Reference for not testing once b12 injections started? Threatening to stop injections due to high b12 levels in blood test.

[TFH1]

Hiya I have a call booked with the practice nurse who wants to stop my b12 injections as a recent blood test shows levels that are 'too high'. Can anyone point me to NICE guidelines or smilar that state that once b12 injections have commenced, b12 levels should not be checked? I am diagnosed with pernicious anaemia (have tested positive for intrinsic factor antibodies). I have had a look, but can't find the reference and due to covid, currently have a very low income so hoping not to have to pay to join PAS. Many Thanks.

[fbirder]

The guidelines from the British Committee on Standards in Haematology (aka the Biggest Brains in British Blood) are here - onlinelibrary.wiley.com/doi...

On page 501 you'll find this -

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required

[TFH1 in reply to fbirder]

Thanks fbirder. I have my injections monthly as I was finding fatigue was setting in at that time and GP was happy to up the dose. Not 100% sure why the practice nurse has got involved, but it would be good to calm her concern with some solid facts about toxicity, b12 tests after injections have commenced and treatment protocol for PA...

[fbirder in reply to TFH1]

I'm amazed at how many nurses decide they know best when it comes to treatment recommended by a doctor. I had to get one nurse to get a copy of the BNF out and read past the first paragraph before she would let me have more than six loading doses. Even though the doc had said I should have them for three weeks.

[Gambit62 Administrator in reply to TFH1]

on toxicity - if it comes up - get them to look up the treatment for cyanide poisoning - 5g hydroxocobalamin (5000x an injection) administered intravenously with a second dose 30 minutes later if required. It is the treatment of choice because of lack of toxicity. The risk factor is from hypertension due to the amount of fluid that needs to be used.

[Hidden]

I was told I needed a blood test by one doctor, told by another that I didn’t because they’d expect your levels to be high after a few jabs. I demanded a callback from the nurse practitioner who explained that because I have a P.A. diagnosis I CAN get a blood test but don’t have to, but that I will definitely need b12 jabs for life. And I will need them more frequently than every 3 months if I have neuro issues, which I do. Don’t let them stop them, if you’re diagnosed P.A. The whole point is you need them BECAUSE your body can’t absorb it.

[TFH1 in reply to Hidden]

Thanks for your reply. Do you know whether the fact your body can't absorb it, mean the levels in your blood appear higher?

[Hidden in reply to TFH1]

As I understand it (and I’m newly diagnosed myself but read up on it a lot) because you’re getting the jabs they’ll expect your levels to rise if they did a blood test. That’s the only way they will be high enough. I was told I didn’t need a blood test because of that reason, I’ve been getting jabs so they’d expect my levels to have normalised.

[Sleepybunny]

Hi,

Have you rung the PAS office to see if there is any possibility of paying in instalments or other arrangements?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS have an article "Testing B12 during treatment" which non members can access.

pernicious-anaemia-society....

Also "Summary of the BSH Guidelines on Vitamin B12 and Folate" can be accessed by non members.

pernicious-anaemia-society....

B12 article from Mayo Clinic (US article)

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

Useful English articles on Dutch B12 website below.

"Testing B12 during treatment"

stichtingb12tekort.nl/weten...

Something in next document about it being unnecessary to test levels once treatment has started but can't remember which page.

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives may be worth talking to if unable to get recommended level of treatment.

Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, more B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[TFH1 in reply to Sleepybunny]

Huge thanks for all that info, will have a good look through it now ready for Monday.

[Sleepybunny in reply to TFH1]

PAS contact details.

pernicious-anaemia-society....

There is an online contact form as well as a general number and a members helpline number.

[Cherylclaire Forum Support]

My GP started me on reloading injections (2 a week) after diagnosing functional B12 deficiency. The nurses were a bit freaked, to put it mildly ! One of them confessed that she'd Googled "B12 and toxicity" afraid she was going to kill me - before finding, as Gambit has said in response to you, that what emerges is B12's safe use at high levels as an anti-toxin ! No problems after that, at least not with that nurse.

My B12 was tested initially and found to be low, then a couple of months later, after injections started, it was over 10x the original reading (over 2000ng/L ) -checked again after reloading started - still the same. That was in 2016. She has never checked it since, as she knows it will be high and that's what she was hoping for.

Folate, ferritin, vitamin D and thyroid are all checked regularly as all of them went a bit wonky for a couple of years. Now stabilised.

Very best of luck on Monday.