NHS link about Cyanocobalamin

[Sleepybunny]

Just wondered what you thought about this NHS link about cyanocobalamin?

nhs.uk/medicines/cyanocobal...

[helvella]

Seems a touch over-cautious and potentially anxiety-inducing to say:

Contact 111 for advice now if:

you have taken more than two 1,000 microgram tablets of cyanocobalamin

[Sleepybunny in reply to helvella]

I agree that it seems a bit alarmist.

[Nackapan in reply to Sleepybunny]

Akso 'key facts ' inaccurate Stopping injections after loading

Measuring levels ect

[Sammyo23 in reply to Sleepybunny]

I wonder what they'd say to you if you called them up?

"You'll be okay, but I'm sorry to say that your urine will be a different color for a while as your body eliminates the excess vitamins. I feel so bad to have to give you this news."

[helvella]

By the way, assuming you are not exactly convinced by the information there, may I suggest that you report it (there are contact details)?

It takes time, and the attitude isn't always good, but things often do change if reported - eventually.

[clivealive Forum Support]

I am fortunate (at the moment) that after 49 years I still get my cyano injections prescribed by my GP and my wife is giving me the jabs and has been for the past 14 months.

They seem to be working

[Midnight_Voice]

It’s nice that we get a mention under ‘Useful Resources’. Though I wonder if the NHS realise that they are directing people to this hotbed of, er, alternative treatment recommendations? 😛

[doityourself]

I think this is terrible, very misleading in places. It does not clearly differentiate between treatment for those with Pernicious Amemia and diet intake issues affecting b12 deficiency. It seems like a big step backwards and certainly doesn't support better understanding of the needs of those with PA. I would have hoped for better.

[Cherylclaire Forum Support]

Under "Will My Dose Go Up or Down?" : the GP "might ask about symptoms like tiredness or lack of energy"... but in the end, would increase/decrease based on levels of B12 in blood.

If this had only ever been about tiredness, I doubt any of us would have bothered going to the GP in the first place. There appear to be far more symptoms attached to taking too much cyanocobalamin.

Since one of these, warranting a 111 call apparently, is diarrhoea, I would be having to call them every day - as daily diarrhoea has been a symptom of my B12 deficiency since 2015. It stops when I don't eat, so only 3 times: when I had Covid, the day after my first vaccine, and the day after my second.

The other symptoms that caused me to see a GP, right back at the beginning in 2015, were lower back and l/h hip/groin pain/pressure -and exhaustion. Tiredness didn't even begin to explain it.

Encouraging GPs to test serum B12 levels after treatment has begun, and responding by either increasing or decreasing B12 treatment accordingly, is going against previous medical guidance.

Any mention of how many times a patient might have to deteriorate to below-range before permanent B12 treatment without testing is considered ?