B12 mystery

[Elleeee]

Hi I’m 20 years old and was first diagnosed with a dangerous b12 level of 70 when I was just 18 after a full blood count. I asked for this due to feeling ill and sick for months nothing else showed up on the Fbc apart from very low b12. B12 deficiency does not run in my family. Neither am I a vegetarian. I have been tested for pernicious anemia twice, both results came back negative. I have been having injections for 2 years now, no one has found out what caused this deficiency. I have no eating disorders and have a healthy balanced diet. So confusing.

[Cb1963]

It is a mystery especially while you are so young, stomach issues can cause lack of absorbtion B12, also certain stomach medicines can upset the acids in the stomach, omeprazole, etc, and stress can be a factor I believe, I'm still learning alot myself about this condition, it's a very sneaky health condition, it causes numerous problems, I never thought that lacking B12 would cause so many different issues, hopefully you'll be able to keep on top of your health,the list of symptoms that revolves around this deficiency is numerous, and even trying to get the right balance can be a bit of a task, I'm sure you'll get some more input from the more established members on this forum, good luck and if you are stuck with anything regarding symptoms give me a shout, thanks.

[wedgewood]

You most likely do have PA . Those tests for it ( Intrinsic Factor Antibodies test ) are notoriously inaccurate . There are various theories as to why , but nothing is proven . A doctor should know this .The founder of our society tested negative for PA , although he definitely has it . Good that you are getting the injections . There is a medical expression for that condition , which others might know . PA does not have to be genetically linked , although it often is .

[Gambit62 Administrator]

the IFA test is notoriously insensitive and gives false positives 40-60% of the time so a negative doesn't rule out PA as the cause. An endoscopy could help as this would show up if there is any of the characteristic damage caused to the ileum.

There has never been a formal diagnosis of PA in my family either but then B12 deficiency is often missed or misdiagnosed. Looking at my father's medical history and how many of the problems I've had over the years were also ones that he developed I suspect that there has probably been missed diagnoses on that side of the family because it can just develop so slowly and is so easy to put down to getting older. My brother occasionally tops up his B12 with a nasal spray and that helps with some of the issues he has but also has no formal diagnosis.

Nobody is actually sure about the genetics of PA - observation is that it runs in families but that isn't always the case