Pernicious Anaemia Society
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Confusion over whether PA is just about hemoglobin or gastro parietial cells - how do you get diagnosed?

Hi,

I am rather confused as to how you diagnose PA - I feel I aquired it after a bad bout of SIBO where Ive already had long term low b12 (nerve damage) and my folate level was at 3.6 (Im taking methyl folate now) and my body ended up going into multi organ failure

My colon swelled up, as has my spleen, I was feeling sick to the pit of my stomach, wretching (my whole body felt like it was starving of oxygen) Ive worked out the nerves in my spine were on fire ergo being destroyed, so was my brain also on fire, my colon same, my blood pressure was through the roof, vertigo, the ability to swallow was going, as was to be able to breath

I went to A&E 5 times, 2 GP visits, 1 walk in health centre where 3 nurses said yr seriously ill but would not even call an ambulence, and instead forced me to leave

In the end I ended up self injecting b12 for the first time in the street, if I hadnt I know I would have died

My question is that I keep on being told that I cant have pernicious anemia, as my hemoglobin is fine/mid range, yet the above symptoms fit for PA

2. Does anybody know a PA/B12 literate doctor - my colon has sustained serious nerve damage, and has slowed down to a crawl and Ive lost my appetite

All Ive been given is a powerdered laxative, and thats it - I seriously worry that Im still got to die

Can anybody help me please???

Edit by admin: please use the 'chat' functionality if you want to provide names of doctors.

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there have been some scientific papers I've come across that have suggested (in relation to thyroid and PA) That SIBO might be one step in the development of PA - but SIBO is also one thing that can cause a B12 deficiency.

PA is another specific cause which is an auto-immune condition affecting absorption of B12 in the ileum. The effects on the blood (macrocytosis being the classic symptom) are secondary to the inability to absorb B12 ... and they are not present in 25%of people presenting with B12 deficiency.

Any GP can and should look at the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiency which they can find through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

Have you tried asking your GP to refer you to a gastro ?- no guarantee that they will know much about B12 and PA but it sounds as if those may not be the only things going on

Reply

Hi Gambit,

Am I to understand correctly that you can have PA, but without it showing up in the blood?

I ask this because all my symptoms fit PA including according to my neighbour, I was turning yellow, yet I keep on being told that oh yr hemogloblin is fine and yr not anemic

I certainly am aware that SIBO causes and is the reason behind my b12 deficiency, and why I also feel has now developed into PA

With regard to getting a referral to a gastro, that is a saga and a half in itself, and trying to deal with my very bad GP practise

I have had a recommendation from a Dr F (he's the only doctor I have ever rated as he never stops doing research and treats his patients with dignity and respect, and would take me on as an NHS patient, but he is all the way up in Stoke) about another gastro consultant at the Royal London hospital

Getting the referal, now that is another matter!

Kind regards,

Ania

Admin note: edited to remove name of medical practitioner per forum guidelines.

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Reply

I think the confusion is between the use of PA and B12 deficiency.

PA is one particular auto-immune cause of a B12 deficiency

SIBO is another potential cause of B12 deficiency.

The symptoms of PA are the symptoms of the B12 deficiency it causes

So it may not be the case that SIBO has become PA.

Hope you do manage to get a referral.

Reply

Hi,

Thanks but does PA only show up in hemoglobin?

Reply

PA is a cause of B12 deficiency. SIBO is the same.

B12 deficiency can affect the ability of bone-marrow to produce healthy red blood cells, leading to macrocytosis.

However, macrocytosis isn't present in 25% of people who present with B12 deficiency.

symptoms of B12 deficiency, whatever the cause include affects on a wide number of systems, the production of red blood cells, resetting neuro-transmitters, maintaining the lining around nerve cells. Its symptoms are very varied and affect different people in different ways. The mechanism that causes the B12 deficiency - dietary, PA, or other - doesn't make any difference to the effects.

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