First post - help please 😊

[Sassybob]

Hi everyone,

I was diagnosed in May this year with Pernicious Anaemia (I had actually contacted the doctor as I had deteriorating memory- I’m 45years old) I had 2 weeks of loading b12 doses then yesterday I had my first 3 month b12 shot. I asked the doctor if I could go to 2 monthly but they aren’t keen on that it seems so my question is……..

I have been following this site ever since I was diagnosed and I understand that other sufferers have purchased their own b12 ampoules from overseas to self inject please may I ask for a complete step by step guide in layman’s terms (without abbreviations if possible please 😊) as to what I do and what I need to purchase as I have never self injected anything before!

I appreciate, I’m asking for a lot of information but I’m just so worried that I might do something wrong 😂

Happy weekend everyone.

[Nackapan]

Firstly your Gp can easily up the frequency to at least 2 monthly and more frequently on an individuald need.Do while buying it also pursue this.

Write in.

Has to go on your notes the need for a higher frequency

It's on your records then.

I had a real battle at the start and was successful.

Then bought some anyway as wanted more control ( covid)and to fo it subcutaneously as my arms were so sore.

If yih uses the search bar above

Wedgewood and preciously fbirdef have given clear guidance. Also a shopping list.

For sc j uses 30G 1/2 " needles to inject

27-30g suitable 1/2-3/4 long suitable .

[Sleepybunny]

Hi,

I'm assuming you're in UK.

May be worth having another go to get more frequent B12 injections from GP.

BNF suggests that patients with B12 deficiency can have maintenance B12 injections every 2 months if neuro symptoms present and every 2 - 3 months if no neuro symptoms.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Memory issues would count as a neurological symptom.

Do you have other neuro symptoms and does your GP have a list of all your symptoms?

Have you considered joining PAS who can offer support and pass on useful info?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

If you suspect PA or have a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Link above has letter templates that people can base own letters to GP on.

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.

Keep copies of any letters sent or received.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Films and videos about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

There may be some details in the links that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.