Help please with diagnosing PA.

[Cn13]

Hi,

I have written a few posts before and have been delighted with the good advice received. To give background I have severe Iron deficiency anaemia which is being treated with iron tablets and Vitamin D deficiency. I was told on the phone in 2012 from my hospital following a blood test that I was anaemic because of Vitamin B12. I have just received my hospital records to check this blood test and the only results that are there are the FBC in which my HGB, HCT and MCH are all low. There is no serum B12 included with the results so am wondering if they did further tests that are not included. There is also a letter to the GP saying I am anaemic not iron deficient but no further explanation.

I now have a new GP who I told I was diagnosed with PA so he agreed to 5 loading doses and has also agreed with help from here to an 8 weekly injection. He wants me to go back and see him again with my proof from the hospital records. I'm not sure that what I have is enough to convince him to continue my B12 treatment.

Because of my symptoms I am convinced I have PA. So I want to be prepared for my next appointment. If he says my hospital record evidence is not enough should I ask for PA testing. Obviously the problem will be I have had the 5 loading doses now so results may not be accurate.

To me it seems my choices are insist on NHS PA testing, do private testing or give up on getting a diagnosis and start to self inject. I am just wondering what are the risks if I stop any supplements for 6 months before testing as I wouldn't want to do any permanent damage. My neurological symptom is numbness/tingling especially in my feet.

Please could you give me advice on what my next course of action should be.

Thanks very much.

[Foggyme Administrator]

Hi Carmel13n. I remember your previous posts...so...

You have neurological symptoms (which you do), it's not a good idea to stop B12 injections just so you can deliver the blood results that most GP's seem to rely on as the only reason to treat B12 deficiency.

In cases where B12 deficency is suspected and neurological symptoms are present...even where serum B12 levels are within normal limits - all the guidelines state that treatment with B12 injections should begin immediately.

So...your GP has reason enough to continue your B12 injections...whether you can provide the 'proof' of a PA diagnosis or not. (B12 deficency can have other causes too, so the question of PA or not PA is a bit of a moot point - the treatment for PA and B12 deficency (whatever the cause) is the same - B12 injections.

The fact remains that you were once told, by a medical professional, that you have PA. Not sure why the onus should be on you to 'prove' it...you can only provide what is contained in your records...and many here know from experience that these are often wrong or incomplete...or maybe the doctor at the time failed to do appropriate tests...but made the diagnosis anyway (no way of knowing).

So first, a starting point with your GP...an 'honest person' approach (to follow the simple approach you took before) something along the lines 'never heard of PA until I was told I had it....why on earth should I say I have PA unless someone told me I had 😄😄).

With regards to testing for PA...the IF test will not be affected by your B12 injections so long as you leave one week after the last injection before,you have it. One problem with the IF test is that it is only 50% accurate - it returns false negative results 50% of the time - so,you can test negative and still have PA. Positve results are reliable - 95% certain you have PA if positve.

Note: you are more likely to have PA if someone in your family has it - or some other autoimmune condition (thinking in advance of arguments to present to your GP, if they're needed).

It would help if you could post the blood test results that you had at the time the diagnosis was made (FBC - all results and reference ranges - and anything else that may have been done at the time). Sometimes it's where results are in the reference range that counts (even towards the top) and reading them all against each other is also important. Looking at these may help give us ideas about how to approach your GP - what arguments you can make to make to ensure that your GP continues trewtment. And we can also leave information and evidence that will support your arguments.

Also be useful if you can post any recent blood test results your new GP may have done (agsin, with reference ranges).

Will await results so that more focused advice can be given...and also be able to suggest ways to approach your GP (though perhaps tomorrow before being able to respond).

In the meantime, try not to worry (sometimes easier said than done 😖)...just enjoy the rest of the long weekend 😄.

Will await incoming...👍

[Gambit62 Administrator]

I was diagnosed as B12 deficient in hospital a few years ago - asked for my records but like you couldn't actually find anything by way of relevant results in the copies of printed records I was sent - suspect that the test results are stored electronically so weren't included.

I didn't have any joy from writing back but think that might be because I used an email address that wasn't monitored ... and never got round to actually writing back to ask specific question about B12 and if there were any electronic records of tests that were specific to that.

Looks like you will have to rely upon the letter to your GP and try to argue that anaemic without iron deficiency means an anaemia that isn't iron based and the most likely candidate for that is either a B12 or a folate deficiency causing macrocytic anaemia.

[Cn13 in reply to Gambit62]

Thanks very much to both of you for your replies. Happy Easter to everyone too. I am just doing a quick post now before my coffee kicks in!! I will do a much longer post later and post those blood results (I need my husband's IT skills with that bit). At least it seems I am closer to knowing what is wrong with me. I hope everyone enjoys their weekend and don't worry about not replying quickly Foggyme I will be patient. I think I only just escaped being in hospital Gambit62 this time but hope you are doing ok now. I am so grateful for your support it keeps the stress down a bit. Thanks

[UDEE]

Carmel13n,

In the U.S. B12 serum lab is a totally separate lab ordered by a physician. None of the tests you have listed provide data for a definite diagnosis of B12 anemia, which, if severe and chronic, could be designated as pernicious anemia. However, if a new doctor is willing to give you the shots and you can afford them (not covered by most insurance in the U.S.), you should probably go for it. According to medical research by the Mayo Clinic and others, you cannot overdose on B12; it simply comes out as liquid body waste.

Udee; pernicious anemia for 17 years with monthly cyanocobalamin shots.