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 you need it in the future.
I'm glad that you are getting some treatment.
What treatment does your GP plan to give you after the 6 loading injections have finished?
Do you have any neurological symptoms?
Have you been referred to a neurologist if you have neuro symptoms?
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
I suggest you read the guidelines below as sometimes GPs are unaware that people with neurological symptoms should be on a different treatment pattern to those without neuro symptoms.
Each CCG/Health Board and NHS Hospital trust in UK will have their own local guidelines on treatment and diagnosis of B12 deficiency. I recommend tracking down the local guidelines for your area of UK and comparing them with BSH/BNF and NICE CKS links.
I have put some local guidelines on the forum so may be worth searching the posts.
Some of these local guidelines are not very helpful. See blog post below.
Your GP should also be trying to find out why you are B12 deficient.
What's your diet like?
Do you normally eat plenty of B12 rich food eg fish, eggs, meat, shellfish, foods fortified with B12?
If your diet prior to being diagnosed had plenty of B12 rich food in it then diet as a cause is less likely and chance of an absorption problem in gut increased.
Units of measurement and ref ranges may vary from those in UK.
"my Iron levels are great so I don’t have anemia or pernicious anemia"
I think your GP may some misconceptions about B12 deficiency and PA.
It's possible to have PA or another cause of B12 deficiency without having any anaemia. See links below that mention misconceptions about B12 deficiency.
Vital to get adequate treatment for B12 deficiency. Untreated or under treated B12 deficiency can lead to an increased risk of permanent neurological damage.
Link above has letter templates covering a variety of situations linked to B12 deficiency.
Point 1 is about under treatment of B12 deficiency with neurological symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
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.
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.
"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 does not show updated BNF info.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I am not medically trained.
I have written other detailed replies on the forum which may be of interest.
How low a reading of 70 is depends on the units (ng/L or pmol/L). Just as you've no idea how heavy a person is if they say 140. They could be very heavy if they are talking kg, or quite light if talking pounds.
However, 70 is going to be low, or very low.
"my Iron levels are great so I don’t have anemia or pernicious anemia"
You can easily have Pernicious Anaemia without having an iron deficiency. Indeed, you can have it without being anaemic at all. It is, indeed, a stupid name.
I find that they tend to hurt about as much as having a vaccination.
What did the doc say is the cause of your low B12? Do you have a decent diet normally (i.e., do you eat plenty of meat and/or fish)?
Right, you need to get some answers to these questions -
1. Why was your B12 so low? There are many possible causes. It could be dietary, but that doesn't sound likely. If it's not caused by a lack of B12 in your diet, then it must be because the B12 you are eating isn't getting into your body - an absorption problem.
2. What is causing your absorption problem? Do you take PPIs (for high stomach acid) or metformin (for diabetes)? Have you had gut surgery? Do you have coeliacs or Crohn's disease? If the answer to all those is 'no' then you almost certainly have Pernicious Anaemia.
So ask your doctor why your B12 was so low. Ask her how she knows you don't have Pernicious Anaemia.
Tell your doctor that you need to be treated in accordance with the British National Formulary - with injections every 2 to 3 months.
Tell her that there is no point in measuring levels after 6 months because they will be high, but that doesn't mean the deficiency has been fixed.
I think it's possible that your GP has assumed your low B12 is due to diet.
You could write out a typical weekly diet, food and drink and send/give a copy to GP so you can discuss whether diet as a cause is possible.
"just dairy so I hope this is all.....Though I eat chicken a lot"
Do you eat eggs?
Do you eat any other meats?
High alcohol intake can have an impact on B12 levels.
If the cause of your low B12 is not diet but an absorption problem, 6 months is a long time to go without treatment with the potential for permanent neurological damage to occur.
Please have a good look at the symptoms lists and make sure your GP has a list of all your symptoms especially every neurological symptom you have.
Do you have any of these neurological symptoms ?
tingling
numbness
pins and needles
burning sensations
insect crawling sensations (formication)
electric shock sensations
tinnitus
muscle twitches
muscle fasciculations(ripple like muscle movements)
flickering eyelids
restless legs syndrome RLS
periodic limb movements (limb and digit jerks), can also affect head/neck
vertigo
clumsiness
dropping things
bumping into things
strange gait (unusual way of walking)
word finding problems (nominal aphasia)
memory problems
unusual behaviour eg putting car keys in the fridge
migraine
balance issues
brainfog
proprioception problems (problems with awareness of body in space) etc?
There are many other possible neurological symptoms besides these.
I think it's especially important to mention any symptoms that affect your spinal area as this may make any GP sit up and take notice.
Untreated or under treated B12 deficiency can lead to damage to spinal cord.
For example I had tingling, pins and needles and numb spots in my spine and the sensation of water trickling down my spine plus back ache and my coccyx (at end of spine) was very painful at times. These symptoms to my mind were suggestive of nerve damage.
If yes to any neurological symptoms, my understanding is that you should be on the second pattern of treatment listed below.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
There is not set time limit for how long the every other day loading jabs can continue for a patient with B12 deficiency with neuro symptoms. It could be weeks even months.
NHS can be rather stingy with B12 treatment so be prepared to be assertive and fight for effective treatment.
To my mind effective treatment is enough B12 to keep any B12 deficiency symptoms
from returning.
Mild dietary B12 deficiency is sometimes treated with low dose oral b12 (cyanocobalamin) tablets.
More severe dietary deficiency with neuro symptoms should be treated with B12 jabs.
See BNF/BSH and NICE CKS links in my other reply for more info about treatment.
Symptoms Diary
Some forum members keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is given. This can provide useful evidence of deterioration or improvement in symptoms to show GP.
Sadly a lot of people have to fight hard to get effective treatment for B12 deficiency. It's not just a UK issue either.
Some like me have to resort to self treatment, which I feel is a last resort.
I hope you have someone supportive to talk to, even better if they've read something about B12 deficiency as well.
I've written some very detailed replies with more B12 info eg more B12 articles, B12 websites, B12 books etc in threads below which might be of interest.
If your GP has decided that this is diet-related , I would've thought it would be a surprise to find your iron level so great. This is a low result : "concerningly low"-and for that reason alone, I'd be wanting to delve a bit deeper. I would have thought a very low result would make pernicious anaemia a more likely cause, and iron tests can't rule that out.
Were you asked about your diet ? Were you given advice about diet ? (Chicken isn't the best source of B12 if it is diet-related by the way) Has GP tested your folate, ferritin, vitamin D, thyroid ? What are your symptoms ?
Really don't be scared. It doesn't help much when given the wrong information about pernicious anaemia, but a GP can do all the suggested reading too if they are unsure. Let's hope that happens. If you are given no further information about continuity of treatment, ask the nurse what is going to happen after you have had the loading dose (the six injections)- there should be instructions about a maintenance dose (usually every 2-3 months but can occasionally be more often ).
I never felt my B12 injections at all for ten months- I mean by that that I had to ask "are you done yet?" every time. Only when my injections were increased massively did I start to feel anything- and even then I only knew I was being injected. It didn't actually hurt.
Usual reason if it does hurt at all is simply that if the small glass bottle has only recently been taken out of the fridge, the B12 inside is thicker and colder. Just needs a chance to warm up a bit first - but any good nurse will realise that, because it would be more difficult to inject it. I never had a nurse that did a painful injection. There were four of them and I had an awful lot of injections.
Besides, nurses have all been doing nothing but injections for months now, so you should be getting them at their peak !
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