Devices that had been used before or are being used now to detect the amount of Vitamin B12 present in blood.
Hi, I am Developing a device for dete... - Pernicious Anaemi...
Hi, I am Developing a device for detecting B12 deficiency. I would like to know about the devices that are available for diagnosis at home.
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AvisekBarla
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I'm sorry my friend, I have no doubt that your intentions are good and you simply wish to help those poor souls suffering with a B12 deficiency. However, I personally feel that the taking of blood samples, is a job for a person trained in the art. Any invasive procedure is fraught with dangers, if only from infection. In addition to this, I also feel for what it's worth, that the tests needed are complex in their structure and the interpretation of the results is a job for highly qualified medical experts. As the successful outcome of any individuals future treatment program, will depend not only on the accuracy of the test results, but also upon the diagnosis formulated from the interpretation of those test results. Therefore it is my considered opinion, that any individual who feels they may have a problem, should begin by discussing matters with their GP as a starter. The GP should then be allowed to arrange FOC NHS tests to be conducted by medical experts, then the GP should seek a diagnosis with the help of the relevant consultants in the field. Then and only then, can a successful treatment hope to begin. HOME TESTING is not I honestly feel therefore a good idea, if one is seeking a successful treatment program.
Hi, B12Turbo.
I'm a biomedical engineer myself and am qualified to do it officially. I need feedback from people who are suffering from it and I want to develop the device with the "actual " peoples need. It would be really bad if I make a device which people don't like/ is not easy to use. So, with correct feedback we can make a device that can "detect" the issue and cure it. After reading the Questions here am sure I am in the right place to know more about the deficiency, and B12 my friends is really important part of our body. If it is malfunctioning then the issues are many, and i needn't introduce it to you people. So, kindly if you have suggestions put forth so that an affordable and comfortable way can be worked out.
Hi, B12Turbo.
I'm a biomedical engineer myself and am qualified to do it officially. I need feedback from people who are suffering from it and I want to develop the device with the "actual " peoples need. It would be really bad if I make a device which people don't like/ is not easy to use. So, with correct feedback we can make a device that can "detect" the issue and cure it. After reading the Questions here am sure I am in the right place to know more about the deficiency, and B12 my friends is really important part of our body. If it is malfunctioning then the issues are many, and i needn't introduce it to you people. So, kindly if you have suggestions put forth so that an affordable and comfortable way can be worked out.
Dear AvisekBaria
I understand where your coming from and would not doubt your biomedical abilities, but you must understand, that a great many people on this site, have not spent years in training, they are not therefore qualified to provide you with accurate data, upon which to base your design / develpoment work. From my own base in the R & D world, I'm sure you will agree, that there is very little worse than inaccuracies, upon which to evaluate the true potential of product design and construction, not to mention, that in this case, you are dealing with peoples lives and wellbeing. I'm sorry but the people from whom you seek advise, are simply themselves seeking advise, because they are simply lost and bewildered by the B12 world and the complexities it contains. I have no idea about the degree of both medical and engineering backup you have, all I can say is, I see upon a daily basis, the way in which very highly qualified people, working in a major hospital environment, with all the facilities of very well equipped labs and a team of consultants in the field, working upon nothing other than the complexities of B12 problems and it's measurement / evaluation, simply struggle to achieved ever increasing degrees of accuracy, This response is not intended to throw cold water upon your efforts, the basis of which may be commendable, however, I simply wish to point out the pitfalls. I hope you understand my comments are intended to simply be helpful and I thank you for your concern for those who are suffering.
Dear B12Turbo,
I have all kind of facilities to develop a device, so that is not the issue. But the issue here I am trying to address definitely is complex. All I am asking is for their daily experiences and the issues that we all face. Requires no technical know how. Just want some feedback, and talking about complexity this is a serious issue and issues don't get solved with status quo.
Dear AvisekBaria
I fully understand your aims, moreover, I applaud your efforts, the problems we see on this sight are often thought by people who are suffering, to be based upon B12. Now this may sometimes be true, but all too often it may not. Even their GP's who know these patients well and have their notes to hand, often struggle to understand their needs, as well as to understand the complexity of the B12 world. All too often people are prescribed Tricyclic Antidepressants such as Amitriptyline, simply because they are thought to be depressed, whilst in point of fact they are suffering a B12 deficiency. If their GP's cannot work it out and thereby provide an accurate diagnosis, what chance is there of your getting the degree of accurate information your future work seems to require ? Any device that could be brought to market, that would simplify accurate diagnosis, would be a God send, I fully agree, but I would hate to see good people such as yourself, mislead by the sort of things that people often feel they KNOW they are suffering from, but when questioned upon test results etc. have not taken them, or are working blindly upon something they have been told or simply read on the internet.
I hope I've made myself clear and I now wish you all the success in the world, I really hope you can complete a device that revolutionizes the B12 world.
Hi AviseBarla,
I was diagnosed with B12 Deficiency roughly 2 years ago and have been on injections ever since. The GP every so often will ask me to have a blood test, and usually my red blood cells are a little on the large size and Im not sure if my Ferritin is border line as well. Ive not heard of anything at all that would help me keep track of B12 and any iron deficiency. As a serious athlete it would be useful to me to keep a check on levels, much as a diabetic would their blood sugers.
I don't feel at GPs keep a very regular check up service once you are on injections and don't seem very keen on discussing your bloods in much detail and explaining what borderline actually means - they usually say oh its linked to your B12!
Surely @dizzykaz we need something to check our results regularly. May I know what kind of blood test did you take?
Hi AvseBarla, It would like to be able to keep a check on B12 levels at home, I think that you would need to have some sort of guide with it, because once you are on injections any blood tests after this gives high readings on B12. When I said 2 years I actually meant 20 years! I cant remember what the first blood test was, but I bet it will just have been FBC, the second one though was looking for the intrinsic factor - If you haven't got the intrinsic factor you have to go on injections.
Interesting!
There was some talk a while ago about a breath test that was being developed. Don't know whatever happened to it:
ncbi.nlm.nih.gov/pubmed/216...
I have used a home finger prick blood test for serum B12 but can't vouch for it's accuracy. The problem with your premise is you want to measure B12 in the blood. This is not a good indicator of deficiency, as it doesn't tell us anything about what is reaching cell level. No point in a new home testing device if it's just going to measure the same old inaccurate parameters.
Hi AvisekBaria
Well there you go, Hampster knows what she is talking about, she has just outlined the major problem, you are going to need a devise that is capable of measuring and accurately determining all the parameters and aspects of the levels of B12 at cell level, along with other factors within the body, if you are to have a unit that provides the same degree of accuracy as tests for HoloTC MMA Homocysteine readings etc.. Otherwise, as Hampster is so rightly saying, a simple Serum reading, is about as much use as a chocolate tea pot or an ash tray on a motorcycle.
The concept of the idea you have is wonderful, I really hope you can make it work and I'm sure we all wish you the very best of luck.
I do like what you're trying to do, we definitely need change. Maybe you should ring the PAS office and speak to Martyn Hooper about your ideas? The number is here:
Hi @Hampster1
Well I definitely want to check the level of B12 present in blood, but I assure you it is not the old way. I am considering various parameters too and hopefully there is a relation between those parameters collectively. Single parameters do give false results that is why we need to attack the issue in a new way. I will let you know how far I have gone in developing the device.
Regarding calling Mr Martyn Hooper I will try to do so, but I am from India and there might be small differences in the office timing. Do you have the mail Id by any chance?
in reply to AvisekBarla
No they don't have a public email address, just a postal address and telephone number. There is a forum but it's down for maintenance at the moment.
OMG!!! Finally someone brings around a device that can help us feel less attached to the GPs and more in control of our disease at home! Great idea!!!
I would be interested in helping you further. This is the answer iv been waiting for!!!
in reply to Emjost
Emjost, if you are diagnosed PA and on injections you don't need to monitor blood levels, only symptom relief counts. Even the new guidelines state that no further testing is required once on treatment. So I don't see how any device can help existing sufferers, it can only help in terms of initial diagnosis.
AvisekBarla in reply to
Hi hampster1
Well whatever i have studied till now there is a chance that the deficiency may come back. Plus I am keeping in mind a condition where the person is tending towards deficiency. So, a regular check up that can be done at your convenience will be really handy 
in reply to AvisekBarla
You're missing the point AvisekBarla, the deficiency never "goes away". It is a lifelong condition. You correct it with regular B12 injections set at a frequency that keep your symptoms at bay. If your symptoms start to return before your next injection then you need it more often. Blood levels are utterly irrelevant at this point. So whatever you are trying to invent it needs to be aimed at diagnosing people in the first instance, people who have never had injections or never taken oral supplements, people who are not diagnosed.
Exactly. Mine is so sporadic it's ridiculous. Then I have to await a blood test result before I can have a b12 injection..... Lengthy? Instant home testing kit= saving NHS time and money surely?
in reply to Emjost
As per my answer below, they are not supposed to test B12 levels once you are on injections. They are not supposed to set injection frequency by blood test results. They're harming you if this is what they're doing. If the NHS wants to save time and money, then they need to teach people how to self inject and then give them as much B12 as they personally need, which costs only about 50p a pop.
AvisekBarla in reply to
So, after detection all they suggest is take shots?
in reply to AvisekBarla
That's what should happen, but doctors are very ignorant and they try to dose based on blood test results. In many ways I'm not sure it would be that helpful for people to have an "at home" device that could possibly give them a false sense of security.
AvisekBarla in reply to
Firstly that is really bad, what doctors are doing. Secondly, am sorry to say but there are enough papers that say overdose can turn lethal for some people.
Thirdly let's not tell that the device is a false security. You just help me get feedbacks and I will surely prove my point that it is possible. Also, to be fair only dosage won't help. In one of the cases the body doesn't absorb B12 whatever the case. And it can be treated in some other ways. Am sure doctors can't trace out the reasons. They just find out if it is deficient or not. I am reading day and night to cover all the possible cases. So, please be assured am not faking it here. I really really am putting my level best. If any one wants to privately let me know there issues then please feel free to mail me @avisek.iamonly.barla@gmail.com or search for Avisek Barla @facebook. I would appreciate replies here more as it is open for general discussion and I am learning a thing or two. Surely others will too
in reply to AvisekBarla
I suggest you don't make claims that you can't back up in research, if you have any papers that say B12 is harmful in high doses then I'd love to see them. For the benefit of other readers I would point out that there is no upper tolerable limit set for vitamin B12 by the World Health Organisation and the EU because there is no evidence of toxicity at any level. I won't be posting on this thread again because there's nothing I hate more than misinformation and scaremongering.
AvisekBarla in reply to
Kindly see this vitamins.lovetoknow.com/Sid....
I will post scientific papers soon.
AvisekBarla in reply to
@Hampster1 please don't leave. If I am wrong kindly correct me. It's for a greater good.
Emjost in reply to
My personal b12 deficiency journey has been up and down up and down. I am currently under a specialist at the hospital. If I had a device that if I'm feeling low/had many aches in my joints /experiencing vertigo (all of which I experience a lot) if I had these symptoms and took my own b12 level and it was low it would be an answer there and then and I could then go to the Gp and request a b12 booster injection. It makes it more manageable. I'm sure everyone who has this strange disease has had very personal journeys. I for one feel this device would make my own journey easier.
Surely sir,
I would take this into consideration. Coming to your aches may I know how frequent are the aches?
Secondly do you have white patches at the base of your finger nails?
Aches are daily and wake me when I turn over in bed at night. I do have white patches at the base of my finger tips, but I wear a lot of nail varnish so my nails don't often see the daylight! Why is this?....
These are called moons of nails. They appear when someone has B12 deficiency.
in reply to AvisekBarla
I have (anecdoteally) read that the nail moons disappear in B12 deficiency, not appear. And as far as I'm aware there is nothing scientific to back this up. You really need to get a handle on B12 deficiency if you are making a test. Suggest you go here: b12deficiency.info and read every link, read all the suggested books, and watch all the documentaries. There's enough myths out there as it is without adding to it with misinformation.
AvisekBarla in reply to
Thanks , I have come across this page. I will surely see the documentaries. Surely it will help.
in reply to Emjost
Emjost if you are on the seesaw that is caused by insufficient treatment then that sucks. You already know you need another injection because your symptoms are coming back, you don't need a blood test to tell you. Particularly one that is absolutely useless in the first place. You are describing neuro symptoms for which you need injections on alternate days until no further improvement, as per the BNF section 9.1.2. I just can't say it enough times - blood levels are irrelevant once you are on injections, they tell you nothing about what is happening at cellular level. Even the more sophisticated tests (active B12, MMA, homocysteine) normalise on treatment in a way that doesn't necessarily correlate to symptom relief. Symptoms are the only thing that matters. Make sure you optimise folate and ferritin levels, check a few other things like thyroid, vit D, calcium and cortisol, but in the meantime get more frequent injections. To be blunt the only people who get well are those who have doctors who actually follow the BNF guidelines for neuro symptoms (rare) or those who self treat inbetween the paltry allowance dished out by the NHS. There is a lovely group here who can perhaps help you on your road to recovery:
facebook.com/groups/1749289...
Never be afraid of too much B12, there is absolutely no evidence whatsoever that it can harm you in any dose. Whereas too little (which is the norm) is absolutely catastrophic.
H x
Emjost in reply to
Hi! Thank you for your input and knowledge. Are the neuro symptoms common? Mine are awful, I can't even hold a pen some days? My doctors tried to say that as my last blood reading was 1034 I should no longer have symptoms and maybe I have something else? I stopped him immediately and said "no I know I have PA I feel iv had it for years, all of the symptoms are exact to what I'm feeling and have been feeling for a number of years". They seem to only want to boost my b12 when it's low? I'm so confused? I just want to not feel like an 88 year old everyday.
Sorry for the drone on.....still just feel in no-mans-land!
in reply to Emjost
Your experience is common I'm afraid, neuro symptoms develop or worsen when people are under-treated for their own personal needs. And as B12Turbo has mentioned, some people do better on other types of B12, like methylcobalamin. Come join the Facebook Group? You will learn so much and get so much support. Here is a blog about B12 and neuro symptoms, from the lovely lady who created the b12deficiency.info website:
b12deficiencyblog.wordpress...
By the way I inject twice a week and I am very well. Co-factors are vital - folate, iron, B-complex, other minerals such as magnesium, zinc and copper. Thyroid and cortisol should also be checked.
H x
Emjost in reply to
Wow! Thank u so so much. I'm not on Facebook anymore?.... Will check out the other link you provided though. I'm under a specialist at the hospital so hopefully all of the above will be checked. It's such a strange disease?
Thanks again x
Hi Hampster 1
I think sometimes we are flogging a dead horse, we try hard to make points, we tell people to get tested and fully diagnosed prior to starting medication. We tell people that Serum levels are useless etc, etc. I fully agree Vitamin B's are water soluble and overdose is for most people almost impossible, the body should simply excrete any excess. However, we are finding that with a very small number of people, (myself included), are suffering what we have now termed a B12 overload and these people appear to achieve the feel good factor, only whilst their levels are maintained in a much
tighter band than is normal. This does not alter the fact that listening to your body is still the best way to feel good, but it appears that perhaps certain people are not so good at expelling the excess and these unlucky folk, seem to have an increased problem, that of trying to stay in a much narrower pass band, between high and low, in order to stay well and happy. Exactly why this is, at present remains something of a mystery, I personally feel, it may also have something to do with what type of cobalamin is being taken and for what reason. Of course that is purely my own thoughts and at present they are not supported by any scientific evidence.
I also have to agree, that all the testing in the world, becomes null and void once B12 is being taken on a regular basis and the only test available that works is:- " How do I feel today ?
I completely agree with you. As B12 is also used for cell division we need to make sure that the wrong unhealthy cells don't get to replicate and create havoc. This is the reason for letting no overdose.
in reply to B12Turbo
I wonder if you are a victim of over or undermethylation B12Turbo? I'm sure you've researched this already but you might find the MTHFR website useful, he has this to say about the subject:
mthfr.net/overmethylation-a...
Just an idea, anyway, as you say we are all different.
H
B12Turbo in reply to
Hi Hampster 1 It appears we may be thinking along similar lines, the other aspect is, that when you look at the U's & E's and the LFT readings, they are more than perfect, they are right down the middle so to speak. So it appears that methylation could be a factor worth exploring in more detail. Many thanks for the link, I will take it on board. Just one last point, I have been using Methylcobalamin for the last 7 months, after using Cyanocobalamin for 18 months, I enjoyed success in raising my B12 from 131 to 497 in just 6 weeks and continued to maintain a good level from there on, whilst reducing my intake from 150ugs per day + B1 B2 B3 and B6, down to only 50ugs per day + the other B's. Now whilst the level was maintained, the feel good factor re Neuro. problems, was not being addressed very well at all. So 7 months ago I switched to the Methyl., in the hope that the Myelin sheath might repair, if that was to be the problem. Well it appears to have worked and now I only need approximately 1000ugs of Methyl + 400ugs of Folic Acid every 6 weeks or so. Something of a success story I feel, but there is still much to learn. Many thanks once again!
Hope you enjoy your holiday weekend.
B12T
I'm sorry AviekBaria, I think you will find that it is Folic Acid that's plays the major player in cell division. Whilst both B12 and Folic Acid function as methyl donors. They carry and donate methyl molecules to facilitate many metabolic reactions, including the manufacture of DNA and Brain Neurotransmitters. However, Methyl donation is also involved in the metabolism of Homocysteine, a build up of which may lead to Arteriosclerosis and Osteoporosis. Perhaps this the science to which you refer, I have no knowledge of any scientific evidence that states that:- (A) . B12 at any level has produced toxicity, as Hampster 1 has already stated to you. And (B) that high dose B12 is directly involved in the replication of Cancer Cells for instance. Whilst Folic Acid is involved with all cells in the body, It is the rapidly dividing cells, such as the Red Blood Cells, Immune Cells, and cells of the Gastrointestinal and Genital tracts, which have the greatest need for Folic Acid. You may find that in India, some people may have a diet that is low in Folic Acid, this can cause poor growth, diarrhea, anemia, gingivitis, as well as abnormal PAP smears in women, since at low levels, new cells cannot be produced adequately. It is also associated with Spina bifida and other birth defects. May I state that there is an RDA of 400ugs set for Folic Acid, although doses of 800ugs are not unusual. Whilsyt most tablets will be found to be Folic Acid (Folate). The best way to take Folic Acid is as Folinic Acid, the body has to convert Folic Acid into tetrahydrofolate and then add a methyl group to form Folinic Acid. Supplementing with Folinic Acid therefore bypasses these steps.
And if you know excess folate ( which gives folic acid) decreases b12 too. they are interlinked and their pathways are interdependent too. And for the cancer risk please read this webmd.com/cancer/news/20091...
in reply to AvisekBarla
As B12Turbo states, the controversy in research surrounds UMFA (unmetabolised folic acid), not B12. Get your facts straight before you scare readers who are already dealing with an awful lifelong medical condition.
Even the link you posted states that "The real headline of this study should be that smoking increases the risk of lung cancer -- the study found that a total of 94% of the subjects who developed lung cancer were either current or former smokers".
Suggest you get yourself onto Pubmed because your current sources are not what I would class as peer reviewed research.
B12Turbo in reply to
Agreed Hampster, nothing worse than " My mate told me in the pub and he knows because his mate had an uncle who's friend had it, SO I KNOW IT'S A BL....DY FACT I TELL YOU" (Extracts taken directly from the PUB School of Knowledge and Scientific Fact). B12Tx
I think the study shows that there is a statistically significant correlation between high levels of B12 and higher rates of cancer. However, this is very different from establishing that there is a causal link, as the correlating factor could be something else - in this case - folate levels.
I'm sure some of the literature I have read actually links low B12 with higher cancer risks.
See this article on correlation between high B12 levels and cancer - explaining quite clearly why B12 is there. It isn't a cause of cancer - quite the opposite - it's part of the bodies mechanism for fighting against cancers
Gambit62Administrator
There may be subtle differences between the situation in the UK and those in India due to dietary habits - as veganism is likely to be a common practice for a much higher proportion of the population than it is in the UK - and you can't absorb B12 if there isn't any B12 in your diet.
Hi Gambit62 I guess no one can argue with that fact, however of course there are many reasons why someone may not be able to absorb B12. I'm sure you will agree and diet has to be a major factor in everyone staying well I feel. However, I guess we have to allow for freedom of choice.
Thanks Turbo - it's possible that the Indian government does something to fortify diets - don't know and doesn't really sound like something the BJP would have supported. If they did it might help city dwellers in India but not sure that it would apply to rural populations - however, I suspect that the rural poor probably wouldn't have access to a device that could instantly measure B12 anyway.
Just wanted to highlight that there could be a difference between the situation Avisek finds himself in and the one in the UK where it will tend towards malabsorption problems ... in which case the sufferer can tell when levels are getting low, because they know what they are looking for.
Personally I think the really big problem everywhere is lack of awareness. I probably had symptoms for years and would have continued to battle on thinking it was all part of getting older or other conditions if it hadn't been for the blood test when I broke my leg.
Hi Gambit62 I fully agree, many people suffer due to not being aware, or even their GP's not being aware. Sad don't you feel, that's the whole idea of this site and those of us who can, do all we can, to make sure that others become aware. (BUT!! be careful, for as Hampster1 and I had outlined, there is nothing worse than inaccurate information.) I always send a copy of anything I find in my research to my GP, I even purchased a copy of "Could it be B12" and took it down to him, this has been passed around the doctors and has ended up in the surgeries library. Hopefully this will benefit other sufferers in this area. Education is something into which we can all have an input. I even send anything new down to major research labs with whom I work and we all should try and learn from each other. As a Director of Medical Research at a major UK hospital said to me a week or two back "None of us can know everything, we are all in this game to learn". Whilst a wise man once said "True knowledge stem from us accepting the fact that we KNOW nothing". You see any knowledge is only a known fact, until it is disproved and replaced with a new theory, which then becomes a known fact until it too is disproved and replaced. Let's take Einstein's fact, that nothing travels faster than the speed of light, see what I mean ?? This process is called development.
Studied Philosophy of Science and Physics as part of my degree many many years ago so well versed in the dangers of the link between theory and interpretation of data ... and hence the need to maintain an open mind.
Haven't had much to do with bio-chemistry in the past but suspect I'm going to end up picking up bits over the next few years. Have thought about giving my GP 'Could it be B12?' though I haven't actually read that one - just the books that Martyn Hooper has written, but I feel as if he has totally written me off as a nut-job so still think I need to change GP ... but may leave him one for reference. One thing that has been going through my mind was him saying 'the things you are describing are not symptoms of B12' and find that really worrying. I don't expect my GP to know everything - because there is just too much - it would just be nice to find someone that I didn't feel had already made up their mind before I walked into the surgery, because that really is a waste of time for both of us.
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