Can GP stop injections when diagnosed with PA?

[Jc78]

Diagnosed with PA, IF antibody. High B12 levels on blood tests mean GP is not allowing injections. I’m exhausted have been without since May. Have been told I may or may not get in dec if my b12 blood test level lowers. I don’t know what to do, can I disagree with gp’s decision on this?

[Jc78]

I should say I was diagnosed 4 years ago, until recent my injections were 2/3 months apart. Now I have to have a blood test every few months, unless my b12 levels drop I’m not allowed a b12 injection despite how I feel

[wedgewood in reply to Jc78]

Your doctor is totally out of order . His/her ignorance is appalling! PA patients need injections for lLIFE . There is no need for the testing of B12 . It’s a waste of time once injections have begun .

You can print out the official medical documents concerning this and take them to your doctor ! . You might find them in “Printed Posts “column on the right hand side of this site . Otherwise , someone will give you the links that you need . Keep us informed as to how you get on . Your injections MUST BE REINSTATED ASAP

.

[grigmay57 in reply to wedgewood]

the injections are for life can cause serious consequences if it’s nit administered correctly i think you need to go back

[Gambit62 Administrator]

are you in the UK - if so then your GP is not following best practice as per NICE and BCSH guidelines.

BCSH guidelines clearly state that in the case of PA injections are for life and there is no need for further testing unless there is a reason to think that you are not complying with treatment.

Unfortunately GPs tend to be extremely unaware of the limitations of serum B12 - particularly post loading shots. It is an okay test for diagnosing the existence of an absorption problem but, because it is only telling you what is happening in the blood, isn't a good test for managing a B12 absorption problem that is being treated with injections.

Many people seem to react to B12 injections and the high serum B12 that follows in a way that makes the process that transfers B12 from blood to cells much less efficient - meaning that they actually need much higher levels post loading shots - exact reason not understood. Another consequence of this is that the process for removing excess B12 from your blood also seems to be less efficient - leaving you with a functional B12 deficiency.

This article might be of interest to your GP

bloodjournal.org/content/bl...

[fbirder]

Print this out - onlinelibrary.wiley.com/doi...

Highlight the sections on page 501 that say...

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.

and

Patients suspected of having pernicious anaemia should be tested for IFAB. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

Show it to the doctor and ask why (s)he is going against the guidelines published by the British Committee on Standards in Haematology.

[wedgewood]

If you get no joy from your GP, you could consider self injecting the regularity of B12 injections that will keep your symptoms at bay . It’s simple and cheap . Many of us on this forum are forced to do this to keep well. You can get all the information you need here. Very best wishes .

[Jc78]

Thank you all, I was actually diagnosed with PA after an antibody test ordered by a neurologist. I did not know nerve damage meant you should get more regular injections. Stupid thing is the reason why my injections keep getting stopped is due to blood tests, the reason for the blood tests is me being exhausted and unable to get out out bed. GP is veering towards CFS. I’ve only had one B12 injection this year though, and I felt fine for the next month. I’ll try and see a different GP, although not sure how it works when she’s the senior GP in my surgery