B12 questions

[Alfabeta]

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.

[Nackapan]

Thank you for that.

Even though I'm the same as tiu on that ove been told to try 50mcg b12 . Go said my deficiency is dietary. Hoe she got to this conclusion I do not know.

I eat most things and eat meat and diary ect.

However I also was given loading doses via I jection ad symptoms so severe and nothing else found wrong. Contradicting what I was told I by another go said b12 I jections are for life.

Whist trailing tablets my I je tions have never been stopped.

The trial was to try and get the injections less frequent. Thus failed as the tablets had no effect . I do now get a prescription to self inject so go to the surgery less often.

It appears wrongly each surgery are making their own decisions.

Rssentisk treatment ad toh say should be conti used by all of them.

All this b1e testing such a waste of money and clearly not in the bnf guidelines.

Once on injections o think it's very hard for anyone to convert to tablets as you need higher b12 levels and the reason you were prescribed them in the first place should hold.

It should be documented tablets tried and do nit have any effect on symptoms.

My husband is type one diabetic. Our Go at the time near retirement. He was trialled on tablets first as once on I jectuons on them. The trial failed.

One a substance yoor body cannot process properly is replaced I think tour body adjusts good it yo be given and used to function and theres no going back.

I'm sorry to hear about tour family members. I wonder about some of mine.

Some nice I know about b1e coukd clearly have been missed.

Routine testing on routine blood forms.

Tou should receive tour injections .

The nurses are alot safer than any supermarket worker.

Our surgery have one in at a time . Wear all the protection ans work in separate rooms from each other. They are trained .There us definitely something going on and medics using this pandemic to reduce cost ans workload. . Of course priorities have to be made.

Agsin not enough guidance for doctors or training. Some have no idea how devastating the long term effects or ongoing symptoms are.

I hope you get a good response.

[Nackapan]

Sorry about typos. I'm off to collect more glasses from optician. !! Cant abide lights in there si have no idea what frames been chosen for me. I keep my eyes shut and hat on and trust them.

Nothing is easy is it?