is it me or is something missing …blood tests, b12 and vitamin deficiency, PA

[Dislancas69]

Having been reading other members bios and posts

So many things have been wrote ring true to my life -and members of my family how do we really explain how we were active beyond belief ,and my relaxing was active and I personally wouldn’t wanted it any other way

This is all horrific how we are sent home by the system after seeking help -swap active for bed ridden fatigue exhaustion and numerous symptoms

Nothing or no one in place to think wow..there’s more to this persons illness than we can understand in a gp surgery for a 10 minute appointment - there’s definitely something missing in this system we need tests to check it’s not a deficiency or even for some it will never show up on bloods until something life changing irreversible happens

…we are all saying the same things beyond the menopause or one of the abbreviated medical conditions ( I may be wrong ) they waste time and money on all over the world not just our system

sending everyone as I have to separate specialists getting different life changing abbreviated diagnosis’ (some of which are guessed with how you described your personal symptoms and there is no real test )even waiting for more symptoms so you can add a few more abbreviated letters to this nightmare or be misdiagnosed altogether

still not looking to a underlying issue mostly b12 or a deficiency of some type which could have stopped some of these diagnoses in there tracks so people may not go on to have such life changing issues

Surly this would save so much money or am I missing something

this forum is wonderful , but for me something else …I feel I’m getting it ,I should have took more interest in them on social media ,copy and pasting when my children and now grandchildren are reaching young adults even watching them using there thumbs on there phones …it could have saved my index finger so much work 😂

Everyone is helping me so much just by being here ….thankyou

[Sleepybunny]

Hi,

I can relate to many of the things you have said Dislancas.

"This is all horrific how we are sent home by the system after seeking help -swap active for bed ridden fatigue exhaustion and numerous symptoms"

I lost over 15 years of my life to undiagnosed B12 deficiency, saw many specialists and only met one who thought B12 deficiency was a possibility and even then didn't get a diagnosis because serum b12 result was normal range at that point.

Only dogged persistence kept me going and I've been left with a degree of trauma due to some bad experiences.

I don't have a PA diagnosis and while I think Antibody Negative PA is a possibility in my case, I now suspect I have some issue with metabolising B12 or co factors such as folate.

BSH (British Society of Haematology) published a guideline in 2014.

Their guideline has been superseded by NICE B12 deficiency guideline but in some ways I preferred the BSH one.

You can find it online if you search for "Wiley BSH folate cobalamin".

Maybe you could see if PAS can post your story in PAS Personal Stories.

pernicious-anaemia-society....

Or maybe leave your story on this UK health review website - Care Opinion.

careopinion.org.uk/

They want people's good and bad health experiences.

If you put "B12 deficiency" in search box on their website it should show relevant stories.

Sometimes GP surgeries and hospitals etc respond to these stories.

[Dislancas69]

thank you it’s really appreciated …. really am sharing the passion with you …for this ridiculousness

[Sleepybunny in reply to Dislancas69]

The only way I coped with the anger I felt was to try to stop the same thing happening to others....these days there's less anger and more wistfulness.

Thought you might be interested in this thread I started.

Raising Awareness of PA and B12 deficiency in 2025

healthunlocked.com/pasoc/po...

[Cherylclaire Forum Support in reply to Sleepybunny]

Hard enough to explain how difficult life becomes to those close to you, those who know you. You do initially expect GPs to have a better understanding of the consequences of B12 deficiency - can be very lonely to find out they often don't, either.

Finding this forum is such a relief. People who get you, because they have experienced the same. Just like Nackapan 's neurologist !