It wasn't my GP.....

[Mewsmom]

It wasn't my GP that told me my injections were being stopped(due I was told to keep people attending the surgery to a bare minimum),I read so many posts saying my GP is stopping B12 injections but , when I rang the surgery to book my due injection the receptionist told me she couldn't book it & someone would ring me about it, I got a call a couple of days later from a clinical pharmacist at the surgery (didn't know the surgery had one) she told me my injections would be stopped & then went on to tell me I could take oral replacement tablets, (which can't she said be given on a prescription) I wrote about this on here a week ish ago saying what dose she said to take I had a lot of responses from other PA sufferers saying the tablets don't work & the dose she had recommended was wrong , also wrong was her telling me PA sufferers had enough B12 stored in their liver to last a year, because it wasn't the GP who told me I needed to get my injections started (at the surgery) asap i thought I would write to him saying even though I told the clinical pharmacist I was already suffering from syptoms I know are because my body is asking for it's B12 injection she ignored that ......I have had people say, your GP probably doesn't know about the injections being stopped, hence I wrote to him a week ago, alas no response, I'm feeling very much like people on here, frustrated & concerned I don't want my health to revert back to how I was before injections, why do people who don't have PA never seem to understand how it makes us feel without our injections 😟

[Nackapan]

Its deplorable.

Keeo ringing the surgery ti get a telephone consult. I've had to do that to get a response from letters I've written.

[Hidden]

Good advice Mewsmom try and get that gp telephone consultation, they lost my consultants report when i put the letter in so there’s no guarantee they got your so I’d chase them up now and ask for a gp consultation.good luck x

[Zeldaxxx]

Hi

Sorry to hear you haven’t been able to over turn The decision... Also write to the CCG. It took me 5 phone calls, and 2 emails. Include writing to your CCG.

I asked them to read my notes prior to being diagnosed, they were then reminded how poorly I was. Try the same.

Be armed with the new guidelines, do not give up.

Good luck. Zx

[FlipperTD]

This is a response from a scientist, who doesn't have PA; I'm not a doctor. However, I was involved in testing samples, and patients, for many years, including performing Intrinsic Factor Antibody [IFAb] tests.

The presence of IFAb generally makes it impossible for B12 absorption via the ileum, although some individuals do seem to be able to absorb sufficient when very large doses are adminstered orally. The nature of this absorption is unclear. Everyone is different.

When someone is deficient simply due to their diet, [some vegetarians, and many vegans] then oral supplementation can provide the answer, although injections get over this problem quickly, and ensure compliance.

In these tedious times, I suspect anything that can be done to avoid hands-on contact will be tried, although if you need B12 injections then that's what you should have.

I despair when I hear that someone claims to know better. Yes, sometimes they'll be right, but not always.

Many people have adopted 'self-injection' to overcome difficulties and they buy their supplies from on-line pharmacies, but that's another story.

Carry on nagging them by telephone, letter, email and any other means you see fit. There are enough people on here who will support you.

Good luck.

[Mewsmom in reply to FlipperTD]

Thank you.

[Frankieluca]

This all sounds so familiar. My surgery won’t give me my injection, told me the same, to take high dose orally, when clinicians have told me not to waste my money as we cannot absorb it with PA!

If this goes in for much longer, I am concerned about our susceptibility to the virus as our immunity system is getting weaker by the day ☹️

[Sleepybunny]

Hi,

Perhaps you could write to the practice manager? The CCG? The local newspaper, TV. radio etc?

Have you contacted your local MP or representative of devolved administrations in Wales, Scotland, NI?

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

If you're a PAS member have you rung the PAS helpline?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

[Mewsmom]

Update !

I rang the surgery & made a phone appointment I said it was about joint pain as I know if I mention B12 they won't give me an appointment of any kind, I do suffer with joint pain & I truly believe it's related to my PA as it settles in between injections though often flares up near my injection, anyway I've just had a doctor call me & she's adamant that all B12 injections have been stopped right across the country to prevent the spread of the Corona virus, she told me my last blood showed my B12 was good 8 weeks ago, I had to interrupt her to say I haven't had a blood test for 12weeks, I had one related to my type 2 diabetes she went on to say the haematology say we have enough B12 stored to last a year, I said I believe that the British Haematology now have withdrawn that from guidelines, to sum up I had to interrupt her several times as she wasn't listening to my trying to explain I'm like a roller coaster I start to climb feeling not to bad at all, then I start to go down hill when my injection is due, I'm sure a lot of you understand what I'm saying, she wasn't having any of it, she said she would speak to the clinical pharmacist .......alas she is the one who said my injection's can be stopped for at least a year.......why then do we have these injections on a regular basis (I know it varies slightly per person) .....why .....I'm rather fed up to put it in a nutshell ☹️