Advice please :(

[Icymind]

Just spoken to my dr regarding my intrinsic factor antibody test result to be told "it has come back as negative so that means I definitely don't have PA" I asked about the test being flawed she dismissed this and said "you definitely don't have PA because the test was negative and your not even aneamic"? What do I do now?

[wedgewood]

I'm so sorry about your experience . The doctor is showing her ignorance .First of all even if the IF test is negative , you can have P.A. Also you don't necessarily have to have anaemia if you have P.A. The name of the condition is truly a misnomer. Someone will answer you with the references to those points which you can print out and take to your doctor .

[fbirder]

The British Committee on Standards in Haematology are the biggest brains in British Blood - so they know of what they speak. Here's what they have to say on the matter -

IFAB is positive in 40-60% of cases(Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).

You can find a link to the full article, along with other necessary info in my summary - frankhollis.com/temp/Summar...

It also contains this snippet -

However, it is important to recognise that clinical features of deficiency can manifest without

anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay

[Gambit62 Administrator in reply to fbirder]

Definitely show the information fbirder has quoted to your GP - does sound like they are overly reliant on test results and really need to start realising that they are dealing with patients and interpreting test results in the context of a patients symptoms - very true for B12 but also true for other conditions.

[xyz011 in reply to fbirder]

Sure liked the summary link....! Thanks!

[Jose651]

Hi Icymind,

This may sound harsh, but to answer your question, I would have to say, Get a different GP.

She doesn't know her arse from her elbow. 😔

J 🍀

[Secondchance]

Go back with BCSH guidelines

[Sleepybunny]

"it has come back as negative so that means I definitely don't have PA"

If you google "BCSH Cobalamin and Folate guidelines" page 29 is a diagnosis flowchart that mentions Antibody Negative PA (PA where the IFA test is negative).

The BCSH Cobalamin document makes it clear that it is possible to have PA with a negative IFA result. I gave a copy of the BCSH Cobalamin and Folate Guidelines to my GPs plus a copy of Martyn hooper's latest book which is up to date with current UK guidelines.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

Martyn Hooper, the chair of the PAS tested negative more than once on IFA test before testing positive. If you continue to have difficulty getting treatment from your GP it might be worth contacting the PAS. They can pass on useful info.

pernicious-anaemia-society....

[clivealive Forum Support]

"you definitely don't have PA because the test was negative and your not even aneamic"

Here's that word "anaemia" again straight from the mouth of a confused doctor.

[Icymind in reply to clivealive]

I'm so frightened to go back with information 'to tell them their job' I suffer with anxiety and it's already causing me panics

[Gambit62 Administrator in reply to Icymind]

sometimes it is easier to go with a friend if you have a friend who can support you. It might also be easier to write enclosing the relevant information first.

Unfortunately your GP is far from being alone in the level of understanding of B12, confusing it with anaemia (something like 30% of people present with other symptoms long before any anaemia starts) and not realising that PA isn't the only absorption problem that leads to a B12 deficiency.

you may find this site of some help

b12deficiency.info/b12-writ...

[Icymind in reply to Gambit62]

Thank you so much my mum would usually be my first choice but is under massive strain at the moment as my little nanna has only days to live. I will ask a close friend to see if she will come with me for support she knows me very well. I can't thank you all enough for supporting me on here especially as I'm limited to who I can vent with at the moment x

[deniseinmilden in reply to Icymind]

Hi!

My Dr didn't know about the IFAB test and said as I wasn't anaemic I didn't have PA but using the BCSH guidelines I still managed to persuade him to give me trials of jabs.

I didn't care what they called it, I just wanted the correct treatment to make me feel better!

When I got the jabs I got better; when I didn't, I rapidly got worse. I was referred to a neurologist who saw my improvement on daily jabs and wrote to the Dr to say "No change in treatment", but they still stopped them and I have to buy my own.

It is all a bit of a lottery and you can only try your best.

I suggest you use the BCSH guidelines to try to get an initial course of treatment. You could say how safe and relatively cheap it is and just ask for a trial.

If it makes you feel better be prepared to take your treatment into your own hands.

The anxiety is probably due to being B12d and if you get some treatment you should feel better able to cope / fight for it.

Good luck! x

[xyz011]

Join PAS, see hand out for heath professionals on PAS and had it to your doctor!!! Clearly explains how IF is not the tell tale TEST!

[Icymind in reply to xyz011]

Thank you I will look up that document as I'm already a member I joined to access more information

[xyz011 in reply to xyz011]

Look under heath professional part!

[Icymind in reply to xyz011]

Thank you 😀

[Sleepybunny]

"frightened to go back with information 'to tell them their job' "

Some people choose to write letters instead. My understanding is that letters have to be filed in your medical notes. I wrote polite letters in past expressing my concerns but didn't back my queries up with quotes from official documents so didn't get very far.

Link about writing to GPs.

The link below has ideas for letters. It doesn't seem to mention the BCSH Cobalamin and Folate Guidelines which i would certainly mention in any letters I wrote. fbirder has a summary of quotes from B12 documents that might be of use to anyone wanting to write a letter. link to summary on his profile page and in one of pinned posts on forum.

b12deficiency.info/b12-writ...

Unhappy with treatment?

nhscomplaintsadvocacy.org/

seap.org.uk/services/nhs-co...

citizensadvice.org.uk/healt...

HDA patient care trust

HDApct is a charity that offers free second opinions on medical diagnosis and treatment.

hdapatientcaretrust.com/

HDA tel no 0207 935 8366