I think this is probably a very common question but bear with me...
I was diagnosed with low b12 in 2016 (level was 151) after years of floating around the 200 mark and suffering extreme joint pain/ fatigue etc for as long as I could remember (was told it was growing pains, then chronic fatigue/fibromyalgia)
I had my loading doses, then went to 3 monthly and then 10 weekly injections. It's been life changing. I went from being in so much pain I could barely walk and sleeping 12hrs a day, to pretty much normality
Recently a clinical pharmacist reviewed my notes (unsure what initiated this) and decided I could go to tablets. I spoke to GP and said I wasnt happy with this as I'm not vegetarian and the injections are working well.
GP ordered intristic factor test as this wasnt done in 2016 - its come back negative with b12 above range so she believes there is nothing wrong with me
What complicates my case is that as a newborn I used to fit and was in the ICU for months - they eventually diagnosed this as a lack of b12. B12 injections as a baby stopped the fitting and they discharged me
So my question is...what can I possibly do next? I dont want to stop the injections and go back to being as poorly as I was just to prove a point. GP doesn't even want to prescribe the tablets now as b12 level was above range - any advice would be so welcome
Thanks x
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suggest you refer your GP to the BCSH (British Council for Standards in Haematology) guidelines on diagnosis and treatment of cobalamin and folate disorders which can be found hereonlinelibrary.wiley.com/doi...
The guidelines look in some detail at the various tests for B12 deficiency, including the IFAB test - which is not very sensitive. This means that a positive is good evidence for PA as the cause of a B12 deficiency but a negative is a long way from ruling out PA as the cause of a B12 deficiency. The standards even refer to IFAB-negative PA as a result of this. There are also diagrams on steps in reaching a diagnosis.
Both these guidelknes and the NICE guidelines do not recommend retesting of serum B12 after diagnosis unless there is reason to believe that the patient is not complying with the treatment regime. This reflects the problems with interpreting results after injections have started.
This article by a haematologist also covers the difficulties of evaluating B12 status from serum B12 levels after starting B12 injections
The early studies on how long B12 was retained in the blood after injections showed a huge range - with levels staying high for several years in some cases - though these studies don't actually indicate how the patients involved reported feeling - but it also underlines how difficult it is going to be to interpret serum B12 post injections.
You could also try pointing your GP at the area of the PAS website aimed at helping medical professionals to improve the diagnosis and treatment of PA
Please note that very high dose oral B12 can be an effective maintenance regime but should be started immediately after an injection and, as it doesn't work for everyone, patients are advised to return to injections if symptoms are returning - especially if neurological symptoms are returning.
There was a lot of confusion about treatment of B12 absorption problems when the COVID-19 pandemic kicked off last year and some rather confusing guidance around the use of high dose oral.
Thanks for coming back so quickly and with so much information Gambit62. I'll read through these and make sure I'm prepped before speaking to my GP again.
Interesting you mentioned folate as my levels frequently dip below range for that too.
It's reassuring to hear the tablets are working for many people as I was very wary of them
I don't think I could self inject but I know b12 injections are available elsewhere which I may look into.
Unfortunately I was told the injections would be withdrawn without the IFA test so had little choice but to go ahead and hope I'd get a positive.
Definitely have been life changing, previously they'd put me on gabapentin (quite a strong medication) to help with the joint pain and fatigue but it didn't have much of an effect. I'm sure the b12 is much cheaper so I'm a bit mystified why they're keen to withdraw it.
I think I'll go in armed with information and hope I can get a treatment plan agreed
Thanks again for your input and good luck with your ongoing treatment
I didnt think I'd be able to inject. I do subcutaneous on a prescription from Gp. Long story. My daughter had a misdiagnosis of fibromyalgia too.
She is on 10 weekly injections of b12.atvthe surgery. She had amitriptyline for joint pain fir a while. Her ferritin snd fokate was low.snd vit d also.
I had Gabapentin and amitriptyline as well and they were horrible for me. I also feel my diagnosis of Fibromyalgia 16 years ago may have been a misdiagnosis and should have been PA
I think you could probably self inject, especially if you don't want to go back to feeling so very unwell. I had to self inject during lockdown otherwise I would not have been able to get my B12 . Luckily my GP allowed this and provided everything. I felt like you but became a dab hand at it after 14 months!! I do wish you all the best and hope you can get everything sorted out. Maybe it would help if you could afford to see a haematologist privately and get a report for the GP. I don't understand why they are so reluctant to give the injections. Probably because they're not paid extra to give them, unlike a lot of other injections!
Hi, I started injecting myself during the pandemic and I was someone who couldn’t even look at a needle. I now inject b12 every 4 days or so (recommended by my functional doctor because of my condition) I also need to keep on top of methylfolate because of my MTHFR SNPs as these affect each other from what I understand. I get my b12 viles from Germany and syringes and needles off Ebay.
The GP was also under pressure to move me to every 3 months rather every 4 weeks as the guidelines changed. This made the decision to inject myself easier. I know straight away when I’m low.
Thanks Lauramichelle, really reassuring to know needle phobia can be overcome in the worst case scenario. Thanks also for sharing where you get your supplies, good to know I potentially have this as a back up. Sorry to hear they tried to push your injections back so much. Glad you can do it yourself now though
On Wednesday 7 Jul 2021, at 15:30, BBC Radio 4 broadcast an edition of Inside Health which had a segment specifically on overcoming needle phobia.
For this who can access it, primarily those in the UK, it might be worth a listen:
How to defeat needle phobia and football and lateral flow tests.
Inside Health
How needle-phobic under-30s can overcome their fear of having a Covid vaccine.
Laura talks us through her remarkable journey, from a fear of needles to having her Covid jab, and Oxford University’s Daniel Freeman has some tips for you too.
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
"Recently a clinical pharmacist reviewed my notes (unsure what initiated this) and decided I could go to tablets. I spoke to GP and said I wasnt happy with this as I'm not vegetarian and the injections are working well."
Perhaps you could ask a question about what initiated the treatment review in a letter to GP and possible also copied to practice manager.
Link above has letter templates that people can base their own letters to GP on.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Person who runs the B12 Deficiency Info website has helped some forum members.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
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 by practice may be important if there is a need for a formal complaint.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in the future.
May be worth discussing with your GP that under treated or under treated B12 deficiency can lead to permanent neuro damage including damage to spinal cord. This may help to concentrate their minds.
Eacg CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you get old of a copy of local guidelines for your CCG/Health Board and compare them with BNF, BSH and NICE CKS links.
Some of the local guidelines are unhelpful and vary from BNF, BSH, NICE CKS guidance.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for treatment of B12 deficiency.
Some UK local guidelines have been posted on this forum so try searching forum posts with term "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of local guidelines on treatment/diagnosis of b12 deficiency. It's also possible to submit a FOI request to your GP surgery although be prepared for this upsetting them.
Good to know what you are up against locally.
Oral treatment
There are moves across the country to put more people onto oral tablets... this is sometimes promoted as easier for patients. Personally I think it is a cost cutting exercise.
Out of fairness, I would add that some forum members manage on high strength oral B12 tablets. Personally I have not found these very effective.
The evidence that oral B12 is as effective as IM injections is of low quality. See links below for more info.
My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the change.
As I understand it (I'm not a scientist or medical professional)this means that the GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues and got your agreement, preferably in writing, before they changed your treatment.
I'm assuming you have not given informed consent to the change to oral treatment previously.
Of course the GP surgery may argue that changing from IM injections to oral tablets is not a major change in treatment.
My personal feeling is that it is a major change because the evidence that oral treatment is as effective as IM injections is of low quality.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment.
Keep copies of any letters in a safe place in case there is a need for formal complaint in future.
If the change to oral treatment is part of a study the GP surgery or CCG/Health Board for the area is taking part in, has this study got "ethical approval"?
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
Studies involving patients need ethical approval in most cases.
Links below are to threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Goodness Sleepybunny this is brilliant thank you! Your suggestion of a letter I think is a good one as the particular GP I've spoken to has been quite bullish (think old style matron) so I often feel like I can't say everything I'd like to (shes also cut me off mid sentence when describing the positive impact injections have had on my symptoms).
I've never been referred to a neurologist or haematologist which I've not particularly minded as I've been getting treatment that has been working
The link to the region you shared is 404ing however I can see in the URL it says Gloucestershire - which is where I am unfortunately.
You're right I've not consented to changing to oral supplements and I have in my notes my concerns on having them. You raise a good point around why my successful treatment is being changed without explanation. Lots to think on thanks very much x
That link worked, thank you - though makes for rather grim reading. Strange it's just one county that has decided to take this approach against NICE guidelines.
Thinking about it, the deficiency and loading injections as an adult were picked up and done by a different county. I should be grateful for that by the sounds of the article!
If your GP refuses to refer you perhaps you could ask them to write a letter to local haematologist and maybe one to a neurologist asking for advice on treatment.
Is there any possibility that you could see a neurologist privately although this is no guarantee of better care.
I would hope that if you see a specialist then they will write to GP suggesting strongly that your treatment is reinstated but be warned some specialists lack knowledge about B12 deficiency.
Might be worth mentioning in writing any concerns you have over the possibility of developing SACD, sub acute combined degeneration in future if your B12 deficiency remains untreated. If you haven't already, worth including a list of all your symptoms especially any neuro symptoms and definitely mention any affecting spinal area.
Collecting Evidence
1) I recommend you start keeping a symptoms diary that tracks changes in symptoms over time and if and when any treatment is received and a brief description of treatment. This could be useful evidence of any deterioration or improvement in symptoms to show GP or specialist. Might be useful if there is a need for a formal complaint.
2) If you notice a deterioration in symptoms/return of symptoms then might be worth keeping GPs updated about symptom changes in brief, polite letters especially if there is a deterioration in neuro symptoms/spinal symptoms. Writing letters may irritate some GPs but weigh up the risks of irritating them with potential consequences of a long period without treatment. Keep copies of any letters as they are proof an issue was raised.
GP/Patient relationship
Some GPs and specialists cannot cope with assertive patients. I suggest taking a supportive friend/family member with you to appointments if pandemic restrictions allow. Preferably someone who has read about B12 deficiency and is willing to speak up on your behalf.
May also be worth asking for permission to record appointments. GPs etc are likely to refuse but may be worth mentioning any problems with brainfog, memory issues, confusion as a reason for needing to record.
I did notice that PAS have a lealfet/article about juvenile PA and B12 deficiency in pregancy and newborns. See second page of leaflets.
"GP ordered intristic factor test as this wasnt done in 2016 - its come back negative with b12 above range so she believes there is nothing wrong with me"
I suggest that in any letter to GP you include brief info about Antibody Negative PA ( PA where IFAb (Intrinsic FactorAntibody test) result is negative)...perhaps the flowchart below.
You might also mention as briefly as possible about Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Maybe worth copying any letters to practice manager as well.
If you think this may end up with you making a formal complaint, I suggest you get hold of copies of and access to all your test results/medical records before starting any complaints process. As well as online records, may also be worth accessing paper records.
I am unsure why a clinical pharmacist is so concerned with what seems to have proven to be a successful treatment, within guidelines, for a return of a condition which was present at birth.What on earth can have prompted him/her into deciding to put you onto tablets ?
I was unaware that a pharmacist has the authority to even do this.
In any case, this has now led to the GP withdrawing any treatment for your condition. With no monitoring offered ?
Can your GP, in all honesty, pronounce you cured ? Not from a negative result from an intrinsic factor antibody test, they can't. Martyn Hooper (founder of the Pernicious Anaemia Society) had to have this test three times before getting a positive result.
But you did not go from fits at birth to B12 deficiency to growing pains to chronic fatigue to fibromyalgia to B12 deficiency to cured.
I would suggest that a lot more is going on here -and opportunities have been missed. If I was your GP, I would first have wanted to know why you were born with B12 deficiency: is there a hereditary reason ?
Your family may be able to help with this.
Do not deteriorate in order to prove your GP wrong. Put a case forward to have your previously successful treatment reinstated. Then change your GP.
Thanks Cherylclaire, that's a really valid point around being declared cured. I'm not sure how they can have reached that conclusion without any consultation
The b12 at birth is a complete mystery. Theres no family history of b12 problems and as a baby it took them months to work out that was the problem (I think its uncommon). I may be wrong but to me this makes me think I will always have an issue with my b12 and require supplementation
I had my DNA tested to find out why my MMA was raised, despite frequent B12 injections, for years after B12 deficiency found and loading dose started. Methylmalonic acid is supposed to go down to within normal range soon after injections start, certainly after loading dose completed. The sixth time it was tested, it had finally got down to normal, over three years after it was supposed to.
This test was taken by the consultants who were looking at my DNA. That was in June 2019. I'd been self injecting every other day since September 2017. So quite hard work to get back to "normal" .
They were Adult Inherited Metabolics Diseases consultants and were quite lovely: they apologised for having no answers for me after appointments spanning two years. I had come to the end of a long search without an answer, so quite disheartening. I still have frequent B12 injections to control symptoms. After my MMA dropped into range, my folate and ferritin also stabilised, my blood test results last year were the best I've had in six years, and I believe that I continue to make slow improvements. I have now stopped taking supplements (multivitamin and mineral tablet daily) to see if I can maintain a good balance with diet alone but believe now, like you, that I may always need B12 injections.
You might have better luck and it could be worth a referral. They were suggested to my GP by haematology consultants. I also believe that being born with B12 deficiency is (thankfully) rare. These are the people that would know for definite.
Gosh sounds like you've really been through it. I'm so pleased your levels are returning to some sort of normal even though you've not found a cause. I hope you continue with your improvements
Thanks for sharing, I'll see what the GP says around searching for a cause...
Don't think I've had a particularly hard time of this- just a very thorough GP (who is every bit as stubborn as I am) and a lot of support from here. Fairly sure I've seen everyone that might have been able to provide answers.I was thinking in your case that finding a cause may help you to ringfence your previous treatment - and prevent having to prove anything else in future.
These make for really interesting reading, thanks Sleepybunny. I don't think my mum was diagnosed with any b12 issues at the time but then again I'm not sure she was tested (she's been tested since routinely and levels have always been okay)
I know I had MMA as a baby but I dont know of any additional tests, just b12 injections given resolved the fits. Seems like post treatment it becomes so difficult to find the cause
"I know I had MMA as a baby but I dont know of any additional tests, just b12 injections given resolved the fits"
You may be interested to know that maternity/birth records are kept for at least 25 years after birth of last child.
So you or your mother may be able to access these records if you are under 25 .... if you have younger siblings they are kept for longer than 25 years.
As to nitrous oxide, I get very worried that there is nothing on the NHS page about pain relief in labour to warn people that prolonged exposure to nitrous oxide may cause issues.
"Clinical pharmacists work as part of the general practice team to improve value and outcomes from medicines and consult with and treat patients directly. "
Don't think that the clinical pharmacist is improving your outcomes libih
May be worth looking at the website for your CCG/Health Board and seeing if there are any statements about the role of clinical pharmacists in your area of UK.
You could submit a FOI request to CCG asking for their guidelines on the role of clinical pharmacists in GP practices.
You could also contact your CCG expressing your concerns about what happened to you.
There will be contact details on their website.
I was refused treatment on NHS multiple times despite many typical symptoms of b12 deficiency.
I realised that my only option was self treatment if I wanted to avoid dementia and permanent damage to my spinal cord as at that point I couldn't afford regular injections from a private GP or beauty clinic. I already had dementia type symptoms and symptoms affecting my spinal area.
I never wanted to treat myself and tried really hard to educate my GPs but I'm so glad I did in the end.
The person who runs B12 Deficiency Info website has been supporting campaigns to get injectable B12 available over the counter from UK pharmacies.
Thanks Sleeptbunny. All very odd, I was only told about the clinical pharmacists' review when I went for my last injection. No discussion, just she had decided...
Thanks for all the additional suggestions and links. So sorry to hear about your experiences. I sincerely hope you're feeling much better with self administration x
This has happened to me too. I went to book my usual B12 injection in November 2020, and was given an appointment, then the telephone receptionist said there was a note to say I couldn’t have it, and I needed to have a phone call from the Clinical Pharmacist first. A week after my B12 injection was due, the Clinical Pharmacist called and said that injections were no longer the best treatment, and in fact too much of it could cause an overloading for my body. She went on to compare it to having too much Vitamin C, then too much Vitamin D. She told me it was probably diet related, and told me it was because I was a vegetarian (which I am not, and I had to correct her 3 times, and inform her that I eat a wide variety of foods, meat, fish, fruit, vegetables, rice, pulses and nuts etc). She said that I could have tablets then, if a blood test proves low levels after a period of not having treatment. I informed her that when I was diagnosed in 2014, I had low levels of B12, folates, and iron. The doctor said my B12 level of 144, meant I would always need injections to maintain an acceptable level. (I had already seen a private doctor for stomach pains, who had identified I had very low iron levels, and did tests to make sure I didn’t have crohns). The Clinical Pharmacist said that would have been the advice at the time, but things had changed, and now I would not be having injections. I have now gone almost 9 months without them, and feel almost permanently tired and fatigued. My muscles ache, I have pins and needles, and a numb feeling in my fingers and toes. I get reoccurring headaches, and dizziness. I feel quite wobbly. I have strange pains just above my ankles, and have to walk downstairs backwards when I first wake up, as they feel so tight and painful. (It does ease a bit throughout the day). I have horrible back pain, particularly in my lower back. I do feel “foggy headed”, in that I am finding it harder to concentrate, and I lose my train of thought. I’m getting more breathless, and am breathing heavier when walking. I have had the blood test last week, and am awaiting the results.
I was interested to know you had fits when young, as I had febrile fits too. Mine were caused by high temperature from tonsillitis. I had debilitating glandular fever as a teenager, and numerous bouts of tonsillitis again throughout the years. I wonder if there was always a deficiency lurking.
I hope you get your treatment sorted soon. Take care
Oh my goodness Giggles21. If your bloods do not show up anything I hope you are considering private injections/SI? That's no life to be living and awful they've let you get to that stage. Have you told them how poorly you've become?
It sounds as though the clinical pharmacists have been given quite a lot of power over treatment which I'm quite surprised at. Lots of the members here have given me fantastic suggestions such as writing a letter detailing your concerns and your non consent to be taken off a treatment that was working. Perhaps this might be worth doing for you too?
I'm not at all qualified to say...Although I know I went cold before fitting, not hot which I think is more in line with the b12 and what mystified them (they kept telling my mum cold babies do not fit)
"the Clinical Pharmacist called and said that injections were no longer the best treatment, and in fact too much of it could cause an overloading for my body."
I think the clinical pharmacist has some misconceptions about B12 deficiency.
My understanding is that excess B12 passes out in urine.
See links below about misconceptions some health professionals have about B12 deficiency.
Treatment with high dose vitamin B12 been shown to be safe for more than 50 years
(from Dutch b12 website - units, ref ranges, treatment patterns may vary from UK)
Table 1 in above article is about frequent misconceptions about B12 deficiency.
If they say something like that to me, I'd ask them to refer me to research/guidelines that supports what they have said...Personally I'm not aware of any.
I might also say that large amounts of B12 are used as a treatment for cyanide poisoning.
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GP wants me to stop SI. Help Please.!!
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B12 injections stopped by GP.
