Blood tests after loading injections

[Vonnie-72]

As I have been suffering with neurological symptoms and recently diagnosed last month I’ve had my loading injections and asked the doctor if I could have more regular injections because of my nerve damage and she said no as we need to test your b12 after your next injection to see how it’s going. Is she right?

[wedgewood]

No ,she’s not . Once you have started treatment for your diagnosed P.A. , it is a waste of time to test your B12 levels . They must always be high. If she had read the guide lines ,she would know that . You need your B12 injections at a regularity that keeps any B12 deficiency symptoms at bay . If you have symptoms, ( you mention nerve damage ) you should be having injections every other day , till no improvement is attained -( but certainly for 3 weeks ) Also in the guide lines . Best to put this in a letter to your doctor and the practise manager - for starters . But certainly put this as diplomatically as possible . We definitely know that many doctors do not refer to the guide-lines for treatment of P,A. Best Wishes.

[Vonnie-72 in reply to wedgewood]

Thanks for your advice.... I will certainly try not holding out much hope though. It’s a mission to get anything from them it was the same for my thyroid 11 years ago after the 4th virus and feeling terrible I lost it and said I’m sick of having viruses, so they did some blood tests which showed my thyroid level was dangerously low. I even saw the orthopaedic consultant last week and told him about my pernicious anaemia and whether it could be that and he said the same no no it won’t be that...so now I’m having my 2nd nerve conduction study done. It feels like a hopeless battle all the time.

[waveylines in reply to Vonnie-72]

I feel for you Vonnie. Mine insisted on a neurologists opinion before agreeing to shots. As there was a six month waiting time I started self injecting alternate days, then daily and told GP, later on neurologist when I saw him.......neurologist backed me after "some" discussion. Its hard work I agree but don't let them off the hook. I also went through the same very long windy battle over my hypothyroidism. Its outrageous you have to fight (politely) so hard and long to get reasonable medical care/treatment. The ten minute appointment window doesnt help!!

[Gambit62 Administrator]

Point out to the GP that the protocol where there is neurological involvement is more aggressive and the BCSH guildelines suggest that loading shots should continue until there is no further improvement followed by maintenance does every other month (though that isn't necessarily enough).Unfortunately serum B12 post loading shots is an extremely difficult, if not impossible test to interpret because the conditions that apply in setting the normal range have been changed completely. Many of us find that we need to maintain our B12 levels well above normal range and in some cases well above measurable range to function post loading shots - nobody knows why and there isn't much research going on - there is some but it is very limited.

Link to the BCSH guidelines

onlinelibrary.wiley.com/doi...

They predate a change to the BNF a few years ago which made maintenance 8-12 weeks for deficiency without neurological involvement.

[Vonnie-72]

Thanks for the link.