Intrinsic Factor result

[Chickens44]

bit disappointing it didn’t come back positive., but I know they don’t always accurately reflect the underlying condition.It also means my pernicious anaemia could be due to long term use of PPIs rather than autoimmune gastritis. (By the way stopped PPIs in December last year) .

[Sleepybunny]

Hi,

Have you seen this diagnostic flowchart which mentions Antibody Negative PA?

stichtingb12tekort.nl/engli...

Have you had a gastrin test?

labtestsonline.org.uk/tests...

Thread about useful tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Sorry for short reply - I have an arm injury.

[Chickens44 in reply to Sleepybunny]

I haven’t had a gastrin test. As my intrinsic factor test has come back in range I doubt very much whether my GP will do more tests. It will be the same old answer, ‘it’s within range’! I am seeing an iron/b12 specialist next week anyway who is going to do some further blood tests, so not going to waste any more time with my GP on the subject, only to get dismissed again.

[Sleepybunny in reply to Chickens44]

Glad that you're seeing someone else.

[Sleepybunny in reply to Chickens44]

"It will be the same old answer, ‘it’s within range’"

Perhaps you could show GP the diagnostic flowchart I mentioned in other reply. It's from a document written by British Society of Haematology and shows when PA can be diagnosed with a negative (or normal range result) in IFA (Intrinsic Factor Antibody) test.

It's possible to get a private blood test for gastrin in UK. NHS GP may not accept result of private test but if it shows something significant then should nudge them to order same test.

Have you considered writing a letter to GP?

The link below has letter templates you can base your own letter on.

See point 5 in link below - for people who are symptomatic with normal range serum B12.

b12info.com/writing-to-your...

You might want to point out to GP that it's possible to develop severe neuro damage with normal range serum B12.

If you search online for "Turner SACD functional B12 deficiency" this will show an article where a patient suffered spinal cord damage from B12 deficiency with normal range serum B12. Might be worth passing a copy to GP.

"As my intrinsic factor test has come back in range I doubt very much whether my GP will do more tests. "

Maybe you could show GP next article from PAS or quote from it in a letter.

pernicious-anaemia-society....

Even if a letter doesn't change your treatment, it may be worth writing one to ensure your concerns are on file. This could be useful if you ever need to make a formal complaint. Letters to GP are supposed to be filed with medical records. Always keep copies.

Writing letters may irritate some GPs.

Blog post about being symptomatic with normal range serum B12.

b12info.com/your-serum-b12-...

In the end, some forum members find it easier to treat themselves.

[Chickens44 in reply to Sleepybunny]

Thanks. This is all very useful info. I am seeing an iron specialist next week for iron infusion and B12 starting injection and I think he will probably do a letter for my GP, so I will wait for this and do my own letter at the same time.

[Jo5454 in reply to Chickens44]

Hi Chickens44...hoping you got on well with the iron & b12 specialist and found them supportive...

[Chickens44 in reply to Jo5454]

Had a very good appointment with consultant in Cambridge! Looking forward to my journey to wellness now. Journey was a bit tiring but I managed. Unfortunately got stuck in traffic following an accident only 15 minutes from home, which instead took me 1 and half hours!

[Jo5454 in reply to Chickens44]

Pleased to hear yr apptmt went so well and it must've felt good to have somebody understand. That was unfortunate holdup after a tiring day.Wishing you well now you have the support you need...

[Noelnoel in reply to Chickens44]

Andrew Klein?

[Chickens44]

I’m confused - is this positive or negative?

IFA test

[topazrat in reply to Chickens44]

Its negative, because its within the normal range.

[Nackapan]

I woukd take that as good news .As if caused by ppis it can be corrected .

Early days

[FlipperTD]

Sorry to be picky, but I can't let this go. I spent over 40 years as a scientist in a pathology laboratory. When I read "but I know they are not always accurate." it raises my blood pressure, and that's not a good thing. The tests we use are accurate, but if the test doesn't give the result you were hoping for, it doesn't mean it's wrong. It's just not the result you hoped for. It's a bit like an exam at school. Not everyone passes. The tests we do are accurate. If they weren't then we wouldn't do them. The 'IFAb' test detects an antibody-like effect against intrinsic factor. Not everyone with PA has detectable IFAb. Around 50% never develop lab-detectable IFAb, and that's the way things are.

Pernicious Anaemia is a specific condition, and long term use of PPIs doesn't cause it. Megaloblastic Anaemia due to a deficiency of B12 secondary to failure to absorb B12 due to PPI use is another matter entirely.

Hope this clarifies things. Good luck.

[Chickens44 in reply to FlipperTD]

Sorry, bad use of words, I didn’t mean accurate, I meant it doesn’t always reflect the underlying cause. I’m sure the test was accurate. Hope that brings your blood pressure down a bit, I dont want to offend anyone. 🙏

[Jo5454 in reply to FlipperTD]

So can we ask is Intrinsic Factor something that can rise & fall please? I expect you were like me Chickens44 when I had one, I was presuming there's either none or any other amount would be positive...

[FlipperTD in reply to Jo5454]

We're talking about Intrinsic Factor Antibodies, ie substances that react with Intrinsic Factor and inactivate it so it doesn't support absorption of B12 in the terminal ileum. Antibodies can rise and fall in general. We can see this with antibodies in general.

In my professional experience, I never saw IFAbs do anything other than increase, but then again, we didn't routinely monitor them once we'd found them to be positive.

[Jo5454 in reply to FlipperTD]

Thank you FlipperTD,sorry for late reply. Yes,sorry, I meant antibodies. So its normal fir everyone to have a few then...no,guess once someone is positive you don't get opportunity or need to recheck later on...

[FlipperTD in reply to Jo5454]

Hi Jo5454

In my opinion it's not normal for everyone to actually have IFAbs, but it's more likely that they will get some reaction in the test. This doesn't actually mean they've got IFAb as such; just that there's a low grade reaction. That's the nature of the test, more equivalent to 'noise' in the system. I think reporting a number for such a test can confuse, especially when the test result is classed as 'negative'. I hope I haven't made this even more confusing!

[Jo5454 in reply to FlipperTD]

Thanks FlipperTD. No its not your explanation that’s confusing,it’s cleared up my wondering perfectly, it’s the nature of the test making the noise that’s the strange bit🙂 but good to know, one less ponder to ponder upon!

May we pick your brains on the other tests mentioned in links with b12, parietal cells & gastrin please?

[FlipperTD in reply to Jo5454]

I'll try to help. Ask away, and if I don't know, I'll say so.

'Noise' in this case is electronic noise, and it's about 'signal to noise ratio' etc. Imagine you're trying to tune in an old fashioned Analog radio to the Today programme on Radio 4. When you're off the station, you get 'background noise' hiss because there's more 'noise' than 'signal'. When you get onto the station, the signal more or less blanks out the noise and you can her the dulcet tones of the presenters. Something like that!

[Jo5454 in reply to FlipperTD]

Brilliant…thanks, am tuned into that now. My minds first thought- but isn’t it strange that the noise is shown in a number of small antibodies, but then guess not as it can only respond in that way as that’s what the test is required to do? As in if you’re tuning that radio in, it’s not going to give you a tv program is it, it’s going to give you what it can, which is interference background noise? Hope I’ve got it anyway! Many thanks…

[FlipperTD in reply to Jo5454]

The technology involved is impressive, in that it can quantify infinitesimally small quantities of stuff in microscopic quantities of biological materials. All that with precision. It still impresses me!

[Jo5454 in reply to FlipperTD]

It must never cease to amaze! A fascinating world to work in...thanks for your teachings...

[FlipperTD]

Not offended in the least. I understand exactly, but I'm falling into a bit of Lewis Carroll

“When I use a word, it means just what I choose it to mean — neither more nor less.”

Blood pressure has resolved, thank you! Better to hear from you than not.