NHS PA Testing ??

[rockinHippy]

Hi, I'm new here & would be grateful for any help as I've just got back in from a blood test appointment.

Back ground...

Huge amount of PA in my family, both sides to a degree, but a lot on my Dads side. I'm also vegetarian, suffered undiagnosed H.Pylori for years etc etc.

I have suffered some degree of health problems all my life, but took very ill after a series of events some 13 years ago, this included having my daughter, ton of stress, over working myself & menopause not long after.

Looking at PA recently I see that loss of blood & Gas & Air can be triggers - is that correct?? - if do it fits me to a tee as I spent a week in hospital after having my daughter, due to blood loss.

I asked my GP about PA back then on the suggestion of my cousin - Things got really bad, but I was fobbed off by this GP, refused testing & told I was stressed, later diagnosed with fibromyalgia & M.E., which she made clear she thought were mental illnesses. (Grrr) Also chronic migraine, which all of my weirder symptoms such as odd hallucinations, vision trouble, numbness, tingling, tinnitus & more were all blamed on.

I think I probably have had my B12 tested over the years, but I'm not sure. That GP thankfully left the surgery & others have been better, but not so good at diagnosing - pretty much done that one myself for my self & my daughter, but at least she has listened I suppose.

I now have Ehlers Danlos Hypermobily & Hypoadrengenic Postural Orthastatic Tachycardia added to the list & my CKD has worsened, Gall Stones etc added too, but no idea if there's any link there.

I recently found out that POTs can be a symptom of PA - is that correct?? This was at a time when I'm under a lot of stress & I've had a very bad flare up of the same swollen, painful tongue, throat, gums, neck glands & more. This has been going on since Xmas - my POTs symptoms of breathlessness, heart racing, feeling jumpy, phobic, burning legs now reach up to my thighs, numb soles of feet etc etc

Seeing my GP about this lead to blood tests - but when I asked for copies, turns out she tested for iron deficiency Anaemia & glandular fever - another test that I forget the name of - maybe LDR ?? - came back as borderline & I need a retest. Looking at what this test means - seems it's a marker for various things, including heart failure, cancer etc, but the one that jumped out at me, was PA.

Ive had a very bad, pretty scary weekend with my heart going crazy, went back to see the GP I could get in to see who confirmed my heart rate was way too high & asked that despite struggling with side effects, that I go back on the Bisoprol to slow it down as she was worried. I asked about PA - she was very interested & said I definitely needed testing - said she would add it onto the list of my repeat test today, but to remind the nurse just incase.

I've just had the blood tests, took along my iPad with the tests listed on here - B12, Folate etc where all to be done & she did know about it - but no IF test - she looked at the list of tests she can do & turns out it isn't there ??

Is the IF test not a standard test, or did I ask for the wrong thing

Thank you

[Gambit62 Administrator]

a) PA is one absorption problem that can cause a B12 deficiency.

b) low stomach acid is another absorption problem that can cause B12 deficiency

c) the symptoms you refer to are the symptoms of the B12 deficiency caused by the absorption problem

d) there are other absorption problems

e) Nitrous Oxide (gas and air) is a super-oxidiser of B12 - basically makes it useless. If you have an absorption problem and this happens you will immediately experience B12 deficiency as your body won't be able to replace the B12 that you have 'lost' with B12 from your diet.

Nitrous Oxide does not trigger PA - but it will accelerate the the deficiency caused by the absorption problem

f) PA is an autoimmune condition in which the body produces anti-bodies that destroy either the cells in the ileum that absorb B12 (parietal cells) or the binding agent (IF) that allows them to absorb the B12.

g) Unfortunately the test for IFA is at best 50% accurate

h) generally it isn't done when B12 levels are checked but as a follow up test to try and establish the cause of a deficiency. However, given how inaccurate it is I'm not sure how much use it really is.

i) a heavy bleed causes anaemia (basically a blood abnormality). It doesn't trigger pernicious anaemia. Ironically anaemia can mean heavier bleeding.

j) One of the symptoms of B12 deficiency is anaemia - particularly macrocytosis - large deformed red blood cells that have a lower surface area to volume meaning that they are less efficient at absorbing and transporting oxygen - the main function of red blood cells.

k) a B12 defiency can result in heavier bleeding. It can also lead to irregular and even absent periods.

[fbirder in reply to Gambit62]

Just to clarify...

The Introinsic Factor AnTibody test is worth doing. Indeed, the NICE guidelines recommend it. If the results are positive then it's fairly certain that you do have PA, if they're negative then you may still have PA.

[rockinHippy]

Thank you both so much

Gambit62 that makes a lot of sense - thank you for taking the time & trouble to write all of that

i was a bit puzzled the nurse said it wasn't listed as a test at all, & she did check, but at that stage seems from what you say I was jumping the gun

I got my results back yesterday - "normal, no action needed"

I picked up a print out of the figures today & if I'm understanding correctly, there's nothing "normal" about it at all - looks like I have another fight on my hands with my GP - I will ask for opinions in another post as that looks to be how it's done here

Thanks again