How many self b12 injections did people administer in there first few weeks initially
I’ve had the initial one intramuscular from a a (professional ) at a clinic and si my first b12 subcutaneous
My gp is adamant even with abnormal ifa test and all symptoms and family history ..I’ve not got P.A. …he’s really not interested and the things he says to me feels like he’s plucking them out the air,he certaining hasn’t read any new nice information .
hes more interested in sending me for new tests, I’ve had years of tests it’s utterly ridiculous,I’m now in process of changing to another gp in my surgery
tired and fatigued to keep taking the surgery on , but I know I will eventually
I’m still waiting for medicheck blood results ,but don’t want to wait any longer to start the subcutaneous process so wondering if people done as many as nhs does in beginning
Slightly nervous of how many
Thankyou
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Dislancas69
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The frequency of loading doses seems to differ - mine gave me 1 per week for 3 weeks before trying to switch me to monthly. Others do every second day for a few weeks. And still others do every day for two weeks!
How did you tolerate your first two injections?
If you’ve had an abnormal IFAB test, that is a positive diagnosis for PA.
What other tests is he wanting? Tbh, ruling other things out can be helpful too.
I’ve told him my ifb is classed as positive, he’s having none of it ,I’m banging my head against a brick wall really ,but his actual answer was it’s just a lab thing after my 3rd appointment …ok I thought this is wasting my time, two close family members have diagnosed P.A. and my daughter b12 and folate deficiency ,I can’t say the gp is any better with her either
I’m extremely forgetful and confused on occasions so he’s going to do a moca test next time and he’s wrote possibly looking into tachycardia I think it’s called Ive had some pains in my bottom of spine this year and palpitations/thudding in my chest added to the numerous other symptoms
I really appreciated the extra tests if I thought he was interested in helping me but I certainly aren’t feeling like that when I come away from him..I definitely am made to feel like I’m making him bothered
My first b12 I had slightly painful arm and metallic taste while eating
My subcutaneous one left slight uncomfortable feeling with slight abdominal pain but that went away and that was Thursday and today I’m wondering should I try again but nervous as to what others have done if self injecting rather than in surgery
I’m so sorry you’re going through the wringer while trying to get yourself sorted. It’s a beastly deficiency isn’t it.
It does sound like your doctor is less than helpful - are you able to get a second opinion. I’ve had my own issues with doctors (my recent post outlines the most infuriating one!) and it’s really disheartening to be asking for help and being treated like a nuisance when you feel so rubbish.
I would push the family link and the impact on your day to day living. The B12 result you had initially unfortunately falls in the “not deficient” range for everyone except Japan.
Asking for a therapeutic trial of the loading doses might work? Or are you confident in doing them yourself? I do intramuscular into the thigh muscle. The first one is definitely very nerve wracking.
Encouragingly my memory issues and brain fog/confusion have improved since being on a strict schedule of B12.
The second opinion was like the first as he just went onto me about my first gp and really pointless and I just felt extremely upset we spent most time arguing over my abnormal intrinsic factor antibodies result on patient access being changed to satisfactory/normal on nhs by my gp
This is how I’m trying hard to get across the P.A. family connections, but the new NICE guidelines are trying to keep away from P.A. diagnosis as there only trying to give people the least b12 meds and send you on your merry way ,so everyone’s running on empty(so to speak) ….. im ringing over next couple days and asking for third gp
I’m now in early stages of self injecting and hopefully like lots on this forum will see some results like youself it would really be amazing if I eased any of my brain fog /confusions/fatigue and using my legs
Have you put this in writing in a letter to GP surgery along with evidence eg test results/quotes from relevant health documents? Maybe include a request that the letter is filed with your medical notes to ensure it is.
I think putting things in writing makes it harder to ignore. If there is a need for a formal complaint in future then it may be helpful to refer back to any letters you wrote. Always keep copies for yourself.
As far as I know GP surgeries should correct factual mistakes in medical records eg wrong name, wrong address etc.
They do not have to change a diagnosis just because a patient disagrees with it.
I have read in past that where patients disagreed with a diagnosis in their notes they could ask to have a note inserted in their records explaining that they disagree with it and giving their reasons.
Your help is so appreciated ..I need to get everything together get everything on paper,I’ve sent one stating some of this perviously but no reply ,so I need to ramp up my letter writing thank you
I just deleted my earlier post thinking ai was going to good in my surgery unfortunately my daughter has informed me this isn’t going to be the case ,for a moment I thought it was my help to move on from all this
Hockey player has mentioned the possibility of spinal cord damage.
I'm not medically trained but my understanding is that delayed or inadequate treatment increases the risk of developing neurological damage. In severe cases, SACD, sub acute combined degeneration of the spinal cord is a possibility.
I believe previous chair of PAS, Martyn Hooper, had SACD.
I've read case studies/research articles that suggest SACD can sometimes be treated effectively if found early enough and if patient is given enough B12.
Might be worth mentioning any concerns about this in letter to GP as it might make them think.
Might be worth passing PAS article about SACD to GP.
GPs might say that SACD is not possible in someone whose serum b12 level is normal range.
If they say this, you could search for "Turner SACD functional B12 deficiency" which will show an article where a patient developed SACD from b12 deficiency even though serum B12 was normal range.
A warning
Writing letters and being an assertive patient can lead to strain in GP/patient relationship.
From personal experience, GPs can have subtle ways of getting rid of people they consider to be awkward patients so might be wise to have a back up plan eg another GP surgery.
I stayed far too long at a GP surgery where GPs were not listening and knew little about B12 deficiency because it was so convenient to get to.
To help your GP
It may be possible for your GP to talk to PAS. Perhaps you could make this suggestion in a letter or in an appt?
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).
His most recent article was an overview of treatment and diagnosis which could be a good one to pass to doctor.
Search for "Wolffenbuttel B12 deficiency overview 2024" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org has some interesting online talks about B12 deficiency.
It's a UK health review website which wants people's good and bad health experiences.
GP surgeries and hospitals sometimes reply to the stories.
Forum members from here have posted on it in past. I think stories can be posted anonymously. Put B12 deficiency or Pernicious Anaemia in search box to see relevant stories.
It's possible that posting a story on Care Opinion might irritate GPs and lead to problems with GP/patient relationship. GPs can remove patients from their list if they feel the relationship has broken down.
The BMA has an article on removing patients. Search for "BMA removing patients".
Thankyou so much for all the links it will take me few days to get through them, I’ve started looking into the gastrin test this morning and I wouldn’t have known my way forward on some days without help your sending me, with both my daughter and myself being ill it’s been a hard time
That’s how he said it your serum b12 is normal on my first appointment ,but after reading on here and researching and joining PAS I know that’s not true, I’ve gone from extremely active even with iron deficiency anemia on and off for 10 years,ibs and so many symptoms,to in past 3 years weakness in my legs and other issues to in the last 8 months struggling to walk or carry anything with fatigue and confusion spending so much time on sofa/bed
ifab on it's own wont get injections from NHS unless they also have evidence of B12 deficiency .... they have included this get out clause in the latest B12 guidelines
....Autoimmune gastritis is associated with the presence of auto-antibodies that work against gastric parietal cells and intrinsic factor. These can be detected in the blood but are not always present. Even if they are present, this is not always indicative of autoimmune gastritis..... "
hopefully active b12 or MMA might provide some more definitive evidence of B12 deficiency.
Thank you for information really appreciate how kind everyone is on here
I’mtrying hard to explain to the doctor all my symptoms are same as my family members who are diagnosed with P.A.
So I’m hoping my private tests come back will help me
It’s just really sad nhs aren’t there to help anymore when people are really struggling ,I will continue to see if I can get some quality of life back by self injecting
I'd be interested to know if the 'Even if they are present, this is not always indicative of autoimmune gastritis', referring to auto-antibodies was really intended only to refer to Parietal Cell Antibodies, [PCA] not PCA and IFAb. PCA is common [95%?] in Autoimmune gastritis, but not specific. IFAb are less common [about 50%] but diagnostic when present.
looking at the wording of this bit, i think they do intend it to mean IFab :
'strongly suggests' seems to imply they don't consider it 100% proof / some small doubt remains . If the committee had accepted there was absolutely no doubt about it (or were not looking to include a get out clause), i would expect to see something like "confirms" used here, rather than "strongly suggests" .
"Identifying the cause of vitamin B12 deficiency
Recommendations 1.4.1 to 1.4.6
Why the committee made the recommendations
The committee agreed that laboratory guidance would need to be followed when interpreting anti-intrinsic factor antibody test results. Based on their expertise and experience, they acknowledged that these test results can often be difficult to interpret, so laboratories would need to provide additional information to aid diagnosis.
The evidence also showed that, while a positive anti-intrinsic factor antibody test strongly suggests autoimmune gastritis, a negative test is less reliable so cannot be used to rule out the condition. Therefore, some people may need further investigations. ..... "
I don't trust committees. The classic description is when a committee is tasked with designing a quadruped, and they need a horse, but end up with a camel. Or they meet to discuss what colour to paint the offices. First choice of 50% is pink, first choice of the other 50% is blue, but second choice of each group is yellow. Result? Yellow offices that no-one likes.
The committee recommendations of further investigations sounds like a get out clause.
My gp although he’s a lovely person probably outside the surgery , unfortunately if asked in the surgery to design a quadruped and need a horse would absolutely not understand in the first place and we would probably get a human ,and he practices (get out clause)rather than up to date b12 information,thank you so much for your reply
Having long history from 8 year old being isolated in hospital for 5-6 days after a week of sickness and diarrhea at home rushed to hospital my mum never got a diagnosis for me
up until 10 years ago of endoscopies and colonoscopy’s barium enemas,never having biopsies from them, but finding nodules on my voice box ( op to remove ) hiatus hernia (ppi prescripted) , gord,swallowing issues, ibs leading to blood loss from fissures , i have been taking iron syrup for a long time as 10 years ago I was extremely ill with iron deficiency anemia found I couldn’t get up steps or stairs, breathless n palpitations and after thinking maybe most of my symptoms could have been menstruation and menopausal, I had a oophorectomy 5 years ago and since have been on cosmocol for constipation some days diarrhea on others …these things I have got used to living with,it’s all the other things like brainfog/ confusion ,unable to walk on days and not able to carry anything, plus so many other symptoms ,slight blurred vision lately has worried me
Thankyou really is helping me having everyone’s input I’m hopeful of my new blood test results but am also hoping my gp will also look into all of this instead of me on my own
It needs to be said that any B12 tests done after your first injection will probably be inaccurate, and that your IFAB, symptoms and family history should be strong indicators to your GP that you have PA and require B12 injections for life at a frequency to manage your symptoms. Anaema ( iron deficiency) is not a diagnostic tool for PA. My iron levels have remained quite high, and I am inclined to snarl at anyone who tells me that I can't have PA because I'm not anaemic.
My GP gave me 6 injections over 2 weeks, then jumped straight to 3 monthly, which gave me hope and some functionality but not recovery from the long-term damage. I have been self injecting every other day, sometimes daily for a year now, and finally having more good days than bad ones. I was deficient for a long time, which wasn't reflected in my blood tests, which showed 'low normal'.
You cannot overdose on B12. YOU CANNOT OVERDOSE ON B12!
Keeping a symptoms diary will help you keep track of your progress because it can be indiscernible day to day. PAS has some great resources to take to your Dr to help with your discussions. I hate that it is so often true, but in this, the GPs are very poorly informed.
Stay connected with this group as it is a great source of encouragement and reassurance, and good luck! 🫂
Wow on my first appointment my gp said you can’t have P.A. because you havent got anemia, at that appointment I actually thought are u for real I’ve been on iron supplement on and off for 10 years, until coming home and researching you do not have to have anemia to be diagnosed with P.A.
I still pushed for my tests as my sister has diagnosed P.A. problems walking and extremely high blood pressure and gran has been diagnosed for 40 years and she’s still struggling for more injections she’s never stopped struggling she never gets to her 10 week appointment without being ill,
this to me is neglect and ignorance from our system, especially as they cannot hide there heads in sand anymore
My daughter who’s b12 and folate deficient and recently has had endoscopy they found acute alcers and she’s waiting for a follow up endoscopy after 8 weeks, really all our family have very similar symptoms and everything seems to get back to b12 , and the end diagnosis is P.A. for our family even though all the new findings in NICE are trying to still make you think you are going to have a couple b12 meds and happily go on your way for rest of your life ( because you are well now)…purely nonsense for some of us
He told her not to read internet misinformation on b12, he’s definitely someone we are moving on from as the stress from just seeing him is beyond ridiculous,
I m definitely letting you all know when eventually we get diagnosed as I wouldn’t be able get through this without this forum and such kind people like urself
The research now says that 60% of people with Pernicious Anaemia will never develop anaemia. Instead we are seeing psychiatric (my anxiety was through the roof) and neurological symptoms first
So far she’s had 6 x b12 injections over last 2 weeks and her ppi doubled that’s it until her results, they have taken lots biopsies and a further endoscopy 8 weeks from the first
I'm about 9 months since diagnoisis self injecting once a week IM or SC. You may want to get B12 from Germany and self inject untill you work out whats actually happening and are in agreement with your GP as I do. But, don't dismiss the extra tests they are probably worth having. B12 deficiency has a lot of different causes and they are not all well understood. 'Classic' PA where its an automimune problem with the intenstine is one but there are others so try to get what you can from your GP. I do sympathise, its a mess in terms of diagnosis, treatment and advice. The upside is that B12 injections are cheap and easy to self-administer and have no significant dangers if you follow basic advice. The down side is that many of us will spend a lot of time finding out how to get well and stay well.
I’m still navigating the forum myself so am unable to send u all the information I had sent to me , but I’m sure if u start a post asking for (help with SI self injections) someone on here will help, in the mean time I will look into how I go about sending to you
thankyou I bought them from Germany within a couple of weeks joining this forum as kind people helped me in that direction I was waiting for gp to help so put off starting self injecting ,unfortunately it’s not happening
While waiting and I was going down hill I’ve had first one in clinic and have twice self injected and was looking at how often anyone without help from gp were injecting especially I first couple of weeks ,myself now having 3 in 8 days altogether
Thankyou for taking time to read really is helping me
My mother, mother's mother and my father were all diagnosed with PA. I have had the test and wasn't diagnosed with PA but had all the symptoms, so bad the GP thought I had MS. I then SI B12 for seven years every three days and feel better than I ever have, though this past month I've stopped SI B12 and take a tablet now every day which I'm coping with really well, so far. I have injections just in case.
Ive was sent in to hospital 2023 for tests 3 nights as my previous gp (not at my surgery anymore) thought I had MS but I went on to be diagnosed with osteoarthritis fibromyalgia and fnd and have gone down hill from there
This year with my daughter getting her b12 folate deficiency recently has made me look more at possibly PA for myself I’m definitely staying with my injections even though it’s going to take me a while to get used to the idea of self injecting ..hopefully in future I can feel a little better as everyone on here
Hi, Initially I received 2 at short intervals, then every 3 months, then after review every 4 weeks self injected into outer thigh muscle for the last 20+ years. PA is hereditary in our family. Ask fora second opinio, if that fails change your GP doctor.
Well firstly I agree with other comments here that a letter to your gp practice would be advisable. Possibly ask what more testing you might need to confirm PA, and why your results were changed? I must say I thought IFAB was the nearest you'd get to a definite result Have you had a parietal cell antibody test?
Re injections, I had loading doses of 2 a week for 3 weeks, then saw Dr Klein privately who kept me self injecting at that frequency. After 2 courses of antibiotics last summer I increased to every other day and am still doing that.
Good luck, seems like self injection will be the way to go, and you will feel better for it.
I'm not a doctor however, I would do an injection each day at least for a week or until I started feeling better and then maybe look at trying to figure out how to maintain something maybe every other day after that or once a week
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