I've been really struggling with exhaustion and breathlessness for the last 9 months. But for several years I've had lots of problems with migraines, and tingling, numbness, balance, vision etc.
In the last year or so, my tongue gets extremely painful (inside) and is very sore at the tip. It's got marks around the edges from my teeth and I think it's swollen but my dentist and the maxillofacial team disagree.
I've got a lot of history in my family of autoimmune disease and PA. My mum has PA, and I have several autoimmune diseases.
My CBC test always comes back normal, but I did my own active B12 test with Thriva in 2019, which looked to me as if my folate was pretty low: 10.9 (range 8.83-60.8)
and my B12 was normal: 95.8 (range 37.5-188).
I'm starting to wonder whether this could all be caused by B12 deficiency? I've looked at the stuff to do with sore tongue, and I'm not sure if mine looks the same. I've attached a picture too.
Does it sound like it could be B12? The docs have sent me to all sorts of specialists but I don't think anyone has considered B12! I wanted to get a sense of whether it's a possibility before approaching the GP.
Thanks
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hummingbird0009
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the symptoms do fit with B12 but there is so much overlap with other conditions that it is difficult to know,It is possible to be B12 deficient well into the normal range.
Folate is in range so unlikely that is deficient - its very responsive to diet because it isn't stored in the body, whereas B12 is.
From personal experience I know it is possible to have severe B12 deficiency symptoms with a serum B12 result that is well within range, most of my B12 results were from 300 - 500 ng/L.
"B12 was normal: 95.8 (range 37.5-188)"
I'm assuming the above was an Active B12 result (Holotranscobalamin/HoloTC) rather than a Total B12 result.
PA can run in families, more info on PAS (Pernicious Anaemis Society) website.
UK guidelines indicate that patients with the symptoms of B12 deficiency should be treated even if their serum B12 is within normal range.
There are other tests that can help to diagnose B12 deficiency besides Total B12 (serum B12) and Active B12 (Holotranscobalamin).
Have you considered getting MMA and Homocysteine tests and also tests for PA?
If your GP doesn't want to order them or refer you to someone who can, it is possible to get them done privately.
NHS GPs are unlikely to accept results from private blood tests but significant results may be enough to nudge an NHS GP into ordering the same tests or referring you to specialist who can.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance. Search forum posts for "local guidelines" as some local UK guidelines have been posted on this forum or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of local guidelines on management of B12 deficiency.
Link below discusses treatment/diagnosis of B12 deficiency in an area of UK that has a poor reputation on this forum for how B12 deficiency is dealt with.
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
I have had a sore tongue on one side on and off for many years but with more regular B12 injections (every 2-3 weeks) I am managing to keep that symptom at least at bay. I also have teeth imprints on each side of my tongue that don't go away. I have recently started SI cyanocobalamin as I unfortunately ordered the wrong type from Germany. I at least have B12 deficiency but may well have PA. Hope you get some relief soon.
Thanks so much for all of the information... looks really useful. It'll take me a while to work through it, but I will! I've sent off fro Thriva blood test for vit d, active b12 and folate (again) and they've received them this morning so hopefully those will be back soon.
How are you iron levels as this can cause tongue problems
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