I was diagnosed with rheumatoid arthritis in 2007. In 2010 I suffered a numb tongue and extreme fatigue - my b12 level was 117. I tested positive for intrinsic factor antibody and was told I had pernicious anaemia and would be on b12 injections for life. In 2013 I relocated to the seaside so registered with a new GP. All has been well until three weeks ago when my tongue went extremely numb and GP rechecked my B12 level and it was 666. He is now stopping my injections! I have challenged him but he is not backing down - he says I have b12 coming out of my ears!!
The sun is beating me to bed quite often now it's days are longer!! 😁
Please read through other replies on this subject, especially those from Sleepybunny and Foggyme by double clicking on their names and looking under the heading "replies". If you don't get anywhere then do like so many of us do and self inject. It's a lot easier than the thought of it and it gives you your life back! It's cheaper than driving to the Drs too! For more information on SI, please see Wedgewood's replies, etc.
I agree with Clivealive. Contact the Pernicious Anaemia society. Having an advocacy body interceding on your behalf can really help. It may also help correct some PA misconceptions on your GP's part that could affect other patients treatment in the future.
Ask your doctor is he checks the blood sugar of his diabetic patients - then tells them "It's normal now. You can stop your insulin".
Print this out - onlinelibrary.wiley.com/doi... - it's from the BCSH, the biggest brains in British blood. Highlight the bit where it says
"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
"Recommendations
1 Patients suspected of having pernicious anaemia should be tested for IFAB. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).
2 Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response"
In other words - if you have IF antibodies you should be treated for life. If you don't have IF antibodies, but you show an improvement when given injections then you should be treated for life. With no further testing.
Send the highlighted document, with a covering letter saying that you expect your injections to be reinstated ASAP. A letter goes into your file, better than relying on the doc to put details of a conversation into the file.
Hi all. I have PA. And have had injections for just over 2 years. I recently had a blood test because I am getting light headed. I had an injection one month ago, and because of the test results, doctor has said that I should wait a further 3 months before my next I ejection, making 4 months before I receive my next essential shot.
Why do they take the easy option, instead of looking for the real reason I am feeling light headed.
My life has been so much better since having these I objections. I wish I hadn't gone to see him now, as they don't understand these autoimmune conditions.
Not sure about "coming out of your ears " Hidden - your regular injections are keeping you safely within the range. Ranges differ depending on where you are and different units of measurement seem to be used still (yes, I know !) but 200-800ng/L seems to be around the "norm".
Because I self-inject every other day, mine are over 2000 ng/L, and happy with that and improving- even though still symptomatic every day, less so than before, when I was on an NHS frequency that was not helping at all and felt like I was getting worse every time I plummeted. My GP knows, has seen improvements and does not test my serum levels at all, but checks folate and ferritin because these CAN cause problems if over as well (as under) but can drop if not well supplemented, whatever I eat.
I think clivealive is right- your GP does not understand that withdrawing these injections will have consequences for you. "First do no harm": ignorance is no excuse.
I would also suggest joining the Pernicious Anaemia Society and getting support from them- fighting this alone will be very difficult and draining for you.
Hi Hellsbells, sorry to hear this, I had the same problem and was tearing my hair out. First of all your GP does not have the right to stop your injection, regardless what your b12 levels are, especially if you have been diagnosed with PERNICIOUS ANEMIA.
What you must do straight away is join the Pernicious anemia society, you have to pay a small fee to join.
The PA society thought my case and got in touch with my doctors. My doctors then reinstating my injections back. I am now back on every 10 weeks.
Once diagnosed with PERNICIOUS ANEMIA it is for life, and therefore your injections are life long.
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