Back end of last year i had an endoscopy to check up on my Coeliac disease. There was some biopsies taken and initially it appeared to be atrophic gastritis which led me to looking into PA. I ordered some private tests and found some historical tests from my GP. All are below. From the tests it does appear that i am B12 deficient and according to the NICE guidelines i should be having B12 IM. My GP is not having any of it and has prescribed me Cyanocobalamin B12 tablets 150mcg a day and 5mg folate. He has told me i am not B12 deficient as my serum is in the normal range. Symptom wise i cannot really say that I suffer from anything. I do have depression / anxiety which I'm on medication for but this has something i have suffered with for many years. I get pin and needles in my hands but only when i am holding the car steering wheel.
I emailed Dr Klein who believes i am definitely B12 deficient and would get me on B12 injections but i am hesitant due to lack of symptoms and I'd rather my GP prescribed me injections just so that its logged on my record as I do have to see a hematologist due to my hemochromatosis.
My plan was to take the oral B12 then test my active B12 again then if it was still low approach my GP and see if then he would get me on injections as there would clearly be an absorbtion problem which he did mention so he is aware of the possibility. However, i am thinking that any test that i have will now be unreliable as i have started supplementing. Any advice please?
Serum B12
476ng/L – 22/05/2023
225ng/L – 18/12/2024
429ng/L – 15/01/2025
Folate
4.1 ug/L – 22/05/2023
1.6 ug/L – 18/12/2024
24 ug/L – 15/01/2025
Active B12
58 pmol/L – 08/01/2025
56.8 pmol/L – 14/03/2025
Other related tests
IFAB and Parietal cell negative
Polycythaemia Vera negative via biopsy
MMA - 54.0 ug/L – 08/01/2025
Homocysteine 7.4 umol/L – 17/02/2025
MCV – 99fl (83-101)
MCH – 33.6 (27 – 32)
Biopsy via Endoscopy - Reactive gastritis
Classical Ehlers Danlos.
Gilbert Syndrome.
Hemochromatosis
Coeliac disease.
Written by
bflare
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I had been supplementing with oral B12, as part of a B complex formula, for some years (I was diagnosed with ME/CFS fifteen years ago).However, eighteen months ago I began to develop a host of symptoms, many neuropathic, all of them consistent with B12 deficiency. I had I asked for a therapeutic trial of injections but my surgery refused to do anything about my really quite serious symptoms, although current guidance is to treat proactively if neuropathy presents itself. I continued to take oral supplements in the hope that I would absorb a small amount passively, and added in sub-lingual tablets and a spray. When my GP finally had bloods done my B12 was reading at 2,000 - although clearly I wasn't absorbing it, and was continuing to deteriorate; my folate and vitamin D were both low. When I pressed him, he said he would consult with the hospital. After more time wasted, they finally came back with the response that 'PA' was a gastro issue, not haematology, and that my levels showed that I was super-saturated and could be doing myself harm - that isn't true.
By then I was very worried that the damage would become permanent due to the delay. I decided to contact the Cambridge doctor (I think it probably isn't protocol to recommend - or criticise - doctors by name) and I am now self-injecting. Prior to my appointment I had a homocysteine test done privately (there are labs that will do it privately, but many don't because it has to be processed while it is really fresh - just google) and, when I showed it to the doctor he said that was very clear evidence of my deficiency, at 14.1.
Autonomy is therapeutic; I always feel better having control over how I live my life, and I'm glad I did this.
All this is a roundabout way of saying 'do not supplement your levels in advance of a test, or it will be useless. It takes several months to return to a pre-supplemented level'.
I've read that EDS can come with gut issues which in turn might affect absorption of B12 and other nutrients.
MCV – 99fl (83-101)
MCH – 33.6 (27 – 32)
Your MCV is close to the top of the normal range.
Your MCH is above the normal range.
B12 deficiency can lead to red blood cells that are larger than normal size (macrocytosis).
Folate deficiency can lead to red blood cells that are larger than normal size (macrocytosis).
Iron deficiency can lead to red blood cells that are smaller than normal size (microcytosis).
In someone who has B12 deficiency (and/or folate deficiency) with iron deficiency, the red blood cells may appear to be normal size on a Full Blood Count test because the effects of the iron deficiency can mask the effects of the B12 deficiency (and/or folate deficiency).
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
If I got an active b12 test done privately and it showed I was deficient, would my GP give me injections?
Help please!! 
Folate deficiency
Gastritis 
GP says 'B12 blood test unmeasurable >2000' therefore reducing injections frequency from 4 weeks to three monthly.
