Once again, my group practice has stopped my B12 injections. I know this is difficult times but last time I was extremely ill and ended up going to surgery and having b12. I was assured that it had been reinstated but receptionist said not doing any.
I also was told February that my white blood count was low and was supposed to have a blood test which again has been stopped.
I would get a telephone consult with your Gp.
It's not acceptable.
They are still responsible for your care.
Thanks for reply. I will take your advice. It’s getting past the receptionist at our surgery.
Do you know if there Is there a supplement I could take. I’m scared to just order as I’m on a lot of medication.
I have PA and hypothyroidism as well as medication for breast cancer. Is there anything that would boost my white blood count and b12?
On the PAS information they suggest a high oral dose of 1000 mcg b12
If you Google injections being stopped it should come up.
You are entitled to a phone consult or write or do both.
You need to discuss your bloods with your doctor.
Hello, I, and many others are in this position by being denied B12 injections from doctors due to Government rules. We all need this injection. It is not a supplement, it is necessary. I have been on it since 1970s. It was suggested that I take Cyanocobalamin as an alternative, but I am rather wary, as the stomach just throws out oral substances. Has anyone else been given any other information. It is really worrying. Thank you.
Sub lingual s work for some . Its government guidelines. Doctors can give them. Staffing can be an issue. Some are getting prescriptions to self inject.
I had one 2 weeks ago and waiting to see if they continue.
I have bought my own supplies now. As have tried tablets in the past.
A ridiculous thing to stop.
I have bought my own supplies online. Even when my surgery goes back to normal the backlog of patients will be massive. It's frustrating that some surgeries are allowing their patients to self inject and others are not
I know. No consistency at all. I asked before lock down. Subcutaneous 'off licence ' santio ed by neurologist and my gp. Blocked by peer Gp. I'm refused as well. Am getting them at the surgery but getting changed all the time as staff short.
So glad I have my own now. Reduces the stress .
We have a local pharmacy who is now offering private b12 injections which are £30. While its reassuring to know there is an option I dont understand how they can offer it when gp surgeries are not doing face to face appointments.
I too have been having b12 since 1970’s and when surgery refused it in February I was really ill and had to go to surgery to see GP who gave it to me straight away.
I was assured he would re instate it and it’s actually on my repeat prescription but receptionist said no again in February and I went through same thing again and now again in April (although Coronavirus has set in I know)
Just waiting to see if a GP will phone me back.
I don’t want to go out to surgery as I’m classed as extremely vulnerable but I need to have this B12. You don’t just get over PA. just because blood test shows levels ok.
Thank you. I understand. It is so scary. You do get really ill without it. But the receptionist would not even let me speak to the doctor. Where are you from? I m living in Scotland. I just want to ask if there is anything else I can have if they insist I cannot have it. I am a widow and living alone and it is so awful because I miss my husband so much too. Thank you for replying to me.
Really sorry to hear you’ve lost your husband and can understand how lonely you must be.
I live in Braintree Essex and luckily have my husband with me.
I have been told you can buy tablets but I haven’t as not sure about buying online.
I was told by government today, that if my GP won’t give injections, to phone 111 and ask them for advice.
It’s very awkward when you have been told not to leave the house. I know that I will start feeling really ill within a week of not receiving my B12 and don’t wish to go to hospital. Seems selfish to me.
Wishing you well.
Chris
Hello Chris, thank you for your reply, yes it really is lonely without my husband. He was 20 years older than me so was in WW2. When his ship sank in the Atlantic in July 1942 I was not born until the August, but we had 53 years together,but the last years were hard with me caring for him. But I would not want him back with all this going on the this awful Virus. I am so glad you have your husband with you, bless you both. Thank you for the advice and that is something to think about to ring 111 and ask them for advice. No, you are not selfish, I know that it does make you feel really ill if you do not have the B12 injection. I know a couple of weeks before it is due that I feel I really really need it. Thank you Chris, and hope you get on OK, and stay safe and keep well. Best wishes Sue.
Thanks Sue. I normally get very tingly hands and feet but going without B12 caused me to get confused, blurred vision and really felt bad generally. I am 69 and my nurse said they were stopping a lot of B12 because of young girls going on fad diets and needing B12. Why don’t they single them out first? Not genuine people with lifelong problems.
I hope you have family around you to talk to, especially now.
Do take care
Chris
Hello Chris. I know what you mean, so many different symptoms without B12 injections. I am feeling really scared and anxious and just cant get past the receptionist. I am going to write a letter to my GP and ask what they recommend if we cannot get B12 injections. I know abut the pins and needles and blurred vision and confusion and so many more. I did not know about the silly young girls going on fad diets. Surely that must tell them something if they give these girls B12 injections. We cannot do without it. It is like telling diabetics that they can do without their insulin injections.s . I am on my own, my family are 3 and half hours train ride away and they are both disabled and not well at all. I have a good friend, but obviously we cannot meet up but speak regularly. But with this awful Coronavirus it seems the whole world is in chaos. I wonder if any of those who make these decisions about stopping our injections have pernicious anemia. I doubt it. Take care of yourself Chris. Thanks for getting back to me. Sue.
Hi Sue,
I know you don’t like making a fuss but I was told on this site to write to my GP and explain why you should have B12.
I have just phoned my surgery and was told again that I would need a GP to agree to it. I told her this was the 3rd phone call and that B12 was listed on my repeat prescription and was reinstated after February being so ill. It appears that they hadn’t read all my notes and she agreed.
I go on 27th which is when it’s due. I have to stand outside surgery and wait for Nurse to come and get me.
It is worth complaining to get past receptionist. I know they have a job to do but we have rights.
Write your letter, at least it will be on file.
I know it’s scary- try not to listen to news too often.
We were due to move to new bungalow as I can’t manage stairs. That is on hold at moment.
Take care, we will get through this. Just stay indoors.
Chris
Yes, I heard that too, that she had to stand outside in the car park, I hope you get on OK, I think we deserve to be heard. I was explaining to the receptionist what it is like without B12 and she said "Well, I a not a medical expert" I said "No, that is why I need to speak to the doctor". She put me on hold, came back and said "No, I could not speak to a doctor". I think we are being treated very badly. Take care. briarhillcat
Hi, I totally understand your predicament & suggest you try PurOrganica B-12 Super Energy Patch which also has Folic Acid in. Got them through Amazon at roughly £17. They do help but not obviously quite as good as the injections. Definitely worth a try! Hope this helps you.
Thank you Eloise81. I had not heard of patches. That is worth considering. We have to get through this bad time with the Covid 19, and not being able to get our injections is just another thing to have to cope with. This forum is very good.
Thanks again.
briahillcat
Good luck with them, they do make a little difference!
My daughters prescription was collected by someone and b12 was given as well. ?? On her prescription also. She'd had her injection at the surgery. She is shielding status but very good system . One way and patients given masks and an apron. Nurses fully protected. So she dudnt pay another prescription charge
??.
I was due my injection today and it was cancelled I was told tha you can go 3-6 months without getting it.... yet when I was a week late last month they moaned at me for not getting it on time....
Hello Stewie and all I too had my injection cancelled yesterday usually done a home because I am disabled I asked was there a supplement I could take was told yes there was but my body would not absorb it, I know there are patches, and tablets that you let melt under your tongue they have Hibroxycobalomin in them I have sent for some to see if they help.
Ok, thanks for that I will check them out
Hi,
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.
Pregnant and GP has stopped my B12 injections!
GP Stopped my 3 monthly B12 Injections
GP stopping my B12 injections. Replacing with oral B12
GP stopped my B12 injections after nearly 40 years
Anyone in the Fife area received a call from their GP stopping B12 injections.
