Night mare

[Cardiffcity3]

Is 157 low for b12 my doctor said it's fine

[Nackapan]

What is the' in range'. Or measurement used?

What are your symptoms ect ?

[Cardiffcity3 in reply to Nackapan]

I'm not sure the range the doctors just said 157

[Nackapan in reply to Cardiffcity3]

I woukd get a copy. The range is in brackets on the right

[Sleepybunny]

Hi,

If the result was 157 ng/L then that seems pretty low to me...I'm not medically trained.

Try to track down the local guidelines on treatment/diagnosis of B12 deficiency for your CCG/Health Board and compare what they say with documents below.

From your screen name, I'm assuming you're in Wales.

Health Boards Wales

wales.nhs.uk/ourservices/di...

UK guidelines indicate that patients with the symptoms of B12 deficiency should be treated even if serum B12 results are within normal range.

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.

Low dose cyanocobalamin tablets are sometimes prescribed for dietary B12 deficiency.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

There are moves across UK to put more patients onto high dose cyanocobalamin tablets as alternative to IM (intra muscular) hydroxycobalamin injections.

My understanding is that patients with B12 deficiency with neuro symptoms should be on B12 injections even if the B12 deficiency is linked to diet.

Do you have any neuro symptoms?

BNF Hydroxocobalamin

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

NICE CKS

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

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

From your screen name, I'm assuming you're in Wales.

PAS (Pernicious Anaemia Society is based in Wales.

If you suspect you have PA, worth joining and talking to them.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring.

PAS support groups in UK

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.

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.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Access to medical records Wales

dhcw.nhs.wales/systems-and-...

patients-association.org.uk...

CAB NHS Complaints Wales

citizensadvice.org.uk/wales...

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

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.

[Cardiffcity3 in reply to Sleepybunny]

My doctor have said low is below 130

[Sleepybunny in reply to Cardiffcity3]

I think it's very likely that your GPs decision is being based on your Health Board's local guidelines which is why it's worth trying to track them down.

BSH Cobalamin and Folate Guidelines ( see link in other reply) suggest treatment should be considered for those with results below 200ng/L and also those who have normal range results but have the symptoms of B12 deficiency.

You might be interested in this blog post about Cardiff and Vale NHS trust from 2013

b12deficiency.info/cardiff-...

It's possible that your GP is using an out of date reference range as the local guidelines should be reviewed every few years.

Sadly there are some GPs and specialist doctors whose understanding of B12 deficiency is limited. It pays to do some B12 homework in case the doctor hasn't....

If you have time, have a look at the threads I linked to at bottom of other reply.

[wedgewood]

That is a low reading , and if you have symptoms, would indicate that you need treatment . You haven’t mentioned any symptoms though . Symptoms are more important than blood serum readings . Symptoms must be treated , not blood results .

[Cardiffcity3 in reply to wedgewood]

Tired ; no motivation,feels like tremors mostly in my back

[wedgewood]

Yes , sounds like B12 deficiency. Ask for a print out of your blood results( I can actually get mine on the NHS app ) You are legally entitled to them . You will then see what the ranges are . Mine were actually below range but i was sent on my way . . Found out much later when i had to see a private GP that i had PA i’m now left with irreversible symptom of burning painful feet . My GP would only give me bog standard 3 monthly injections. I’m forced now to self inject to keep well . Weekly . Get cracking and get those results . Then come back here , and let us know .

[2FloorLuka]

Hi! In my opinion, it looks low enough. As suggested above, get a copy of your test and check the reference ranges. If its low, ask to be treated according to the guidelines. Don't leave it behind. The deficiency is progressive and symptoms can get pretty nasty and take a very long time to get over. ((Hugs))

[deniseinmilden]

It definitely looks low.

B12 is extremely safe so you could press them for a trial to see if it helps. (Good luck with that one, but it's worth a try).

Argue that it is unquestionably at the lower end and at that level could be the start of the problem. You can say that the trial would be cheaper and less hassle for all than all the further investigations into what else was causing the problems and at least an unsuccessful trial would rule that out.

However I bet you will get an improvement!

If they then say it's placebo ask them what the problem with that is, if it makes it better for you and gets you out of their surgery? If they then say it's a mental health problem, say "fine - if it is, B12 jabs are a cheap, easy solution for you without the safety issues or side effects of antidepressant drugs for me".

Ask them what their motivation is for not giving it to you?

Questions to them are a lot more powerful in these situations because they have to think how to answer your questions and therefore can't just patter out their preconceived ideas.

[waveylines]

With neurological symptoms like your back they should not delay even if you are technically in range! Its advised to keep B12 levels over 500. Your is woefully low. Point out to your doctor that delaying treatment can cause permanent harm. If necessary put your request in writing and a response withing three weeks plus ask that your letter id put on your medical file. This will make them think!!