What do I do now?!

[Ordinary39]

I had to fight to get a loading dose of B12 after being diagnosed as deficient. I was told to come back in 12 weeks for my first "booster". I didn't push my luck and ask to be tested for PA as I figured the treatment is the same either way but I suspect that's the cause of the deficiency as my diet is rich in B12 and I have had Hashimotos for 30 years.

2 months after my last loading dose injection I slowly started getting headaches and feeling abnormally tired again. I spoke to a GP over the phone after writing my symptoms down in an on line form. I suggested I might need an earlier top up of my b12 and he told me if that's what I wanted I'd have to go private! The headaches and exhaustion were my most problematic symptoms at diagnosis but they went away once my treatment started so I'm certain that must be the cause. I can't live like this for one month out of every three! If anyone has any advice I'd be very grateful.

[Gambit62 Administrator]

Think the first thing would be to ask for treatment in line with BNF which is 8 weeks with neuro symptoms and 8-12 weeks without - changed a few years ago - write to GP with copy to practice administrator.Some people find that high dose oral works well for them so you could try that - it doesn't work for everyone and its best started just after an injection - anything over 1000mcg a day - either as sub-lingual or as tablet - available as a vitamin supplement. You can have multple times 1000mcg.

Suggest you try whilst waiting for reponse from GP but the real test will be what happens when you have your next regular injection.

Other supplement forms are nasal sprays and some people even find that patches work for them.

There are other options if none of this works.

[DogLover55 in reply to Gambit62]

This is interesting, I'd love to know where I can get patches from and if they are any good.

[Gambit62 Administrator in reply to DogLover55]

seem to be plenty of sources if you google - can't say how useful they are - the B12 molecule is very large so not sure how it would pass into the skin unless the patches use some form of micro-injection system.

[DogLover55 in reply to Gambit62]

Thanks, I'll look into it. 😊

[Emsworthy]

I had this. My symptoms return after two to three weeks of having an injection and despite explaining this, the only 'help' I was given was to be able to come in at week 11 rather than 12. Got sick of the sound of my own voice in the end and decided to start self injecting. Haven't looked back since!

[Sleepybunny]

Hi,

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.

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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

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 B12 deficiency diagnosis/treatment. I suggest you get hold of guidelines for your CCG/Health Board and compare them with BSH. BNF and NICE CKS links.

Search forum posts for "local guidelines" as some have been posted on here or try an internet search or submit a FOI (Freedom of INformation request to CCG/health board asking for a copy of B12 deficiency guidelines for your area.

Good to know what you are up against locally...

Hope you are not in the UK area discussed in blog post below.

b12deficiency.info/blog/202...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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....

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 have.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

Some UK forum members find they cannot manage on NHS levels of B12 treatment and some resort to self treatment.

I've written some very detailed replies in threads below with lots of info about B12 deficiency eg books, B12 articles, B12 websites, symptoms lists, causes and a few hints about dealing with unhelpful GPs etc

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

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