Doctor appointment on Thursday

[ickyrocket]

Hello.

Just recently diagnosed with PA (I have the antibodies). I also have Graves disease. I completed x6 b12 loading doses on 1 Feb and booked in to get my first three monthly b12 injection on 1 May. In-between this time I've had an iron infusion (ferinject) my level was 6 (15-200). I'd been on iron tabs for years but not making a difference.

I got my bloods taken two days ago - iron, b12, and full blood count - and I have doctor appointment on Thursday to discuss the results (not got them yet).

My worry is that the doctor will see that my b12 has increased (and now within range) since the loading doses and may tell me I'm not to get b12 injection on 1 May. I remember reading on this website where this has happened to some people.

Can anyone give me some short advice what I can say to the GP if he suggests my b12 is normal and I'm not to get injection? In case I need to challenge this. Of course, it may not happen but I want to be prepared in case it does.

My main symptom throughout all this is fatigue. If I could get that sorted I'm sure I would feel normal again.

Thanks for your time.

[Gambit62 Administrator]

BCSH guidelines are that further testing of B12 levels isn't necessary post loading shots and that if the problem is an absorption problem such as PA - and with Graves the probability is quite high that the problem is auto-immune such as PA - the maintenance injections should be for life.

GP can access through the BNF

onlinelibrary.wiley.com/doi...

If IFAB test was done and came back negative that is a long way from demonstrating that you don't have PA - as the guidelines say IFAB isn't a sensitive test and gives false negatives 40-60% of the time depending on the exact test method - result is that the guidelines actually refer to IFAB-negative PA which needs to be treated by injections for life.

The injections put an enormous amount of B12 into your blood and it then stays there until your kidneys remove it - how long this takes varies from individual to individual - on average hydroxocobalamin is retained for 2 months. Serum B12 also measures what is going on in your blood - which makes it an okayish test for diagnosing an absorption problem - but useless as a test for measuring how well your cells are using B12 - and that can be very different after loading doses.

There are also some materials on the PAS website that may be useful - and some are specifically aimed at helping health professionals improve the diagnosis and treatment of PA. You could suggest that your GP takes a look if they start saying that your levels are now okay and you don't need further treatment.

pernicious-anaemia-society....

[ickyrocket in reply to Gambit62]

Hi Gambit62. Thank you for this information, exactly what I was looking for. My IFAB test came back positive.

I'll have a good read over this in preparation for Thursday's appointment. Thanks again.