Hello all. I'm new here and first, I'd like to say that its been heart breaking and shocking to read of all of your struggles to get appropriate treatment.
Here's a bit about me.
In July 2011 I was diagnosed with vitamin B12 deficiency, was given six loading doses of B12 and commenced 3 monthly injections. I was told that I did not have pernicious anaemia but would need B12 injections for life. The initial loading doses made me feel much better but I found that I was running out so quickly and constantly waiting for a top up to feel better again. Fog, pain, neurology and all the other nasties did not go away completely.
Two weeks ago I asked for more B12 (because of ongoing neurological symptoms) which my GP very reluctantly agreed to (following a discussion with Martyn, I outlined treatment guidelines). I persuaded the surgery to let me self inject (I'm an ex-nurse). Bloods were taken and two days latter I was told to 'stop treatment immediately' and 'under no circumstances given myself any more B12': my B 12 levels were 'too high'.
I went back to the GP and was told that the nurse had looked it up and that I have vitamin B12 toxicity and no more B12 would be given until the levels were 'normal' again. FBC screen was normal, as were thyroid, liver function, serum folate and other tests. No B12 'functionality' tests have been done. (Reviewing the results I've noticed that my Serum ferritin might be a little low at 14ug/L - normal range listed as 10.00 - 420.00 ug/L).
I have been referred to a neurologist (pins and needles, stumbling, difficulty swallowing, problems with vision, numbness and tingling in neck and across shoulders etc. etc.). The GP reluctantly agreed to also re-refer me back to a gastrologist (ongoing stomach problems - a year ago I was acutely ill with diahorrea and vomiting and lost two stone in 5 weeks. Treated for Heliobactor, been on PPI's for several years and endoscopy showed inflammation and tissue granulation through the whole gastric lining. Multiple biopsies normal).
I asked for a copy of the blood result and my medical records happened to be printed in the same document. This is what I learnt.
In 2012 I was diagnosed with pernicious anaemia, but never told. First serum B12 level was 188 ng/L (normal range listed as 220 - 700 ng/L.). 18 months later, post-treatment the level was still only 206ng/L. This has gradually crept up to 2000ng/L, the point where treatment was stopped because of the high level!
Considering my past medical history (investigations for MS and Lupus (all clear) and diagnosed with ME, CFS, Fibromyalgia) and the ongoing stomach problems, what I have read over the past two weeks leads me to think I may have had undiagnosed B12 deficiency for many years.
I now feel extremely ill! My score on the PAS check list is 73. I am concerned that neurological damage is being done and may become permanent if I am not treated with more B12 soon. But my GP says the neurology is due to B12 toxicity and I can't have any more!
So, a catch 22. If I am B12 deficient and don't inject, the damage will get worse. If I am B12 toxic and I do inject, that damage will get worse.
I don't think I can afford to wait several months for the NHS appointments so...
I would really welcome your thoughts. Am I right to be concerned? Is there such a thing as B12 toxicity? Could I have had a functional B12 deficiency which has 'righted' itself so I really don't need the extra B12? Is my Serum ferritin low (as above) and will this make a difference?
My main questions are: has anybody out there manage to find a gastrologist in the Leicestershire area who is sympathetic to all things B12 deficient / PA? Is it worth trying to get a private appointment? And have you been able to have an initial private consultation and then transfer to the NHS. If any body could email me with information or recommendations it would be very much appreciated.
I've spoken to Martyn (I received his book yesterday), been in touch with b12d.org, and am working my way through all your posts and the PAS website. I'm also taking note of potential blood tests I may need etc., and the advice that has been given to others.
I've had so many 'light-bulb' moments whilst doing this and for the first time in a very long time I think I might not be going mad!
This seems to be a long post but it's really helped me put my thoughts together and try to 'think' a way forward. It would be good to hear from anybody out there and especially to hear any thoughts on B12 toxicity.
Foggy (always). Me (I think I'm still in there somewhere).