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[Dfthbhjj]

I had a doctor's appointment yesterday at which I was hoping I would be able to get my B12 injections reinstated. My serum b12 at last blood test (29th November ) was 450 ng/l but it has fallen from 837 ng/l a week after my last injection in early August. My neurological symptoms are as bad as they have been and had I'm really tired all the time. I went armed with the scientific papers that others on here helped me out with, she just didn't want to know. She just said my levels are nice and high now and that if my neurological symptoms were as a result of b12 deficiency then they would have desisted by now with the level being so high.

The thing is the neurologist said the damage they found in my brain is very old and probably caused when I had a terrible motorbike accident 14 years ago. The symptoms I am experiencing I started really noticing about 3 years ago. Initially they thought it was carpal tunnel syndrome. I had a hydrocortisone injection which didn't really do anything. I pointed out that my leg was also numb / burning sensations. This is the point when I had a test for serum B12 which turned out to be 127ng/l. I was given oral supplements (50mcg X2 daily), I had another blood test 3 months later this time serum b12 was 117ng/l, clearly showing oral supplements don't work for me or at that level anyway. I had injections for a year and at some point during that year they did the intrinsic factor test, which was negative. So as far as my doctor thinks that means my problem is dietary despite my telling her I'm closer to a carnivore than a vegan.

Anyway it seems I'm not going to get anywhere with the GP, I think I'm going to start self injecting as I really don't want to end up not being able to walk or something in the future. I'm amazed how little my GP seems to know about the condition and how she completely dismissed information from the bmj and other well known and respected publications.

Just wondering if anyone has any advice for me other than starting self injections? Anything would be much appreciated.

[StitchFairy]

Carpal tunnel like symptoms, and numb / burning sensations can be caused by hypothyroidism, which can also be connected to B12 deficiency. Worth getting your thyroid levels checked if you haven't already.

[Nackapan]

If you know thd B1e helps with your symptoms its obviously an absorbtion problem.Presently mg daughters B12 k jrctikbs have been stopped.

It's simply outrageous.

Ive had mine opposed many many times.

Ask another G.p to message a neurologists opinion.

This worked for me on one occasion.

Thete no harm on buying your own supplies meanwhile.

I do both .

So far retaining my B12 NHS prescription.

NICE guidelines have the information but scattered so G.ps rarely read it .

I've definitely got an absorbtion problem too.

IFAB test never done .

Parietal cell test was negative in 2018.

I've just refused a b12 level being done as I know it will be used against me .

The ignorance and short term drive to cancel b12 prescriptions is awful.

My initial level was 106pg/ml

My daughters 86pg/ ml

She also had megobolastic anaemia .

Neither of us have a PA diagnosis .

Both depending on B12 💉

As is my mum.

Do write into your surgery .

See another G.p

[Hockey_player]

I would start with every other day injections (if not more often) to see if you can get rid of all the symptoms. Then find a frequency so that the symptoms do not come back. The medical system you are messing with sounds like a comedy. I'm sad that you are not getting better help. I hope you feel better soon!

[Cornwaller]

If you look up posts by Wedgwood she gives lots of great advice re SI.

[jointpain]

You could try sublingual administration of B12, which worked a little for me 7 years ago, my B12 serum was 176 measured a few months after I started sublingual B12 doses many times a day, then a few months later 450 ISH, which is when I started EOD injections, so now over 2000. I now inject every 3rd day, any longer I don't function well.

[Enuffisenuf]

Change your doctor? See another in the surgery?