Hello, my b12 level is 217, in February is was 351, that was when i had just had my last injection, all my injectins were stopped because level was 351, my symptoms are terrible now, even worse than when i was first b12 deficient , i have no energy at all, a little in the morning but its gone by afternoon, i have pins and needles, achy arms and legs, general feeling unwell, my memory is terrble, i get confused easily as well. My b12 levels have dropped since February, and my b12 is not diet related, should i still be recieving my injections? Im at my wits end, and cry most days because i feel so awful, but my doctot told me No GP will give me injections.
B12 level 217: Hello, my b12 level is... - Pernicious Anaemi...
B12 level 217
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Padeficiant12
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I'm sorry you feel so terrible Padeficiant 12 but you've come to the right place. There are some very knowledgeable people on this site and I am sure someone will give you some useful advice. Are you a member of the Pernicious Anemia Society? There are a lot of leaflets and articles on there which might help to persuade your GP to continue treatment. I don't know why he has decided to stop injections - has GP said whether you will continue to receive every 3 months?
Being new to the site myself I am not very well-informed yet but I wanted to offer some support. Good luck and I hope you are able to continue your treatment.
Thankyou for your reply, the doctors has stopped my injections altogether and told me i dont need them anymore, but my levels have dropped alot since i had my last injection and i just cant live like this, its painful every day just to do normal things 
I'm afraid you will have to be persistent with them until they agree to investigate further. Do some research and inform yourself so that you have enough knowledge to ask them the right questions. Sorry you feel so low - chin up and don't give up.
This is what the BNF recommends:
Treatment of Pernicious Anaemia with Neurological Involvement:“Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 μg (i.m.) on alternate days until there is no further improvement”
Also read this from the BCSH:
New Guidelines on Cobalamin and Folate issued by the British Committee for Standards in Haematology in June 20141 addresses the treatment of patients with Pernicious Anaemia. Here’s what the New Guidelines have to say about treating patients:1. There is no cure for Pernicious Anaemia. The inability of the patient to absorbVitamin B12 from food means that he or she will be prescribed replacement therapyinjections FOR LIFE.“the patient should have lifelong treatment with replacement cobalamin”2.Other than one single test, taken just after the patient has received loading doses of vitamin B12 right at the start of his or her treatment there is no value in testing the vitamin B12 status once patients once treatment has been started.“Once treatment of Pernicious Anaemia has started no further testing for cobalamin levels is required”
I hope this is of some help.
Thankyou so much, i have trouble in understanding it all, and trying too explain to the doctor is even harder, i am easily confused, but i am going to try and wrote a few things down to take to the doctor, thankyou for your well wishes, i just would like to feel normal again, well normal for me 
Why not print it off and give it to doctor to read? Good luck and hope you feel better soon.
Thats a good idea thankyou x
clivealiveForum Support
Hi Padeficiant12 in addition to the excellent advice given above by Zumba123 I suggest you make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and go to "Treatment for B12 deficiency"
google.co.uk/url?sa=t&rct=j...
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are dropping over time.
I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.
I wish you well.
Gambit62Administrator
Padeficiant - suggest that you try to persist - your GP really needs to look at the BCSH guidelines and recognise that what you have is a B12 absorption problem and that serum B12 (whilst useful as a test for diagnosing a B12 absorption problem) is not one that can be used to manage treatment of a B12 absorption problem. The guidelines are quite clear that injections are for life (unless the absorption problem is one of the rare problems that can be treated and has been treated).
The fact that your B12 levels are dropping significantly is clear evidence that you still have an absorption problem and the only way of treating that is to by pass the gut as a way of treating you.
The normal range is completely useless post loading shots as significant numbers of people need very high levels post loading shots - mine need to be well off the top of the measurable range for me to feel well. The test doesn't measure what is happening at the cell level and significant numbers of people seem to respond to high serum B12 in a way that makes the mechanism that transfers B12 from your blood to your cells much less efficient. Symptoms of B12 deficiency in the presence of high serum B12 is recognised as a symptom of kidney and liver problems that can lead to serum B12 levels building up.
Perhaps you could point your GP to the area on the PAS website that is specifically aimed at medical professionals.
Agree with comments above. Not sure why doctors seem to be so obstructive on this issue.
Thankyou for all your comments, i will be making some notes to take along with me to the doctors, i honestly do feel like giving up, every time i have tried so far i just get the same outcome, the doctor fobs me off
Hi,
It's helpful to know which country you are in as B12 treatment varies between countries.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries too.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
Some UK forum members have had help from B12d.org
B12 Awareness (USA website)
Stichting tekort (Dutch B12 website with English articles)
stichtingb12tekort.nl/weten...
If you're in UK, I suggest reading the following articles/documents..
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
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 UK b12 guidelines.
"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.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
More B12 info in pinned posts.
I am not medically trained.
Thankyou , im in the uk, i will have a read
Hi again,
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
The link above has a lot of useful info and ideas for writing to GPs about B12.
Sometimes writing a letter can be more effective (especially if GP is unhelpful) as in UK, my understanding is letters to GP are filed with medical records.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Do you have a diagnosis of PA (Pernicious Anaemia)?
Is there a family history of PA or B12 deficiency?
If you have a diagnosis of PA or think PA is a strong possibility, probably worth joining and talking to PAS soon. PAS can sometimes intervene on behalf of PAS members. They can support people seeking PA diagnosis.
PAS members can access following documents in Library section on PAS website.
"An Update for Medical Professionals: Diagnosis and Treatment"
pernicious-anaemia-society.... See Page 1 of articles.
If you have had PA diagnosis, treatment is B12 injections for life. PAS have leaflet "Treatment is for life"
Blog post about how PAS have supported people seeking PA diagnosis.
martynhooper.com/2017/06/24...
Best piece of advice I ever got was to get copies of all blood test results. Might also be worth getting complete set of medical records (not just online summary).
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Above document recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease. In UK, two tests are recommended.
1) tTG IgA
2) Total IgA
If you've been tested for Coeliac disease, did you have both of the above tests?
H Pylori infection
patient.info/health/dyspeps...
Have you been tested for H Pylori infection?
Thankyou, i have just sat and wrote a letter too my doctors, asking for my full medical records. I have looked at all my results for blood tests, my first test for b12 showed level of 112, which proceeded with loading injections, i had my last b12 injection on july 2017, on 1st of sept 2017 b12 was checked again and showed 1,175, i was told no more injections... i was cured! February 2018, b12 checked again at my request as symptoms were still present, level of 351, a massive drop! Then last test sept 2018, levels are 217, so still dropping, yet gp has told me they are fine and no one will authorise my b12 injections anymore.
Hi,
Curious as to what GP thinks caused your original low B12 and currently dropping B12 levels.
Have you asked GP directly what they think caused your original low B12 and currently dropping levels?
It's possible they have assumed it is diet.
If you eat a diet with plenty of B12 rich food eg eggs, dairy, meat, fish, shellfish, foods fortified with B12 then diet as a cause becomes less likely and it become smore likely that there is a B12 absorption problem in the gut.
Have you ever been tested for PA? In UK, this would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative/normal range. See flowchart link and BSH guidelines link for more info about Antibody Negative PA.
You mention pins and needles, which is usually considered to be a neurological symptom.
What other neuro symptoms do you have?
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
NICE CKS link below recommends GPs should contact a haematologist, for patients with b12 deficiency with neuro symptoms.
NICE CKS
cks.nice.org.uk/anaemia-b12...
Has your GP written or referred you to a haematologist?
Have you been referred to a neurologist as you describe neuro symptoms?
Patients can request referrals although GP does not have to agree. I put referral requests into a brief, polite letter to GP along with supporting evidence eg symptoms, family history, extracts from Uk B12 documents etc
Do you have gut symptoms?
If yes, have you been referred to a gastro-enterologist? A gastro specialist may be able to spot signs of gut damage from PA, Coeliac disease, H Pylori infection etc.
I would warn you that sadly lack of awareness of B12 deficiency exists in some specialist doctors as in some GPs so make sure you are well-prepared for any specialist appointments.
HDA patient care trust (link in post above) can arrange private referrals to specialists including haematologists/neurologists in some cases. Full medical history is required.
Think your best bet for help is to talk to PAS (Pernicious Anaemia Society).
Good luck.
I have balance problems, i stumble quite alot, my gp never looked into why i have b12 deficiency, my diet is ok, i eat plenty of meat, eggs, dairy, and veg.
My memory is also terrible i don’t remember anything, i also have restless legs, at night time.
Hi Padeficiant12. I was diagnosed with PA a year and a half ago. Since then, I've been in this group. It always shocks me to hear that docs aren't really educated in PA or low b12. And worse yet, give loading doses, see a rise in b12 levels and think it means an end to a problem. If it wasn't for a specialists, I'd be dealing with the same thing. My primary wanted to end treatment and my other doc says no way and I needed injections often and for life. Finally they prescribed home injections twice a week. If I were you, I'd want to know if I have PA or low b12 so you can't get the proper treatment.
Hi Wowo24, thankyou for your reply, its awful the way doctors are not properly trained in b12 and PA, my doctor doesnt seem to have a clue, just said i was cured when my levels were up, yet i felt so much better when they were higher, i await a reply to my letter i sent to the practice manager, i really need to be refered, i would like to know if i have PA as i have all these stomach problems, that disappeared while i was on my injections, i am struggling with breathlessness badly at the moment, i also have pre diabetes.
Hi again,
I am not medically trained but you describe symptoms such as stumbling, poor memory that are usually considered to be neurological.
UK recommended treatment for non dietary B12 deficiency without neuro symptoms is 6 B12 loading jabs over 2 weeks followed by a B12 jab every 3 months.
UK recommended treatment if neuro symptoms are present (whatever the cause even diet) is
A B12 loading jab every other day for as long as symptoms continue to get better then B12 jabs every 2 months.
GP can find this info in BNF, NICE CKS and BSH links in my first post.
"i await a reply to my letter i sent to the practice manager"
Do you have someone supportive you can take with you to appointments?
I think it is a good idea to have a witness present especially if GP etc is unhelpful.
You could make probably make an appointment with practice manager.
If you join the PAS, it may be a good idea to talk to them before next appt with GP. They can pass on useful info. Costs £20 to join for a year.
"doctor doesnt seem to have a clue, just said i was cured when my levels were up"
As far as I know, PA is at moment incurable but is treatable. PA requires lifelong treatment with B12 injections.
Stopping B12 injections in someone with B12 deficiency may lead to further deterioration.
Is your GP aware that untreated or under treated B12 deficiency could potentially lead to spinal damage?
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only. Some forum members have passed this on to GPs.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Blog post about help if injections stopped
b12deficiency.info/blog/201...
" i eat plenty of meat, eggs, dairy, and veg."
If your diet is B12 rich then a dietary cause of low B12 is less likely. It might be a good idea to write down a typical weekly diet so GP can see that diet is B12 rich.
GP needs to find out what is causing the problems. Have you got your medical records yet?
UK maximum cost records £50
UK maximum cost test results £10
Make sure that they really do give you the complete records. They may just print out online summary which probably won't have all the info needed. You may need to request access to paper records as well.
If finance is an issue, you can make an appt with practice manager to view your medical records, this is free.
What was your original low B12 result?
I think it is worth looking at a copy of the original low B12 result that made them start injections.
Look carefully at any comments from the laboratory that did the test. If the B12 result was below the reference range there will probably be a note from laboratory that an Intrinsic Factor Antibody test (IFA ) is recommended. You can then ask if IFA test was done and if not, why not.
It's possible that GP may offer to do IFA test. Might be helpful for GP to see this flowchart which outlines when PA and Antibody Negative PA can be diagnosed in UK.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
IFA test can be affected if blood taken close to having B12 injection or supplements.
May also be worth checking records to see if Coeliac tests and H Pylori tests were done in past. I suggest always checking records/results. I was told everything was fine and found abnormal results when I checked my results.
What to do next if B12 deficiency is suspected
b12deficiency.info/what-to-...
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Hello, i spoke with the practice manager today, she made an appointment for tomorrow with a nurse practitioner, the practice manager told me she wasnt medically trained, and told me not to look on the internet, i told her that id looked at nice guidelines, she didn’t say much to that! She also told me that because my b12 was in range 212 (120-900) that they wouldn’t give me the injections! So im probably wasting my time with the appointment shes given me for tomorrow i am going to take someone with me to my appointment.
My orignal b12 was 112 , raised to 1,000 with injections, 5 months later 351, another 5 months later 212, so falling, thats what they dont get when i tell them that, all they say is its in normal range still.
Hi again,
Sad to hear your appt with practice manager was not very helpful.
Suggest you think about joining PAS soon.
You may be able to speak to chair of PAS, Martyn Hooper before your next appt.
PAS office is open most mornings, 8am till 12 noon and messages can be left. It's better to phone than e-mail.
pernicious-anaemia-society....
I suggest taking following PAS leaflet if you join PAS, with you to next appt as it summarises how to diagnose and treat PA and is based on UK b12 guidelines.
"An Update for Medical Professionals: Diagnosis and Treatment"
PAS can give info on how to discuss possibility of PA with GP.
I always preferred to put queries about treatment in a letter to GP as letters to GP, as far as I know , get filed with medical records. My experience was that things said in an appointment can get ignored or not recorded in notes.
"i am going to take someone with me to my appointment"
Glad to hear this. Might be helpful if they read the UK B12 documents I listed. I suggest having a copy of summary page from BSH Cobalamin guidelines with you.
In the third pinned post, there is a useful summary of mainly UK B12 documents. I think it is worth reading this before your appointment. See last link in list below.
healthunlocked.com/pasoc/po...
Help for GPs and other health professionals
1) Nurse practitioner/GP might be interested in section on PAS website for health professionals. Health professionals can join PAS for free as associate members.
pernicious-anaemia-society....
I believe PAS has access to GP who understands PA. It may be possible for your GP to speak to this GP.
2) PAS Leaflet "An Update for Medical Professionals: Diagnosis and Treatment"
3) I gave a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" to my GPs. If finance is an issue, there may be copies of this book available from your local library service that you could read.
Another reason to consider joining PAS is that PAS members can access local PAS support groups. Not all PAS members have a PA diagnosis because getting a PA diagnosis can be very difficult. These local support groups may be a source of useful info on helpful GPs in area etc.
There are 8 PAS support groups in UK.
pernicious-anaemia-society....
Moving GP Surgeries
nhs.uk/common-health-questi...
I stayed with an unhelpful GP surgery for years because it was the most convenient one for me to reach. I eventually realised that if I didn't move I was likely to deteriorate badly. Pressure was put on me to move because they found it difficult to cope with an assertive patient. My difficult experiences badly affected my level of trust in NHS.
Have you considered moving GP surgeries? You do not have to give a reason. I would suggest that you get copies of records/results before any move though.
Records
If you are unhappy with anything in your medical records....
1) GP surgery has a legal duty to correct any factual inaccuracies eg wrong date of birth etc.
2) GP surgery does not have to change something just because you disagree with it but you can request that a note giving your side of story is inserted in records.
Private Treatment
Are you in a position to seek private treatment? Although I will add that this is no guarantee of better treatment. I was told that HDA patient care trust have access to haematologists, neurologists, gastro specialists etc.
HDA patient care trust Contact Details
tel no 0207 935 8366
Thankyou for all your help, i am going armed and ready for appointment this evening, i will update as to how it goes.
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