Pernicious Anemia/B12

[Mumma02]

I've recently gained access to my blood test results via the NHS portal and came across a test result stating 'weak positive' for the Anti-Parietal Cell test which was done in 2017. This was never mentioned to me but I felt fit and healthy at the time.
Fast forward to now, since having my second child 20 months ago, I've been back and fore to the gp constantly looking for answers as to what could be wrong with me.
Symptoms that have developed (but come and go and never appear at the same time) are;
Overactive bladder
Pins and needles/tingling in hands, arms, legs and feet
Weakness in limbs
Pulsing in one ear
Tremors/shaking in hands
Breathlessness/air hunger at rest
Palpitations
Chest pain
Headaches
Fatigue
IBS symptoms (currently daily) diarrhea, sometimes constipation, foul smelling gas and lots of it Stomach pain, stabbing, unusual new onset
Nausea
Anxiety
Feeling faint/spaced out/not with it

My B12 in December was 360 but I have no idea if the test I mentioned above now indicates an onset of something? The only other thing which is chronically low is my Ferritin which dropped to 9 but I'm currently supplementing.

Does this sound like pernicious anemia? I'll obviously be checking the 2017 test result with my gp!

sounds similar to me but getting nhs to do anything about it has been impossible. I've managed to muddle through to improving my symptoms by supplementing with sprays high dose pills and paying privately for b12 injections although I can feel horrible if I miss even a few days of suppliments. hopefully your doctor will be better than mine when you raise it again!

Have you had any blood tests to indicate deficiency @Roundearth? Sorry to hear you are feeling the same. It's debilitating!

Definitely could be, they won’t do anything unless your levels drop below threshold though. My dad, aunt, gran and other family member have it so I was high alert for it. I developed symptoms and had low (but not below threshold) levels for over a year and just constantly told my levels were fine do it wasn’t it. I was sent down a chronic fatigue or depression pathway. I kept nagging for testing and eventually dropped low enough to be treated. Life changing!

Oh wow @Wobbitcatcher. What concerns me is this weak positive result I had 4 years ago?! I too have been told I could have CFS or anxiety...I've never suffered with anxiety until I had all these things go wrong with me!

@Mumma02 I was just 2 points above threshold for b12 so they claimed it was fine, but was below for ferritin for which they told me to take supplements for

Have a read of this link labtestsonline.org/tests/parietal-cell-antibody

My experience is of a GP being extremely black and white with test results 1 point over the threshold for b12 means fine, 1 point under gets treated.

I would definitely be on their case about it and look for a decline in b12.

I chose to avoid self/private treatment like pp because I wanted a clinical diagnoses.

They take more seriously the neurological symptoms such as numbness and tingling so make sure you emphasise that.

There’s a really good group called “pernicious anaemia society” based in Bridgend Wales. They can help you with getting drs on board.

my anxiety was getting really bad i thought I had "real" problems with it but after maybe 3 weeks of first trying the better you b12 spray (spraying at least 3-4 times the recommended dose) and taking feroglobin tablets it magically eased. didn't feel great having to try and figure out myself how to feel better.
there's a good Facebook group for PA though which helped more long term.

@Wobbitcatcher wow, that's literally 20 minutes away from where I live! I even had. Brain MRI at the start of the year because I was terrified of a tumor with the headaches and tingling but all clear. Even had nerve conduction tests, but again, clear! I don't want to have this...but I want to know that I'm not going mad and there is something actually wrong with me if that makes sense!

I had exactly the same symptoms which seemed to get worse after having DS1. I have since been diagnosed as coeliac, which was a total shock as the symptoms weren't clearly triggered by eating gluten.

Maybe try a gluten free diet to see if it helps? Certainly push with you GP but might be worth trying even to just rule out. I also take folic acid and iron daily and have b12 injections every 3 months.

I feel so much better than I used to even on a good day. I think I got so used to feeling drained it felt normal.

With anaemia and low B12 , any of those symptoms above, I would query Coeliacs disease. Might not be but worth getting it checked. My DH was losing weight, had terrible gut problems and a variety of symptoms plus anaemia. He has Coeliacs now.

Snap!

Btw, get a diagnosis before cutting out gluten. Unless you’re eating gluten the blood test won’t be accurate. The Coeliac Society is helpful and they have a website.

It’s not far from me either so we must be close by!
It’s really worth exploring because I had to drop out of a uni course and move home for a year as I was utterly unable to function. I then started treatment and within weeks got my life back. I now have injections every 6 weeks (which I’m extremely lucky to have as most are every 12)
But I can feel now that I’m due my next dose and I just have to push on to get to it.

I can now manage to work (a demanding but part time job) and I have 2 young kids but I live in fear of a relapse or them trying to reduce my dosage 😔

Yes op. Iv regularly commented on posts here about bladder problems. Iv had all the symptoms you say plus more. Iv always been folate deficient to and a bit low in ferritin. I discovered recently my b12 was really low. A couple months ago I was at a point I could not walk or get out of bed and the nerves had gone in my bowels. Tmi but poop was pouring out of me. I have been fobbed off with ibs or told nothing is wrong with me for years. I bought some b12 from Germany and started injections myself. I can now walk, I haven’t pissed myself or had bladder pain since and all my ibs symptoms have disappeared. Pins and needles gone and my hair is growing back and I no longer look like I have been taking heroin. Iv always suspected I have coeliac. Iv had blood tests and my iga is so low which I know can be iga deficiency. Like op above I had given birth when this started. I am still fighting for the correct treatment and diagnosis incase something is wrong and my children can be tested. No such luck! There is a PA group on Facebook it’s so helpful. Even has links to pharmacies that you can buy cheap B12 from. It’s been life changing for me

Have you had blood test and biopsy? That’s how Coeliacs is diagnosed.its important to get a clinical diagnosis.

Very good point @Baycitystroller about not cutting out gluten before tests are done - sorry that was bad advice on my part!

I had the blood test for celiac last year which came back negative but the Immunogloin IGA part of the test was out of range and high but the GP said this could be anything? I'm wondering what the weak positive anti-parietal test signifies more than anything...