Is it my PA or something else

[Moosey]

I had my three initial injections earlier this year, and tomorrow i will have my three month blood test. After the initial 3, my levels went up slightly so my GP decided that was okay but booked me in for a blood test 3 months later to check they were still up, which I have tomorrow.

In the meantime, my father has been diagnosed with stage 4 cancer and been through Hell and back with his recent chemo sessions (4 more to go), so it's difficult to decide if it's the PA or stress that is causing the symptoms.

My fingers are tingling and painful, my gums are bleeding, my nails are going purple, my hair is falling out (again), my skin is really spotty. These are symptoms that i had previously, but again, i'm not sure if the anxiety and stress of dad is making them worse, or if my PA levels have just dropped again.

[clivealive Forum Support]

Hi Moosey I'm a bit confused. You wrote six months ago that you had been diagnosed with P.A and if this is the case there is no reason why your B12 levels are being tested. If you are having neurological symptoms you need to go back to your doctor and ask for loading doses to start again until there is no further improvement in accordance with the N.I.C.E guidelines and then your injections should be every eight weeks not 12.

You also need to as to have your Folate level checked.

I'm sorry to read about your father and hope that his treatment is effective. The stress and worry will "use up" your B12 and you should mention this to your doctor.

[Moosey in reply to clivealive]

Thanks Clive. I had my 3 loading ones and then a blood test. that blood test showed that my levels were improving (i don't really understand it all so didn't go further) and he said that he would wait 3 months and retest them. I just assumed that was normal. I will have to make a follow up appointment anyway so hopefully he will explain

[clivealive Forum Support in reply to Moosey]

Moosey if you have a definite diagnosis of Pernicious Anaemia B12 injections are for life and your doctor should know this.

He needs to check the N.I.C.E guidelines below.

Click on the link, then on "Management Scenario" and scroll to "Treatment for B12 deficiency". If possible print it off.

google.co.uk/url?sa=t&rct=j...

The pertinent section which applies to you reads:

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

Please remember to ask about your Folate level as this and the B12 helps your iron to make red blood cells.

I hope this helps

[Sleepybunny]

Hi,

If you're in UK, I'd suggest reading the BSH Cobalamin and Folate Guidelines. the info on UK b12 treatment is about a quarter through document.

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

BNF British National Formulary Chapter 9 Section 1.2 has info on UK b12 treatment

All UK GPs will have access to this and there is probably a copy sitting on your GPs desk or bookshelf if you're in UK

evidence.nhs.uk/formulary/b...

it's also possible to buy your own copy.

I found fbirder 's summary of B12 documents helpful to read. Think it has a quote about retesting being irrelevant once treatment has started. link to summary in third pinned post on this forum.

PAS

I'd suggest contacting the PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS tel no [phone]

answerphone so messages can be left, may take a few days to get a response

Are you a PAS member? PAS can sometime intervene on behalf of members by writing letters.

pernicious-anaemia-society....

I think PAS is likely to be interested in hearing about someone with a PA diagnosis who has only had 3 loading injections and no other B12 treatment so far.

Letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

I am not medically trained just someone who has struggled to get a diagnosis.