In Nov 18 I presented to my GP, anxiety, extreme tiredness, pins and needles in hands, extremely cold, ibs, headaches, brain fog. My blood tests revealed
B12 levels were 149 ng/l
Folate 2.7 ug/l
Vitamin D 43
My GP eventually agreed to a booster course of injections(5) the last one being on the 10th December and I was prescribed with 5mg folic daily til Jan. I have previously been tested for coeliac diseases but tested negative. I mentioned the instrinic factor test and was sent for this after the loading doses. This proved negative.
I have continuing symptoms and had a recent blood test on 23rd Jan 19 (some 6 weeks after the last loading dose) see above photo for results.
B12 levels were 511ng/l increased from previous test
Folate 6.6 ug/l increased from previous test
Vitamin D 39 Decreased from previous test
I have been prescribed Vitamin D tablets.
In relation to the B12 I have been told that as they cannot say whether it is a malabsorption (because of the neg result from instrinic factor) or diet related problem they will not continue with follow up injections and suggested I take a supermarket value range vitamin.
When I look at my B12 although it is now in range I would have expected it to be much higher as I had the loading doses. Do I need to pursue this further or do I assume I no longer have a B12 problem.
I was hoping to continue on the injections as I still have pins and needles in my hands and severe brain fog. The doctor as above has reaffirmed that I won't be receiving the B12 injections. What's the best B12 supplements I can get
Looking for advice many thabks
Many thanks
Written by
GJOW
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A negative IF test doesn’t rule out PA . Your initial result of 149 was very low , pluss your nurological symptoms suggest an absorption problem . b12 tablets , sprays etc will not help you as you can’t absorb b12 therefore you need alternative day injections until no futher improvement as per nice guidelines . If your GP refuses to follow the guidelines you could write a letter of complaint to the practice manager .self injecting is what most have to do as many GP s don’t read the guidelines fully , you could print out the BNF guidelines and highlight the new treatment regime . Please don’t take oral supplements as they will skew results , although they shouldn’t retest after injections . Good luck GJOW
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines, does not mention recent change to BNF.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I cried when I read this book; it was like reading about myself.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Antibody Negative PA
Intrinsic factor Antibody test is not always reliable. It is still possible to have PA even if IFA result is negative. Your GP may not be aware that it is possible to have Antibody Negative PA. PAS should be able to pass on info about Antibody Negative PA. See flowchart link in UK documents list.
If you think PA or Antibody Negative PA is possible, probably worth joining and speaking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA.
Lots of useful B12 info in above link. I keep copies of any letters I write to GPs. I keep them brief and polite.
In UK, my understanding is that letters to GP are supposed to be filed with a patient's medical records. In my opinion, letters are less likely to be ignored than things said in a face to face appointment.
"been tested for coeliac diseases but tested negative."
Coeliac disease (UK guidelines)
Did you have both recommended tests? UK GPs sometimes only do one test.
1) tTG IgA
2) Total IgA
tTG IgA test checks for a particular antibody to gluten.
Total IgA test checks which patients have IgA deficiency.
Patients with IgA deficiency cannot make the antibodies to gluten that tTG IgA test looks for, even if they have Coeliac disease so they have to have different tests for Coeliac disease.
It's possible that a negative test result in tTG IgA test is due to IgA deficiency. If GP only did tTG IgA test then I don't see how they can be confident you do not have Coeliac disease.
Did GP explain that you needed to eat plenty of gluten in more than one meal a day, for several weeks before Coeliac tests?
A negative result in tTG IgA test could also be due to not eating enough gluten over weeks prior to test. Eating plenty of gluten helps to ensure body produces a high enough level of antibodies for test to pick them up.
I suspect you are in a part of UK where the local guidelines for B12 deficiency have not been updated. Might be worth trying to get hold of local guidelines for your area and comparing them with national guidelines eg BNF, BSH Cobalamin and Folate guidelines, NICE CKS links above.
Track down local guidelines by...
1) Internet search
2) Search on local area NHS website
3) Ask practice manager for copy of B12 guidelines used by practice (this might irritate them).
4) Ask MP for help.
Local MPs may be interested in hearing from patients who are not getting recommended treatment.
Some UK GPs find it difficult to cope with assertive patients. Be prepared for GP/Patient relationship deteriorating. Pressure was put on me to leave one practice.
I also think if GP/patient relationship is awkward it is worth taking a supportive person to appointments (even better if they have read about B12 deficiency). It is my impression that GPs are sometimes kinder if a witness is present.
Thank so much for taking the time to respond and for the for the wealth of advice and reading material. This will help to educate me and my GP!! (hopefully) it seems that many are facing this uphill struggle regarding treatment for B12.
Just to let you know I've added a few more details to my original post on your thread.
There's more B12 info in pinned posts on this forum as well.
Best piece of advice I ever got was to always get copies of all my blood test results. I learnt to do this after being told everything was fine and then finding abnormal and borderline results when I got copies.
Some on forum get a complete set of medical records.
Help for GPs
1) PAS website has section for health professionals. They can join PAS for free.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Supplements after injections guidance please
B12 issues
Advice on blood results please
Intrinsic factor blood test results...
