Hi , I was diagnosed in January with very low B12 ( less than 100) enlarged blood cells and pernicious anaemia. I have just finished 3x weekly loading doses of vitamin B12 injections. My symptoms were extreme tiredness, weakness, numb feet, hands and legs and loss of balance. I began to feel a little better after about two months and the last couple of weeks felt almost normal. Last Friday I received a call from a nurse at my GP practice, telling me not to come in for my injection that day as they were finishing and I was going to three monthly injections. I was kind of expecting this as I knew I had received the NICE recommended loading doses , but thought a Dr would discuss how I was and if I felt I needed to wean off slowly. Since stopping injections six days ago I feel my symptoms are returning. I feel very tired, am sleeping badly and my left leg hurts more than it did. Can anyone advise me please? I keep thinking it is in my head, I can’t relapse as quick as this? I was too shocked to say much to the nurse when she called, she did say a Dr would ring me to discuss ( they haven’t yet). I am so scared of going back to how I was, I honestly felt like I was on deaths door. Any advice will be very welcome.
Loading doses finished.: Hi , I was... - Pernicious Anaemi...
Loading doses finished.
Yes same happened witb me.I got to 5 weeks post loading doses having tried sprays, tablets of B12 .
Was mostly bedbound.
Found this forum.
Booked a B12 Injection via receptionist.
Booked a cab and got there .
Of course B12 injection refused by the nurse. A quiet sit in .
Asked to speak o thd practice Manager .
Heard by name called and as bouncing of walls with a deep rimmed hat on ( light sensitivity) went straight into an office where I thought thd call was coming from.
Ended up facing a puzzled G.p .
She was concerned .
Listened and put me back on every other day B12 .
Go back.
As well as write in so on your record .
You do not need another b12 level done .
I had seen a neurologist and had a brain MRI as symptoms severe.
Get referred to a specialist if needed who csn write yo G.p .
Meanwhile ask for mord b12 injections.
Folate vit d and iron often low ax well.
NICE guidelines .
Many need more than 3 monthly.
Bit confused by what you've actudlkg recieved.
6 b12 injections over 2 weeks ?
Of did your every other day continue for longer?
If they did suddenly being able to last 3 months is ridiculous.
I went to two a week then weekly and do on I got to 3 weekly a few times which wax a mistake and set me back.
Although disputed several times I have a two weekly NHS prescription of B12 still 6 years on .
I also bought my own .
I do subcutaneous b12 injections at home and IM at the surgery .
Everyone needs different regimes.
Sorry, I wasn’t very clear, I had three months of 3x weekly injections so have had the recommended loading dose. But I still have numb tingling feet and slightly numb leg, even though I feel better in myself ( not hard as I felt so poorly in January) I have seen a neurologist twice, the second time two weeks ago ( at my GPS request ) , he said I was much improved and would recommend I go to three monthly injections now. He wouldn’t listen when I explained about my numb areas and said they will improve in time. I will make an appointment to see my GP if they don’t contact me. I’m going for an endoscopy today and am tearful and anxious at the moment, I will try and pull myself together and try my best to push for more frequent injections. Thank you so much for your response.
My injections were given 3 monthly after the loading dose, like you I relapsed and symptoms returned. I battled for 2 monthly injections which they 'reluctantly' prescribed. I the same as many others resorted to buying abroad and self injecting.
If you still have the results of previous B12 levels hold tight to them as your proof of need for injections. Do not let them retest your B12 levels, it is obvious they will be high. This is your wellbeing we are discussing so when the Dt rings be adamant. If you were a diabetic they wouldn't stop your medication !
Be persistant.
Thank you Jillymo, I will do my best to push. I feel the GP is fed up of me now and just wants me to go away. They did all the right things in January, probably because I was so poorly and my B12 was so low and like many others on here they said my exhaustion and memory issues were anxiety when I initially saw them two years ago. Thank you very much for responding, much appreciated.
Can I clarify if you have a of diagnosis of pernicious anemia? I have read you profile and see you have enlarged blood cells. If you have a diagnosis of PA injections should continue for life ! Your Dr sounds like mine, but nevertheless this is your wellbeing. If like mine he /she digs their heals in ask who you can hold responsible for withholding your much needed B12 and your decline. When we are so unwell we shouldn't have to fight to obtain our medication. If all else fails you could consider self injecting rather than substaining further nerve damage.
I'm sorry to hear your having to go through this but your not alone.
I do have a diagnosis of pernicious anaemia Jillymo and have been told I need injections for life. I don’t feel well enough to go to three monthly at the moment.
Explain this to your Gp when they ring - The prescribing of 3 monthly injections is ridiculous, we are all different so one cap does not suite all ! My Dr and the neurologist I saw were just as ignorant in regard to my symptoms or my need for more frequent injections. I spoke to the surgery manager and with my hands tightly sqeezing her neck ( joking ) I did managed to get 2 monthly injections prescribed ! I have been where you are and it's so damned exhausting having to battle. Your story and others like it makes me so bloody angry.
pernicious-anaemia-society....
I have just seen your reply to Nackapan. Most loading doses consist of an injection every other day for two weeks then prescribed 3 monthly injections. To be given injections 3 weekly for 3 months is unusual so they must have thought you warrented them.
I hope your endoscopy goes well and gives some answer's for your deficiency. Try and keep strong. 💐
Go back to the gp and ask them to inform the neurologist that your symptoms have started to return after x number of days. Given that you had/have neurological symptoms you should continue more frequent injections until there is no further symptom improvement, then the guidance would be 2 monthly not 3 monthly. But you should be treated according to your symptoms, not a standard protocol, and you may need more frequent injections than 2 monthly in the future (and definitely at the moment).If no joy, write to the practice manager. We need (as a group) to make it clear that the "standard protocol" is not sufficient.
If you can possibly take someone with you to your appointment it might help you to be heard, especially when you feel so exhausted and unwell. Enlarged cells and continuing neurological symptoms suggest PA, in which case you will continue to need more frequent injections. Good luck.
Hi,
Welcome to the forum.
Some links I post may have details that could be upsetting to read so please think about having someone supportive read through the info with you.
You mention some neurological symptoms eg weakness, numbness, loss of balance.
The BNF ( British National Formulary) is a book for doctors with treatment recommendations.
It suggests that people with B12 deficiency with neurological symptoms should have this treatment pattern...
A B12 loading injection every other day for as long as symptoms continue to get better then a B12 injection every 2 months.
The every other day loading injections could go on for weeks even months ... there is no set time limit.
If your symptoms were still improving after 3 months of 3 x weekly injections then I don't know why they were stopped
The doctor can find this info in their BNF book Chapter 9 Section 1.2
Info can also be found online ...search for "BNF hydroxocobalamin"if interested.
Link about writing letters to GP about B12 deficiency.
b12info.com/writing-to-your...
Link has letter templates. I think Point 1 might be relevant to your situation.
I think putting queries about treatment into a letter makes it harder for GPs to ignore. Always keep a copy for yourself as could be useful if you ever need to complain.
PAS (Pernicious Anaemia Society)
Have you considered joining PAS?
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
PAS members can use the Members support helpline. They need to log in to PAS website to get helpline number.
pernicious-anaemia-society....
PAS have support groups in UK. Most meet online.
pernicious-anaemia-society....
PAS website has lots of useful leaflets. Some people print these out for GPs.
pernicious-anaemia-society....
Other UK B12 websites
B12info.com
Set up by a UK campaigner on B12 deficiency issues.
Lots of useful info and interesting blog posts.
The B12 Society (charity)
Useful lists of symptoms and causes.
B12d.org (charity)
Has online talks about b12 deficiency and monthly coffee mornings near Durham.
I left some info that you might find useful in this recent thread.
healthunlocked.com/pasoc/po...
I'm not medically trained.
Would you like me to post links to threads where I left info to help UK people struggling to get adequate treatment eg suggestions of UK B12 documents to read, organisations to contact if unhappy with treatment etc?
Thank you to everyone for your helpful replies. The Dr called me and has agreed for fortnightly injections for now. Would have preferred weekly but will see how it goes. She seems open to suggestions. It’s thanks to this Dr that I had three a week for three months , what she doesn’t know she finds out , which is what all Drs should do. The partners at my surgery are are the ones who want to do as little as possible. I have had an endoscopy today and told I have gastritis, that is most probably causing my pernicious anaemia. Have had biopsy’s taken , fingers crossed they don’t find anything scary. Thank you again , this is a brilliant forum. I’ve read all the posts for a while now but this is my first post. I’ve learned so much from people on here.
"She seems open to suggestions. "
Would you like me to post some links that your doctor might find useful?
Although my B12 was initially only 1 ng/L below the range, at 196 ng/L, I was given loading injections as soon as my GP got the result returned.
This was 6 loading injections, seemingly usually given over two weeks, but in my case, a month. Busy nurses ? Nothing really changed much anyway.
Then maintenance injections of one every 3 months. My folate and ferritin were low and treated. Vitamin D was later prescribed as osteoporosis of the spine was found. My B12 symptoms both worsened and increased. I felt awful and was struggling.
Luckily, this was noticed. My GP kept trying to find an answer, and had my MMA tested. This was raised, giving her the diagnosis she suspected: functional B12 deficiency. Having been in contact with consultants, she was able to request 2 B12 injections a week immediately (the nearest nurses could get to every other day).
Because this new frequent treatment was starting to work, the GP requested that they continue at this frequency. After 6 months, I started to get worse again - so the frequency was reduced to 1 a month and I was sent to consultants after that. My GP believed that she had done all that she could and that this was now beyond the remit of primary care.
Nothing else was ever found by any consultant, although she made sure I saw everyone. All else has now been eliminated.
Since this frequency had worked, up to a point, I decided to try every other day - and self injected at this frequency for a couple of years. Then felt able to reduce this back down to the previous 2 per week. I told my GP what I was doing the day after I'd done my first injection - just in case she tried to talk me out of it. To her credit, she didn't. My raised MMA dropped down to within range only after 3 years, on the 6th test.
Convinced that you are dying, then later being terrified of going back into that situation ? Many people, including me, will remember that feeling. A shame most GPs don't seem to understand the reality of living like this, because if they did, they would surely be monitoring and observing patients more closely and offering continuity of care.
My advice is to get a good GP, one you trust, and tell them exactly how you are feeling. Not a "B12 expert" necessarily, just someone who will fight for you when you are too ill to help yourself.
Get folate, ferritin, vitamin D and thyroid levels checked, if this has not already been done. You may need some additional help with any/all of these too. Regular monitoring of these are useful. Keep records, so you can be aware of any changes up/down. Sometimes these can be a bit "blippy".
A copy of a written list of your symptoms (at least the worst of them, the most frequent, the most visible, the most upsetting to you perhaps) might help your GP identify improvements or deterioration. One brief sentence of how each impacts your daily life might also help your GP picture how this affects you.
An initial three months of 3 injections a week is quite unusual - so it seems that whoever requested this frequency recognised that you were very ill, and that your B12 was very low. This sounds like someone who may also be observant enough to have noted improvements made, and may be persuaded to continue this frequency to see if the improvements continue. Your B12 level is no longer the issue - and cannot help a GP determine physical improvements or a frequency that can effectively ring-fence those improvements .
Anyway, why maintain what could be improved upon ? Why would a patient be satisfied to accept less than they have the potential to retrieve ?
Why would a doctor ask that of you ?
The NICE guidelines are now every other day until symptoms, especially neurological symptoms stop.I get my official jabs every 8 weeks. Without this group I don't know where I'd be. I get my supplies from Germany as do others, and damn the GP!
Co-factors are very important. B12 does not work alone. So once you are getting enough get extra:
Vitamin D
All the Bs, I use Igennus Healthcare Super B-Complex as it contains methylated forms that are the most easily absorbed.
For your nerve myelin sheath rebuilding DHA omega 3 fatty acid fish/algae oil and zinc.
Magnesium, lotions or bath salts, to help energy release and for cramping muscles.
Stay off alcohol.
🍀
No loading doses allowed 
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Relevence of repeat b12 after loading doses
Not tolerating loading doses
GP appointment update
