I remember first going to a pain clinic to get a handle on my symptoms, and they gave you a list of feelings/ sensations on how your feet or hands felt,there must have been around 20 different types of wordings that they had on their list,and would you like to add any more, well,I can honestly say I must have added another 20 too that list! I have also found that the neuropathy comes in different guises, or different pains,if at all possible!!! And besides getting a 3 monthly B12 injection, I find out occasionally I need to get folic acid tablets, but this is hard work in finding out, because I have to 'request' a blood test, so I don't know half the time if i am low on folic acid in the first place, I have had major stomach issues in the past, and I know omeprazole can cause B12 problems as well, I feel that anyone who has been on any such medication for a long period of time should automatically called in for a routine blood test to see if they are perhaps unbeknown to be suffering with B12 issues, I think it should be made common practice to carry out such an important screening, as the damage caused can be quite drastic to people's wellbeing, sorry for the long winded post.
I agree with you regarding routine testing for anyone taking PPIs over a long period. Metformin (taken by a vast number of T2 diabetes sufferers) is also now known to inhibit B12 absorption. There are warnings in the info leaflet in the packs but this does not seem to be heeded by doctors.
Long term and high dose of metformin has caused my mum's b12 deficiency I'm sure. Gp not worried what has caused it just given her tablets which she can't absorb. She has lots of neuropathic and neurological symptoms. We are using patches now before we can get help on how to self inject.
Ask for your mum’s b12 levels to be checked again, that will show whether she can absorb it or not. Tablets are frequently prescribed as a starting point to see if they can be absorbed before starting injections as it is obviously cheaper and simpler to give tablets than injections. I now buy 1000mcg tablets from the chemist which do seem to have some effect - he was prescribed 50mcg when his injections were stopped! They were worse than useless! Many people report that the sprays are effective too.Best wishes, I hope you find an effective way forward for your mum.
My understanding of UK guidelines is that patients with neuro symptoms due to B12 deficiency should be on IM (intramuscular) injections whatever the cause.
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Low dose cyanocobalamin tablets are sometimes recommended for dietary B12 deficiency in UK. My understanding is that people who have dietary B12 deficiency with neuro symptoms should be receiving IM B12 injections.
There are moves across UK to put more patients onto high dose cyanocobalamin tablets instead of injections. I personally have grave concerns over this although some forum members do manage on oral tablets.
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms. Link has letter templates people can base their own letters to GP on.
Vital to get adequate treatment.
Untreated or under treated B12 deficiency increases the chance of developing permanent neurological damage including issues with spinal cord.
I recommend you track down the local guidelines on treatment/diagnosis of B12 deficiency for your mum's CCG/Health Board in UK and compare them with BNF, BSH and NICE CKS links. Sometimes these local guidelines differ from BNF, BSH, NICE CKS guidance.
Some UK local guidelines have been posted on this forum. Search forum posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCg/Health Board or possibly GP surgery asking for a copy of local guidelines for management of B12 deficiency.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals have.
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 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)
Very comprehensive with lots of case studies.
Links below are to threads where I left some 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.
Strange that symptom number 11 is included. I’ve had painless migraine with aura for many years although b12 supplementation hasn’t made it go away. Scintillating Scotoma is a well recognised migraine, so not unusual. My daughter has them too.
My strange symptom was the tip of my nose was freezing all of the time, even in the summer months. Right after my very first B12 shot my nose started tingling and felt toasty warm.
Interesting that a few people have experienced hair loss. I lost hair from body and some scalp hair. While body hair never came back after starting injections hair loss from scalp seems 5o have stopped. Take care everyone.
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