I have tried to keep this as brief as possible, however please bear with me as I feel let down by the NHS and I’m at the end of the road.
My Grandfather and Father were both diagnosed with Pernicious Anaemia and my father received monthly injections of B12 for life.
I’m a 45 year old male with the following symptoms…
-Ectopic Heartbeats (confirmed by DR as I had a 7 day HR monitor fitted)
-Diarrhoea that comes on randomly and at short notice
-Short term memory and concentration deteriorating fast, my “head hurts thinking”
-Unexplained Tiredness (I need to go for 20 mins sleep at lunch time in my car)
-Horizontal ridge on my Thumbnail
-Shortness of breath when walking up stairs
-White Pigment patch of skin on my stomach (appeared in last 6 months)
I first consulted a GP 7 months ago and since then I have had over 10 appointments trying to get to the bottom of what’s going. In that period my results, some of which I have paid private for, are…
-B12 = 430 / Active B12 = 61 / Intrinsic Factor = Negative / Parietal Cell Antibodies = Positive
-Methylmalonic Acid 15.3 (9-32) = / Homocysteine = 10.0 (5-15)
All within range, expect PCA.
My Dr has ruled out “PA” every time I have seen her and she has refused to take on board the latest BJH guidelines. She did agree to refer me to a local Haematologist “specialist” however he is refusing to see me and he has commented that “my B12 levels are within range and therefore I require no further treatment” !
So where now ? Is my DR right and I don’t have PA or b12 deficiency ? She has pretty much said there is nothing more she can do for me.
Are there any Haematologist out there that are aware of the latest guidelines, preferably in Scotland, that I can get referred to ?
Do I just start and self-treat ? If so, I’m assuming it will be forever and my records will never record the fact that potentially I have PA.
Or do I just sit back and wait for my B12 to fall lower, my health to deteriorate so that the NHS eventually confirm that I do actually have PA ?
Any views or input on my position would be greatly appreciated as I’m running out of options….