through my day. Without it I go to hell in a handcart.
The thing with B12 deficiency is that there aren't any good tests for anything. Unless it is something really clear cut like removal of the ileum then you are unlikely to get to the cause and the treatment will always be the same. Even if you identify one cause there isn't anything to say that there aren't other causes going on as well (eg drug interaction could just be making situation worse rather than being the underlying cause). Sometimes things even seem to be going on at the cellular level.
A good thing about B12 is that you can't overdose on it.
Hope you won't mind me saying this but I actually think you might be better off looking at something like mindfulness meditation as a way of coping with the anxiety - not belittling the effects in anyway as anxiety and obsessive behaviour are both potential psychological symptoms of B12 deficiency (so hope you have them on your list :)). Know the looking for a cause is helping you at the moment but as a long term strategy for dealing with anxiety it may not work and just lead to another problem.
I found 'Mindfulness: a practical guide to finding peace in a frantic world' was particularly good in helping me to cope with anxiety when it was really bad - comes with a CD of useful mini-meditations - that I still go back to at times.
No, I don't mind at all, Gambit - I know you are trying to be helpful. I do try to roll with the punches with this illness because it's such a dead end, but it's a fine, and maybe dangerous, line between accepting 'that which you cannot change' and just accepting everything doctors tell you because it's inconvenient for them if you don't.
I've tried meditation and the like many times before and it drives me bonkers. It always makes me MORE aware of my crazy thoughts rather than getting them into line.
For me I find a goal to work towards is helpful. Particularly if it's sane, but I must admit I have a LOT of doubts. Even with this treatment I'm looking at the sheer inconvenience of it, which is no little thing when you feel as crap as I do, and ask myself why the hell I'm putting myself through it. Why can't I just settle down to it and accept it? And I have, to a large extent, but I feel it's a bit like bereavement: when I was diagnosed with this, a lot of me died: my plans for the future, my ambitions, even what I was capable of. I haven't got over the grief of that yet and this gives me some way to try and cope with that.
It's ironic that people would, quite rightly, say to you, 'At least you don't have cancer, you don't have a terminal illness', but at another level you DO have a terminal illness. You are watching a lot of yourself die and knowing that it's only going to get worse, possibly a LOT worse, and there is nothing you can do to stop it. I think me trying to 'solve' this helps keep that demon away from the door. Meditation just gives me quiet time to realise how desperate my situation really is!
Really sorry to read this - and do feel for you ... and I know meditation can be a bit hit and miss. If I ruled the world I'd probably be prescribing you B12 in whatever form you needed and whatever quantities you needed just on the basis of the anxiety and depression and I do think it is quite disgusting the way the possibility of B12 is completely overlooked and GPs just immediately reach for prescription bad and write a script for anti-depressants. I know I reach for the B12 spray when things are starting to feel the anxiety creep up - but the mindfulness has given me the awareness to look beyond the thoughts as they come and see the bigger picture ... and I'm quite good at finding non-standard solutions to things.
Another awful thing about B12 is that GPs and others hang around and dither so long about things that some of the damage ends up being permanent but that doesn't mean that it is going to be the case for you. I've been quite shocked in so many ways by just how much the B12 deficiency affected me - suffered 30 years + of depression and wouldn't have put any money on B12 having any affect on that but the last 4-5 months of self-treating has been like getting my life back - not just the balance coming back and more energy - but actually just feeling that life is worth living which I honestly would have to say hadn't been the case for most of the last 30 years. In fact when I went to see the doc in May part of what I wanted to talk about was how the B12 deficiency was affecting my ability to manage my depression because it was totally masking the depression - had a very strange experience after the last maintenance shot a week or so early where I went from struggling to run because it was just so difficult to move the limbs to setting off for a run and finding myself struggling against tears and wanting to curl up in a little ball because I was just so depressed (mainly work crap and resulting anxiety) ... and it came as a big surprise when a few months later I realised that I not only had my balance back and more energy but actually I wasn't feeling depressed - though still had spells of anxiety just prior to mensturation ... and then a month later even that was gone, so please don't feel that you have lost your life. The real battle is getting the treatment that you really need and I really, really, hope you manage to do that soon.
Thanks, Gambit, you're very kind. Now that the doc's agreed to injections, at least I'm going to get a shot at it (ho - a pun!). I'm seeing him tomorrow and he's giving me a prescription (for what, I do not know) and a table for my injections. Fingers crossed that I'm smarter than I think I am and there's substance to this and it actually works!
I expect you can have parietal cell antibody testing any time, its just not specifically indicative of PA/B12 def. It can be positive in a lot of other autoimune conditions (lupus, Sjogren's syndrome, vitiligo, thyroid etc) and people can be positive with out having any problems I believe, so its a non specific test that may help in diagnosis, but not a specific test I believe.
Gastric parietal cell antibodies (GPC antibodies) have a low specificity for the presence of pernicious anaemia since, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive gastric parietal cell antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan, et al 2009)."
Thanks, Marre, that's really useful. I'm presently trying to track down any disorders that stem from defective Parietal cells and/or how it might effect B12 or myelin sheath production, but they all seem to be dead ends; none of them seem to fit. But it's good to know the test is there, and I haven't scuppered it, even if it isn't very helpful.
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Oh dear! I am likely to have B12 toxicity!
