Hi All
I posted the other day about advice on how to convince my doctor to reinstate my injections. In the course of writing, I researched a number of things. Please excuse me if you all know what I found out but it might be of use if you didn’t.
I looked at the NICE advice during the COVID pandemic in relation to b12d patients.
1. They have separated us into non-dietary and dietary causes for deficiency so if, like me, they are issuing you with 50mg tablets, you have been classified as dietary which, for me, is the first time I have ever been told this. After 6 years of injections, I have unilaterally been diagnosed as never needing the injections in the first place and, after an initial set of injections to overcome the deficiency, I could have been on tablets years ago.
2. They have made this decision completely arbitrarily as I have never had any tests to ascertain whether I can absorb b12 or in absorbing it, utilise it.
3 As I became ill with parathesia and IBS symptoms after 12 weeks without an injection, they gave me a blood test, found my b12 level to be 956, and asked me to cease all supplementation for three months then have another blood test.
The NICE advice specifically states not to test for b12 levels and certainly not to make judgements based on the level found as the amount of b12 in ones system is not measure of whether a b12d patient can use it or not.
4 For non dietary b12d patients it recommends telling patients to find other places like pharmacies to get their injections, continue self injecting but not to recommend self injecting to patients who have not done this. Efore because there is no-one available to ensure they can do it properly.
You might ask, as I do, if pharmacies can give the injections why can’t the nurses at our surgeries? If staff in supermarkets - some of them elderly, frail, obese, bame etc risk their lives enabling us to buy food on very low wages why can’t our gp surgeries be open to provide us with essential medicines.
5 The other thing that I found out was that previously the NHS website in relation to b12d stated specifically that Omaprezole and lamapresole (sic) were ppi’s that contributed to b12 deficiency- these products have now been removed and just ppi’s have been stated as causal.
There might be a very simple reason for this change or it might be more sinister! I was virtually vegan before my deficiency became apparent but I had been prescribed Omaprezole for years on and off and been taking it on 6 monthly prescriptions for almost three years prior to my b12d diagnosis for acid reflux. My mother and my sister were on it for years taking 20 mg tablets and both of them were virtually anorexic due to the inability to swallow whole food. My mother developed a very odd form of dementia and my sister died of a heart attack.
Please correct any of my mis readings or misstatements as it is important on here that we only get the facts.
I am awaiting my surgery’s reply!
Sorry for any typos but, for some reason, I cannot get my cursor to revisit parts of the text to correct errors.