B12 injections swapped for tablets!! - Pernicious Anaemi...

Pernicious Anaemia Society

26,236 members18,195 posts

B12 injections swapped for tablets!!

lpmsjrb profile image

I recently received a text from my GP saying they had cancelled my next B12 injection and were switching me to tablets to avoid unnecessary trips to the surgery for my 6 weekly injections. I then phoned the surgery and reminded them that I had pernicious anaemia and they were very apologetic and immediately re-instated my appointment stating they had not realised this and were sending messages out to everyone who received B12 injections. It is worth phoning your GP if you are switched to tablets as you may have been overlooked. My surgery have told me they will never stop giving B12 injections.

14 Replies

Good.

My surgery said they had stopped b12 inje ti s for all those without a PA diagnosis.

I havent one . I was told Intriscic factor test wasnr necessary. I was given right at the start a parietal cell test which was negative.

I've managed so far to get my Injections but I'm not a quiet customer/patient. Ironically had a very bad time after last one. The appointments keep changing by text as nurses are short ( o ly 2 nurseslwith in a 6 doctor practice) so I still think ridiculous they wont prescribe and let you self In ject. No one really wants to go to the surgery noone there wants you to go!

Jobrander1 profile image
Jobrander1 in reply to Nackapan

My surgery won’t do B12 injections because of Coronavirus. On my 3rd attempt to book an appointment the receptionist arranged that l speak to a Practice Nurse who told me “as we were all topped we could manage without B12 for awhile”. Told the Practice Nurse it doesn’t work like that. They suggested oral B12 tablet. Which is useless if out can’t absorb B12 through your stomach. A phone call was arranged for a Doctor to call me. They too suggested oral B12 tablet. Or l could wait until they started B12 injection again.

I have asked to do the injectiona

myself. Prescription to my chemist and the injection kit to my home address. I am not a medic but YouTube has “how to do it yourself “

Ok Jo

Jennybob profile image
Jennybob in reply to Nackapan

You are lucky, I told mine that and the doctor just said to take the tablets, it’s better than nothing !!!

Nackapan profile image
Nackapan in reply to Jennybob

It took months and perseverance rather than luck.

Mine has stopped too, ONLY prescribing tablets - no good for me. Only choice is to self medicate. Luckily months ago I bought the ampules (but not the needles as no idea what I need to buy sounds silly I guess). Not self injected yet. Also bought lots of different types of drops, lozenges etc etc etc.... havent the courage to try self injecting yet,,,,

Nackapan profile image
Nackapan in reply to SimNew

I've done one. So a complete novice still. I did subcutaneous as not brave enough and not been taught how to do IM.

There are posts from fbirder and others regarding what needles you need for IM.

I used a yellow one for subcut. 30g others use orange for subcut . 5/8 or 1/2 " long . (27g....30

You need a green one to withdraw the b12 whatever.

I've purchased a ampoule cutter recommended but it's' in quarantine' at present as only arrived today. Long wait.

So not used it yet.

The ampoule with white dot facing you can snap away from you with a cotton pad . I found this the hardest part . No idea why .

Hope it goes well.

SimNew profile image
SimNew in reply to Nackapan

Brilliant, thank you x

wedgewood profile image
wedgewood in reply to SimNew

You can get needles , syringes, swabs and sharps boxes from medisave.co.uk . Needles and syringes also from exchangesupplies.org

To withdraw , use a long needle eg- 21G x 1 1/2 inches

To inject I.M. 25 G x 1inch .

SimNew profile image
SimNew in reply to wedgewood

Hi thank you. Yes it's all very well if you know what to buy but with alot of different needles etc etc I find it complicated and confusing but that's just me x thank you for your help

SimNew profile image
SimNew in reply to wedgewood

Thank you so much for the message, really appreciated

Very good news, shame not all GPS are that good.

Hi,

I'm pleased to read you got your treatment.

If you have any problems in future or know others in your area whose injections have been stopped/delayed/changed to oral B12 tablets, see links below....

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 post about stopped injections

b12deficiency.info/blog/202...

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 members helpline.

PAS support groups in UK

pernicious-anaemia-society....

Support group meetings are cancelled during pandemic.

Some people are being given 50mcg cyanocobalamin tablets instead of their B12 injections.

In UK, B12 injections from NHS have 1mg of B12 in them and are usually hydroxycobalamin although a few people have cyanocobalamin injections.

In UK, the 50mcg cyanocobalamin tablets are normally only prescribed for dietary B12 deficiency. For B12 deficiency due to gut absorption problems eg PA (Pernicious Anaemia) , Coeliac disease etc then injections are recommended.

Concerns about treatment

If people are concerned about being moved onto oral tablets, might be worth expressing concerns in a polite letter to GP along with any useful evidence eg references to UK B12 documents/articles?

I also suggested on another thread that people who have had B12 injections changed to oral B12 tablets or have had B12 treatment stopped totally might consider keeping a daily symptoms diary and then keep GP informed by letter if and when symptoms start returning.

I feel it's helpful to have any concerns in writing so there is a paper trail in case there is a need to make a complaint in the future.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

In normal times, local MPs may be interested to hear from anyone whose B12 injections have been stopped.

I wrote a 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 or others might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

Hi. My 12 weekly jab was due 1st May. I phoned the week before and they said they aren’t doing them at my surgery. It will be fine as I’ve been on them for more than 6 months so I’ll be okay for at least 6 months more they said. But if I got ‘symptoms’, to phone back and they’ll discuss alternatives. My trouble is the main one then was actually a sort of brain fog- I had no idea how bad I was. Forgot which pedal was which in the car(while driving, eek), burnt 7 pans, sat at he surgery once talking to myself wondering why I was there. Last week I had a permanent full headache, still there this week along with pins and needles or restless legs. So I phoned the surgery today and the gp phoned back saying they’ll send oral tablets prescription to pharmacy. I said I wouldn’t absorb it. She said it’ll be fine by now and I can decide whether to go back on jabs when they restart - but I was clinically tested and diagnosed with PA. She still said it’s fine after the first 6 months of top up jabs.

Why are there so many varying medical views on this. I went to a different gp at the practice a few years ago and he was horrified when I said I hadn’t had jab for 8 months and just took tablets. Confusing information

You may also like...