B12 Injections or lack of!: I'm due my... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 Injections or lack of!

Bobs4803
Bobs4803

I'm due my 8 week B12 injection on Thursday and I cannot get my GP to give me the injection even though I have Pernicious Anaemia. Can I buy the injection and syringe and self administer? I am already feeling the effects of lack of B12. My husband dreads walking into the room because he doesn't know which way my moonds have gone, I'm already getting pins & needles. I have a mouth full of ulcers but my GP surgery is refusing to let me speak to my GP about it. I'm getting scared because I'm wondering if I'll make it through.

Any advice is welcome. TIA.

19 Replies
oldestnewest

If you read through the posts this is happening everywhere

A disgrace.

Lots of links and info on self injecting. Fbirder and wedgwood have posted long replies amongst others .

Write to your Gp

You have a right to a telephone consult.

Book one .

PAS had information too

You are right to get tour treatment.

Sorry to hear this again

.

Bobs4803
Bobs4803 in reply to Nackapan

Thank you Nackapan! I'm slowly going through the posts. On my repeat prescription online my hubby has ordered the ampul of B12 & now I'm looking for the right syringes. We'll give it a go this way & see if the order comes through. I can't believe they have disregarded PA as not necessary! A letter is going to be written to MP & GP plus Health Authority. Current mood is a symptom, the 1st of many more to come. I'm dreading it!

fbirder
fbirder in reply to Bobs4803

cc a copy of your letter to the local newspaper and TV stations.

They're all looking for a new slant on the covid-19 story. One of them might pick it up as a campaign.

Bobs4803
Bobs4803 in reply to fbirder

I'm so angry right now. I can't stop crying because of the argument that ensued when I spoke to my surgery. She wouldn't even let me put in for a call from the GP. So frustrating!

ellj
ellj in reply to Bobs4803

I do not believe a receptionist can refuse you, call again and ask to speak with the practice manager if you don't get the ampoule to self inject.

Ellie

Gaudygoat
Gaudygoat in reply to ellj

It really is ridiculous that receptionists are making medical decisions not to let you speak to the doctor.

I would certainly agree. I think you should be going down the self-injection route. If you are feeling that bad when your injection is only just due, then it sounds like 8 weekly isn't enough for you.

If you do want to speak with the doctor, we found we can bypass our receptionists by telling them that it is for a follow-up appointment. Our surgery doesn’t then ask questions, but I don't know if it will work for yours.

It's wrong to have to do it but I can't believe how much my life has turned around since choosing to self-inject.

Hi,

I copied most of the 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

Published 1st April (sadly not an April Fool joke)

b12deficiency.info/blog/202...

PAS statement published 11th April

pernicious-anaemia-society....

Blog post from B12 Deficiency Info

18th April

b12deficiency.info/blog/202...

Blog post from B12 Deficiency Info

19th April

asks people to join an e-mail campaign

b12deficiency.info/blog/202...

BSH Advice

If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors during pandemic.

b-s-h.org.uk/about-us/news/...

Click on General Haematology tab in link above

then

Click on BSH Advice on Supplements tab

I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.

I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.

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.

I have written to my doctors to complain.... Doctor took a week to ring back and was extremely rude but im going for a blood test today to see what my levels are as to if i can have my jab

Sleepybunny
Sleepybunny in reply to Kmt3

I hope that works out for you.

Guidelines below suggest that in UK, testing B12 levels after treatment has started is irrelevant.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Article from Dutch b12 website

"Testing B12 during treatment"

stichtingb12tekort.nl/weten...

Be warned that some people on forum have had their B12 injections stopped totally after showing a high B12 level in their blood.

GPs should go by symptoms not B12 levels.

Are you keeping a symptoms diary?

"Doctor took a week to ring back"

You could ask for a response in writing which is likely to be more useful if there is a need to complain in the future. I'm willing to bet that the GP has not recorded exactly what they said to you over the phone, in your records.

Bobs4803
Bobs4803 in reply to Sleepybunny

I am in the process of writing to GP. Our surgery has a triage service via the phone so the decision to be seen or spoken too goes through the receptionist. Writing is my only option at this point.

Yesterday the receptionist tried to tell me that I have enough B12 stored in my liver for a year. I questioned this saying that if it stored in my liver then why was I down for 8 weekly injections. I got told I was being silly. It's so disgusting the we're being treated like this!

I so angry now. I have no choice of changing GP surgery either as it's the only one here after 2 merged. I will be putting in a letter of complaint to the practice manager, my MP & health authority.

Thank you everyone for your help. It's very much appreciated.

Sleepybunny
Sleepybunny in reply to Bobs4803

Hi,

I think that if enough people complained to their MPs or representatives of devolved governments in UK then maybe something would be done.

I was wondering if the new Labour leader might be interested in the issue.

Have you spoken to PAS (Pernicious Anaemia Society)?

Also similar stories to yours on B12 Deficiency Info website .

fbirder suggested sending a copy of letter to local TV and newspapers. You could also contact local radio stations.

fbirder
fbirder in reply to Sleepybunny

Oooh! That's an idea.

Jonathan Ashworth is Matt Handcock's shadow. He might be keen on people telling him about yet more ways that covid-19 is being used to force doctors to undertreat people.

I'm gonna try to put together a letter tomorrow.

Bobs4803
Bobs4803 in reply to Sleepybunny

No I haven't spoken to PAS but I'm going through their web site & looking at everything!

Currently writing to GP, MP, Health Authority & Health Secretary. I will post any response I get.

Cherylclaire
CherylclaireForum Support

Although I had my NHS injections stopped after self-injecting quite a while back, I was concerned by the amount of posts on here, each saying they were receiving letters or calls informing them that their NHS injections had been stopped due to the coronavirus pandemic / that they were unnecessary because "the liver stores 6 months'/1 years'/2 years' etc supply ". Worse, some are being used to trial pills, and will be blood-tested to see if they worked when all this is over. (And if not ?????)

Those with PA cannot access the liver's supply for the same reason they can't access B12 from food: because it involves the small intestine. B12deficiency.info has quotes about this from the WHO 2001,2002 and from Dr Katie Brooks, which might help you if this is the excuse being used.

Although I doubt very much that my own practice would ever take this attitude, I felt compelled to write and ask them not to stop injections for those that need B12 injections. You can't be sure what pressures they are under right now. I addressed it to the Practice Manager.

At this later date, if PPE supplies are making it impossible to treat patients safely, the safest answer would be to supply B12 ampoules and sharps etc so patients can treat themselves. Nurses could use social media to teach patients (Skype perhaps) or recommend a youtube video.

One I saw on here recently is from a GP demonstrating how to self-inject, presumably for his own B12 deficient patients. It was a link from Galadriel1 in reply to a post from distractonaut called "picking up where I left off"- about a week ago I think.

Humane solutions are still easy to come by. So, I believe, are syringes !

Plenty of recent posts with advice on supplies. Unsurprisingly.

I haven't even had a letter telling me it was being stopped!

So sorry to hear that you’re bring refused your usual B12 injection. I am in the same boat & am concerned as I usually have them every 10 weeks & have just received a text message from GP to say that all injections have been suspended due to COVID-19. I also start to suffer from mouth ulcers & sore tongue etc if my injection is late. Their advice is to buy tablets but this does not work in those with PA. I’ve bought some Solgar ones that dissolve under the tongue but not convinced they’re going to work. We don’t need a compromised immune system in the middle of a pandemic do we!

Sorry, I’m new to this & I should have said that my previous message was fir Bobs4803 🤣

Just an update! I have written to my GP with a list of symptoms that are worsening by the day. I'm hoping I'll get a phone call asap. Once I speak to someone I'll let you know what happens. Thank you, everyone for your help & support.

Hi. I self infect was doing alternate to GPS 8 weekly as symptomatic after 4 weeks but now they refuse to give me any due to covid will have to give myself monthly injections for the foreseeable. Get syringes sharps bin etc from eBay just make sure they are sterile packed and get ampoules of rotexmedica brand (same as doctors use)from German pharmacy all legit chemists reasonable price. If you go onto b12 support group webpage you can get all info as too what type of needles etc you require and also instructions how to inject. Scary at first but been doing for two years and it doesn't hurt me as much as when they do it now! Just be sure you have all the info before you proceed. Good luck!

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