May suggest early deficiency or reduced oral intake.
Please correlate to theclinical picture and the FBC and treat or givedietary advice as clinically appropriate.
Repeatfolate testing is indicated if this result doesnot correlate with clinical picture or FBC.;
Below low reference limit
I went for my 3 monthly B12 injection this week. As soon as it was given to me by the nurse she said we need to test your B12 levels. I might as well do it for you now. She took the blood sample and today I have had 2 texts from my Dr surgery.
1 my folate level is very low so I need a prescription for this.
2nd text. Make an appointment to talk to my GP as I am receiving B12 injections and my levels are above the reference range and I am on B12 injections.
I did phone and managed to get a phone appointment for 12th April. My query is as I have pernicious anaemia I have been told I need these injections for life. Would the high reading be due to having the injection and immediately having a blood test taken? Would this be a false reading?
I had been requesting more frequent injections or to be allowed to self inject. Now I am wondering would the high levels be a sign of anything else?
many thanks for any advice.
Written by
Milsean
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Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
High serum B12 without supplementing B12 or without having B12 injections can be a sign of a serious health condition. You have been having regular B12 injections so your serum b12 would be expected to be high.
Stopping B12 injections could put someone with PA/B12 deficiency at increased risk of developing permanent neurological damage.
PAS article about SACD, sub acute combined degeneration of the spinal cord
My feeling is that it's best to put queries about treatment/diagnosis into a short, polite letter to GP (and maybe practice manager as well) as harder to ignore. Letters to GP should get filed with a patient's records so are a record that an issue has been raised.
Always keep a copy for yourself of any letters, maybe screenshots of messages as may be useful if there is a need for a formal complaint in future.
See letter writing link in one of my replies.
Some GPs find it hard to cope with assertive patients so be prepared for GP/patient relationship to come under strain.
Consider asking to record an appointment.
GPs are unlikely to be keen but if you have issues that affect your ability to understand/follow what is said eg memory/fatigue/concentration problems then you would have a good case to be allowed to on disability grounds.
The nurse is incompetent. It makes no sense to test your B12 levels. It is normal to be high when you are getting injections. Why test when the test result is not telling you anything relevant?
Hi Hockey_Player, I think the reason the nurse took my B12 blood test was because her computer told her I needed to have one done! We have been with this surgery about 2 years. Our previous GP retired.
Everything seems to be by text messages. I received my test results by text. When my medication needs to be checked I have to do a weeks BP readings twice daily and reply by text with the readings. There are so many doctors (including locums) in the practice I have only had 1 F2F with a locum and a couple of phone appointments.
Unfortunately I did resort to Dr Google ( never a good idea when you have no medical training!) I do have a family history of cancer and have had some worrying results in my search! I will have to wait now till 12th April for my phone appointment!
My B12 has been tested a couple of times since I was started on B12 injections for B12 deficiency - but each time for a really good reason.
Firstly, to check what was happening to my B12 as I was not responding to treatment: it had gone from under 200 ng/L to over 2000ng/L - so acting as expected.
Secondly, what was happening to my B12 after two months: it had dropped to 860 ng/L - still above range; probably to be expected (?)
Thirdly, alongside MMA test to discover why i was still deteriorating after injections . This showed that my B12 was over measurable amount (over 2000ng/L)- as expected - but that my MMA was raised.
MMA should drop to within normal range, certainly by the time loading dose completed. Mine didn't - which indicates a functional problem with the link-up, which prevents/restricts progression to cell/tissue level. Good to know.
After that, my diagnosis was "functional B12 deficiency", for which I got two injections a week. At this point, my GP stopped testing my B12. "No point" she said. How true.
I now self inject at this frequency and have done since 2017.
Four years later, it was tested again (can't remember why) - and it was over 2000 ng/L.
That is clearly where I need it to be.
A high B12 level,without having had injections, needs investigating.
A high B12 level, after having had injections, is just measuring what has been injected. Like my GP said - no point.
Just to update after my GP phone appointment. They had had a discussion within the practice about my B12 results being over 2,000. It appears there was no record on my medical record of an IFA result. I was diagnosed in Ireland over 35 years ago with pernicious anemia. I have no idea if this has been tested since I came to UK over 20 years ago. My late mother had pernicious anemia. Out of her 4 daughters we were all diagnosed with it. I have 4 nieces also with it. There are also 5 family members who have under active thyroid including my own daughter.
The GP I spoke with explained they were following the NICE guidelines which says with my level of B12 over 2,000 they should stop injections for 3 to 6 months. I told her about this website and also the information for health professionals available. She did ask me to send her the link as she would interested in checking out the information on this website. This is very promising that she is interested in getting further information.
I have to have an IFA blood test on Monday to confirm I have P.A. I have to have further blood tests before my next B12 would be due by end May to check my B12 levels. I had been asking the nurses if I could have more regular B12 injections as I do feel the 3 monthly injections are not sufficient. I even asked if I could self inject. Now I am in a panic as I have so many health issues, acrophobia , PTSD, back problems, high BP, light headed, breathlessness.
I know I have a family history of PA but what if the GP decides I no longer have it? I know it is not something you grow out of. I am now 65. No female family member lived beyond 69yrs. My mother was 69 she had Alzheimer’s and had a stroke. I lost 2 sisters to cancer, one was 69yr and the other 56yr. I am now working myself up worrying if my injections are stopped.
I am not sure if I added my reply correctly. Apologies. I am now adding it in reply to myself. I hope this is correct.
Just to update after my GP phone appointment. They had had a discussion within the practice about my B12 results being over 2,000. It appears there was no record on my medical record of an IFA result. I was diagnosed in Ireland over 35 years ago with pernicious anemia. I have no idea if this has been tested since I came to UK over 20 years ago. My late mother had pernicious anemia. Out of her 4 daughters we were all diagnosed with it. I have 4 nieces also with it. There are also 5 family members who have under active thyroid including my own daughter. The GP I spoke with explained they were following the NICE guidelines which says with my level of B12 over 2,000 they should stop injections for 3 to 6 months. I told her about this website and also the information for health professionals available. She did ask me to send her the link as she would interested in checking out the information on this website. This is very promising that she is interested in getting further information.I have to have an IFA blood test on Monday to confirm I have P.A. I have to have further blood tests before my next B12 would be due by end May to check my B12 levels. I had been asking the nurses if I could have more regular B12 injections as I do feel the 3 monthly injections are not sufficient. I even asked if I could self inject. Now I am in a panic as I have so many health issues, acrophobia , PTSD, back problems, high BP, light headed, breathlessness.I know I have a family history of PA but what if the GP decides I no longer have it? I know it is not something you grow out of. I am now 65. No female family member lived beyond 69yrs. My mother was 69 she had Alzheimer’s and had a stroke. I lost 2 sisters to cancer, one was 69yr and the other 56yr. I am now working myself up worrying if my injections are stopped. Thank you for reading
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