Hope

[Wllliam]

Had my b12 injection ten days ago 12weeks.don t feel any improvement. Fatigued still burning when I wake. Was better on eight weeks took of it.Dr day my levels were high. Why are my levels high.

[Jillymo]

It should be obvious to the Dr your levels are high now that you are on injections. That is why in the guide lines it states NO NEED for furher testing. 🤔

If only these Drs considered this before lowering our meds less of us would be suffering.

Lets face it it's not 🚀 science.

[Sleepybunny]

Hi,

There are too many of us on this forum who have met health professionals who don't understand B12 deficiency.

I suspect your GP may be one of them.

There's a lot of info in the links I post so I suggest reading it over several days, a bit at a time.

Some links I post may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has useful articles and a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively. Harder to ignore a letter in my opinion. Keep letters short. Keep a copy.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US (aimed at health professionals)

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

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

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment guidance has changed since above blog post was written.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

UK B12 documents

NHS article about B12 deficiency

(simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

(aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

(main points from above document)

pernicious-anaemia-society....

BNF Hydroxocobalamin

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

NICE CKS b12 deficiency and folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages of info)

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

If you want to know why I encourage UK forum members to check their local guidelines, see blog post below.

b12deficiency.info/gloucest...

I am not medically trained.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...