Active b12 levels normal - can it still be PA??

[Suffering_sunny]

Hello everyone,

I am wondering if you can have normal or high active b12 levels but still have pernicious anemia?

[Narwhal10]

Hi Suffering_sunny,

I am so sorry as having difficulty following your individual story. From your last post you wrote your Vitamin B12 levels dropped from 550 to 280 mg/L. Have you ever taken supplements or had injections then retested to normal or high active b12 ?

Or did you undertake a private active B12 level ?

I totally appreciate the being super sporty to a disintegrating body. Plus being ‘fobbed off’. I actually put in writing to a doctor, If I was merely depressed I would do sport.

There are the Intrinsic Factor test, methylmalonic acid (MMA) and most of us do what we have to. 😉

[Suffering_sunny in reply to Narwhal10]

Yeah serum was 550, dropped to 280 after being on oral supplements for 3 weeks!

Active got tested 6 months later by another GP, as this is still ongoing... and the active came back mid-range...

But I wonder if, just because it is in my blood, even in active form - I still don't think its right...??

Found a private Dr now who looked over my bloods and thinks I may benefit from b12 injections and taking iron too (ferritin is at 40)

There just can't be anything else that could explain this, in my eyes, because other neurological disorders don't tend to stop periods and stuff.

I have to wait a few weeks to see next GP, and I feel I am end-stage now, like can barely walk on top of the rest, and weight just falling off my little frame.

It's scary.

[Narwhal10 in reply to Suffering_sunny]

I am very sorry to learn. Please learn about this poorly understood disease. Read Sleepybunny’s informative posts. Join the PA Society. The oral supplements are skewing your results. This is about symptoms.

Great you have a private doctor. Have you been tested for Coeliac Disease ? H.pylori ? Small Intestinal Bacterial Overgrowth ?

Is there any Family History of Autoimmune Diseases ? Know that there is a long list of misdiagnoses. Find out what they are and you may be surprised learning of other family member’s Health. Clivealive recently posted Sally Pacholok’s video from YouTube. Could it be B12 : An Epidemic of Misdiagnoses.

Many of us have been in the same position as you. It is a journey and we will help you through. Sporty people know when to dig deep, grit their teeth and flow with the waves. 😉