I was diagnosed with a B12 deficiency on 2012. I then went through the 2 weeks of injections and from then on wards had the standard 3 monthly injections. I was also Diagnosed with ME (CFS) & I always find where I get about half way to needing my injections the symptoms I have from this start to amplify and grow in intensity until I receive my injection, I wondered if anyone else had this? Also, it has never been looked into by doctors why I have the B12 deficiency, I am not a vegetarian and regularly eat meat, so I just wondered how people come to know they had PA as I would like to know what has caused this condition if it is PA or something else...?
Thanks
Jo
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jobie89
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Sounds like you need (much) more frequent injections. And yes, then it's 'normal 'to experience a return of symptoms. We all have this if we don't get enough B12. You could try and talk to your GP about getiing (much) more. I wrote an article once on B12 and ME (but not translated in english) but there have been some studies where people with ME improved dramatically with enough B12. They might be able to help you with that on the ME forum. But You clearly have a B12 deficiency and some or even a lot of your symptoms are related/caused by that, so I'd focus on getting enough B12.
Yes I have requested to have them more regularly & emphasised how when I have had my injection, my other illness seems to be more bearable, however, they sent me for blood tests and said my levels are now higher than average, however, I cannot see it is a coincidence how ill I feel half way through my injections and almost to the point of no return towards then end, and then 2 days after the injection I feel better (not how I used to feel but better.)
That's interesting you have written an article on B12 & ME, I am adamant there is a connection. The thing is , I do not know how long I had the deficiency before it was noticed and what damage it has done elsewhere... Its strange how I ended up ill with both at around the same time.
Ok, thank you for this I will certainly have a look at the other links.
No I do not think it is, you know your own body at the end of the day. I am just so down with it all, I am 27 but feel like I am 72 :(.
Yes I did religiously start having the Spatone B12 suppliments in drinks when I got half way through, however, I did not notice a massive difference, they did slightly help take the edge off, its just they are quite expensive :(. No I do not have any copies of my blood tests, I am not sure how to go about this...
You are entitled to ALL copies of your blood test results as your legal right. Data Protection Act. So do try to remember to request copies each time you are tested so you can monitor your own progress and it helps with posting here too - so others can support with advice ....
Get better supplements for one. 1000mcg sublinguals from fe Now Foods, Biotics, Natural Factors, Dr's Best etc or a nosespray and take those. And yes, get those blood results.
jobie89 - your B12 levels are higher because you have been receiving injections. I have read here that further testing is of little or no value whilst supplementing. Your GP should be aware of this as it is laid down in the Guidelines for Folate and B12 Deficiency from the British Haematalogical Society ....
Yes, I thought this too. I just feel they are going out their way to be unhelpful and I can't seem to get any of them to understand how ill it makes me feel :(. I just have taken their word for it but it seems that I need to push them more for more regular injections, lets face it, us sufferers know best as we are experiencing it first hand.
Have you checked your symptoms against the list on the PAS website ? If you have neurological symptoms then you should have more regular injections - until the symptoms subside. That too is laid down in the Guidelines I mentioned above ....
Am afraid when we do not receive the help we need - we have to read and read and ensure we are well informed when confronting the medical bods.
I live in Crete - so things are simpler for me - I can buy B12 injections over the counter and the Pharmacist will even do them for me at the back of the shop. Some are very handsome too !!!
No I have not Marz, I will have a look at that now thank you :). I will certainly look into those guidelines too.
Yes I have done a lot of reading but it never occurred to me to see about a B12 deficiency forum until today, I am so glad I have as I have already learned so much from other sufferers like yourself
Oh really, that is handy then, I said to my mum I would pay for them to be done if needs be, you cannot put a price on feeling semi normal rather than feeling so ill you can barely function. And what a bonus they are handsome too
I just wondered how people come to know they had PA
Unfortunately it's not simple .
You could ask for a test for anti-IF (Intrinsic Factor) antibodies. If that comes back positive then you have PA. But - about 50% of people with PA test negative. Even more unfortunately, about 50% of doctors don't know this and assume that a negative result definitely shows you don't have PA.
You could ask for a test for anti-GPC (Gastric Parietal Cell) antibodies. This is no longer recommended, because a positive result happens in lots of people (10-30%, depending on age) who don't have PA.
You could ask for a gastroscopy, where they stick a tube into your stomach and take tissue samples - looking for Autoimmune Metaplastic Gastric Atrophy (AMGA). That's a pretty good sign of PA - especially when combined with low serum B12.
My idiot haematologist started the consultation by telling me that I didn't have PA. When pressed he said that it was because I'd not had an anti-IF test (yes, he made an instant diagnosis based on the fact that I hadn't had a test done!!). When I asked him for his explanation for the combination of low B12, positive anti-GPC and AMGA he conceded that I might have PA. That's how difficult it can be.
In the olden days you could have had a Schilling test. Unfortunately, that's no longer available. But I have started a petition to enable its use again (so far, only 51 signatures). petition.parliament.uk/peti...
That is useful information, thank you, I will make a note of the tests and request them. I have had quite a few blood tests now, however, I do not know what I have and haven't had :(.
That is the trouble doctors are quick to throw pills at you nowadays but not actually investigate into matters to find underlying causes. I just would like proper diagnoses to try and make some sense of things :(.
I have just signed you petition, good luck with it
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