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[Michaelaemily_]

Hi, I'm 17 and was diagnosed with Pernicious Anaemia around a year almost two ago. At my age it's rare to be diagnosed and it did take a while for my doctor to come to the decision that I had Pernicious anaemia. I have a problem, for the past year or so I've been having my injections every month as advised by my old doctor due to the fact my symptoms were rising once again within the first month and a half of not having my injection. Now I've moved to a different doctors for one because it's closer and also my doctor both me and my mum have had since we were young has retired sadly. The new doctor I have has advised for me to go back to three months again (which I've tried a good three times now), saying that its "in my head that the injections work every month" and also that "it may be something else" even though my blood tests have come back clear time after time of anything else. I'm now at around the two month mark and have gone down hill a lot, I'm not only tired but feeling dizzy and every symptom you read has come back. Now I've tried to research into Pernicious Anaemia as much as possible but haven't ran into anything to explain his logic, it may be because I haven't looked deep enough. I was wondering if anyone on here would be able to disproof him or even educate me a little more, as I honestly believe I need to stay on the monthly injections. I'm a firm believer that everyone knows when something isn't quite right with themselves.

Thank you and apologies for the lengthy paragraph.

[Gambit62 Administrator]

michaelaemily - unfortunately your story is far from unique - and it is your new GP who is in the wrong in terms of treating you properly - though there are a few other things that may be acting against you - namely the fact that vagaries of the licencing system for medications in the UK mean that hydroxocobalamin is only formally licenced to be used at intervals of 2 weeks - though there is no scientific evidence to support this - and monthly is the frequency used in many other european countries for hydoxocobalamin.

In the circumstances I think your best bet it actually to contact the PAS directly

pernicious-anaemia-society....

you will probably need to join before they will be able to help you directly

pernicious-anaemia-society....

in the mean time you could try directing your GP towards this area of the PAs website

pernicious-anaemia-society....

[Michaelaemily_ in reply to Gambit62]

Thank you for your help, I will defiantly be looking into contacting PAS directly.

[clivealive Forum Support]

Hi Michaelaemily_ I have had similar problems with my "one size fits all" doctor who laughed at me when I said I had symptoms returning in the run up to my next injection and it took a long fight (and joining the Pernicious Anaemia Society seven years ago) before I "won" the concession to have more frequent injections.

Anyway, if you have P.A. with neurological symptoms the N.I.C.E Guidelines say injections should be eight weeks apart.

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

I am not a medically trained person but I've had P.A. for 46 years and I'm still "clivealive" and over 75.

P.S. ask your doctor to check your Folate level

[RipeBanana1]

Would another blood test help if you haven't had any B12 for weeks? Plus you could ask for the anti-intrinsic factor antibodies blood test.

See if this helps. b12deficiency.info/b12-writ...