Getting your B12 injection during COVID

[Maxie902]

Dear members,

I just wanted to highlight the current situation around getting B12 injections from your doctor during COVID. The guidance has changed and patients can now get injections again. The guidance states that people will be assessed on an individual basis in terms of their symptoms. So for people with Pernicious Anaemia, you will get your injection if it is due at this time. You need to persist with your doctor if they continue to say no and you are experiencing symptoms. My injection was delayed for about 3 weeks but I rang the surgery back when my symptoms got worse, just as the revised guidance came out. The doctor had seen the new guidance and acknowledged I needed my injection. It seems like not all doctors are up to speed.....

[fbirder]

Good news.

But the new guidelines don't actually mention Pernicious Anaemia (well, they do, but in a long list of possible causes). They distinguish between a non-dietary B12 deficiency (which would include PA) and a dietary B12 deficiency.

Which is great as it includes all those without a diagnosis of PA.

[Nackapan in reply to fbirder]

Exactly. Which there are many.

So includes everyone this time very clearly

[Nackapan]

Is this NHS guidance?

Good .

It not good about all the new assessments though.

It was such a fight in the first place and seems unecessary extra work.

I imagine blood tests then when high from self I jecting refused then refused as self injecting .

I hope not. If the have a diagnosis of PA it should be okay.

Unfair If you havent with the tests so inaccurate.

I can see 'trouble at the mill' again.

Relentless.

[Maxie902 in reply to Nackapan]

It was something that came out initially from the British Haematology Society, I believe. By assessment, My understanding is a discussion with each patient. My doctor took account of my symptoms (my original antibody test was negative, but because of other factors and symptoms I am considered now to have PA). If you want further details, I would look at the PA Society website. Hope that’s helpful.

[Nackapan in reply to Maxie902]

Thank you yes I'm a member but not had any updates emails for some time. I think ive only had one??

So a clinical diagnosis ...good doctors still using their skills as so many lost relying on computers even with drugs!

[Eloise81]

Hi, Please can you tell me if you live in England or Scotland? I'm in Scotland & it seems some surgeries are willing to give it & others not! (Mine wasn't last time I phoned.) Getting desperate now! Many thanks!

[Twaddletop in reply to Eloise81]

I’m in Scotland and once I quoted the new regulations to the practice manager, my doc phoned back and asked me if I wanted to have my injection that afternoon. It’s sad that we’re being made to behave in this way, but I was feeling horrible x

[Maxie902]

Hi there,

I was getting desperate too. you must insist. Whilst I understood concern around coming into the doctor's surgery, I was in the end able to make an arrangement that was safe for me and for the nurse giving the injection. I had it done in the open air in the surgery car park! I live in England, but I inagine it is variable throughout the country. Check with the PA Society in your area to see if the guidance is the same for Scotland too. I hope you are successful.

[Midnight_Voice]

I have it on good authority that the guidelines were revisited in 2014, and again in 2019; you can find older documents on the web which haven’t been withdrawn, but don’t represent current practice.

Unfortunately, current practice in Gloucestershire still does not adhere to the BSH guidelines; withholding injections in favour of the usually ineffective tablets, and in the case of our practice, using measurements of B12 in the blood as a marker for whether injections, if given at all, should be given, when the BSH clearly states that this should not be a criterion here.

We are currently looking to move to Dorset, though recent reports seem to indicate that this may be a case of out of the frying pan into the fire.

Our best advice, a la Sleepybunny, Is ‘learn a little German’ 🇩🇪

[Midnight_Voice]

In our case, it was five loading injections, wait three months, be given an IFab test, come up negative, and be left to swing in the wind, until, a tottering train-wreck at a local PA group meeting, we were gifted, like manna from heaven, a set of B12 ampoules from a fellow sufferer (thank you, thank you, thank you, you know who you are), and the name of a private GP who would teach us to SI.

We have not looked back since. Nor looked to the Not Helpful Service for anything B12 related since that day, either.

[Nackapan]

Oh dear!! I wad told 3 months after loaf8nv dises and a b12 test too.

I got to 5 weeks and was oh so ill

Took a letter from a neurologist I had to pay for and constant telephone calls to the surgery.

I knew nothing about it and took advice from here.

So many out of Gloucestershire ignorant too!