my story

[Beadbuddy]

I started on cobalamin injections pre Covid then when lockdown arrived was put on Tablet form which remained until last July when a retired Doctor in our practice noticed I’d been requesting to be given B12 injections once more. I’d gone for a different reason but I felt so well by next day it convinced me that that was what I really needed. My vertigo dissipated and I was able to accomplish so much more I felt completely normal !!!! So I was eventually given an intrinsic factor test. But all this only surfaced when I’d suffered a minor stroke late August this year, and was admitted to hospital for 4days. I didn’t look at my discharge notes at first but then I noticed on the comorbidities was Pernicious Anaemia so showed it my Doc who knew nothing about it but did finally investigate and that’s when I was told I could have injections or stay on tabs. So have opted for jabs instead of tabs. But when I booked one by myself the nurse was so annoyed, said I didn’t need any B12 as my level was over 1000. Anyway mid November I paid for one privately and then again my other symptoms disappeared. So back to surgery and had to insist I had another finally set up for this month so should get through Xmas without this fatigue. My story abbreviated up yo date

[Nackapan]

My mum is 94.I've had to fight to keep her b12 injections.

She has them every 8 weeks.

Once on injections blod test levels shoukd not be done.

A waste of time and money.

Levels should be kept high.

We shouldn't have to fight for what we need.

I hope you get what you need .

PAS can help with Gp if necessary.

[bookish]

Did they check your homocysteine level following your stroke? Would be a good idea to make sure that your B12 injections have reduced this to a good range (as in less than 10). You may also need folate and B6. The nurse clearly is ill-informed about PA. Best wishes

[Cherylclaire Forum Support]

It is not within the remit of a nurse to stop your B12 injections.

You have been diagnosed with Pernicious Anaemia, given tablets during Covid and have had a stroke. You were within your rights to insist on injections, and I really hope that this is the last time you will have to make your case.

Your nurse was annoyed because your serum B12 was over 1000 !

My level has been over measurable amount - over 2000 ng/L - probably since 2016. I say "probably" because it does not get measured : "Pointless" my GP said, after restarting my B12 injections in 2016, at a new frequency: Two per week.

Finally, it started working. The nurses were jittery, suspicious even ( -????) but my overjoyed GP decided to continue the frequency and offered to speak to them. It's really not their call to make, is it ?

Okay, I'm still not as I was, but I'm certainly not on the downward spiral I was experiencing when on one injection every three months with an initial B12 level of less than 200 ng/L.