Hello everyone. Been a reader of the great forum here for a while but never posted. I am now at a cross roads like many of you.
Im a 35 year old male (UK) went to the GP around 12 months ago with symptoms of extreme tiredness, confusion, mood swings, lichen planus mouth ulcers, plus others.
My grand mother, mother and sister all have a B12 deficiency so i asked the GP to run some bloods. (Which he reluctantly, questioning a deficiency as i had no pins and needles).
Results came back with a B12 at 115 or there abouts. He immediately diagnosed PA and said injections for life.
Had the loading doses then Had doses every 3 months for a year/ 18months. I felt better after injections for about 8 weeks then towards the 12week felt rubbish again with symptoms returning. But hey ho i knew they wouldnt give me them sooner.
I went for my 3 month injection the other day and i had miscalculated the dates, got turned away by the nurse as it was only 10 weeks since my last dose not 12.
I said that i was feeling like i needed it more regularly and asked for blood tests as they have never given me anymore since the original diagnosis.
Tests came back. B12 at 2000
Doctor ordered i stop the injections as in his words "you no longer have PA, it must be something else".
I questioned this and asked if it could be an absorption issue and he advised "there is no such thing its going directly into your blood stream via the injection"
Was also told "your body gets used to B12 and its addictive, so i need to set a new normal level for my body"
Now im not greatly educated in the area but im aware of functional b12 deficiency and genetic issues. (There might well be one due to so many family members having the same issue)
GP has now stopped my injections for 6 months.
At a bit if a loss as to where to go next.
Right now i feel ok (ish) but i dont really want to embark on a 6 month journey of all symptoms returning and giving me a rubbish quality of life.
I was thinking of asking for an active B12 test?
Or self injecting, but was worried about the b12 level being so high.
Any advice or guidance would be welcomed. Wanted to share my story as many of you have, i find it insane the way the medical system treats a vital vitamin deficiency.
Thank you in advance, and thank you for reading.