Can instrinsic factor antibodies show twice

[Thorpe1984]

I previously showed antibodies for instrinsic factor, I was then prescribed b12 injections. I have a new GP and he wants to re test for antibodies before referring me to a specialist. If I had b12 injections 6 weeks ago will bloods still show antibodies? Thanks

[2FloorLuka]

You don't have to be tested again. There is a good chance (50%) to have a negative Intrinsic factor antibody test and if it happens they might suspend your treatment. Since there is no cure to PA and you have the "Golden standard test" to prove you have it, ask to be treated according to BNF guidelines, that don't include New testing.You are the only one who have something to lose. If it shows negative this time, you will have to fight to reinstate your injections and to convince the doctors that, despite of this result, you do have PA. If its positive, well, it will just give you the right to have injections.... that you already have.

Tell The doctor there is no need to be tested again and to save NHS money. PA is a lifelong autoimmune disease and there is no cure for it. ((Hugs))

[Thorpe1984 in reply to 2FloorLuka]

That’s my biggest fear it will come back negative and they will stop treatment with b12, have requested to speak to Gp about it today but I won’t hold my breath! They just don’t seem to understand it at all! Thanks for your reply

[wedgewood in reply to Thorpe1984]

You are right , they do not understand P.A . It is unfortunate that the antibodies do not show up fir every P A patient . In fact it’s about 50% . The anti bodies seem to come and go . You have tested positive once for the antibodies . You therefore have PA for LIFE ! You do not need to be tested ever again . When i hear about money being saved - I am totally speechless ! The needles , syringes and ampoules are very cheap . An injection costs me about £1.50 ( and the practice can surely obtain them cheaper than me, a private individual ) Then there is 5 minutes of the nurse’s time What is behind all this ? . If you go without your injections , you will become very ill, and could cost the NHS huge sums , and you would have no quality of life . It’s not called pernicious for nothing . It is also acknowledged that often P. A . patients do not show the intrinsic factor antibodies.

As the injection itself is so cheap , I assume that it’s the nurse’s salaries that the practices are trying to save on , as that comes out of their overall budget.

[Bellabab in reply to wedgewood]

I think you may have made a significant observation there. I am also convinced that the reason that PA takes a long time to show up is because the antibodies come and go. I had all the symptoms when I was 30 for a couple of years - then I was fine for 10 years and then had periods of symptoms until I collapsed and was rushed into hospital close to death when I was 70. Even if this happens treatment should continue for life.

[topazrat]

I had a positive I.F. before starting injections. For some reason, my doctor repeated the test a year later and it was still positive.

[Thorpe1984 in reply to topazrat]

Why did they repeat yours? Thanks

[topazrat in reply to Thorpe1984]

Who knows! Maybe the doctor thought that I would be magically cured once I started injections. Of course that won't happen just as VellBlue has described below. The Doctor who owns the practice wasn't too happy to find that the test had been repeated, as it is quite expensive to do.

[Thorpe1984 in reply to topazrat]

I just don’t get why GPS know nothing about it!!

[topazrat in reply to Thorpe1984]

I think the clue is in the term 'General' practitioner. They know a little about a lot. I was lucky that I did have a G.P once who acknowledged that I knew far more about P.A. than she did, but unfortunately, she left and the rest are not only clueless, but won't accept patients telling them so 😉

[wedgewood in reply to Thorpe1984]

i have private ideas about it which i cannot air on a public forum .

[lynxis in reply to wedgewood]

😆

[VellBlue]

If you were tested and had IF antibodies that means you have PA, which isn't something that goes away or gets cured and your immune system will continue to produce the antibodies. You are having B12 injections just to get around the fact that you are unable to get B12 from your diet, it won't change the IF antibody status.

I know I'm repeating what others have said here, but your doctor sounds like he may need to hear it a few times! Unless he has reason to think there was some issue with the quality of the previous test, why test again? What a waste of NHS resources. 🌼

[Thorpe1984 in reply to VellBlue]

No it was a genuine blood test, I have just changed my GP and he wants to check if it’s same before referring to specialist, I had loading doses a few months back. Thanks for reply, sounds promising

[Gambit62 Administrator]

Point your GP to the BCSH standards that can be found here and the section on the IFAB testonlinelibrary.wiley.com/doi...

Anti-intrinsic factor antibody (anti-IFAB)

The finding of a low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). In addition, the positivity rate increases with age (Davidson et al, 1989) and in certain racial groups [Latino-Americans and African-Americans; (Carmel, 1992)].

There isn't any point in repeating the test if you already have had a positive test

[Thorpe1984 in reply to Gambit62]

Does it mean it’s 95% accurate? I feel like these things only happen to me! I am going to have to ring in the morning and somehow persuade him not to re test me! I’m losing a huge amount of hair so need some bloods done!

[Gambit62 Administrator in reply to Thorpe1984]

It means it is very unlikly that you don't have PA if you have a positive result - which, historically you do.It also states quite clearly that a negative does not rule out PA.

As you already have a positive that means to me that it is a waste of money to repeat the test

[Thorpe1984 in reply to Gambit62]

Crazy isn’t it that they want to waste money when the NHS is on its knees! It’s so frustrating! I don’t want the dr to think I’m being patronising but it’s my future at stake and with 3 young kids it feels so hard to cope at times! Thanks for your help

[VellBlue in reply to Thorpe1984]

Just tell him gently that you want to understand why you need to have the test again, as you had understood that if it showed positive for IF antibodies then you have PA and that's for life. You'd heard the test gave false negatives, but not false positives, so you didn't think there was any issue with the test and that you'd need to have it again. See what he says.

[Thorpe1984 in reply to VellBlue]

Can’t even get through to a dr 🤦‍♀️ This is what he has requested…Have asked if the b12 and antibody test can be removed! Feel like I’m losing the will to live 🤦‍♀️🤦‍♀️🤦‍♀️

[Thorpe1984 in reply to Thorpe1984]

Here’s what he’s asked for

Light green

[2FloorLuka in reply to Thorpe1984]

I don't know how it works in the UK, but in my country they can only test what I authorize. So even if my doctor has requested a list of tests, the nurse is only going to take my blood for those that i didn't oppose to. Its a very simple and informal procedure. The test that i didn't want to run will disappear of the system and later i will have to explain my choice to the doctor. My body, my choice. Never had a problem.

[VellBlue in reply to Thorpe1984]

Love how they don't even name you!

You can always email back asking why the IF antibody test is needed again as you don't think it is needed.

And if they want to waste money and do it again... it's not really an issue unless it happens to come back negative this time and they don't understand that that would be a false negative given the previous positive. 🤷I wouldn't put it past them. It seems all the GPs are so over stretched, that even if they were the type to hear your input you are not going to get the opportunity to give it any more!

[Readdaily]

Please don’t despair. Things will work out fine. Just stand your ground and present your medical-based argument. If necessary, put it in writing using the information above. As others have said, they’re just clueless. You mentioned hair loss—have your thyroid levels been checked? Once you have one Autoimmune disease, unfortunately many times others will follow. I started losing hair and within a month of being diagnosed with Hashimoto’s, I was diagnosed with PA.

[Thorpe1984 in reply to Readdaily]

Thanks so much, he is now going to test thyroid, I have suffered hair loss before with iron deficiency so wondered about that too? What other symptoms did you have for thryroid? Thanks

[PamBow in reply to Thorpe1984]

Not sure if I am saying this correctly but from what I understand hair loss can be contributed to from low levels of ferritin and folate. I suffer from terrible hair shedding and I am hypo thyroid on 75mcg of Levothyroxine……also on 3 monthly B12 shots. Suffer Vit D deficiency as well. This site is excellent and I am sure you will be given excellent advice,

[Sleepybunny]

Hi,

Have you accessed your medical records to see if they wrote down that you were diagnosed with PA previously.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Are you a PAS member?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful articles.

pernicious-anaemia-society....

Perhaps you could suggest your new GP looks at page on PAS website for health professionals.

pernicious-anaemia-society....

Testing for PA (PAS article)

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Gastrin test

labtestsonline.org.uk/tests...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I suggest you consider putting any queries about treatment/diagnosis into a brief, polite letter to GP and maybe copied to practice manager. I think it's harder for them to ignore.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(from Dutch b12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Might be worth looking at my detailed replies on forum threads I've linked to below...

They have lots of B12 info which you may find useful eg symptoms and causes of B12 deficiency, B12 books, more B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered for years from unrecognised B12 deficiency.