hello again - my tests are back stating that no pc antibodies were detected. So I shall continue on the B12 tablets I was given by GP.
However I do eat plenty of B12 rich foods and yet am deficient. Is there any other reason why your body does not use the B12 you consume?
I was given injections about 12 years ago.
Lynn.
Am I the first to reply to myself - lol!!
I have just read online that some people just do not absorb the B12 in their food as it is bound within the food's protein. Yet they can absorb it in suspended in the carrier that a tablet provides. Apparently this can sometimes happen if you have been taking certains meds long term such as Lansoprazole which I have been on for years.
I hope the b12 tablets kick in soon - I have been on them for 8 days and see no improvement yet.
Lynn.x.
Hi Lynn, there are lots of reasons for a B12 deficiency, being on Lansoprazole is one of them. Tablets are unlikely to be effective, since they are only meant to be prescribed for dietary deficiency. Have a look around this link:
Thanks Hampster - I feel a battle is ahead convincing my GP I need injections rather than tabs. She is on holiday at the moment so I have to wait a while. I did say to her could it be the lansoprazole and she said no - so I did my own research - now I know it is.
Quite suddenly this past few weeks I suddenly feel really low. I thought it was because of all the other health issues - Hughes and more tests for lupus etc. But now I think it is the low B12. My pain is much worse too.
What saddens me is that my dr said that I was low "but not that low" the lab norm was 25-108 and I am 21. Yet I know you can feel dreadful even if you are in range but near the bottom. When I was given jabs all those years back I was actually in range but at the low end.
By the way - embarrassing question but where do you have the jab - I am sure I had it in my arm before - dr said buttock????
Thanks for being here Hamster.
lynn.x.
Did you have the Active B12 test done Lynn? Your lab range and result look like Active B12 - the serum B12 range is usually something like 180 - 900. Whatever way you look at it you're below range, you should be on injections in my mind. Also was wondering if they tested Intrinsic Factor Antibodies, you should have that done as well? They can't rule out PA just because of the antibody tests, lots of people test negative for both, or positive for one and negative for the other. But if you do test positive for IF antibodies that is diagnostic of PA so worth getting it done.
The fact that you suffer from other autoimmune diseases makes it a lot more likely to have PA. You might want to show your Doctor this part of the NICE guidelines which talks specifically about when B12 tablets should be given:
cks.nice.org.uk/anaemia-b12...
"Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12. It is available on an NHS prescription only for a person who is a vegan, or who has a proven vitamin B12 deficiency of dietary origin, and the prescription must be endorsed 'SLS' (Selected List Scheme)."
If you eat meat and/or dairy products then you won't have a dietary deficiency and you shouldn't be on those tablets. Ask your doctor the question - have you proven that my deficiency is dietary? Show her the list of reasons for deficiency and ask her to explain it to you:
b12deficiency.info/what-are...
Re the jab, at the doctors they do IM injections, so into a muscle. The Nurses always do mine in the top of the arm, but you can have it in any muscle - thigh, bottom, etc. Lots of people who do their own injections do it Subcut, so into fat, like a diabetic injection.
One other thing, make sure you have your folate and iron levels tested, and get the results, low normal is often not good enough, and folate deficiency is linked to things like depression.
H x
Brilliant - thank you so so much - I have made a list of what to ask! Folate was normal, not sure re iron. The test was done at St Thomas' but I wasn't told it was active b12 but as you say the ranges are diff to the test I had years ago so I assumed active was done. Are IF antibodies different to parietal cell antibodies?
Lynn.x.
If you had it done at St Thomas' it would have been Active B12. And I can tell you that your result of 21 is without question deficient. Your doctor is not interpreting the result correctly and should be called up on it. My husband has had that test done and as part of the information that St Thomas' sent me there is the following statement:
"Please note: ‘Active’ vitamin B12 concentrations <25 pmol/L indicate vitamin B12 deficiency. For results between 25-34 pmol/L a confirmatory functional assay of vitamin B12 status, namely methylmalonic acid (MMA) will be performed to confirm status."
There is a grey area on the test, but it is between 25-34. Your result is deficient - full stop - and you should be on injections. I wonder if your doctor would be so casual about it if it was her life at stake? This kind of thing makes me utterly furious, don't let your doctor get away with it. You could contact Denise Oblein at St Thomas' and explain the situation, tell her your doctor is not treating you despite a deficient Active B12 result and you'd like some information from them to give to your hopeless GP. Or ask her for the number of someone who can explain what the test means to your GP. Her contact details are:
nutristasisunit@gsts.com
020 7188 7188 ext 52471
On your other question, parietal cells produce gastric acid and intrinsic factor in the stomach. Intrinsic factor binds to B12 in the stomach and transports it to the ileum. So if you have parietal cell antibodies which cause the destruction of parietal cells, then you won't be producing intrinsic factor, and you won't be able to transport the B12 to the ileum. Alternatively, you could have normal parietal cells producing intrinsic factor, but then have antibodies against the intrinsic factor itself, thus directly causing their destruction. Same outcome, no B12 gets to the ileum. Things can go wrong after this as well, because once in the ileum B12 is picked up by transcobalamin II. If you have any defects in transcobalamin II then again the B12 won't be able to take the next step of the journey. It's way more complicated than that, and there are other areas it can all go wrong, methylation defects etc., but that is the simple explanation of PA as far as I know anyway!
One other thing - I would get a copy of your folate result because they'll tell you you're normal right at the bottom of the range, and in my case, below range. You ideally want to be in the top quarter of the range. And ask for serum iron and ferritin tests, and vitamin D and calcium whilst they're at it. Not to mention magnesium, which is also depleted by PPI's.
Maybe see a different doctor, this one doesn't sound very good for your health.
H x
This is all brilliant info - thank you. To be fair to my dr - I am not entirely sure how much she knew of the results before she left for holiday - sorry if I mislead you about this - it wasn't my intention. All I have been told is to carry on with the pills until I can see her. However she didn't seem to know about a lot of all this. But now I do - thanks to you! Have added more questions to my list 
L.x.
I don't think there's a lot to add to Hampster's info, being very good as usual, except to say that I believe the latest HoloTC levels may have been updated, my latest figures from Guys, show that anything between 25 and 70 and the sample is automatically sent for MMA testing. If you contact Denise Obein, then ask her if she can arrange a telephone chat with Dr. Dominic Harrington. Dominic is the Director of Medical Research at Guys / St Thomas's and is a great chap, he may be prepared to talk to you on the phone, or she may be given permission to pass on his E-mail address. Anyway talking to Denise is a good idea.
I would just add that I tested NEG for both I.F and P.C.A and decided to take tablets to start with, at a dose of 150 micrograms per day. I had been informed by an American Uni. Hospital, that they preferred Slow Release Tablets as a way of medicating. Not being able to obtain a Licensed B12 in slow release, I decided to take Cytacon tablets at 50 micrograms X 3 times daily, spreading the times throughout the day. This was unsuccessful and my Serum levels did not rise by much at all. I then found research that showed that a very eminent doctor, had found that B2 was needed to activate B6 and that B6 was needed for the absorption of B12. I then added a tablet made by Activis called "Vitamin B Compound Strong Tablets" taking the 1 x B12 and 1 x Activise together and my B12 Serum levels shot up from 131 to 478 in a matter of only 6 weeks. Of course I have carried on from there with HoloTC and MMA to be sure of just what is going on. I'm now wondering why, when it appears that my Serum B12 gets up above about 400, then I begin to get cramps in my hand and my toes, as soon as I stop the B12, the cramps disappear. NEW PROBLEM ???
OH! yes one last point is that I think you will find that the Cytacon tablet is the only one made that is Lincesed and that in my opinion is very important.
Hope you get sorted and soon feel much better.
This is really interesting - thank you - I have made a note of it.
I am on 100 mcg of cyanocobalamin daily and this is day 11 - no change in symptoms - in fact the pins and needles in my back are worse. Back at St Thomas' next month.
Lynn.x.
Hi Lynn
The Cytacon tablet is of course also Cyanocobalamin, but are you sure you have a licensed form, as this is the only way to be sure just what the tablet contains and I feel that is very important when one is running a continual program as with B12.
Please don't feel that you should be seeing great changes in the short term, I'm afraid that in the world of B12 medication, more than a little patience is required, but you will get there I'm sure, just give it time.
Oh! I didn't mention that if you wish to try the Activis tablets route as I did, then these tablets are available over the counter at your local Chemists, priced around £4.50 for 28 tablets, they should also be available from your G.P.
Kind regards and best wishes
Brian
Thanks Brian - there is no way I can tell if it's the licensed form as they have been measured into a brown bottle - no info at all. Thanks for all your help.
Lynn.
Hi Lynn
Ask your Pharmacist he / she should be able to tell you and you can request the Licensed form of any drug as far as I'm aware from your G.P., but that's why if you use high street shops and cut price outlets, you should always ask for a licensed medication, as many drugs are bought in from all over the world and sadly it would appear, that some retailers are only interested in profit and not quality.
Best wishes Brian
Can I just say that low dose cyano tablets are not going to work on someone who cannot absorb B12 via the stomach. I say this both from personal experience and also from all that I have read. Information on treatment is found here:
b12deficiency.info/treatmen...
Thanks Hamster - yes I understand - that site is great and I have learnt so much from it. The dr is back at the end of next week so I shall just have to struggle on til then
Have to say I felt a bit grim this afternoon - very low & tired and tingly. Crying whilst I did the ironing - lol - can laugh about it now
Lynn.x.
Hi stillwaiting I was told because I am a coeliac I don't have the emzines to produce b12 normally. I have been on b12 injections for about 17 years now
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