Due to the support gained from my first post, here I am again... This site is more informative than my GP surgery.
So here I am one week on from starting my loading doses... I have had an outbreak of spots, muscle weakness, upset tummy, nausea and pins and needles since this treatment began but believe me I keep the end in site and hope that I will be feeling better soon....
however, I have just contacted my GP surgery and it my results for antibodies/intrinsic factor is normal...
however my B12 was 152 and I was having a lot of symptoms such as dizziness, exhaustion, blurred vision, tingling in fingers etc...
The gp has said I will receive a year of treatment then that will be it if my vit b12 levels are normal. My concerns are that why am I lacking b12 in the first place. I am 31.
I was diagnosed with ibs at 13 and have tried my best to control my diet since, however I now know their is a link between celiacs and b12 deficiency and on top of that the symptoms of ibs are similar to that of celiacs disease. Could I have been misdiagnosed?
The other thing is I had campylobactor food poisoning last year and ended up in hospital for 4 days. Could this be linked ?.
Feel like the gp has just accepted that I need the treatment to pacify me but has no concern as to why I was low in first place where as I am eager to know what has caused all these symptoms. I know b12 deficient at this time but why is the question x
Any ideas?
thanks in advance to all xx
Written by
corinne288
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Your doctor is an idiot (I'm seriously considering getting that setup as a hotkey - just one press to type the whole sentence.
Sorry, long post coming up...
A lot of what I'm about to say is in the NICE guidelines for management of B12 deficiency. Perhaps your doctor should try reading it. The quotes below are from that document. This is the very first line...
"Assessment should include determining the underlying cause of vitamin B12 or folate deficiency."
The anti-IF antibody test is famous for showing false negatives.
" about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia"
Your digestive tract symptoms could well be due to gastric atrophy which can be caused by infection with Helicopacter pylori or because of an autoimmune response that is killing off your gastric parietal cells (the latter is the cause of Pernicious Anaemia). Either will cause low levels of Intrinsic Factor (and, hence, poor absorbtion of B12) and low to zero amounts of Hydrochloric Acid - which will lead to poor digection (especially of proteins), bloatedness, diarrhoea and an increased likelihood of bacteria migrating from the small intestine into the stomach, where they can cause symtoms similar to food-poisoning.
Your doctor should test you for H. pylori infection (which can be treated with an appropriate course of antibiotics) and test again for anti-IF. If the H. pylori test is negative then autoimmune gastric atrophy is the most likely cause of your B12 deficiency, regardless of the antibody test assuming you're not a vegan or an abuser of nitrous axide). If that is the case then you need B12 injections for the rest of your life, regardless of test results.
"Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary "
Your tingling in finger/toes(?) is a sign of neurological damage. That means you need injections every other day until the symptoms stop improving, then every two months.
" Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
In addition you should be referred to a haematologist.
"Seek urgent advice from a haematologist if the person has neurological symptoms, or is pregnant."
To tell if you have coeliacs disease you really need to be referred to a gastroenterologist - who would also be the best person to diagnose gastric atrophy).
"Refer to a gastroenterologist if:
>Malabsorption of vitamin B12 (other than due to pernicious anaemia) or folate is suspected.
>The person has pernicious anaemia and gastrointestinal symptoms, especially if there is a suspicion of gastric cancer (for example co-existing iron deficiency). The urgency of referral will depend on the nature of the symptoms.
>The person is folate deficient, and antibody testing suggests coeliac disease (positive for anti-endomysial or anti-transglutaminase antibodies)."
You'll notice the NICE recommendations mention folic acid a lot - it's probably a good idea to take oral supplements of folic acid, and possibly a B-complex tablet.
I hope that lot helps. Your doctor really should be following the NICE guidlines. If he fails to do so then I would be writing to whoever is his boss and my MP. Idiots like this often need clubbing over the head before they realise the errors of their ways. Those that can't reform should be booted out.
"my results for antibodies/intrinsic factor is normal..."
It is possible to have PA (Pernicious Anaemia) even if your IFA tests are negative. This is mentioned in the "BSCH Cobalamin and Folate Guidelines" and is called Antibody Negative PA. Martyn Hooper , the chair of the PAS, tested negative on more than one occasion before testing positive.
I printed out the whole set of BCSH Cobalamin guidelines and gave my GP a copy.
I have taken a copy of the BCSH Cobalamin guidelines with me as, as far as I am aware, the NHS should be following these and they came out in 2014 so are fairly recent.
I don't think the NICE Guidelines have been updated since the BCSH Cobalamin guidelines came out.
One thing you might find useful is to know what the regional B12 management guidelines are in your area. There is some variation in regional guidelines and a lot of them have not been updated since the BCSH Cobalamin guidelines came out. A search on your local NHS website might locate them or a FOI request (Freedom of Information).
Guidelines that have not been updated can sometimes explain why people do not receive the treament they expect.
At some point I'm going to get my own copy of the BNF(British national formulary) too.
I also gave GPs copies of the UK NEQAS B12 alert and the summary of the BMJ article on B12.
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