Seems so familiar...

[JustLanded]

Hi! I have just this morning been diagnosed with PA, injected with the first of 6 initial doses of B12, and am feeling pretty overwhelmed. And yet, having read some of the posts here, things seem quite familiar. I'm wondering just how long I've had PA, and how I might find out, as I have struggled for years with what I call 'sofa days' and general fatigue. Recently I have had worsening bloating, and burning feet, which I see from PA Society are reported symptoms. I have been a diagnosed sufferer of iron-deficient anemia for 10 years, had all sorts of tests and investigations, and been given no explanation as to why I get it. One consultant told me I was just going to have to accept that I was a bit of a wimp, and I should just rest when i could! Is it possible that my stomach has never been able to absorb nutrients from my food, and that this could be the root of my growing up learning to label myself as 'a tired person'?

[fbirder]

The good news is that, with a confirmed diagnosis of Pa, you know what's wrong with you, and how to fix it - enough B12 injections to keep your levels up. The bad news is that many people find it difficult enough to get the injections they need via a health service that can be somewhat stubborn to the one-size-fits-all doctrine.

So start a diary of your symptoms and how they vary with your treatment. If it starts to look like they're coming back before your two months between maintenance doses are up then you may have to negotiate for more frequent jabs or to administer additional supplements yourself.

Yes, I did say 'two months'. Your burning feet sound like peripheral neuropathy - which means the guidelines say two months, not three, between doses.

Another bit of good news is that you may have solved your iron problem (or found the cause).

With PA you almost certainly have Autoimmune Metaplastic Gastric Atrophy (AMGA). This kills off Gastric Parietal Cells (GPCs). As well as helping with B12 absorption these cells make stomach acid. Lack of which may be causing your bloating (protein, undigested by acid, makes it into the large intestine and the bacteria that live there have a big party).

Another thing that acid does is to help dissolve iron. If you've been supplementing with iron sulfate then it''s quite possible that most of it hasn't been absorbed. You could take the iron with citric acid and ascorbic acid (Vit C) - both of which help it dissolve. Or take iron in a chelated form (bisglycinate, fumarate and others).

Best of luck and ask any questions you feel are unanswered.

[JustLanded in reply to fbirder]

Thank you for your support! It's good to know that people are out there and happy to share experience and knowledge. Just thought I'd let you know, I've never taken iron supplements since first trying 10 years ago as they caused the most painful mi-tract wind and bloating, so i actually get an iron infusion - Ferrinject - every 2 to 3 years depending on my iron levels.

great advice re the feet - i need to be 'armed' when I next see the GP!

Many Thanks - it's been a hell of a day!

[Gambit62 Administrator]

I can only go from my own experience but I can trace my symptoms back over 40 years - mainly neuropsychiatric in my case - with no anaemia at all - but like you things got a lot worse just before I found out I had a B12 deficiency.

It took me a while to get the treatment I needed - which meant treating myself - and its difficult to believe just how much of a difference it has made - like finally getting a life that I hadn't had since I was 10 or may be never had before.

Its a pity that doctors seem to think that providing a label is sufficient and that looking for underlying causes is unnecessary - or may be it is just that they don't have the self confidence to be honest about the fact that they don't have the answers.

Glad that the loading doses are working and hope it continues.

[JustLanded in reply to Gambit62]

Thank you Gambit62!

I have always tried to see the GP as the gateway to health services, and not to expect them to know more, but I think their hands are tied by practice managers etc. Saying that, I have taken a long time to approach mine with some of my early symptoms like burning feet, for fear of being labelled a hypochondriac, as most of my GP enquiries have not turned up any real diagnosis over the years! It looks to me like PA has a particularly complex web of symptoms, but that's why I wanted to join the forum - let's hope that together we can all make it easier for early diagnosis in the near future!

[wedgewood]

I suppose in a way we can count ourselves fortunate in our misfortune(of having P.A.) Not so long ago there was no PAS and folk like ourselves were completely at the mercy of our GPs who are so ignorant about P.A. At least we can support eachother and pass on tips and advice . I think that we are a wonderful group. But there are P.A. people out there who have no computer , lap top etc. So we have to support Martyn Hooper in his endeavours to enlighten the medical profession to the truths about P.A. so that there will be no need for the PAS in the future ( mind you, I would miss you all! )

[clivealive Forum Support]

Hi JustLanded welcome. Be assured there is life after P.A. as I've had it nearly 45 years and was probably becoming B12 deficient for 13 years before that due to stomach surgery in 1959 but I'm still "clivealive" at 75.

Be aware though that you might need to "educate" your GP in order to get the frequency of injections you need as most of them believe that "one size fits all" and that is certainly not the case.

I am not a medically qualified person but do you know what your Folate level is as this is essential to process the B12 you are now getting.

I wish you well.

[Gambit62 Administrator]

Fail to understand the point you are trying to make. both nasal sprays and self injecting are ways of getting B12 into the body that does not rely up on the gut which is where PPIs and statins would interfere.