Refused B12 Injections for a YEAR!

[briarhillcat]

I have been in contact with members here and like so many have been denied B12 injections for A YEAR. I cannot get to speak to a doctor, so I want to self inject. I had a lovely message from Littleisland and cannot find it now. How is it that there are so many different sized needles and mind boggling which to choose. I have two ampoules here so am OK until August. But want to make sure I can carry on self injecting. I am, like so many others scared and am a widow so on my own and no family near by. Then on top of that we have Covid 19. I get to the point where I just do not know what to do.

[Eloise81]

Hi briarhillcat, the size of needle you need is 23Ga which is blue. The more stories you read on here about being denied injections for 1 year is scary. I've had injections now for the past 18 years, mainly monthly for the past 17 years as 3/monthly was too long, as was 2 /monthly. I still maintain that unless you have this condition, it's not fully understood & this includes doctors, I'm sorry to say. There's going to be a lot of battles on when this Coronavirus is over! Good Luck! 😷

[briarhillcat in reply to Eloise81]

Thank you. I have ordered needles, I have two ampoules here, but I cannot buy any on line as they say they are only delivering in Germany or their own country.

[Sleepybunny]

Hi.

I hope you find a solution.

I find it so sad that so many of us have been forced into self treatment.

I copied info below from a reply I wrote on another thread.

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog posts/news items about stopped injections

b12deficiency.info/blog/202...

PAS statement published 11th April

pernicious-anaemia-society....

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a telephone helpline for PAS members to ring.

PAS support groups in UK

pernicious-anaemia-society....

Have you also considered putting any concerns about treatment into a brief, polite letter to GP?

In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.

Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.

People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.

If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.

If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2.

At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.

WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.

B12 article from Mayo Clinic

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

Symptoms Diary

I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.

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

healthunlocked.com/pasoc/po...

I am not medically trained.

[briarhillcat in reply to Sleepybunny]

Hi Sleepybunny. Thanks for the info. I will have a trawl tomorrow. I am so weary, having been on here all day. I need to have a rest. It is not good and so many people suffering. That is on top of the Covid 19 illness. Let us hope we can all keep going and keep our chins up. Thank you.

[SnappySam]

PM4B12.

[briarhillcat]

Hello. Just to let you know that I have just done my first B12 injection! I had been trying to hold on a bit longer, but I could not had all the nasty symptoms of needing it. I had practised on an orange until the poor thing must have felt like a pin cushion. So tonight I decided, and got everything ready. My hands were shaking and my mind went blank, but I finally did it! The needle did not go quite all the way in (my thigh) but I got most of the B12 in. I am so relieved. Hard was snapping off the top of the ampoule as I have no grip in my fingers and thumb. Anyway, it all went OK, so am going to put the kettle on now. Thank you all so much for your help, I could not have done it without your support. Briar Hill Cat. sending Meows to all of you!