Quick background: B12 deficiency (152) in 2017, negative IFAB, received 2x 3 monthly injections then taken off them. Investigating various symptoms now, recent bloods show drop in B12 from December 2022 (455) to now (206). Doctor saying I just need to take a multivitamin with B12 in, but I am not convinced by body is absorbing it. Ferritin also low, 22 and been prescribed ferrous fumarate 210mg to take 1 daily for 3 months. All other bloods fine (including folate, retested IFAB, TSH). GP is going to test for coeliac disease on my next set of bloods in 3 months.
I previously requested the following but was told I couldn't get them on the NHS: GPC antibodies, Active b12, Homocysteine, MMA, vit D, FT3, FT4.
Any advice on next steps? I don't want to take a tablet and then mask a deficiency when my bloods are retaken. Where is the best place in UK to get the above tests done privately? Is there anything else I can request GP to test for that might help in a diagnosis?
Thanks in advance!
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Hullaballop
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As wedgewood says medichecks does PA testing but they unfortunately don't do GPCAB nor homocysteine in this PA panel but it does include active B12, MMA, and IFAB and quite a few other things medichecks.com/products/com...
I think you might have a difficult time convincing GP to restart injections if IFAB continues to be negative. You might be better off looking for a good hematologist/neurologist that will do proper testing / treatment. Or SI.
If you are UK based, the NICE guidelines state that an IFab test negative result cannot rule out pernicious anaemia (about 50% of those with PA will test negative). Worth reading both the current NICE guidelines and the draft guidelines for early next year.
Methylmalonic acid (MMA) being high would be sufficient indication that you have either B12 deficiency (causing MMA to build up in bloodstream, unable to connect to missing B12), functional B12 deficiency (if serum also full of injected B12, but connection not being made), small intestine bacterial overgrowth (SIBO - a fasting breath test series required), or renal problems (a blood test). So MMA might well be the test to get done. It was not easy for my GP to get it done - it took three lab requests. Not all local hospitals have the facilities for this test.
I have had all of the above tests on the NHS. In fact I've had the MMA test six times - the first from a primary care request. Despite three years of frequent B12 injections, my MMA remained raised until the final test, when it had dropped into mid-range.
My B12 started at 196ng/L (so not very low). I have been IFab tested about three times (?) and each time it was negative, my homocysteine test was "normal" at 7.2, and my "active B12" was high - unsurprising since my B12 was at >2000 ng/L by then due to frequent injections. Both my folate (5.5) and ferritin (36) were initially low in range, supplemented for 3 months, then unstable results for a couple of years of supplementing, monitoring, being told when to start and stop. Hard work.
My vitamin D: at about the same time as low B12 was found, I was given an automatic Dexascan because of a couple of broken bones ticking a box or two. I was found to have osteoporosis of the spine, and so given medication and vitamin D daily on prescription. All this was also done on the NHS. Please don't leave this one - but initial blood test should be accessible from primary care easily enough.
Maybe what you really need is a more proactive GP ?
I was two injections into the "maintenance" routine of one injection every three months - exactly where you were when they stopped your injections - when my GP recognised that I was not just failing to respond to treatment, but nosediving ! This was when she got the first MMA test done, suspecting functional B12 deficiency. She was correct. I was lucky.
If your GP is so sure that your problems could be resolved with B12 tablets, why does she think that you have had B12 deficiency, and now heading back again to a low result? Diet ? Because if it is not a dietary deficiency, what is the cause ? Tablets can't help everyone.
It is worth asking her what she believes is your problem before seeing another doctor or paying out for private test results that they might choose to ignore.
Good that coeliac disease is being eliminated as a cause of your problems. This had been ruled out for me too along the way, by biopsy, because I had gastroscopies that showed "flattened mucosal pattern at D1 and D2" (duodenum) and "patchy gastric metaplasia". Once coeliac disease was ruled out, nothing more was said about either observation !
Thyroid can suffer with all this going on. If you have PA, which is an autoimmune condition, it is not uncommon to have others - autoimmune thyroid conditions (Grave's, Hashimoto's), psoriasis and vitiligo being the most common ones. I had a full thyroid panel blood test to ensure I was okay as two of my sisters have Grave's. Lucky again.
Which made me think: any close family history of autoimmune conditions, B12 deficiency ? Another question worth asking - as sometimes you don't know.
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Active B12 test results
Next steps on my GP journey - advice please!
Private Active B12 Testing
Active B12 test from Medichecks
