Hello All!
Hope everyone is having a good day.
I wonder if anyone could advise me - I'm rapidly losing all confidence in my GP - I took it upon myself to get some private blood tests done hoping they might throw up something, in case there was more going on with all my symptoms than the PA.
I was diagnosed with pernicious anaemia over 20 years ago (almost non-existent B12, high IF antibodies) and have received 3-monthly injections ever since. Things have got progressively worse this year after a bout of Hepatitis A in January - (extreme fatigue, neuropathy, brain-fog, palpitations, breathlessness, aches and pains, etc.) so I started a regime of SI back in August. First three weeks I had daily jabs, now reduced to EOD.
I've recently had various blood tests - haemoglobin and red cell count now improved (since July) and within normal range, thyroid function (Free T3 &4, TSH) and Vitamin D are fine, ferritin, folate, active B12 all OK, liver function tests now back to normal, although I have elevated Free Kappa Light Chains (24.97 mg/L - normal range 3.30 - 19.4 mg/L) but normal Kappa/Lambda Ratio at 1.27, slightly elevated IgG (16.2 g/L - though I suspect this may still be as a result of the Hep A), elevated MCH (33.2 pg) and low reticulocytes at 36 10*9/L (normal range 50-100 10*9/L).
I'm a bit worried about the reticulocyte count as I thought the frequent injections would have helped this - NICE state that it should improve within 7-10 days of beginning injections. I asked the GP whether the B12 injections would have improved my haemoglobin and RBC but she said not, which completely contradicts what I've read from the NICE guidelines!!
Initially my GP sent me to see a musculoskeletal specialist in October as she was convinced the neuropathy was linked to herniated discs in my back and neck (it isn't - he confirmed this). Now she suggests me seeing a gastroenterologist in case I have coeliac disease, which I haven't, confirmed by an endoscopy when I was originally diagnosed - I'd already told her this, but she seems to have ignored it. I asked about seeing a haematologist but she was quite dismissive.
I'm concerned about MGUS as I know people with PA have a high percentage risk of developing this, and also Myelodysplasia, which my dad had.
I feel as if I'm having to push for everything and feel fobbed off. I'm sure the GP just thinks I'm a hypochondriac! Feeling anxious and wondering if anyone can shed any light on the low reticulocytes and high Free Kappa Light Chains - has anyone else had experience of this?
So sorry for the massive brain dump here, but if anyone has knowledge/experience of any of this I'd be really grateful for some advice!
Thank you in advance🙏