New GP suggesting I don't meet criteria for B12 injections

[lesbud1]

I have just moved and my new GP tells me that I do not meet the criteria for b12 injections even though I have had them for over 9yrs every 2 months as I had neuro problems. She said as I did not have intrinsic factor I did not meet the criteria for injections. I had numerous symptoms for many years and I am sure the hospital put me down as a attention seeker as I was in and out many times. I eventually went private as I was disparate that I would never get better if no one believed me. I saw a gastro consultant and he kindly followed me in his nhs outpatients. On one appointment I plucked up the courage to tell him that I was having new symptoms of pins and needles in my hands, feet and face. I nearly didn't mention it in fear that he would think I was mad. Anyway he said have we done your b12 levels to which I said I didn't know but that I eat dairy and chicken but the tests were done. It came back low b12, anaemia and I think my blood cells were enlarged but will have to check that. I had a biopsy taken from my stomach and the consultant said although antibodies were not found he felt I had PA and I was started on b12 injections and folic acid. I also saw a neurologist but by the time I got to see him I was feeling so much better as I had also supplemented my b12 with sublingual as the injections were not enough. The GP then had agreed to 2 monthly injections in view of my neuropathy. the neurologist suggested that I continued taking the b12 sublingual for advised me to stop the b6 that I had been taking and to continue with the injections. I have no idea if this is on my GP notes but I now find myself terrified that I will have my injections stopped and my symptoms which also included my gut stopping and some kind of pseudo epileptic fits which were horrendous. although the hospital did not believe I was experiencing these! I am so worried. I have an appointment tomorrow with my new GP, not the one who told me I didn't meet the criteria as I am not on her books apparently but I am expecting as they are from the same surgery they might have the same views? I have printed off lots of info from PAS, NICE and BMJ but would welcome any advise please.

[fbirder]

Two things to hit her with...

The recommendations from the British Committee on Standards in Haematology - onlinelibrary.wiley.com/doi... Figure 1 shows the treatment flowchart they recommend. It says that, if there is a clinical response to B12 injections then you should be treated as somebody with antibody-negative pernicious anaemia (AbNegPA). It is also discussed on page 500.

But you don't need to have PA or AbNegPA to have proper treatment. You just need a B12 deficiency. The very first entry in the British National Formulary for B12 injections medicinescomplete.com/#/con... says...

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

Adult

1 mg every 2–3 months.

So, if you have a B12 deficiency then you should be getting the injections to prevent you from getting macrocytic anaemia.

[lesbud1 in reply to fbirder]

thank you so much. I am sure you are a godsend to us all on here.

[Nackapan]

Sounds like you have plenty of information to take. Bnf guidelines. The letter from neurologist must be on your notes if you haven't already copy. Or request from hospital where you were seen. Give the date you went as will speed up process. I've tested negative for PA I've been told injections for life. Hope it gets sorted soon

[lesbud1 in reply to Nackapan]

thanks for your support.

[Mannequin18]

Hi, I posted on here about 6weeks ago with similar problems with GP trying to stop my B12 injections. I have fought it by sending strong letters to the practice manager. Giving them loads if information that I gained from this amazing forum. And today I had a letter stating that it is being reinstated. And a letter for the nurse to put it on regular prescription for me. I am so relieved.

Don't give up, fight for your rights. Good luck.

[pollianna]

How sad to have to go through this all over again.

All of this information should theoretically be in the clinic letters this Consultant who saw you wrote to the then GP. If not don't panic!!

Call the patient line of the hospital and ask for the X of his medical secretary.

She could possibly get some of the details from your notes and put that in a clinic letter

[Hanneke12]

Don't despair. I now how you feel: it made me get absolutely hopeless - and paranoid to boot. But paranoia is also a symptom, I learned, which can be used! Trust me, it IS possible to learn to navigate the GP field. Especially with all the information people here provide you with!

[Cherylclaire Forum Support]

Seems to me that the test results, consultants' reports and other information held by the GP is your's : your blood that was tested, your biopsies that were taken. So you are entitled to have access to this information even if this is in order to dispute a GP's decision- especially then.

A reasonable admin charge for photocopying relevant information is acceptable, although I've never been asked for money. I am given copies of results as a matter of courtesy, and always asked, if I have got or want specialists' reports when I see the GP next.

And, as pollianna has pointed out, there is always a Plan B. If the only people who have useful personal information, like "macrocytic (enlarged) red blood cells" are private healthcare organisations, they will have that still.

There are people who have posted here before who have suffered from tremors and fits.

Try a search perhaps ?

Can you take someone with you to your appointment ? It is very difficult to state your case clearly within an allocated 10 minutes, and you might need a witness, someone who can verify your statements, a note-taker or just for moral support. Make it easy for yourself to find relevant info by not taking too many documents and by highlighting certain parts. This is difficult, but not impossible: take heart from the fact that others (including above) have had their injections reinstated.

Best wishes.

[Cherylclaire Forum Support]

lesbud1 - look at this new post: Check List from nano2 - this list includes fits.