Hi all,I have PA. I did not receive my B12 when I should have. Will I have to start injecting from scratch, or would it be ok to just carry on with them?
I already have ringing in my ears, sensitive to light and noise. Numbness and tingling in my fingers and toes, and a rash on my chest and arms, so far.
Has anyone any information please.
Thank you in advance.
Hi Mannequin18 don't worry about missing just one injection - if you can get another ahead of your next scheduled one that will be fine (explain to your nurse what has happened) and if you self inject - do it now.
You cannot "overdose" on B12 as any excess is excreted via your urine.
I wish you well.
Thank you. I have asked to self inject, the nurse is showing me how to on Friday, and my GP has authorized an injection without the blood test he was going to do before anymore injections. I think he realized what you have said is correct, and you cannot overdose, so it really doesn't matter what my levels are. (From a previous post).
I have been on B12 injections for over 47 years and I "know" when my next one is due in the run up to it - my next one is next Tuesday - a day later than usual because of the Bank Holiday 
Yes, I seem to need mine 2 or 3 weeks before it is due.
I think the doctor will listen to me now. And that is because of all the very helpful information on this forum. Thank you.
My Dr knows I SI & is totally fine about it after I explained that I kept a diary of how my symptoms would return after only 2-3 days of my 3 monthly injections.
My nurse was amazing & showed how & where to inject etc.
Sounds like you & I are lucky in that respect as there so very many who struggle to get their uneducated dr's to listen to their patients.
Good luck 👍
Thank you. I am lucky that he did listen.
Hi,
"I have PA. I did not receive my B12 when I should have"
PA treatment is for life.
I suggest joining and talking to PAS (Pernicious Anaemia Society). They can sometimes intervene and at very least can point you to useful info to pass to GP.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK, currently there are 13 groups.
pernicious-anaemia-society....
You will probably need to be a member to access support. Costs about £20 for a year's basic membership.
pernicious-anaemia-society....
PAS office is open several mornings a week. Best to phone.
pernicious-anaemia-society....
PAS website has library section with useful leaflets/articles which some forum members pass on to GPs eg
"An Update for Medical Professionals: Diagnosis and Treatment "
" Treatment is for life "
Some B12 links that may have useful info.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
It's possible to have more than one cause of B12 deficiency at the same time.
Have you been checked for Coeliac disease?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
For H Pylori infection?
patient.info/digestive-heal...
Any exposure to nitrous oxide recently?
gov.uk/drug-safety-update/n...
Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish?
Any medications that may affect B12 (or folate) levels?
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates and lots of B12 info.
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
UK B12 documents
I suggest reading all these documents if you're in UK. BSH, BNF and NICE CKS links have info about recommended UK treatment patterns for B12 deficiency.
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).
"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".
More B12 websites
B12 Deficiency Info website
B12d.org hold support meetings near Durham , UK.
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
May be stories on these that are relevant to you.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
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...
Neurological Symptoms
You mention numbness, ringing in ears (tinnitus?) and tingling. These would usually be considered as neurological symptoms.
Do you have other neuro symptoms eg pins and needles, insect crawling sensations, migraine, eyelid flickering, muscle twitches, brainfog, memory problems, balance issues, tremors etc?
It's possible your GP is not aware that patients with PA and other causes of B12 deficiency are supposed to have more intensive treatment if neuro symptoms present. Untreated or under treated B12 deficiency can sometimes have severe consequences eg permanent neurological damage.
1) UK recommended treatment 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 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
I think you mentioned on another thread that you were getting jabs every 3 months.
My understanding is that if neuro symptoms present, you should be on second pattern of treatment. It reads as if you are on first pattern of treatment, for those without neuro symptoms.
How many loading doses did you get at start of treatment?
Was it 6 over 2 weeks or several weeks of every other day jabs?
If your symptoms are deteriorating, your GP might consider giving loading jabs again.
Your GP may not be aware that BNF (British National Formulary) guidance on treatment for B12 deficiency changed recently. See blog post below.
pernicious-anaemia-society....
Your GP may be using an out of date BNF book.
Have you seen a neurologist? I used to request referrals in brief, polite letters to GP along with evidence that supported request.
There are many possible causes of neuro symptoms and it's important to exclude other possibilties.
Has your GP contacted a haematologist? NICE CKS link indicates that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms present.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Other possibilties
Having an auto immune disease can increase chances of other auto immune diseases developing.
Has GP excluded the possibility of other conditions eg Coeliac, Lupus, Hughes Syndrome (APS) and others?
"I think the doctor will listen to me now"
Glad to hear you are hopeful.
May be helpful to put queries about treatment in a letter. In UK, letters to GP are supposed to be filed with medical notes so harder to ignore in my opinion.
Assertive patients
Some GPs find it hard to cope with assertive patients so be prepared for possibility of GP/patient relation ship deteriorating
Help for GP
PAS website has a section for health professionals that your GP may find helpful. They can join PAS for free as associate members.
pernicious-anaemia-society....
I am not medically trained. More B12 info in pinned posts on this forum.
B12 loading doses no difference
B12 loading doses stopped
b12 loading dose pain
B12 loading doses query 
B12 loading dose jitters 
