Hi, had PA for decades and b12 injections etc, but recently developing carpal tunnel syndrome (which can be exacerbated by low b12). I'd like to add systemic enzymes to my supps as they can assist with CTS.
Anyone know whether it's safe to take enzymes on empty stomach given possible low mucus protection in my stomach lining?? Any thoughts appreciated.
I think your best bet is to have a chat with your local pharmacist.
What frequency of B12 injections are you on? If you are having neurological symptoms they should be at least every eight weeks if you are in the U.K.
Do you know what your Folate level is? Folic acid and B12 help your iron to make red blood cells amongst other functions in the body.
I'm not a medically trained person but I have had P.A. for over 45 years
Thanks Clive for your reply. In my experience pharmacists (here in Oz) wouldn't know what systemic enzymes are. My b12 levels always come back pretty high and I only have an injection once ever 3 or 4 months. Tried activated folate (thought I had MTHFR issues) but just made me nauseous.
What I'm really curious about is how other PA sufferers have experienced their stomach lining ( eg with supplemental betaine HCL for low stomach acid and systemic enzymes) over the years? Chronic gastritis?? Pain in stomach area?? Stomach polyps etc. I personally find doctors hopeless but I do live in a rural area and Drs come and go a lot. Thanks for your thoughts.
My P.A. came about as a result of gastric surgery for a perforated peptic ulcer at the age of 17 in 1959 - I had two thirds of my stomach removed.
I don't think that the association berween gastric surgery and P.A. was generally known back then because all my surgeon advised was for me "get a sedentary job" which meant giving up my electrical apprenticeship.
I of course ignored his advice, finished the course and qualified but in my early twenties I found my energy levels depleting and in 1968 I was sent for a "Schilling" test which involved a huge injection and drinking radioactive B12 then measuring the amount passed via my urine. The test was inconclusive.
Ironically the B12 injected probably enabled me to struggle on for the next four years during which time I weaned myself of the Valium, Toftranil and Librium antidepressants I'd been prescribed, passed a government sponsored retraining course in accountancy and got myself a job as book-keeper for Rexel Limited (you may have one of our stapling machines).
Sadly, by 1972 my health was going down hill badly again and I was like a walking Zombie so was sent for a second (unheard of) Schilling test which this time proved positive for P.A. and I was given the option of eating raw liver three times a day or having a cyanocobamalin B12 injection every four weeks for the rest of my life. I opted for the injections and I'm still on them today only now every three weeks.
For nearly forty years from then I lived in total ignorance of what it was all about as I knew no-one else with P.A. and neither the succession of doctors and nurses (who gave me the injections) ever asked me how I was coping.
Ignorance is not bliss
Six years ago I was noticing a return of some neurological symptoms in the third and fourth weeks. My then "one size fits all" doctor told me it couldn't be anything to do with my P.A. because I was having the injections and refused to increase their frequency. So I joined the Pernicious Anaemia Society and on their then forum asked the question "Am I the only person with a return of neuropathy in tne run up to my next injection?" I was astounded by the response - no I was not alone.
I learned all I could and eventully convinced my doctor to increase the frequency and determined to try and be of some small help to fellow sufferers.
I do hope that you get some answers to your questions - I'm just sorry not to have been of any help.
I wish you well
Bonjour Clive,
L'anémie pernicieuse (PA) est généralement observée chez les personnes âgées qui n'ont plus le facteur intrinsèque dans l'intestin grêle permettant l'absorption de la B12. Chez les personnes plus jeunes, elle est généralement due à l'abus de médicaments utilisés pour contrôler l'acide gastrique. Il n'existe pas une telle chose qu'un excès d'acide gastrique, car l'acide est produit par des cellules spécialisées dans la muqueuse de l'estomac lorsque les aliments sont ingérés. Le problème survient lorsque l'acide se déplace dans des zones comme l'œsophage, où le problème existe. Les médicaments prescrits sont sûrs pour une utilisation à très court terme, mais une fois qu'ils sont pris à long terme, ils interdisent complètement l'absorption de la B12. Une fois les cellules détruites, il faut beaucoup de temps à l'estomac pour produire l'acide nécessaire à la digestion correcte des aliments. Vous finirez donc par avoir une PA et une multitude d'autres problèmes digestifs.
Vous pourriez également vouloir déterminer si vous avez des allergies alimentaires (comme le blé), car cela peut causer des problèmes d'absorption, en particulier si vous avez la maladie cœliaque.
Les antidépresseurs sont souvent prescrits aux personnes atteintes de PA en raison de vos symptômes, mais ils ont peu de valeur car il n'y a pas de dépression clinique présente.
Il m'a fallu de nombreuses longues années pour réparer les dommages que les médicaments contrôlant l'acide ont causés à mon estomac. J'ai toujours des niveaux de B12 bas, mais je suis capable de les maintenir à un niveau décent avec de la B12 orale.
Bonne chance.
Thanks for your comments Jace.
In my case fifty-seven years ago it was "too much stomach acid" which led to my having a perforated peptic ulcer at the age of 17 and the removal of two thirds of my stomach.
In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum.
Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend Vitamin B12 in the Ileum. Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.
Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".
In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.
The IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
I had a 13 year wait before I got the diagnosis and treatment by B12 injections for Pernicious Anaemia.now more than 45 years ago and I'm still "clivealive" at over 75.
I wish you well