I was diagnosed with pernicious anaemia in 2013 and was having B12 injections every month. A few years ago my GP surgery had a change in management and a new GP changed my injections to every 3 months.
Last year i was having bloods done (for a different reason) and was told that my B12 levels were dangerously high at 2000 ng/L and that they were going to stop my injections. I haven’t had a B12 shot since May 2021! Am I wrong in thinking they cannot stop your injections? Of course our B12 is always going to be high.
My latest B12 result came back as 435 along with serum folate being 3.2 which I think is deficient and ferritin at 44.6 The GP surgery has informed me that the doctor needs to speak to me regarding the results, I am still waiting for a call back 2 and a half weeks later.
I feel exhausted to the point I could cry and it effects my mood. Recently I have been feeling dizzy, blurred vision/confusion and having heart palpitations.
I was under the impression that when diagnosed with pernicious anaemia the injections would never stop?
Written by
Amelia0710
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You are right ! You should be on B12 injections FOR LIFE . .It’s shocking what’s happening to P.A. patients now .. I see another gross myth in what your doctor has stated - B12 readings being dangerously high — UTTER RUBBISH AND IMPOSSIBLE . You cannot overdose on B12 . That is a proven fact You need to have your levels high " You need to have your B12 injections reinstated ASAP . You need your injections to be often enough to keep all symptoms at bay .. I need an injection every week . We are all different . This one size fits all is totally shocking ¿ If you cannot get your ignorant GP to reinstate your injections ,then I suggest that you do what we fellow sufferers of medical ignorance have to do . Namely , self -inject .It’s cheap and convenient — About £1.50 for everything for one injection . B12 ampoule , syringe, withdrawing needle , injection needle , swab .
Don’t hesitate . Lengthy deficiency of B12 can be irreversibly damaging .
HELP FOR PERNICIOUS ANAEMIA/B12 DEFICIENT PATIENTS AND OTHERS WISHING TO SELF-INJECT B12
ALWAYS MAINTAIN STRICT HYGIENE WHEN SELF-INJECTING .
WHERE TO OBTAIN SINGLE-USE B12 DEPOT ( Hydroxocobalamin) AMPOULES
As B12 ampoules are strictly prescription only items in the U.K. we have to obtain our ampoules from reliable German online pharmacies, which are strictly controlled by the German Health authorities . These ampoules are an over-the-counter ( OTC) item in Germany ( thank goodness for their wisdom!) But only obtainable from pharmacies .
Every pharmaceutical item has its own reference number on the pharmacy site , so it’s easy to use those numbers to get straight to the item you need ,without searching .
Depending on what you want to order, here are the reference numbers to use in your search .
PANPHARMA ( previously known as Rotexmedica )
A packet of 10 ampoules of B12 Depot ( Hydroxocobalamin)
1mg x 1ml Ref no. 16199653.
Panpharma do not sell the 100 ampoule packs any longer.
The Panpharma are the most popular ampoules .
HEVERT -Packet of 10 ampoules 1mg x 2ml ref no 06078368
HEVERT Packet of 100 single-use ampoules 10 x 10 packets ref no. 06078380
PASCOE -Pack of 10 ampoules 1.5 mg x 1ml ref no 07568672
PASCOE Pack of 100 ampoules ((10 x 10 packs) Ref no 07568695
Here are German online pharmacies that will ship to the U.K. by courier usually DHL FOR €9.89 no matter how many you buy .
versandapo.de ( it is in German , so you might need Google Chrome or a translation app)
It’s really best to register . You will save time with subsequent ordering ,and they have a points system if you register . 200 points when you first order , and one point for every Euro that you spend . When you have 250 points , that represents €2.50 which you can use against your next purchase .
You register and subsequently sign in by clicking on the head and shoulders silhouette ( top right on my iPad)
When filling out the address form , it is important to FIRST OF ALL SELECT YOUR COUNTRY FROM THE DROP-DOWN LIST. The U.K. is shown in German as VEREINIGTES KÖNIGREICH . (United Kingdom) So click on that and then the computer will accept your postal code and the rest of your address . If you don’t do this , your address will not be accepted .
You need to pay with PayPal ( easily obtained online ) or bank transfer. Free of charge with online banking . £25.00 at your bank !Versandapo.de does not accept card payments from U.K.
juvalis.de is another German online pharmacy that will ship to U.K.
These sites are in German so you might need Google Chrome or a translation app.
amazon.de ( German Amazon) is available in English ( click on the globe to change language) On my iPad it is at the bottom of the page.
You cannot use the Pharmaceutical reference numbers when ordering from amazon.de
amazon.de does not supply Panpharma ampoules.
They do supply HEVERT and PASCOE .
When you get the ampoules, they need to be kept dark and under 25 Celsius .I keep mine in the top shelf in the door of my fridge . It’s the warmest spot . On no account should the ampoules be frozen .
NEEDLES, SYRINGES , SWABS AND YELLOW SHARPS DISPOSAL BINS .Obtainable from ———————-
For I.M. injections. ( Intra Muscular ) I use a long coarse needle to withdraw the B12 from the ampoule into the syringe . I use 21G x 1 1/2 inches.
Use a 25G x 1inch needle for the actual injection .
A 2ml syringe is needed to get every last drop of precious B12 out of a 1ml ampoule .
For a subcutaneous injection ( sub-cut) use a fine short needle - 30G x 1/2 inch . I have not used this method , so look up instructions on the internet.
If you look at the packaging , you will see that sub-cut is a recommended method of injecting B12 .
SO FIRST WASH YOUR HANDS, AND PLACE YOUR INJECTION ITEMS ON A FRESH PIECE OF KITCHEN TOWEL
Open the ampoule at its weakest point shown as a spot on the neck . Wrap a swab round the ampoule to avoid nasty cuts
Failing that buy an ampoule opener (Amazon smile and choose Pernicious Society as your charity ) There are plastic ones and sturdy metal ones .
If you are Needle -phobic , there is help in the shape of a device known as an “Auto-Injector “ available from a Danish Company
I don’t use one , but you could enquire about it from members . I know that some do use this device .
There are others , but I don’t have any information. But don’t buy needles or syringes if you are thinking about it .The device takes specific sizes for different sizes
If you are sensitive , a numbing cream is obtainable from Amazon .
I use I.M.method for injecting. I use my thighs ( the outer middle third ) That muscle is called the VASTUS LATERALIS . I swap thighs each time I inject.
If you wish to inject sub-cut , please look it up on the Internet ( I believe it’s the tummy fat and the whole front of the thigh)
If you are injecting with B12 for the first time , please have someone with you, in case of anaphylactic shock ( like some people have after a bee-sting ) It is really very rare , but I feel obliged to tell you .
Do not worry about overdosing on B12 . You cannot . It’s a proven fact .
I’ve been self-injecting for 8 years , but I still remember shaking like a leaf 🍃when I injected for the first time ! Now it’s just routine.
Remember to include a good quantity of Vitamin B9 in your diet ( green leafy veg) It works together with B12 . It’s called folate in food and folic acid in a tablet. You could take a modest 400 mcg tablet daily. ( these are recommended in pregnancy . ) You cannot overdose on folate in food , but you can overdose on folic acid in tablets .
TO INJECT INTRAMUSCULARLY
Flick the ampoule to get all the B12 into the bottom .Open it by either wrapping a swab around it to avoid cutting yourself , or use an ampoule opener . Break it at the weakest point , which is marked with a spot on the neck of the ampoule
Use a 2ml syringe .(with a 1ml syringe ,it’s impossible to get every last drop of precious B12 out of the ampoule!) Fix the withdrawing needle on the end of the syringe . Pull out the plunger on the syringe and SLOWLY inject air into the ampoule . Now pull out the plunger and all the precious B12 will be sucked up into the syringe . Now take off the withdrawing needle and replace it with the injection needle .. Now gently press out the air in the syringe , until a tiny bead of red B12 appears on the needle tip. 💉
YOU ARE NOW READY TO INJECT INTO THE VASTUS LATERALIS MUSCLE. ( it’s nearest the surface of your thigh in the middle outside third of your thigh - look up info online .There are also diagrams of the thigh and the muscle ) Inject at 90 degrees .
For sub cut please refer to internet , as I’ve not used this method , or ask members on the forum .
After injecting please dispose of needles into a yellow sharps bin . When full, ask your local council how you can dispose of the full bin . Disposal varies in different areas . I can take mine to a local chemist .
Sometimes Pernicious Anaemia Patients suffer with “gut” problems , tummy pain and bloating etc . This happens because P.A. patients have low or no stomach acid . Hypochlorhydria/ Achlorhydria. ( due to the destruction of their parietal cells by the Intrinsic Factor antibodies ) The intrinsic factor is also destroyed . This low acid environment allows bad bacteria to flourish, which upsets the flora ( good bacteria ) in the stomach . Some P,A. patients find that taking an acidic drink like diluted organic cider -apple vinegar , lime / lemon juice with meals ,especially protein meals , really helps this .
The greatest help for my “gut” problems was a probiotic called Symprove , a water-based liquid . But there are probiotic capsules The probiotic encourages the growth of the good stomach flora . Also good to take after a course of anti-biotics , which destroy all bacteria good and bad .
Natural probiotics work well e.g. Organic sauerkraut , real yoghurt, kimchi and kefir .
Since getting the B12 treatment I need by getting adequate B12 injections, and the probiotic Symprove, the gut problems have disappeared . I no longer need Symprove ..
It is a good idea to eat smaller meals more often if one has low stomach acid ( as Pernicious Anaemia patients do ). Also chew food very thoroughly, giving the enzymes in saliva a good chance to start the breakdown of the food .
In severe cases of very low or no stomach acid ( Hypochlorhydria / Achlorhydria ) a capsule called Betaine Hydrochloric acid with pepsin will increase the acid in the stomach .( Amazon smile) Taken at mealtimes , can be used , but best to ask a nutritionist about dosage . It will vary according to how much stomach acid you have . There are instructions about dosage online .
A modest multi-vitamin and mineral tablet can also be helpful , as a low acid stomach is not good at breaking down our food to make minerals and vitamins available for absorption.
STOMACH ACID IS VERY IMPORTANT. WE NEED IT TO BREAK DOWN OUR FOOD , SO THAT WE CAN ABSORB ITS NUTRIENTS .
Thank you so much for replying and for all the information in your message!It was such a relief to hear that I am right and not going mad.
I told my GP last year if they’re stopping it because of funding I am more than happy to pay. I get pins and needles in my hands, arms and feet I am fearful this will just get worse.
I will put my foot down when they decide to finally call me, if not I will be joining you and ordering online.
It is upsetting to hear that you've been treated this way. It also makes me quite angry when medics are so ignorant, and that this ignorance is so widespread.
Did they give a reason why they were retested your B12 levels?
Doctors are very often worried about possible overdosing. And for good reason since they don't want to be sued. But there is no 'dangerously high' level. The only risk could be an impact on other nutrients or vitamins. But I assume that is not the point your doctor is making.
You could write a letter to the surgery to explain that you need injections for life. There is no risk of overdose and therefore no such thing as dangerously high levels: stichtingb12tekort.nl/engli...
People just don't know or understand enough about B12 in general. And of course, it is having a major impact on B12d sufferers.
Good luck and if all else fails consider self injection
Thanks so much for replying.I was under investigation at the hospital at the time (not related to B12) so not sure why they tested my levels but since then my GP has refused to inject me.
My latest blood test showed my levels for B12 at 435 which falls within the ‘normal range’ and therefore refuse to inject me until they drop again.
Im exhausted and frustrated no one seems to be listening to me and when the GP calls it’s honestly like speaking to a brick wall
Yes, so that's all well and good to say 'it's in the normal range' but the difference here is that you are not reporting B12 deficiency symptoms for the first time. You have a history and a diagnosis of PA. And this is a 'maintenance' dose, not a loading dose where assessing your levels in range would count. You need to have your regular dosage to maintain levels.
Do they expect you to go under range every time, before you get a jab?
Perhaps you are already aware but you can highlight to the GP that the ranges for deficiency are different in different regions of the UK. For example, I think in Cardiff you have to be as low as 120 to be 'deficient' but in North London you can be 190 and be classed as deficient.
So what is normal? There isn't a normal range. There's only your GP practices' normal range that some random person decided on. And that statement would only apply if you were first going to them to get tested, but you're not. You were tested almost 10 years ago and put on monthly injections since you cannot absorb B12 from tablets, supplements or food.
The GP's are basically applying their knowledge of other types of vitamin deficiencies and a rudimentary approach to science. To give my GP his due, he does admit that he doesn't know much about B12. So at least he's humble, modest and self aware.
But I soon realised that NO-ONE in the medical field knows much about B12. And so we must fight our corner as hard as we can.
Ask them if they've checked the Pernicious Anemia site. Or you can send them a copy of Dr Chandy's books 'Vitamin B12 in Clincial Practice'. It's a big old book but not expensive from Amazon. I have heard that it can work to get treatment reinstated for some people
I understand that the NICE guidance says GPs should not retest vit B12 levels once it is being supplemented, for just this reason. You could look that up
Above link has letter templates to cover a variety of situations linked to B12 deficiency.
Point 1 is about under treatment of B12 deficiency with neurological symptoms present.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
"I get pins and needles in my hands, arms and feet I am fearful this will just get worse"
You are right to be concerned.
Vital that b12 deficiency from any cause is adequately treated. Inadequate treatment increases the risk of permanent neurological damage including potential damage to spinal cord.
Has your GP got a list of all your neurological symptoms?
If they are reluctant to resume treatment, may be worth mentioning SACD in any letter to GP or consultation as this may make them sit up and take notice.
I am not saying you have SACD, I'm not medically trained.
I am saying that your GP should be aware that SACD is a potential consequence if treatment for B12 deficiency is denied, delayed or inadequate.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment ( over 40 pages)
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to to or a copy of local B12 deficiency guidelines.
If you want to know why I think it's so important to know what's in the local B12 deficiency guidelines for your area, read the blog post below .
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
This will sound harsh, put write to your practise manager and ask them to put into writing why you are being refused treatment as outlined by NICE and NHD for your condition even though you display symptoms.
I had the exact same issue as you. I eventually got the practice to update their policy fully in accordance with the nhs and nice guidelines, they conducted an internal review. I was offered two-monthly injections and treatment would be for life and not be based on bloods. It was helpful for me to mention the pernicious anemia society to back up my treatment expectations.
I did not involve my gp in this process, it was through the management. It was all polite and to the point.
Nevertheless, I soon bought my own ampoules and I self inject. I did every two days for six months or so and am now monthly although sometimes i think that needs a top up. This has worked really well for me - the pins and needles are a rarity now, instead of daily.
Thank you so much for replying. I should be getting a call from the doctor Tuesday (here’s to wishful thinking) and will hopefully be put back on the injections
After the call, might be worth putting any concerns into a letter to GP/practice manager.See letter writing link in my other reply.
Fingers crossed that they restart your injections.
"haven’t had a B12 shot since May 2021"
As you've been so long without injections and they have potentially put you at increased risk of neurological damage by leaving you without treatment, I think they should consider giving loading injections again.
You would need to be a PAS member to access this one.
You could also direct your GPs to the page for health professionals on PAS website.
I recommend that you get hold of the local B12 deficiency guidelines for your CCG or Health Board. It's possible that there is something in them that could explain why the GPs acted in the way they did.
It's also possible that the local guidelines on B12 deficiency state treatment for PA patients should be for life.
This flowchart below from BSH Cobalamin and Folate guidelines (published in 2014) clearly states that treatment is for life for PA patients.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
I think people should be careful about protecting their privacy as threads from HU can appear on other websites eg NHS websites. If you want to make sure that only people who visit this forum see your threads
1) Go to original post, click edit.
2) Scroll down post to "Who can see my post", click "Only community members" then "Post".
If you don't mind people knowing which is your CCG or Health Board you could mention it on this thread and someone might be able to help you find the local guidelines.
Sometimes GP practices or CCGs/Health Boards hold reviews of patients receiving B12 injections. I think this is often for financial reasons.
Do you have evidence of a confirmed PA diagnosis eg a positive test result for Intrinsic Factor Antibodies, letter from specialist confirming PA diagnosis etc.
I have come across stories where people with PA have had their injections stopped and when they protested, they were told that there was no diagnosis of PA in their records.
I suggest you have a few useful quotes to hand ( see NICE/BSH/ BNF links and local guidelines) just in case your GP says something unhelpful.
GP can find BNF hydroxocobalamin info online or in Chapter 9 Section 1.2 of their BNF book(they're likely to have a copy on their desk).
Hi. I was just about about to put literally everything that Wedgewood said below. A Doctor called me a few months ago to say the same thing …. that my B12 level of 2000 was way too high! I told her I inject every few days and she said it’s too much! You can’t OD on B12. Your body gets rid of what it doesn’t need naturally. As doctors, they SHOULD know this! They were giving me one every 3 months, but I managed to book extra ones, so I was getting one off them a month. I just SI now. Only been doing 1 a week as life is a bit chaotic. And yes, you should be on your B12 for life! You should definitely SI. It’s so much easier. You can do them when it suits you. Get your needles and syringes from Medisave and ampoules online from Germany as Wedgewood said. When I get time, I was going to do a short video of how I prep & do my B12’s because I’m seeing a lot of people on here seem nervous/unsure about doing it. It’s only how I do it though, everyone one is different. If it helps someone, it’s worth it. I really hope you get the B12s you need and start feeling better soon!
Thanks so much for coming back to me. Did they ever stop your injections? Ive not had one in a year now and feel on the verge of collapse most days! I think its lack of understanding from GPS, they actually offered me B12 tablets a few months ago lol. Ive never had to SI but definitely going to be looking into it this weekend. If you ever do get round to doing a video please do let me know, I think many people would benefit.
Hi Amelia. Tablets won’t help if you can’t absorb B12. I was told years ago when diagnosed with PA that no matter what I ate (spinich, etc) I couldn’t absorb b12 so I’d be on injections for life. When Covid hit, I couldn’t get to the surgery for shots so I ordered my own and have been SI ever since. I don’t know anyone on here (and they’re all pros at this) that get enough b12s from their gp! I will try and do the video tomorrow. Don’t feel bad for sorting your own shots out! We all do on here. You won’t get enough otherwise. Just ask us if you need help or have questions x
Hey, I was also told the same years ago that my body wouldn’t absorb b12 from food etc hence the injections. Like a lot of people have mentioned I think its a lack of understanding from gps. I only discovered this page a few days ago (completely random) and had no idea SI was even a thing. Thank you so much x
Hi Amelia. It happened to me and mine were stopped for six years. I felt so poorly I was on the verge of collapse. I have pernicious anaemia like most of us on this excellent forum but still have to fight for justice just to get from one day to the next.YOU MUST INSIST THEY REINSTATE YOUR B12 STRAIGHT AWAY OR LIKE ME CHANGE DOCTORS! Good luck for the future x
Thanks so much for coming back to me. Six years! It’s unbelievable I do feel it’s a lack of understanding/knowledge from the GPS, they have no idea how it makes us feel. Glad you got yours sorted and never stop fighting! x
I would strongly recommend that you follow up with your GP as soon as possible to discuss the recent changes in your B12 levels and to get an explanation for why your injections were stopped. It's also a good idea to bring copies of your recent blood test results with you to your appointment. Your GP may need to adjust your treatment plan to get your vitamin B12 vitamintree.ca/ levels back to a healthy range and manage any symptoms you are experiencing. In the meantime, it might be helpful to keep a symptom diary to help track any changes and discuss them with your GP when you have the opportunity to speak with them.
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