So usual story, GP's not having a Scooby. Daughter is deteriorating, physically and mentally despite our efforts to inform them of her increasing distress. Managed to get a GP appointment to discuss need to reduce gap between injections. Even though her serum levels are dropping again and she is suffering they have reduced her jabs from 8 weeks to almost 13. Her next injection was not due until 23rd December we saw GP last week and it was agreed she could have her injection yesterday. As we were leaving Nurse gave daughter a piece of paper with date for next injection. March 2025. I tried to tell her that's too long , and Nurse started rabbiting on about the life cycle of red blood cells being 12 weeks so she'll be fine, I questioned the validity of her argument, but I just thought there's no point trying to explain to you and bit my tongue. The woman had no comprehension of the situation,,,,,,,,,,,,,,,,Arrgghhhhhh
Daughter's ongoing Saga : So usual... - Pernicious Anaemi...
Daughter's ongoing Saga
So when you saw the G.p did they not agree to more B12 injections?Or just that one shd had?
My prescription was cancelled at one point by pharmacy .
Nurses refusing to do them as more often than 3 monthly ect.
If your daughter has been seen by a consultant.
They are the ones that carry more of a say than a G.p .
G.ps usually follow their suggested treatment.
As they did in my case
Depending on the age of your daughter consider self injecting ftom a prescription .
I do Subcutaneous ones at home .
Saves the nurse time and are equally effective .
I also have my own supplies .
It's not licensed in tgd UK but drugs are issued 'off licence ' all of the time .
Hood you can get this sorted so your daughter not on a seesaw .
If she keeps a diary of symptoms it can help .
Hope thr injection of B12 picks hef up again .
Hi,
I'm so sad to read she's still having problems getting adequate treatment.
I think you've probably already read these links and threads but posting them here again in case there are some you haven't read and also in hope they might help someone else reading the thread.
Have you contacted PAS to see if you can arrange for her GP to talk to PAS?
pernicious-anaemia-society....
You don't need a PA diagnosis to join PAS.
They have an annual membership that costs £20. Also lifetime memberships.
PAS membership
pernicious-anaemia-society....
Just wondered if you'd discussed with GP that inadequate treatment could increase risk of developing permanent neurological damage.
SACD
PAS have an article on SACD, sub acute combined degeneration of the spinal cord that might be worth passing to GP. It might nudge GP into paying more attention to your concerns.
PAS - Subacute Combined Degeneration of the Spinal Cord Leaflet
pernicious-anaemia-society....
You would need to be a PAS member to access whole article.
If GP says that there is no risk of SACD because serum B12 levels are within normal range then you could give them article below.
Search for "Turner SACD functional B12 deficiency" to find article about a patient who developed SACD from B12 deficiency with normal range serum B12.
Writing letters to GP about B12 deficiency
b12info.com/writing-to-your...
I think putting concerns into a short letter to GP is more effective than conversations and maybe send a copy to practice manager. Always keep a copy. Letters should be filed with medical notes but I always include a request to file letter with medical notes.
There may be relevant blog posts on PAS and B12info.com websites.
You can leave comments under the blog posts.
PAS blog posts
pernicious-anaemia-society....
B12info.com blog posts
Tracey Witty of B12info.com sometimes responds to the comments.
Thread - Patient Safety UK
Has lots of useful links for those struggling to get adequate treatment for B12 deficiency in UK.
healthunlocked.com/pasoc/po...
Thread discussing recent increase in UK forum members having B12 injections stopped or swapped for high dose oral B12.
Is this the tip of the iceberg?
healthunlocked.com/pasoc/po....
I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
If I have time, I may post other threads where I left useful info.
I really hope you find someone who listens to you and your daughter.
Help for doctors
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
pernicious-anaemia-society....
PAS organises events such as webinars that GP might find interesting.
pernicious-anaemia-society....
2) Has her doctor heard about Club B12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings and have hosted a conference.
3) Good articles to pass to GP
B. Wolffenbuttel wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org organises interesting online talks about B12 deficiency
Hi Polo22
As a mum myself I really understand how distressed you must feel.
While you battle on with the GP would you be able to consider a sub- cutaneous injection at 6 weeks, so between surgery jabs.
Sleepybunny has given you links to NICE guidelines that suggest symptom led treatment. Can you consider other local GP practices?
🤶🤶🤶
Have you considered other ways to get her the treatment she needs and deserves such as private injections. I totally agree the doctors should treat her as an individual and give more frequent injections but perhaps another way might be worth a try. Would they consider say monthly injections if you were trained to administer them? The cost would be almost zero and would save them considerable time? Win win?
Not all GPs in a practice will necessarily be of the same mindset regarding B12 injection frequency. It is worth trying to discuss this with a different doctor.
I was very lucky with my GP, who was willing to treat me as an individual and sought treatment advice from secondary care. She had my injections restarted at a more effective frequency. I must say that some of the nurses were less than enthusiastic about that. Some of the nurses were very uncomfortable with a variation from the 3-month norm. My GP offered to speak to them, but I decided that this would not be a wise move for me as they were still my injectors (despite reluctance).
The thing is, it worked ; frequent injections finally meant that I was getting some improvements.
I think Nackapan only struck lucky with her 6th GP !
Yes 6th and that was by default .
A nurse had refused to give me a B12 injection.
I asked to speak to the practice Manager as a quiet sit in.
Couldnt move actually and at that stage balance horrendous.
I'd actuslly fallen out of a taxi as though drunk !
I herd my name being called .
All I could see was an open door to a consultation room . So I walked in.
Very lucky as Gp soon worked out I eas not on hef list bug coukd see very ill.
A flustered receptionist arrived but was thankfully dismissed .
Never did meet the practice Manager but stuck with that G.p .
Sticking with a GP who will no doubt remember how ill you were is a very good idea - but in this case, a necessity, having worked your way through the list !
After this, you might have expected an apology or two - or at least a ring-fence put around your B12 frequency.
Sorry neither action taken.
When my husband’s GP extended his injections from 2 months back to three months, he wrote to the GP expressing his feelings of devastation. This seemed to do the trick, but meanwhile I had googled pharmacists in our area who would give B12 injections. I found 2, both charged £30.00, but we would have used them as a short term solution if necessary. I also found a registered nurse who did them at a beauty salon! Just a thought.
This is all due to the coalition government in 2010 going for extreme austerity. They demanded GPs cut back costs and the GPs chose B12 injections. The New Nice guidelines of 6th.March completely destroy the arguments you have been receiving from GPs and stroppy nurses who have no authority to intervene. See link to these on the right of this screen.
It is really important to get the injections often enough to avoid having symptoms. I get tingly toes after 3 weeks, so I inject weekly. The easiest solution might be for you to learn how to give the injections. There is info on this forum on where/how to get the B12 if you are in the UK. I am in Canada and luckily can just go buy it over the counter without a prescription.
Honestly, I have given up with the Doctor. I just recommend you get on with it yourself. Delay = damage.
From bad to worse
Help re B12 and folate treatment please...
Vit B12 deficiency and pregnancy
Ongoing complaint Advice 
