I'm in my early sixties. Generally very good health. On no medication.
About twenty five years ago my then brilliant GP did a blood test for B12. A few days later rang me to come to the surgery immediately where he injected B12 himself. Apparently I had dangerously low levels of B12 that indicated I was unable to metabolise it. He told me I was in danger of pernicious anaemia, that I would have to take quarterly injections of B12 for the rest of my life. After a few shots my mystery symptoms (mouth ulcers, constant sinusitis, sight problems, pains in my legs, mood swings) had all cleared up. I took B12 injections every three months for almost quarter of a century. Then came covid. I missed about a year of shots because I was shielding a vulnerable family member. The symptoms came back. My current GP she said she needed to test my blood again, telling me it was unsafe to give me any B12 in case I needed more than they had been giving me. I smelt a rat and argued that I should not be tested again after a diagnosis. She woudl not budge. I had no choice. Sure enough she said my levels were fine and I would no longer get B12 on the NHS. This also meant that I didn't have a current B12 diagnosis to go elsewhere.
After another year my symptoms of 25 years ago were back with a vengeance. I contacted another doctor at the surgery and appealed the decision. He did two blood tests three months apart and saw that my B12 was falling on a straight downward trend. Unfortunately, I was still between 200 and 300. He would not agree to injections but gave me a huge daily dose of B12 by tablet. After taking them for 3 months my B12 was at 600 - this surprised me as I thought I couldn't metabolise it. But I was happy as he said he would give it to me as I needed it. 6 months later and I am experiencing symptoms but a blood test shows a level of 300, so no more B12 for me according to the GP. I suppose this means that until it falls under 300, or worse, 200, I am on my own.
I do not want to continue with this "wait until the symptoms are really bothering me" or until I develop pernicious anaemia. It seems that B12 is harmless at worst, but doctors seem dead set on getting people off it. I heard from a health worker that the surgery had taken everyone in the region off B12 using COVID as an excuse.
The doctor who originally put me on B12 and warned me about PA was a very experienced family doctor whose warnings ring in my ears. Unfortunately he has passed away.
Although my B12 levels do not look alarming, they fall steadily between blood tests and right now I am experiencing sight problems that the optician says are neurological in nature. It may not be connected to the B12 but I would like to err on the side of caution since B12 is a no-risk treatment, while I await to see a neurologist - this is proving difficult under the NHS and could take up to two years to get an initial consultation.
Is anyone else seeing this drive to get people off B12 or is this a local phenomenon?
Any advice on dealing with the surgery when my B12 is not dangerously low but is heading downwards and producing symptoms?
Any advice on sourcing B12 myself, and the advisability of this, if I can't convince my GP – although I continue to try. He’s a nice man but I fear he himself is being put under pressure.
Sorry for the long post – but I found this group and thought that the posts looked very helpful indicating a good group of people familiar with PA and B12 issues.
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You don't get PA if you stop B12 .You either have it or you don't. If your diet includes alot of b12 and you are not a vegan you definitely have an absorbtion problem..
This really annoys me that poultry regime of 3 monthly has kept you well as caught early by a good G.p.and treated immediately wouid be stopped .....Why oh why when keeping you well. ????
G.P not trained in this and relying gon blood tests only and nog clinical history or symptoms.
Infact the blood tests have proved you dont retain enough B12.
And that is ignored. ??
I wouid consider self injection until sorted.
Write s short letter to gp practice asking for b12 injections to be reinstated .
It will be scanned on your notes .
I had to see 6 gps until my b12 prescription was 'safe '
PAS has information for professionals offer this in your letter.
Thanks for your reply. Some very helpful observations and advice. Of course you are right about the PA being a binary state. I really wish they had left me alone with my B12. I know how much better I felt when they were giving it to me. Hard to get B12 over the counter without GP note. However I'm going to France next month and I will see if I can get some. Will also keep at GP - writing a letter is a good way to get it on record.
No worries about the typing. I just assumed you had some issue like that. I recognised the patterns because I have sight issues too. My eye problems soud a lot like yours. I noticed pixilated areas to the right of my centre of vision that can disappear completely (as with you text to the right just disappears). I was afraid it might have been macular edema but test last week showed eyes to be perfect. Optician had a really good look and said there is nothing physically wrong with my eyes but field of vision test showed issue with area of cenral vision missing on both eyes. Optician said it screamed neurological casuse to her. I find there is a correlation to this issue and the cessation of B12 injections. May be cooincidence, but I believe it may be linked.
I believe you can get B12 injections from pharmacies in France, although it's cyanocobalamine rather than the hydroxocobalamine we are given in the UK. Apparently it doesn't stay in your system quite as long. Not sure whether you can buy actual ampoules over the counter there but worth popping in. At worst you might need to see a doctor privately (for €26!) It's just unbelievable that this generation of gps cannot understand the damage they do when they mess about with previously stable B12 regimes. Being forewarned of this, when I started loading doses I saw the private consultant in Cambridge that many on this site have visited, to get a hopefully iron clad diagnosis and prescription for B12 every 3 days, plus co-factors. It's now on my medical records and so far has been the best £250 I have spent, as my gp was persuaded to prescribe ampoules for self injection on the NHS! It's partly the cost of nurses' time that is under such pressure. Self injection is very manageable after a couple of practices and will give you such peace of mind. Good luck in your quest, and don't be fobbed off and gaslighted when your good health is at stake.
More great acvice. Thanks. I am going to have another tilt at the GP next week, I really do like the idea of self injection - makes one more independent. Luckily not squeamih about needles at all. Just need to make sure I learn how to do it right. I'm sure some lovely health professional wll have tutorials online somewhere showing how do inject safely.
Would it ber possible for you to give me the name of the organisation or practice in Cambridge? £250 to get an ironclad diagnosis and prescription very much on the right side of cost/benefit for me,
I’m sending you information on how to obtain B12 hydroxocobalamin ampoules from German online pharmacies. That’s where we all get our B12 ampoules from when we cannot get the B12 injections we need to keep well
Hi I would be really interested in that link to German pharmacies if you would share. I have been looking to get injectable B12 as the three monthly schedule does not seem enough for me. I can see its available on etsy and many other sites as methyl cobalamine. However, I'm a little worried many of these products may be fake or poor quality as its comiming via an unregulated seller.
You can rest assured if you obtain your B12( Hydroxocobalamin ) ampoules from German online Pharmacies .
How to obtain B12 ampoules ( for U.K. patients)
As B12 ampoules for injection are strictly prescription items in U.K., we are forced to obtain them from reliable German online pharmacies. These pharmacies are strictly controlled by the German health authorities . In Germany , the ampoules are an over the counter item , requiring no prescription.
These are the different makes of B12 depot ( Hydroxocobalamin) ampoules that are obtainable
————————————————————————
PANPHARMA ( formerly Rotexmedica) , 1mg x 1ml ampoules
Reference no. 16199653 , in packets of 10 . These are the most popular ampoules.
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HEVERT 1mg x 2ml B12 depot ampoules
Packets of 10 ref no. 06078368
HEVERT 1mg x 2ml B12 depot ampoules
10x10packets( 100 ampoules) ref no. 06078380
————————————————————————
PASCOE. 1.5 mg x 1ml B12 depot ampoules packet of 10 ref no 07568672
It is advantageous to order 10 packs of Pascoe (100 ampoules ) as this means that the cost of 1 packet is halved . But bear in mind that the “ use by” date will be about 2 years . …….. ————————————————————————
These companies also make B12 Cynocobalamin ampoules. ( they are called just B12) If you want Hydroxocobalamin you need B12 DEPOT .
The following pharmacy sites are in German so you may need to use Google Chrome for translation .
versandapo.de sell all 3 brands , but of late keep running out of Panpharma . When out of stock ,there is an opportunity to leave your email address , and they will let you know when they are back in stock . Then you need to order quickly .
Best to register , then you can take advantage of their points system.
Using Google Chrome will translate for you .
It is easiest to use the reference numbers to order .But always check that you are ordering exactly what you want , as the pharmacies cannot take back any items because they don’t know how they have been handled (eg been in great heat , frozen etc ) they
When filling in your address you MUST FIRST OF ALL, ENTER YOUR COUNTRY ( on the drop down list ) UNITED KINGDOM OR VEREINIGTES KÖNIGREICH ./ GROSS BRITTANIEN . This is important with all the German online pharmacies , otherwise your postal code and the rest of your address cannot be recognised , and you will not be able to proceed . …….
Payment by card , PayPal or Bank Transfer .
Also the following
apohealth.de Obtainable in English - Click on Union Jack for English .
apominga.de click Union Jack bottom right on my device for English.
amazon.de sell Pascoe and Hevert . BUT NOT PANPHARMA . You can only use the brand names to search NOT the reference numbers when ordering from amazon.de .
amazon.de is available in English . Various different online pharmacies sell through amazon.de You will only be able buy from pharmacies which deliver to U.K.
Remember Hydroxocobalamin is called B12 DEPOT . Cynocobalamin is called B12
Sometimes I feel the name Permicious Anaemia does the condition (and us) a disservice. Because doctors seem to think that as long as you fix blood levels and there’s no active anaemia, the patient is fine.
I hope you can get your injections reinstated. My eyes were affected by the B12 deficiency and have corrected themselves with frequent injections
I consider myself quite lucky to be in Australia where I can buy over the counter. I hope this doesn’t change!
Your old, trusted GP was confused. Got it part right, part wrong. There was no risk of PA with a low B12, but there would have been a risk of Megalobastic Anaemia, which would be the result of a low serum B12. [Or a low serum folate could cause it too.] It's a great pity that you didn't get a vitamin B12 absorption test at the time [the Schilling Tests] as that should have given you the definitive answer, but it's no longer available. Sorry.
If you need B12 injections, and your GP won't provide them, well, there's plenty of advice on here on what to do next!
Thanks. I really appreciate that people have taken the time to give so much great advice to a newbie. I've felt alone for so long in this struggle with GPs that I am quite overcome with gratitude.
Most people on this forum self inject, I myself, purchase from perniciousanemia.org, I buy my SC fine needles and alcohol wipes from pharmacy and watched a video on YouTube to do on my abdomen, only scary the first few times and the rest is history. I have not regretted this decision in fact, it has saved my life.🙏🩷
He is, or was being put under pressure. This whole negativity for GP's about B12D treatment is driven by the austerity adopted in 2010 - not by the facts.
You said it! I'm controlling my anger over it all by reminding myself that GP stuck his neck out to help at all with attitude at surgery being what it is.
I won't repeat what everyone has said, just dIY!!I saw a Neurologist last Wed 2.5 yr wait. about leg probs. B12 came up , he actually knew all about it👍. He worked in America awhile
If you are anywhere near to Chichester Hosp. he is the best consultant I have ever had.He listened properly 😃.
Thanks - legs were first to alert me things were going south. Chichester a bit of a long haul for me but depending on how I get on I will keep it in mind.
My GP surgery wanted to stop my injections when 'covid' struck, saying they needed to do blood tests! The GP said it was a nurse decision looked nurse a GP decision! Either way, I didn't agree to a further blood test and they refused my B12 injection! My symptoms got worse, I called up the surgery (before booking online was compulsory), I asked for GP to call me back about my B12 due to the severe symptoms I was getting (tinnitus, insomnia, etc). They called back, they reiterated I had to have s blood test, I said don't bother I'll just commit suicide as I don’t want these symptoms anymore and promptly put the phone down! By the way I don't believe in suicide!! Then 10 minutes later gp called me back, saying they had looked at my file and my B12 was reinstated, and would I like my B12 at 8 weeks, which I should have taken but said no I'll have at 10 week, which was better than 12 weeks!! I still get questions everytime I book my injections not just by the nurse but thd admin staff why I'm having my injections every 10 when the normal is 12 and I say to them, I think you need to check the guidelines which are 8-12 weeks and the GP has agreed mine at 10!! However, I agree that today's GP'S rely in the Internet and blood results and not their gut instincts like GP'S of the past did!! My old gp retired, I'm at a different surgery and my gp record is a mess - they have me as fractured my wrist, when it was my elbow, they say I had a c-section on 24th when it was the 25th, I have pointed this out and they still have not changed it!! I just hope I don't have an accident abroad and actually break my wrist!! I hope you get your B12 injections back via the GP, if not do thd SI and let the GP know that they are leaving you an option regarding your symptoms and for your own health, that you are going down that route - put it in writing as this will go on your record!! Good luck
Bravo to you! I feel like I am among friends here. So many like minded people facing similar issues. I can't believe how people are listing out my symptoms. I may not be mad after all
You are not mad, just the GP surgery penny pinching on those of us who need or B12 injections, they wouldn't take away a diabetics insulin to once a week, when they need it daily!! I hope you get your GP on board asap, so no more symptoms!
Your introduced B12 by quarterly injection kept you symptom-free for an entire 25 years, and you considered yourself to be in very good health.
A year without them and your symptoms were back - but because your levels were not considered below normal range, your treatment, successful in symptom management for 25 years, was not reinstated.
What do the numbers matter, if the patient's symptoms have returned ?
Three months of high-dose oral B12 brought your level from between 200 -300 up to 600. But did anyone ask you how you felt ? Or what you would prefer ? Or what your symptoms were now doing ?
Your level then dropped back down to 300 - and your symptoms returned.
To my way of thinking, this might show that tablets are not the answer for you, or that 300 is low for you, low enough to make you symptomatic. I'm no doctor, have no medical training at all, but why would someone who is and has want to observe further deterioration ? Or be happy with a treatment that continually rises and falls to a level that causes cyclical return of previously-controlled symptoms ? That can't be the best they can do, can it ?
You could ask for an IFab (intrinsic factor antibody) test, but this returns a positive result in only about 40-60% of those who have PA (pernicious anaemia), and the Schilling test is long gone. You may need several IFab tests for the antibodies to be picked up. This would give you a confirmed PA diagnosis. 95% is good enough to be indisputable, even in another 25 years. Keep a copy. Frame it.
Of course, this may not be PA. But your first GP, all those years ago, did a test that showed "dangerously low levels" of B12, indicating a severe problem. If this was not dietary (if you ate meat, fish, dairy), then what was the cause ? Is the blood test result still on record ? Ask for that. Keep a copy. Frame it.
Of course, if this is not PA and not dietary, there are still other considerations and tests that can be requested. What is your MMA (methylmalonic acid) doing ? If it is not linking up with your B12 in your bloodstream, then your tissues and cells cannot access the much-needed B12, and you will still experience B12 deficiency symptoms. This is functional B12 deficiency - a flaw in the link at this point would show as increased MMA in the bloodstream and can show as increased B12 here, too, since the link has not been performed to allow satisfactory transportation.
Maybe the GP should be looking for a reason for your initial deficiency, rather than keep waiting for you to reach that dangerously low level again. If your symptoms return, then there is still a problem to either cure/manage.
If the entire problem here is a financial one, then at least an acknowledgement on record, a regular monitoring of folate, ferritin, vitamin D and thyroid - and a one-to-one session with a nurse to enable you to self inject without feeling anxious/criminal ! The cost incurred must be that of the nurses' time not the ampoules or sharps - which are still quite cheap. Although the nurses only take about 3 minutes, four times a year.
Besides, this whole thing is relative, surely. Deterioration comes at a cost. Financial, certainly, but let's focus on the patient here: sub-acute combined degeneration of the spinal cord cannot be put right with tablets, and at worst is irreversible. This is surely widely-recognised by now, because of the young people who abused nitrous oxide use ending up wheelchair-bound.
Along came Covid :
There was a study on the best way to keep elderly people who were hospitalised through contracting Covid from getting to the critical stage where they needed respirators. DMB was researched with favourable results: vitamin D, magnesium and .... B12.
Using Covid as an excuse to stop B12 injections permanently across the board sounds like a recipe for disaster to me. Saving injections only for those with recorded PA confirmed by Schilling test or positive IFabs sounds more like self-protection. Since the PAS survey showed that 14% of the almost 900 respondents had to wait over ten years for an accurate diagnosis of PA, musical chairs springs to mind.
Thank you for this comprehensive reply. I think I have to print it out and study it. You pretty much nailed my situation and my own feelings about it. I am not willing to do this dance where they won't give me B12 until it has fallen below a magic number regardless of my symptoms. It is nuts! I also agree that the tablets are not a solution and that they should be lookng at the cause not wasting time fobbing me off.
Unfortunately the original diagnosis got lost in a house move, and when I contacted the surgery their records did not go back that far. I wish I had the original letter because he had given me the reading and his diagnosis in writing.
There is a lot of advice on this forum on how to get B12 for self-injections. Maybe start with every other day until you are back to normal. Then try increasing the intervals until you find your maintenance dose. I get symptoms back after 3 weeks so I get injections once per week to keep the symptoms at bay. Very best wishes for a full recovery!
Thank. you for both of your very useful replies. I have written to my doctor using some of the suggested wording. I have been unable to get an appointment.
The NHS review was very interesting - the version I got suggested they should have discussed it with me. Three was no discussion just a note through the receptionist after the blood test shoed 330. I had symptoms they should have taken into account. There was no follow up as NHS suggested. There was no advice on what symptoms to watch out for as also suggested by NHS review.
I suspect it is ignorance and misreading of the advice rather than maliciousness.
I have acquired B12 and I intend to self inject with or without help from my GP. I am doing some research on this amazing forum today about whether to do IM in my leg or SQ in my stomach. I did not know what needles to buy so I am buying a range I'm still floundering about guage and how far in to push the thing
All the advice is that once you do it a few times it gets easier.
4) relevant personal/family history eg blood relatives with PA diagnosis/B12 deficiency
5) extracts from UK B12 documents and your ICB/Health Board B12 deficiency guidelines.
Keep letter short and consider including a request to file letter in your medical records. They should be filed with records any way. Always keep copies of letters, could be useful if you have to make a formal complaint.
Can be worth asking in letter for GP surgery to confirm in writing that they have received it. Proof a letter was received could be useful if there is a need for a formal complaint.
Have you found your ICB's (England) or Health Board's (Wales/Scotland) B12 deficiency guidelines yet?
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them. Try to get exact title of document.
Update and thanks to all those who gave advice and opinion.
I took the plunge. I injected myself for the first time on Friday, and again today. I feel much improved but eyes symptms persist for now. Friends and family have commented on my alertness and changes to my appearance already.
My GP surgery has replied to my letter offering me a telephone appointment in two weeks.
I feel very much like painting my face blue and pulling up in their car park to shout from their grassy knoll:
"THEY MAY TAKE AWAY OUR B12 PRESCRIPTION, BUT THEY'LL NEVER TAKE OUR FREEDOM (...TO INJECT OUR OWN)!"
In actual fact, I feel quite idiotic that I did not take this self injection route years ago to avoid the damage to my eyes etc. In my defence I have to say that without this forum I would not have been aware how easy it is to go about it.
I sourced B12 from Germany and I sourced 8mm insulin syringes from Amazon.
I'm glad you've found a way to get treatment but it seems such a shame that you and so many here can't get enough from NHS doctors.
Some forum members are wary about mentioning they SI to GP. Some NHS GPs respond with shock/displeasure and some have had their NHS jabs stopped when GP found out they SI.
If you tell them you SI you could always point out politely in your appt or in a letter that you were left without treatment and had no alternative.
If you search for "survey SI B12 injections uk" you'll find a research survey of people who SI B12 in UK. I found the patients' reasons for doing so interesting......
I think you have a good case to get your NHS B12 injections reinstated.
Might be worth asking if you can record the appointment...personally I would prefer to have a face to face appt as you can look at facial expressions/body language as well as listening.
If you want to record appt then probably best to ask in writing before appt and list reasons why it's necessary eg memory problems, concentration problems, fatigue issues etc.
Search for "recording GP appointments uk" to find relevant articles.
If you decide not to record, might be worth having someone else who is supportive in the room with you. It's my feeling that GPs are kinder if a witness is present although it might irritate some GPs.
If you're unhappy with tel appt then maybe you could ask to see GP and/or practice manager face to face and you could always follow up the appointment with another letter.
Might be worth talking to PAS (Pernicious Anaemia Society) if you haven't already.
Sometimes when people want to update their threads it's worth starting a new thread as responses on older threads can get missed. They could include a link to the older thread in their post.
Hi I had this a year back.In the UK hospitals prescribed open B12 injections for fatigue. To cut costs practices are ending these open treatments. If your medical history is wrongly described as B12 deficiency rather than pernicious anemia they will stop treatment. If you complain they will retest you and after a month change your condition to the correct description. I wouldn't self medicate however tempting it may be.
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I feel like standing on the roof and making an "Independence Day" film type speech.
Doctor stopped my b12 injections 
Confused! Do i have a real b12 deficiancy?
My Doctor has stopped my b12 injection after 7 years!!
GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
GP surgery wanting to remove my B12 injections after 2-3 years ??
