Covid and GP difficulties

[Wellington1]

Hi, not sure what to do. I have had problems getting my B12 due to Covid-19 and, like others on this forum, have had to fight for it. I got my local health board involved and thought it was sorted - until my next injection was due! My doctor had to approve it and they just kept saying I was on a list and they would come back to me. I threatened the health board again and I got an appointment! The day after, however, I recieved another phone call from them asking me to make an appointment to have bloods to check my enzyme levels in relation to B12. I panicked and refused to make the appointment. Are they trying to measure my B12 levels and then say I don't need injections? I have also recently started self injecting because of extended injection times and symptoms. My levels will probably be high. Am I being paranoid? Can I refuse the blood test or should I just go alone with self injecting? I am so fed up having to battle. I have been having injections at the doctors for 20 years and was told I would need them for life. Why are the doctors being so difficult about B12 injections - is there something going on behind the scenes?

[Wellington1]

Meant to say antibody test not enzyme!

[fbirder]

Write to them saying that the Intrinsic Factor antibody test they want to carry out is pointless. Here is a copy of an answer I wrote to somebody else in a similar sutuation.

Write to them. Include a copy of this - onlinelibrary.wiley.com/doi...

Those are the recommendations from the British Committee on Standards in Haematology. the biggest brains in British blood.

Highlight the bits on Page 500 about AbNegPA, the second recommendation on page 501 about treatment of AbNegPA, and the flowchart in Figure 1. Ask why your treatment is not being carried out according to those expert recommendations. Ask them why they are not 'following the science'.

[Wellington1 in reply to fbirder]

Thank you you response it is most helpful. If they insist on the blood test do I tell the Dr/nurse that I am self injecting weekly? I am now getting really anxious about all this and its going round and round in my head.

[fbirder in reply to Wellington1]

It's always a difficult decision to tel or not to tell.

Personally, I would tell then that you became so desperate that you did order some B12 from Germany and injected yourself.

[Wellington1 in reply to fbirder]

Yes I think you are right, I will have to come clean. So glad for the support on here. Thank you.

[Nackapan]

You shouldnt be put in this terrible position. It's very upsetting when 'they go against their word'

Injections for life.

I also was told that but have had many battles . Its exhausting and difficult.

To the point you do get paranoid or question what you are fighting for. Its mind games we do not need .

With most conditions you are told what to take and do.

My husband has type one diabetes and he says it's like him having a blood sugar test and it's normal so let's stop your insulin????

So stay firm .

Follow the advice given on last reply by fbirder.

They also do not consider once on injections you do need higher levels.

I despair as it will cost theNHS so much more with all the admin. Involved . Meetings . Unnecessary blood tests.

Emotional upset to you that could make you more ill needing more appointments ect.

Hope it goes well.

Thank goodness you have your own supplies .