Do you find that three monthly prescribed injections of Vitamin B12 is enough? I begin to come down and experience symptoms again after only two months. Then I struggle to wait for my next injection.
Three monthly injections of Vitamin B... - Pernicious Anaemi...
Hi RachaelWright1997 The 3 monthly "one size fits all" ethos is slowly being broken down insomuch that the latest BNF guidelines now "allow" injections every 2 months for P.A. patients with neurological symptoms.
Read through the link below and see where you stand in requesting more frequent injections
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
I wish you well.
i found the same problem and as my doctor is an officious type - i now "quietly" self inject between doctor jabs - that way I stay in the "goody 2 shoes" crowd and get monitored as and when the nhs deems appropriate - when dealing with bureaucracy there is usually a way to get what you should have been given in the first place
I'm having the exact same issue. I'm going to try to push for more frequent injections but my GP is against the suggestion so far.
Self injecting between injections is something I'm seriously considering now. However, I have no idea where I'd get the injections from. Any advice?
Yes, I completely sympathise. I believe my doctor's surgery would be quite happy for me to show up every three months, go home and then be quiet in between.
I empathise with you Rachel
I was diagnosed with PA last year & given 1x 3 monthly injections but in last few months started to feel low with no energy after about 8 weeks.
I went back to my GP to request injections , she did thyroid tests & referred me to a haematologist . My appt was last week and he agreed Injections should be every 8 weeks, hallelujah !!!!
Go back to your GP and ask for what you need as you have neurological symptoms and the Nice guidelines state injections should be every 8 weeks,
All the best, I wish you well . X
It's really reassuring to hear that there are others who feel this way.
I'm glad that you've managed to score more frequent injections. I think at this stage I'm going to have to go back to my GP and fight for more frequent injections too.
Thankyou, for your advice. Yes, I will. It's just a shame that the control of my condition comes down to whether or not I fit in with the guidelines.
You too! X
I’m the same - as regular as clockwork, my symptoms recur between week 6 to 7 after my injection. I’ve asked for 8 week in jections twice but each time they test my b12 level and saybinhavecenough. When I tell them I have an absorption problem they just look blank. I use an aural spray but it doesn’t really help with symptoms.
My body crashes around about that same time as well. I've asked my GP for more frequent injections, however, they've declined my request because the tests come back that my levels are normal. I'm questioning an absorption problem now.
I don't think some GP's are very fluent in all the issues surrounding B12 deficiency.
I was thinking about taking supplements but I question if they would be enough between injections.
I think I'm going to request 8 weekly injections again on the basis that I'm suffering from neurological symptoms.
I sympathize with your struggle of getting your GP to listen. I'd advise hounding your GP until they listen or perhaps you could think about self injecting. I'm thinking about that option too.
I wish you luck!
I have had to self-inject for over 3 years .It is sometimes difficult to get hold of the B12 ampoules ,as the suppliers keep running out .( There is obviously a great demand for them . At the moment I get my b12 ampoules ( Hydroxocobalamin) from German online pharmacies . At the moment they are obtainable from -
In packs of 10. costing today €7.48 , plus €9.00 for courier delivery . The courier charge is the same no matter how many you purchase .
I always used to buy from versandapo.de , but they are always running outof them . They are out again today -I just looked.
You need to search for — Rotexmedica vitamin B12 Depot — . It is important to include “Depot “ in the description , as this denotes Hydroxocobalamin . If you don’t search for “depot” , you can end up with a different sort of B12 -namely Cynocobalamin , which is not in general use . The NHS prefers Hydroxocobalamin.
The above German online pharmacies are all in German , so if you don’t do German , you will need a translation app.
Amazon.de ( German Amazon ) Also supply B12 ampoules .and have a site in English. Several German online pharmacies supply Amazon .de with b12 ampoules . , but not all ship to outside Germany . You may need to trawl through a bit till you come across one that ships to U.K. .
Hope this is helpful . Make a note of the addresses , so you can refer to them if you ever need them. Best wishes.
Alfabeta my GP is exactly the same, does the tests and tells me my levels are too high. I keep saying but they are false readings and they look at me like "What the hell do you know - I am the doctor not you and you can't possibly know anything" and send me on my way again saying every 12 weeks is fine. I have had blood tests twice now because l have started to have pains in my upper arms and thighs and have said it is a little better after my injection but not for long. A few weeks ago l started to get problems with my left thumb it doesn't feel right - it tingles and feels numb and painful and again all she did was more blood tests and when they came back clear gave me some pills to help with the pain (not that they do anything because after a week l still have the same symptoms and don't feel any different). Sorry for the rant/long post but you are the only people who know what this feels like.
I told my doctor that a blood test was pointless because I self medicate with an oral spray - he said if there is sufficient b12 in your blood, you don’t need more! I think they are confusing b12 with medicine- if you take a medicine it is designed to remedy the symptoms but a vitamin needs to be absorbed to do the same job and, for many people b12 cannot be absorbed naturally. They should treat the symptoms!
Me too at around 8 weeks. After reading this I will be returning to the doctor and requesting 8 week injections rather than 12.
Diagnosed 4 years ago after nearly a year of blood tests for all sorts and years visiting the doctor trying to get through to them how unwell I felt. I definitely think I have neurological symptoms.
I'd definitely advise you to go back to your GP.
After all the comments I've received it's given me the confidence to go back to my GP. I'm going to request 8 weekly injections on the basis that I'm having neurological symptoms. For example, my balance really suffers with this condition and I get a tingling in my hands and feet.
Like me you should be entitled to that. Especially, if you have neurological symptoms.
Reading so many cases I've come to the knowledge that there is so much struggle around getting this condition diagnosed. Then it's more of a struggle to get the level of care that you need.
I wish you luck!
About 6/7 weeks for me too Rachael. My symptoms are neurological too so I will joining the self injecting brigade as soon as my next blood test is out of the way. It takes about a week for the jabs to kick in too, so I’m spending about half the time feeling rotten. I’ve chosen NOT to tell my doctor as he’s a complete ass. Won’t even consider the changed guidelines. Seems he’s the only doctor in the area who won’t.
Good luck with yours.
Exactly. I feel like a human rollercoaster. I'm high as a kite after my injection but then I come back down again too soon after.
I've had trouble with obstinate doctors too. It's awful that it's come to the point for you that you feel that you can't confide in your doctor. I hear you, it all comes down to the guidelines. Guidelines are written in black and white but people aren't.
I wish you luck with self injecting. I hope they work for you better than what you've been prescribed.
I am not medically trained.
UK recommended treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs followed by a jab every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better (could mean weeks or months of loading jabs) then a jab every 2 months.
Do you have any neuro symptoms eg tingling, pins and needles, numbness, tinnitus, memory problems, balance issues, word finding difficulties, tremors, restless legs etc?
If yes to neuro symptoms, my understanding is that you should be on second pattern of treatment.
How many loading doses did you have at start of treatment? Was it 6?
If yes to 6 loading injections with neuro symptoms present then GP was not following recommended treatment pattern which indicates every other day loading jabs until symptoms stop getting better.
You may be able to negotiate starting loading jabs again if GP has not followed recommended pattern.
I suggest reading all documents below.
UK B12 documents
BSH Cobalamin and Folate Guidelines
Flowchart from BSH Cobalamin and Folate Guidelines
BMJ B12 article
Your GP may not know that BNF B12 treatment guidance changed recently. See blog post below.
Symptoms of B12 Deficiency
Risk Factors for PA and B12 Deficiency
PA is an auto-immune disease. Having one auto-immune disease can increase chances of another one developing. Has GP excluded possibility of other conditions?
Have you ever been tested for Coeliac?
NICE guidelines Coeliac Disease (2015 version)
Coeliac Blood Tests
Any thyroid tests?
Many on this forum have both thyroid issues and B12 deficiency.
May be worth putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH which won't give a full picture of thyroid function.
Thyroid UK website
Have your vitamin D levels been checked?
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines but does not mention recent BNF change.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA.
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
There may be a local group close to you. Support groups can be a useful source of info about helpful GPs etc.
B12 Deficiency Info website
UK B12 Blogs
May be stories that are relevant to you on these blogs.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
The consequences of being untreated or under treated can be severe.
Neurological Consequences of B12 Deficiency
PAS news item
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
Some parts of UK are following local B12 deficiency guidelines that have not been updated recently. Might be worth tracking down a copy of local guidelines in your area and comparing them with national guidelines.
More b12 info in pinned posts on forum. I have written other more detailed replies; may be worth searching for them.
Thankyou so much for taking the time to send me the information and the links that you have provided. They look very informative, I will take the time to read through the material.
Yes, I do suffer from neurological symptoms. For example, lack of balance, tingling in my hands and feet, and I struggle to concentrate. I'm now aware that experiencing neurological symptoms entitles me to more frequent injections, I'm going to bring this up with my GP next week.
I have been Vitamin D deficient in the past but my levels were brought back up to normal through strong supplements.
Looking into the local guidelines is a good idea, they may give me a better idea of where I fit in and it'd help me to challenge my GP.
Thankyou, for your advice too.
i have most of the neuro symptoms but still my GP won't listen. I have tingling, pins and needles, numbness, tinnitus, memory problems, balance issues and word finding difficulties, About 3 years ago l had a lot of balance issues and this went on for almost a year and it got to the point where l could hardly walk in a straight line. The first time l went to the GP they said l had vertigo and gave me some tables which did nothing so they upped the dosage and it was ok for a few months but when it came back the second time it was worse and l had an MRI scan and saw a neurologist and they said it was a brain in balance and would get better on it's own and in some ways it has but l still have days when my head fells strange and my balance is off. But they never said it had anything to do with my PA but l now wonder if it was.
"where l could hardly walk in a straight line"
One neuro symptom associated with B12 deficiency is a problem with proprioception sense ( loss of awareness of body in space).
Were you given any neuro tests with your eyes closed? If no to tests with eyes closed it's possible that your proprioception sense was not fully tested by neurologist.
Two tests that check proprioception sense are
1) Romberg test
2) walking heel to toe with eyes closed
Videos of these and other proprioception tests on Youtube.
Vital that these neuro tests are carried out by doctor at medical premises as there is a risk of loss of balance.
Did you have a scan of your spine at any time? Severe B12 deficiency can lead to SACD, sub acute combined degeneration of the spinal cord?
I am not medically trained.
They did lots of blood tests to begin with and when they came back clear and l went back the second time they decided to send me for an emergency neuro appointment. The neurologist tested my reflexes and walking and also got me stand still and close my eyes at which point my balance was all over the place which was why they did the MRI to check my brain and spine. Thankfully they came back clear. She told me they were checking for MS, a mini stroke or a problem with my brain like a clot or something. At no point was PA mentioned and l was sent to a physiotherapist for about 5 sessions and then discharged so now l just get on with the dizzy spells and guess l just have to live with it.
"got me stand still and close my eyes at which point my balance was all over the place"
The test you describe sounds like Romberg test.
"Thankfully they came back clear"
Have you read the scan report? I'd want to know that they checked everything they said they did.
Proprioception is mentioned in this BMJ article about B12 deficiency.
I've only had two three months apart injections (after six loading injections) I'm still not feeling "the difference" my doctor said they can take a while to start being affective ,
I'm 67, one of the nurses who gave my loading injections said her daughter has B12 injections & was jumping! around with energy after just her loading injections she is a young student, so wondered if age can also be a factor.
Like yourself I haven't been treated for this condition for very long either, on some levels it's still so new to me.
I think it differs from person to person. Everyone's experience is different.
For me, personally, as soon as I have my injection I feel great and full of energy. I just struggle to wait between injections and I come down too quickly.
Age could be a contributing factor. I'm only 21.
I'm sorry to hear that the treatment you are receiving isn't as effective as you'd like. I'm no doctor but I'd think that you'd start to feel a difference by now. The initial injections are very powerful and then the dosage is reduced.
Perhaps, more frequent injections would be more beneficial to you and I know that some individuals decide to take their care into their own hands and self inject.
Perhaps, you could speak to your GP about these concerns surrounding your treatment.
Whatever you decide. I hope your condition gets better soon.
Similar issues at the start of my regular B12 injections.
The nurse initially indicated 12 weeks was the "official" period but have now managed to get this varied to 8 weeks - the NICE recommendation for neurological issues.
My "diagnosis" was given as Peripheral Neuropathy, which I understand to be more of a description of my symptoms, with no indication of cause or cure. No defined B12 deficiency, so the neurologist has prescribed injections to improve the muscular response. This on-going situation has now settled down and my mobility, pain and muscle weakness has now improved to an acceptable level.
So present the NICE guidelines on frequency to your GP and press for an 8 weekly schedule.
I'm awaiting an appointment with a physiotherapist, as I have muscle /aches / pains, this all started a short while before my PA was diagnosed, Im going to be receiving three monthly injections, having read your post I'm going to keep an even closer eye on my muscle/mobility problem, maybe I should receive eight weekly injections, something I will now as I said will keep in mind thank to your experience.
I hope your appointment goes well and helps to relieve some of the pain that you've been experiencing. I believe that muscle aches and pains are symptoms that stem from have Pernicious Anemia. I experience them sometimes too.
Please do! I know it's difficult but I think the key is to keep on top of the symptoms as much as possible. Self care, as well as prescribed medication, is important. I've found it's the little things that make me feel better. Like not pushing myself, taking a nap when I need to or having a warm bath.
I'd definitely push for eight weekly injections. Especially, if you're experiencing neurological symptoms. Other posts I've received have said that that fits into the guidelines.
From reading what others have said I'm going to push for more frequent injections. Like you, I think that would really help to stabilise my condition and the symptoms I am experiencing too often.
Good Luck! I hope all goes well for you.
Seems like we're in the same boat. Between injections I get so tired and down.
I've asked once for more injections but my GP turned me down because my levels were normal. I'm going to go back again and push for 8 weekly injections based on the fact that I'm experiencing neurological symptoms.
No, the supplements are so weak compared to the injections.
I know it's a pain but I'd push your GP again. I know it's deflating when your own doctor doesn't listen to you. I've read that a lot of people turn to self injecting because of this.
I've read that the Vitamin B12 drops are better than the supplements.
The injections are a lot more powerful than the supplements.
However, the supplements could help to tie you over before you're prescribed to have the injections.
I hope you don't have to wait too long. I felt a lot better once I had started to receive injections, you just need to make sure that you're having them frequently enough.
I've heard that Vitamin B12 liquid drops are good too but more pricey.
"I've asked once for more injections but my GP turned me down because my levels were normal. I'm going to go back again and push for 8 weekly injections based on the fact that I'm experiencing neurological symptoms. "
I think it may be worth joining and talking to PAS (Pernicious Anaemia Society) before your next appt. PAS should be able to point you to useful info. Basic membership costs about £20 for a year.
It may be more effective to put your concerns into a short and polite letter to GP.
My understanding is that in UK, letters to GP are supposed to be filed with patient's medical records and are therefore harder to ignore. I suspect info passed on verbally or on photocopies is sometimes ignored or filed in the bin. Letters could contain symptoms, test results, relevant medical/family history, extracts from UK B12 documents etc.
Link about writing letters to GP if under treated for B12 deficiency with neuro symptoms
If a letter goes to GP before next appointment it gives them time to do their own research.
Words of caution
Some GPs find it hard to deal with assertive patients so be prepared for GP/patient relationship deteriorating.
Do you have anyone supportive who can come with you to appointments?
Even better if they have read about B12. It's my impression that GPs are kinder if a witness is present and it's useful to have someone who'll speak up on behalf of patient and ask questions especially if patient is suffering brain fog.
Sadly ignorance about B12 deficiency can exist among some specialist doctors and GPs so be well prepared for any specialist appts.
With neuro symptoms, have you been referred to a neurologist? There are many causes of neuro symptoms. You may be lucky and find a neurologist who understands b12 deficiency and that PA with neuro symptoms requires jabs at least every 2 months. Neurologist may even suggest repeating loading doses.
2) Gastro enterologist
Do you have gut issues? Gastro specialist may spot signs of gut damage from PA, Coeliac, H pylori infection etc.
NICE CKS link in my first post indicates that GP should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Has your GP done this?
Help for GPs
1) PAS website has section for health professionals. They can join PAS for free.
2) I gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
3) PAS library section has useful leaflets/articles which some forum members have passed to GPs eg
"An Update for Medical Professionals: Diagnosis and Treatment"
pernicious-anaemia-society.... See Page 1 of articles.
Access to PAS members only.
PA is an auto immune disease. Having one may increase the possibility of developing another. Has GP excluded possibility of other conditions with overlapping symptoms eg Coeliac disease, Thyroid etc ? Many on this forum have thyroid problems.
"push for 8 weekly injections based on the fact that I'm experiencing neurological symptoms."
I hope you get the treatment you need.
Patients who are not receiving recommended level of B12 treatment may be at increased risk of developing spinal damage (SACD).
If you struggle to get correct level of treatment may be worth speaking to your MP.
See also "Unhappy with Treatment" links in my first post.
If all else fails, some on forum choose to self treat.
I have a couple of suggestions that might help you a little bit. I am also still on the path to getting properly sorted with treatment, via GP and my own clarity on what I will need to do for self-treatment as my own 'pattern' becomes more apparent.....
I would strongly suggest taking a few of things printed out to the GP appt with you. Then you have black & white to back up what you are saying, you can ask for them to go on file, you can ask your GP to take away and read (outside the 10 minutes!), and it helps you be 'on the front foot' as it were. I found it meant my GP, although looking horrified at first when i pulled out a wadge of paperwork, had to at least show willing with listening, and actually took a mountain home to read!:
- A collated list of ALL the symptoms you have had prior to having any B12 treatment; plus list of what improved once you had B12 injections; plus list of what comes back or worsens at some point after treatment/before next. (I highlighted "neurological" symptoms on my list to make it easy to point this out to GP as it was nearly 3 pages long!!)
- A printed list of all the 'known' symptoms' of B12 deficiency/PA, eg. from PAS/NHS/b12deficiency.info/b12d.org and/or other reliable sources, and again you could highlight on here the ones you have, and/or that are neuro. I found the downloadable 'checklist' page on b12d.org helpful for starting this, b12d.org/overview/symptoms
and the b12deficiency.info lists too b12deficiency.info/signs-an...
(In fact, when I looked up B12 deficiency symptoms, I found that my own list of personal symptoms pretty much doubled as there were so many things I just lived with or that were not things that really 'affected' me (eg. a rapid proliferation of grey hair!), or where I had lightbulb moments that shed light on why certain things were happening.)
- the NICE B12 deficiency/folate deficiency treatment guideline, highlight the part that applies to you (ie. if you have neuro symptoms), plus the bit on PAS website or NICE website that confirms the BNF update in Oct 2018 which allows 2-months to be the frequency.
- A list to remind GP of the causes/risk factors involved in the likelihood of PA/B12 def, again on the sites as above. For example, my GP said she wasn't aware of the nitrous oxide link to B12 def (I had it during labour 9.5 yrs ago). Not that they will necessarily dig deeper to find your personal underlying root cause, but again it maybe helps to remind them of the fact that it is a real illness with a range of causes!
After having 5 x loading doses in Sept, I felt gradually worse and worse again after about a month and then a rapid worsening from mid-Dec onwards, really debilitated and hardly functioning again in Jan & Feb (I am in Gloucestershire, where they don't even follow the "6 x loading then 3 months" basic guideline ).
In Feb, after a difficult GP appt - taking all the above info & more - my GP reluctantly agreed to 'try' 2-monthly injections, stressing it was to see if they helped the neuro symptoms esp the pins & needles in hands and legs, and they'd have to review it.
i hope I don't sound like I'm telling you to do what you have already done!?
No, not at all! Thankyou, so much for all of the information and advice you've sent me. I'll take the time to read through it thoroughly.
I especially appreciate the advice surrounding communicating with my GP. It's a different approach for me to take rather than just a one to one conversation. It's definitely a better may to make my GP take more notice.
I'm glad it worked out for you and that you're now on more frequent injections.
Sorry! Also just to say....
I have had 1 jab about 3.5 weeks ago, which of course did help. Initially for about 5 days or so, then I feel like I have hit a wall and crash again with fatigue, brain fog, bad headache, internal and muscular aches and pains, upset bowels and feeling low and despondent.
However, a few days before having that jab, I started taking sublingual methylcobalamin 5000mcg tablets (Solgar) as I had already bought them and I was in a right state. I could feel a slight positive effect within hours of the first one as some tight cramping in my leg and odd pains (akin to female heart attack-type pains) and heavy headache all eased a little. Took 1-2 a day for a few days, which got me through working 2 long busy days, just.
Stopped taking them on day of jab for a few days. C. 3 days after it, started taking x1 every other day for first week, then I upped it to 1 every day. I was still very up and down.
I am now having 2 a day, 1 with breakfast and 1 with supper.
Still a bit up and down, and nowhere near 100%, but generally on a slightly better level than I was before, not as variable, and dare I say it, seem to be helping keep many of the symptoms at bay - and even possibly improving..... feeling like I might be on an OK path til the next 8-week injection, fingers crossed.
These could certainly be worth trying out, I think they are helping me. There are so many things to gradually get in the right balance aren't there?!
I have also started using a Vit D oral spray daily after the jab. Plus started taking Vit C & Zinc, cod liver oil, and general Vit supplement (on the days I rememeber - still embedding the habits!) Some days I have Spatone for gentle iron supplement, and Metatone for a boost. This week now also taking magnesium tablets, and I think I might need a combined B vits supplement for B3 & B6 too. Trying to ensure eating potassium-rich and folate-rich things.
Fingers crossed, and best wishes to you!
I know how you feel. I was struggling for the last year with the 1 every 3 months.
my gp (as much as usually like her) wasn't interested in the fact that I wasn't coping. last month, 3 wks before my NHS injection I broke down a couple of times at work. for 3 wks I felt really awful.that's when I decided to start self injecting.
thanks to a few people on here who gave me great advice I ordered what I needed.
at the moment I self inject twice a wk as I have been feeling awful. but am.hoping to reduce soon.
but it feels so great to be able to get what you need when you need it.
hope your gp helps you. if not,may be look into self injecting.