Pernicious Anaemia Society
14,640 members10,432 posts

How do I get to see an expert?

I am so frustrated by NHS doctors that I may never go back. I have just been told that if I had pernicious amaemia the intrinsic factor anti body test would be positive. I pointed out that 50% of people with it dont have a positive test and I was told that the test is 100% effective and negative means I do not have it.

I am using patches and although I still have bad days I am feeling myself returning to normal, I no longer yawn for half the day, I have begun laughing again, I am much much more motivated.

I just want to see an expert who can diagnose and then advise on treatment because I do have memory and balance issues so hope to get as well as I possibly can with help.

9 Replies

Are you on the normal maintenance regime for B12 deficiency or are they refusing this because of the IF?

There are a number of things that can cause problems absorbing B12 - not just PA if they are saying that you don't need maintenance doses because you don't have PA then they are being doubly negligent.

I don't have any recommendations of specialist that you can see - some people have gone to 'specialists' and actually got nowhere even when going private so it could just be a waste of money.

Personally I think trying to find out for sure what is causing the absorption problem could be a journey in to madness. There is also nothing to say that there can't be 2 absorption problems going on.

I would strongly recommend that if you haven't already joined the PAS that you do so. If you are a member then make sure that you have the right level of membership to get access advice and support - not sure which level that is as I am a legacy member - and then contact them.

This recent blog tells you how the process of educating your GP can work.


No treatment planned hes waiting for B12 test results but I have had one injection and using patches (which I did tell him about). So I'm not sure what another B12 test will prove?


Does your doctor say you have a B12 deficiency? If so, he should treat the deficiency regardless of the cause. Once treatment has started - then he can discuss whether you have PA or not.

If you do have a deficiency.

Download this paper - print it and highlight the section on p7 where it says....

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 bNegPA).

And the bit on p2 where it says...

In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment

Then send it to your GP with a covering letter saying that you want to start treatment according to the relevant entry in the BNF.


Thanks I will do that.


Like Gambit62, I think it might be helpful to join the PAS. They are helpful, sympathetic an a good source of info.


PAS tel no 01656 769 717

page 8 section C BCSH Cobalamin and Folate Guidelines gives details of UK B12 treatment.

page 29 is a diagnosis flowchart that shows the recommended process doctors should use when they have a patient with suspected B12 deficiency. It also mentions Antibody Negative PA (PA where the IFA, intrinsic factor antibody, test is negative) so perhaps your GP would find this page helpful.

I gave my GPs a copy of the whole BCSH Cobalamin document plus a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with current UK guidelines.

See 5th summary point in link below.

Are you symptomatic for B12 deficiency? One thing I did was to tick all my symptoms on the PAS Symptoms Checklist and give a copy to GPs.



fbirder has compiled a useful summary of mainly UK b12 documents. I have found this very useful when faced with medics who don't understand B12 deficiency and take a copy with me to appts. Link to his summary in third pinned post on forum also link on his profile page.

I think it's possible that your GP might be using local NHS B12 guidelines rather than the BCSH Cobalamin and Folate Guidelines. it might be interesting to get hold of the local B12 guidelines for your area of the NHS, internet search, search on local NHS website or FOI (Freedom of Information) request to local NHS website. Some of these local B12 guidelines have not been updated since the BCSh Cobalamin document came out in 2014.

I am not a medic just a person who has struggled to get a diagnosis.

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Hi, thanks for the info. I have over 75% of the symptoms and took my check list to my appointment, as soon as my doctor saw i had a printed sheet of paper he said abrutly: "I know what the symptoms are" but never went on to ask me what my symptoms are. I think I may need to see another doctor as he is unwilling to listen to anything I have to say including my symptoms.

I will give all info to my next doctor first visit.




Some people find it more effective to write letters perhaps prior to an appt. as this may be less confrontational. Some Gps sadly do not respond well to having their decisions queried..I have personal experience of this.

My understanding is that letters have to be filed in your medical notes so I guess if a ticked list of symptoms is part of a letter it would have to be filed.

Link about writing letters to GP if unhappy with treatment. It does not mention the BCSH Cobalamin and Folate Guidelines which I would mention if I ever have to write letters about B12 treatment.

If you are a PAS member , they can sometimes intervene on members behalf if they are struggling to get correct treatment. See link for examples of how PAS can help. Comments underneath are interesting to read as well.

Do you have someone supportive and willing to stand up for you,who you can take with you if you have to see this GP again? Sometimes medics are better behaved when there is a witness present.

1 like

Apologies I missed your post. Thanks for your suggestions, good to know letters have to be filed. I now have an appointment with a Haematologist in December, hopefuly that will be more fruitful. I am still after a diagnosis at this stage but obviously want real evidence that I actually have or dont have PA.


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