So I thought I was getting somewhere recently got diagnosed with a b12 and folate deficiency after likely suffering with it for years...I was given loading doses initially and after seeing some improvement got my gp to agree to move to 2 monthly instead of 3 monthly and I was to have my next one and get it touch once it started to wear off. I had my last one about 2 weeks ago...got in touch to make a new appt and was told my gp had left! Long story short managed to see a different gp yesterday explained what my old gp said and was told that I couldnt have them more regularly as nice guidelines state 2-3 months I was lucky to be getting them at all as my last bloods showed 1500 odd b12(a week after loading doses). I showed all the documentation you guys had mentioned before about neuro symptoms and he said that mine weren't and basically inferred that some people self inject (not that he recommended) and it could be an option. I have other diagnosed mental health problems too which are now being exacerbated by this and I literally dont know what to do. I really dont like needles and have been trying sublinguals but currently to no avail. I'm 35 years old and ready to give up 
any advice appreciated x
Need help not sure what to do now - Pernicious Anaemi...
Need help not sure what to do now
Firstly it sounds as if the new GP doesn't understand how to read and use blood tests after B12 injections - of course your levels were high - you had had injections. That didn't mean that you were okay.
You could try seeing another GP.
Self injection does still remain an option - providing you can afford it - and for many it also feels like regaining power and actually being in control of their treatment rather than at the mercy of GPs ignorance and arrogance. Many people with needle issues use an auto-injector with great success. Injections also don't need to be done into the muscle - they can be done subcutaneously into the layers of fat around the stomach or on the thigh. That's what I do and I was absolutely petrified the first time as I had some significantly off putting experiences of using anticoagulants after an operation.
Unfortunately sublingual doesn't work for everyone. You could try higher dose and/ or more frequently before abandoning it as a possibility.
Hi thanks for replying....yeah I gave up trying to argue after it was clear he wasnt going to listen.
I have looked at the possibility I might have to self inject and managed to find the ampoules but when it comes to the needles/equipment etc I dont I have a clue. I cant really afford much but if it keeps me well I'll have to find a way. Me and my partner are supposed to be trying to start a family next year and I need to get this sorted before then. The sublinguals I am trying are 5000mcg x
you can take the sublinguals as often as you like - though that does come at a cost.
you might want to look back over posts to see what people say about auto-injectors - it isn't a problem.
Most of us source needles from medicare - though if you are going to use an auto-injector it would probably be best to look at what types of needles they suggest.
medicare do some bog standard insulin needles which you can use for self-injection.
If you put up a separate post when you have decided what you are doing I am sure people will point you in the direction of suitable needles - suggest you specify if it is IM (intra-muscular) or SQ (sub-cutaneous) in the post.
Many thanks for your advice! When you say the sublinguals come at a cost do you mean financially or health wise? X
I would think financially.
I have my b12 injections at the moment 2 weekly at the surgery. I just went through all the gps in the practice. I was too ill too get assertive (I can be) but I was on a mission. Nothing else was helping me.
Questions like. Well how are you going to treat me?
Surly every patient is taken as an I dividuals?
Bnf guidelines clearly state every other day until no further improvement with neurological symptoms. My gp read it online on front of me.
I'm also looking into self injecting but sc. Just incase the rug is pulled hate being at their mercy . Recently an injection was refused as the Gp had written up the notes wrong. Automatically put 3 monthly. So i know what it is like.
I'd prefer whatever It to be on my medical notes.
I so wish theses gps will realise how many people need frequent b12 injections
Also how many are having to si .
I hope you do well in what you decide to do.
I think it's worth another discussion and say you will have to self inject if they won't provide what you need.
Some get prescriptions. So transparent and works for all.
Good luck and take care.
Hiya the gp said my symptoms were not neurological despite confusion, pins and needles, blurred vision, bad headaches and dizziness...also get chest pain, breathlessness, tinnitus, cramps and numb toes among other things he's a senior gp and partner and I saw him writing on my notes not to increase my jabs...I cant afford to go private and I'm at a loss as to how to stay well now! He said if my mental health team were concerned then they could prescribe other jabs but as far as I'm aware they cant but I have an appt on Friday so I'll take it from there...think I will end up having to bite the bullet and inject myself x
Demand a referral to a neurologist.
I saw a neurologist at the beginning of the year about my headaches which were diagnosed as migraines but this was prior to the b12 diagnosis so the gp wont refer me again as they said I'd already seen them...even though I said that it was before the b12 findings...basically they just dont want to know. I'm thinking of changing gp practices in the new year maybe I'll be more successful but I cant wait that long...losing chunks of my memory now too..was walking to work on friday and ended up walking down some random path which I have no recollection of doing and when I realised where I was I ended up having a panic attack...the hp says its probably a viral infection causing it...you literally couldnt make it up x
Perhaps athe
your appointment on Friday you could get a referal to a neurologist? ? Or write to Gp??
Keep a diary of your symptoms . Hope you get on okay on Friday
Here's a NHS page that lists symptoms of peripheral neuropathy. Show it to your GP and ask him why he doesn't think your symptoms could be peripheral neuropathy.
Hi,
What does GP think is the cause of your B12 deficiency?
Have you been tested for PA (Pernicious Anaemia), Coeliac , H Pylori infection and other conditions that affect absorption in gut?
If PA is a possibility, I suggest joining and talking to PAS who can point you to useful info to pass to GP.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
I think it is more effective to put queries about treatment into a letter to GP. In UK , letters to GP are supposed to be filed with medical notes so are hopefully less likely to be ignored than info passed on verbally or on photocopies.
See letter writing link below.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
"gp said my symptoms were not neurological "
Perhaps you could fill in PAS symptoms sheet which has a section on neuro symptoms.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Do you have any of the following which would usually be considered as neuro symptoms eg
tingling
pins and needles
insect crawling sensations
burning sensations
electric shock sensations
numbness
limb weakness
periodic limb movements (limb jerks), can also affect digits eg fingers/toes
restless legs syndrome
proprioception problems (problems with awareness of body in space)
If you lose balance when eyes closed or it's dark or something blocks your view of surroundings then this might suggest proprioception problems.
muscle twitches
muscle fasciculations (muscles rippling under the skin)#
word finding problems ( nominal aphasia)
migraine
memory problems
brainfog
confusion
doing daft things eg keys in the fridge
tinnitus
dystonia symptoms
vertigo
Include anything suggestive of peripheral neuropathy.
Link about peripheral neuropathy
nhs.uk/conditions/periphera...
I suggest including a list of all your neuro symptoms in any letter you write to GP.
You could also request a second opinion from a neurologist in letter and could point out that under treated B12 deficiency can lead to SACD, sub acute combined degeneration of the spinal cord.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
NICE CKS link below suggests GP should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. perhaps you could request a referral to a haematologist or ask GP to at least write to haematologist for advice.
NICE CKS
cks.nice.org.uk/anaemia-b12...
I've written a very detailed reply in another thread on the forum with links to more UK B12 articles/documents, B12 books and other B12 info. See link below.
healthunlocked.com/pasoc/po...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Warning
B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
Take someone supportive with you if you can to appointments.
I am not medically trained.
Hiya I've had the intrinsic factor antibody test which was negative and the coeliac one many years ago which was also negative but my previous gp believed it wasnt diet related as my diet is good and full of b12 rich foods...this gp just doesn't want to know x
Intrinsic factor test is not always reliable. It is possible to have Antibody Negative PA.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
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.
"and the coeliac one many years ago which was also negative"
When you were tested years ago, did your GP
1) Do both recommended tests?
tTG IgA checks for antibodies to gluten
Total IgA checks which patients have IgA deficiency.
People with IgA deficiency will need different tests for Coeliac disease.
See link below.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
2) Ask you to eat plenty of gluten in more than one meal per day for several weeks before testing?
A person who has Coeliac disease may get a negative result in tTG IgA test if they weren't eating a lot of gluten prior to test as in some cases there won't be enough antibodies to gluten circulating in the blood to register a positive result.
If you have gut symptoms suggestive of PA, Coeliac, H pylori infection etc, you could ask for a referral to a gastro enterologist.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
B12 deficiency and Mental health links
b12deficiency.info/b12-and-...
martynhooper.com/2017/01/22...
stichtingb12tekort.nl/weten...
I ended up treating myself when I had exhausted all my chances of getting NHS treatment however I do feel self treatment is a last resort.
Loading doses
Did you have any loading doses at start of treatment and did you have any neuro symptoms when your treatment started?
People with B12 deficiency with neuro symptoms are supposed to get every other day loading jabs until their symptoms stop improving then a jab every 2 months.
There is no time limit on how long these every other day jabs can continue; could be weeks even months of them if improvement continues.
Perhaps you could negotiate with your GP to have another set of loading doses?
See BNF link for info on UK recommended treatment for B12 deficiency
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
Hiya I should all the flowcharts etc to the gp in fact he had a copy of one! He said the neurological symptoms that NICE are referring to are based around a rare spinal issue apparently and not what I'm thinking of lol my appointment on Friday is with my psychiatrist but he used to be a gp and seems to know his stuff...as its affecting my mental health I'm hoping he might be able to help or refer me elsewhere otherwise I'll have to just do it myself! This comes off the back of being misdiagnosed with fibro 10+ years ago I've been fighting with docs for a while x
The rare spinal issue he is referring to is almost certainly SACD, sub acute combined degeneration of the spinal cord.
Under treatment of B12 deficiency can lead to SACD.
SACD can occur in people who have the symptoms of b12 deficiency but their B12 levels are within normal range.
ncbi.nlm.nih.gov/pubmed/191...
The BSH flowchart I linked to in other post mentions paraesthesia which is a neurological symptom
Paraesthesia means abnormal sensations such as tingling, pins and needles, formication (a sensation like insects crawling), burning and it is often associated with damage to peripheral nerves.
Has your GP read a copy of BSH guidelines?
Yeah it was the SACD thing I remember...everytime I tried showing him a flowchart or quoting an article he had a comeback or excuse why it wasnt applicable to me. He has given me a blood form to check my b12 and folate levels again but I'm scared to get it done as he implied that if my b12 was high again he would stop my 2 monthly injections...literally stuck between a rock and hard place. Thanks for everyone's advice though x
Don't know what the 1500 means but in the US I had a reading of 211 the way they check it here and I had muscle wasting and a lot of nerve damage in my leg calves. Gave myself shots weekly for 2 years and now just 2500mg pill each day of B12--My reading now is about 440 and I'm still not 100% but I'm about 30% as bad as I was with the leg pain.
It takes a long time of taking B!@ to get better but it will get better.
GP appointment update
Daughter, still really not great and cannot get through to medics
Thanks for advice, I now need some more!
Tests for B12d?
