I’ve had issues with burning, numb, tingling hands and feet on and off since my second child was born 3years ago. Also worsening fatigue and aches.
X2 b12 tests showed within range, upper 300’s. However I was taking a breastfeeding multi vit at the time.
Was told it was “burning foot syndrome” (bvits or thyroid, I’m hypothyroid.) and then possibly erythmalgia. Also considered peri menopause.
I also had some dizziness in the winter which has improved since ferritin was improved.
In feb I started taking Thorne basic b which has higher b12 and I remember I started to feel a bit better but had been reassured b12 was ok and so actually didn’t think this was b12 related. When that ran out around easter I went back to berrocca which I used to take pre kids.
The last 2 months all symptoms slowly started getting worse. 2 weeks ago I started taking only b12 cytoplan sublinguals (methylcobalamin and adenosylcobalamin 500µg of each) and I’ve started to notice a calm coolness and gradual ease of the worst hot tingling.
If this is b12 related, I don’t know how to proceed. Will that dose affect tests? Should I inform the Gp or self manage? I’ve been thinking of a medichecks/ thriva test soon for ferritin and vit d which also includes b12.
Written by
haggisplant
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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.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Of course there are many causes of B12 deficiency besides nitrous oxide exposure and PA eg diet, coeliac disease, Crohn's disease, damage to terminal ileum (part of gut where B12 is absorbed), internal parasites eg fish tapeworm etc...
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Next steps/where to get active b12 test?
Advice on what to do next.
