What's next do I stay on tabs or go back to GP?

[Doolallytap]

I have been having b12 injections for a number of years

I do not know whether it's for pa or a deficiency. A few years ago I had to have a stomach resection because of GAVE a rogue outbreak of bleeding mini veins in the lower part of my stomach. Following this my b12 injections were uped to every 8 weeks. My b12 jabs have been withdrawn now and I was told to buy b12 tabs from the chemist. I have been taking these for several weeks. My last injection was in January. My only sy

mptoms are fatigue and some irritability. What do I do now?

P

[fbirder]

You write to your GP saying that you are having symptoms return and that the tablets aren't working. Include the BSH recommendations - b-s-h.org.uk/media/18259/bs... and highlight the bit that mentions irritability.

If that doesn't work then write to the GP again, this time copy in the practice manager, your MP, the local press, radio and TV.

[Donnadancer in reply to fbirder]

Fbirda i feel so angry and frustrated for you. I can see that you have had some good informed answers . Finding this treatment of people with pa unbelievable . The surgery i go to or used to go to , change their policies on this and also blood tests every week is different ! Today they sent me to a hospital a few miles away for my blood test , only to be told it is appointment only and all surgeries know this ! Was going to bang my head on the wall but thought better not as i had managed to put some make up on x

[Donnadancer in reply to Donnadancer]

Sorry fbirder

[Sleepybunny]

Hi,

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

I wrote another very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Warning

I believe that many UK patients who have been on B12 injections will find it difficult to get them reinstated even after pandemic is over.

1) There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

PAS blog post about oral B12 treatment (August 2016)

martynhooper.com/2016/08/02...

2) There is pressure on GP surgeries to cut costs...I think some GP surgeries see patients treated with b12 injections as an easy target.

Have a look at the comments under this recent BMJ article about PA (Pernicious Anaemia)

bmj.com/content/369/bmj.m13...

Some of the responses below the article from GPs are very concerning. See response published on 24th April. Attitude of GPs seems very questionable to me.

Costs £30 to get access to original article. There was a recent thread about this article on the forum.

PAS

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12 Deficiency Info website

b12deficiency.info/

I am not medically trained.

[Traceyma in reply to Sleepybunny]

My surgery is following the Gloucestershire model of moving everyone onto tablets. My jab was due 2 weeks ago and although I'm on tablets my symptoms have returned. Loud tinnitus feeling really weepy and pins and needles.

[fbirder in reply to Traceyma]

Perhaps the PAS Gloucestershire support group - pernicious-anaemia-society.... - could coordinate some action to publicise their plight.

[Sleepybunny in reply to Traceyma]

Have you written to GP explaining that your symptoms are returning Traceyma?

It's possible that your surgery's guidelines on treatment during pandemic are based on an out of date version of advice from BSH (British Society of Haematology) .

Have you asked your surgery what advice they are basing their treatment on?

See link below which outlines the most recent advice for GPs from BSH.

pernicious-anaemia-society....

Hopefully your surgery will restart injections soon and the move to oral tablets is temporary.

Gloucestershire's treatment guidelines in this next link are not just for the duration of the pandemic, they are as far as I know permanent changes to B12 treatment.

b12deficiency.info/blog/202...

[Traceyma in reply to Sleepybunny]

Hi unfortunately the surgery is aware of the current guidelines and the local CCG has written to all surgeries in our area recommending self injection for patients during the pandemic. I've spoken to the gp myself and we have even got our local mp involved. To no avail they said they were using this time as an "opportunity " to move patients onto tablets. I've been offered a blood test in August to determine what my levels are. I will most likely have to use a pharmacy near me to get it done privately. I've ordered supplies online to self inject but I'm furious it should come to this!