GP requests blood tests after injections

[pinkpaddleboarder]

My daughter has asked her GP for B12 injections (I won't always be around to do them) she has been called in for a blood test, however stating NICE guidelines didn't help. She has previously been misdiagnosed with MS and even her neurologist wrote in a letter last summer that nothing abnormal was found despite many tests and that B12 is the obvious and since injections her tinnitus has gone and she has the feeling back in her fingers and toes. Despite all of this over 10 years, the GP still refuses injections. At what point does a GP actually listen, do people give up, change GP's?? were desperate

[Nackapan]

Move on to the next one. B12 is known to benefit CF and cause it. state benefits of the b12 injections.

Teach your daughter how to do them.

Sc is always an option.

[pinkpaddleboarder in reply to Nackapan]

She is so frightened of needles sadly, I do her IM and we tried sc but she actually felt that was worse. One more letter to GP and try to change however the next GP could be just as bad. I've armed her with lots of information

[Narwhal10]

Sorry pinkpaddleboarder.

I am finding it difficult to follow.

Your daughter has been called in for blood tests. (But you administer Hydroxycobalamin/cyanocobalamin i.m.) If they test her blood B12 will be high.

She has been misdiagnosed with MS. Saw a neurologist and what did they write in their letter ?

Yes, she can change GP. PA/B12D is poorly understood. However, if you can see a private GP. Search around for once, or even a zoom appointment with ‘the man in Cambridge’.

Your daughter is responding to injections. Tell her to apply for all her notes in hard copy from the CCG, Trust and GP Surgery. If your daughter has been with same GP 10 years then they are not going to budge. She has a ‘diagnosis’ and seen a neurologist.

Many of us have to move GPs.

Best wishes

[pinkpaddleboarder in reply to Narwhal10]

Yes I jave had to do her injections to keep her well. Her GP refused to give her appointment unless she had a blood test. It is going to be very high indeed! She has no formal diagnosis however had many tests, the only thing that improves her symptoms is B12.

[Narwhal10 in reply to pinkpaddleboarder]

Change GP. When she registers with a new GP, fill in the form in Hard copy. State on :-

Medication

1 mg/ml Hydroxycobalamin i.m. [ frequency ] commenced on [ date ].

Photocopy the form before she hands it in. Thus, it is in writing. Medical Records are legal documents. She is telling the Practice not asking - this is fact.

I do hope both of you are members of PA Society. So, your daughter can hand over their literature to partner.

Invariably Medical Records have lots of errors, typos and mistakes. Keeps me out of mischief. 😉

[pinkpaddleboarder in reply to Narwhal10]

Thank you!

[LadyBothwell]

I would ask the gp what the blood test is for. If it is a general blood test then that’s a good idea to look at iron folate vit d etc. if they say it is to specifically test b12 levels I would say and then put in writing that you do not give consent to a blood test for b12 serum. You are entitled not to consent. Doctors cannot take your blood without consent. Mine still tests my b12 when they do a full blood count but if they ever say anything I just say to refer to the letter I sent them and that they did not have consent to take it to test b12, by breaching that their action of taking my blood was abuse so I won’t discuss b12 levels with them and that as I have a diagnosis of PA my treatment must continue. They don’t like it and get a bit rude with me but they know I’m right. It’s not clear from your post if your daughter has a diagnosis of PA or other cause of b12 deficiency from any medical professional and if you are only just asking without a diagnosis because you want a back up to you. If that’s the case I don’t think you will ever get any gp to do them and you will need to get them injected privately or have someone else learn to help.

[pinkpaddleboarder in reply to LadyBothwell]

Thank you. No formal diagnosis just ruled out chrons and MS, no reason for B12 deficiency, but we know that it works as she has the feeling back on her hands and feet and her neurosis agreed and wrote to GP that that is the solution

[LadyBothwell in reply to pinkpaddleboarder]

If it works then keep going, but in the U.K. at present most GP will not help you sadly. Maybe after the new NICE guidelines due out 6 March there will be something in there to help you argue your case with the GP