Hi
Could anyone post a link to the info that should be given to GP's who are re testing b12 levels and stopping injections after commencement of treatment in patients who have already been diagnosed some time ago
Locum has taken over and stopped injections as levels fall into normal ( not surprising!)
Thanks
These are the NICE guidelines. When opened click on "Scenario Management" and scroll down
google.co.uk/url?sa=t&rct=j...
The BNF Guidelines are:
Treatment of cobalamin deficiency
Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment
How much of this should I print for him? Don't want to come over as telling him his job, but want to let him know - I am a little more aware of the consequences of PA
I cannot see from your previous posts whether you have actually been diagnosed with P.A.
You refer to "patients who have already been diagnosed some time ago" but was that for a B12 deficiency or Pernicious Anaemia?
If you definitely have a diagnosis for P.A. then no-one can stop your injections.
If you B12 Deficient and are still having neurological symptoms then your injections should continue or if you do not have an absorption problem be prescribed an alternative supplement.
As to what to print if you click on the "N.I.C.E Guidelines" link in my previous reply, copy the bit I've produced in italics below so that you "know all the options" for when you see your doctor as they tell him how treatment should be given.
Treatment for B12 deficiency
How should I treat a person with vitamin B12 deficiency anaemia?
For people with neurological involvement:
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.
For people with no neurological involvement:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks.
Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months.
Maintenance dose (where vitamin B12 deficiency is thought to be diet related): advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection. The injection regimen may be preferred in the elderly (who are more likely to have malabsorption), and vegans (as currently available brands of oral cyanocobalamin may not be suitable for vegans).
In vegans, this treatment may need to be life-long, whereas in other people with dietary deficiency replacement treatment can be stopped once the vitamin B12 levels have been corrected and the diet has improved.
Advise people to eat foods rich in vitamin B12. Foods which have been fortified with vitamin B12 (for example some soy products, and some breakfast cereals and breads) are good alternative sources to meat, eggs, and dairy products.
there is also this summary of BCSH guidelines prepared by the PAS though you will need to be a member of the PAS to access it - last point is the relevant one
pernicious-anaemia-society....
and you might suggest that he takes a look at this site which has a lot of materials aimed particularly at medical professionals
pernicious-anaemia-society....
this page tells you how to join the PAS if you aren't already a member
pernicious-anaemia-society....
Thank you so much for replying . It is a bit overwhelming when you are just starting to learn about all this, but I am so thankful I joined! I will persevere with wading my way through.
Hi Aro123. Another numpty GP 😖.
Here's some. Ore information that might help. Post again if you need more help....😄
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t
👍
Overload - but I'll print my way through and read 
Thank you for the help!
Thank you, Foggyme
Hi,
If you're in UK,
I'd suggest reading fbirder 's summary of mainly Uk b12 documents. Link to his summary in third pinned post. Lots of helpful quotes....
Martyn Hooper's blog and PAS website
There are stories on both of these about people who have had injections stopped and how PAS has helped.
Easier i think for PAS to help people with a confirmed diagnosis of PA. have you been diagnosed with PA?
pernicious-anaemia-society....
martynhooper.com/2016/04/24...
martynhooper.com/2016/09/23...
I gave a copy of Martyn Hooper's latest book to Gps "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
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