I’m wondering if anyone can suggest anywhere I can get a b12 test done to check active b12. I’ve been on PPIs for over two years due to having GORD and a hiatus hernia. I’ve recently been having many symptoms of B12 deficiency however my dr says my blood levels are normal other than calcium which is borderline low. I have asked the surgery to send me the results but they have failed to provide them thus far. My symptoms are as follows: extreme fatigue, muscles weakness, dizziness, tinitus, headaches, muscle twitches, electric shock pains in feet and hands, very cold hands and feet. I tend to feel much worse when I’m cold.
I’m based in East Sussex (UK). Has anyone used a home testing kit? Or should I go to a private clinic? I feel like I’m trying to push water up hill with a sieve, trying to get anywhere with the nhs. Dr’s advice is to increase my calcium intake and have more bloods done in a month. I already have a high calcium intake in my diet.
Thanks in advance
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TattysMum
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You have a right to have a print out of your blood tests , so ask for them. To have PPIs for so long is very questionable . They will have annihilated your stomach acid which is needed to help breakdown and absorb Vitamin B12 . ( as well as The Intrinsic Factor. , both of which are produced in the Parietal cells ) Your symptoms sound like B12 deficiency . As long as you are taking PPIs you need B12 injections . You will not be able to absorb B12 in your stomach . I have an acquaintance who took PPIs for 10 years and ended up with totally irreversible numb feet . Do not let that happen . It is possible to have a normal B12 blood serum result , but still have B12 deficiency .
You can get an active B12 test from medichecks.com -A finger prick test to do at home -for £39.00. That is a better test than the B12 serum blood test which can consist of up to 80 % of INACTIVE B12 , which your body cannot use . Best wishes .
Hi Tatty’s Mum and wedgewood - I’m really interested to read about the medicchecks test for active b12.
Could I ask, do you know, as this is testing for active b12, does that mean it is more informative than the nhs test which, if I’ve understood correctly is testing all b12 I have and so is meaningless as I have b12 injections?
I’m still trying to persuade my gp that the reduction of my b12 jabs from every 9 weeks to every 12 is having a very negative impact on my physical and mental health. Maybe if I have info on the amount of b12 in my body that I can actually use, he might pay more attention!
The GP should also know that it’s possible to have a normal B12 result and still be deficient . SYMPTOMS should be treated , . The B12 active test is more accurate . B12 blood serum result can contain upnton80% inactive b12 .
Thank you! Really helpfully to know about the up to 80%
Sadly my GP is fixated on the B12 levels that show from the serum test and dismisses my symptoms as being related to my diagnosis of generalised anxiety disorder. A common experience and so frustrating!
It is medically acknowledged that it’s possible to have a normal B12 result and still have B12 deficiency /pernicious anaemia.It has an official name . Sleepy Bunny would have a link to that information . I know that it’s called “ Functional B12 deficiency “ . It maddens me to hear time and again that doctors are so ignorant . Anxiety is one of the many symptoms of B12/ Pernicious Anaemia
Just a trial run of cheap B12 injections would indicate whether you could be helped . .
Did you have a previous serum B12 test done ?- a single test is hard to interpret because the normal range is an enormous range and that isn't because an individuals range changes that much but because people sit at very different points in that range - maintaining levels at that point using stores of B12 in the liver. If you have an absorption problem this mechanism is affected and levels start to drop.If you had a previous test and the levels were significantly higher (>20% - because that's the accuracy of the serum B12 test) then that would be good evidence of an absorption problem.
There are similar issues with using the active B12 test but the test is more accurate, so the margin of error on significant drops is much smaller.
ncbi.nlm.nih.gov is the National library of Medicine website, research paper: "Oral manifetations in Vitamin B12 deficient patients with or without history of gastrectomy" - (I was trying to check whether Nystatin treatment would affect my B12 )
"Metformin disturbs the metabolism of calcium which is one of the necessary elements for the body to absorb vitamin B12."
My B12 was initially 196 ng/L: with a laboratory range starting at 197 ng/L, I was treated. This was in early 2016.
Six years later, I am still not symptom-free, but as you can see, still working on it.
Hey, thanks for this. I’ve been reading up on it as well. I am so frustrated that the GPs have continued prescribing PPIs to me for so long when they can do so much damage. I hope you can be symptom free really soon!
I was dx with a fixed Hiatus hernia in 2009 and was on PPI's since. Every time I went to the GP with gut/reflux problems after that it was put down to GORD, and I was on 60mg Lansoprazole for many years.
At the end of 2020 I was dx coeliac....did some reading, and immediately dropped to 30mg. In March 2021 I was seen by Gastro and told to stop them completely before biopsy. I didn't go back on them (apart from for a couple of months after being 'glutened'). So, for now........I'll keep some at hand just in case I need them.
The point of my story is that if I hadn't been dx coeliac it wouldn't have occurred to me to try come off them. I must still have the hernia......'cos I don't think they repair themselves, but stomach acidity decreases with age.............
GP's should be checking that their patients continued use of these meds is appropriate, but they don't.
Yes you’re absolutely right. I stopped taking omeprazole for a few months last year just to see how I got on. I ended up with severe gastritis and nhs 111 sent an ambulance because I was in agony. That’s when I was put into lansoprazole. I’ve seen so many drs and not one of them has ever explained the damage PPIs can do. I’ve stopped taking them for now, but the acid is starting to build up. Having done lots of research I am now a lot more careful with me diet, I’ve cut out tomatoes, onions, spicy food, coffee and alcohol. So I’m hoping I can keep the GORD under control.
Going to get some calcium supplements today, calcium deficiency has similar symptoms to b12 deficiency.
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