Success — Short-lived

[SMXX]

Drs appointment today following 2 weeks of every other day injections... said he’s stopping them due to neuro symptoms and won’t have another for 2 months!! I explained that in the BNF book states until no further improvement... did not listen at all !! I said I felt really worried and anxious about the length of time ... he said you’ve got stacks in your system you’ll be ok!!!!

He gave intrinsic factor result of negative (been on injections- shouldn’t have been tested) I said that it will give false results due to the injections he said no it won’t !!

I’m overwhelmed with their lack of knowledge and acceptance of our research of there own guidelines that they take no responsibility for their irresponsible actions !!

Sorry to rant I’m so annoyed !!

He said to come back for a chat in 2 weeks !! I’m tempted to see another doctor in the practice for a twelve opinion!!!! Rahhhhhh 😤

[clivealive Forum Support]

Did you prepare a list of your symptoms to give to your doctor showing which had improved and those which hadn't? Also is it possible to take someone with you to the appointment as the doctor will be less likely to pooh pooh you in front of a witness?

I am not medically trained and I wish you well.

[SMXX]

I went through my symptoms and that no improvement has been made, he just wasn’t getting it at all ... didn’t listen to anything I said ... I’m making a telephone appointment tomorrow to discuss with another doctor who gave me first injection... I’m not giving up !! Thank you x

[wedgewood]

In the post from Cherylclaire , above yours , her consultant , who was very knowledgeable about PA , suggested having IFAB tests until one came up positive. That’s what you need . . Because the test isn’t reliable , it can take a few goes apparently . But it will be difficult to get that from NHS I guess . You could get tests from private labs , but I can’t imagine how much that might cost . Once you have a positive result , it’s the proof that you need .

Have just looked up cost of IFAB test with Medichecks — £79.00 plus cost of venous blood withdrawal .. £25.00 So thats quite an expense ! I don’t think that I’ve helped you very much .

I would feel like changing doctors . . Glad to hear that you are persevering . Best wishes .

[Gambit62 Administrator]

you may have more success from writing a short letter,copied to the practice manager, and quoting relevant information from the BCSH standards which you can find here

eg around accuracy of the IFAB test and the fact that the standards refer to IFAB-negative PA as a result.

Testing too close to an injection can cause a false positive. How close is too close varies depending on the exact test method - maximum is 10-14 days. Minimum is 24 hours.

[Sleepybunny]

Hi,

"I explained that in the BNF book states until no further improvement... did not listen at all !!"

Might be worth putting what you want to say in a letter to GP. I think letters are less likely to be ignored.

You could include a quote from BNF that states this.

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

[fbirder in reply to Sleepybunny]

Quote from BNF is here - medicinescomplete.com/#/con...

I would print out the whole entry and highlight the relevant bit.

[wedgewood in reply to fbirder]

I would love to access that entry , but can’t find how to do it .

[fbirder in reply to wedgewood]

Ooops! When I registered you could get an account as a private individual. It looks as it that's no longer possible.

[wedgewood]

A shame !

[Sleepybunny in reply to wedgewood]

HI,

For anyone else following this thread...

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

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.

Both these tests can be unreliable.

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.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Mentions that it is possible to have Antibody Negative PA, where IFA result is negative.