High B12 readings

Hi, I have been taking the cyanocobalamin supplements as I'm a vegan and I take H2 blockers for reflex. I 've taken them for years and suspect they cause a deficiency ( having an op soon for hiatus hernia so that should fix the reflux problem). My reading for B12 was 1207. I had complained of deficiency symptoms and he said he was sorry that I was wrong as my reading was high. I believe, and have researched, that a high reading means there's a problem with absorbing B12. He said no that wasn't the case. I really believe it IS! Any comments!

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  • Hi BLVD ,

    A natural high reading of B12 can be because of other problems, liver function and some cancers if I remember rightly. Also there are a few research articles that refer to high serum B12 , but active B12 showing a deficiency , see:

    active-b12.com/home

    degruyter.com/view/j/cclm.2...

    It looks like you are able to take B12 up naturally. Perhaps you are not able to metabolise the B12 into the active form (Holotranscobalamin). There is no known harm from having a high serum level of B12, but as you are not feeling well I assume you have had blood tests also testing ferritin (=iron storage) and folate, thyroid function etc? You could ask to have the active B12 and or MMA test, see the above mentioned website, and:

    viapath.co.uk/our-tests/act...

    I hope this helps,

    Kind regards,

    Marre.

  • I have had lots of tests, my thyroid ok, all ok. Cholesterol 6 but ok as hdl good. My folate was high, always is, and I previously had macrocytosis but this time it had 'sorted itself out'. My ferratin is on the low side but not low enough to need medication he said. I have asked for the 'active' test but he's never heard of it, or any of the other tests and had to write it down. I paid for a homocysteine test at a Yorklabs, that came back ok. He also only know of the injection and cyanocobalamin. Thanks for your reply Marre, Lynn

  • Hi Lynn,

    I'd just ask your GP if he will refer you for the active B12 test at St Thomas, offer to pay, it cost £18,-, That is if you can get to London easy. See:

    viapath.co.uk/our-tests/act...

    That way your GP would seem very childish to refuse. Print this off for your GP, read it your self, it all helps and it will be very good if you can enlighten your GP , see:

    bcshguidelines.com/document...

    You can also have it send by post or have it done privately at :

    tdlpathology.com

    The Doctor's Laboratory (TDL Pathology) have added Active-B12 to their test portfolio and now offer private testing at their London clinic.

    viapath.co.uk

    Viapath (formerly GSTS / Kings Path) are a UK provider of the Active-B12 assay.

    purehealthclinic.co.uk

    Pure Health Clinic can arrange for the Active-B12 test to be performed by post.

    I hope this helps,

    Kind regards,

    Marre.

  • Wow, that is amazing Marre, how do you know all this, are you a haemotologist or something. Brilliant, thank you x Lynn

  • Nothing medical me, just had PA/B12 def diagnosed since 2001, met people on PAS first forum and Dutch B12 def forum who helped me and am just giving back what was given to me! Marre.

  • You are probably right about not absorbing the B12, especially as you have been taking cyanocobalamin and not methylcobalamin, which is better absorbed. This would skew the results of the test, as would high folate. It is important to get this sorted out as, in view of your impending operation, the nitrous oxide in surgery and dental injections inactivates B12 and will adversely affect anyone who is already deficient (from the "B12 Deficiency Survival Handbook").

  • PS. The same book also advises that H2 blockers, along with many others, depletes B12.

  • Thank you Polaris. Yes, nitrous oxide...the docs don't know this ! I had nitrous oxide whilst they were manipulating a compressed radius 2 1/2 years ago. I was most probably a little deficient already (age, vegan, taking H2 blockers) but THAT really did it! I was so poorly. At the time I put it down to my age and having a broken arm. Then I researched B12 and realised the nitrous oxide had wiped me out! As I say, they just ignore you. When I was found to have macrocytosis the doctor wanted to blame alcohol! I drink a little but he insisted I shouldn't drink at all as it was probably that. iNCREDIBLE! I am trying my best to convince him and I hope to win my argument and get him to take it seriously!!!!!!!!!

  • You will need to be off B supplements for a while before you have this active B12 test.

    Are you having your hiatus hernia repaired.

  • Oh Manukia, I didn't think of that. How long? I am having it repaired at the beginning of October and I don't want to feel poorly when I have it! But it's chicken and egg, I won't be able to come off the H2 blockers until it's fixed! Until then I'm going to be deficient unless I have injections which he won't do because my serum B12 test is super high 1207!

  • Yes, the H2 will impair your absorption of ANY b12. An easy test for whether you actually NEED h2 for reflux is to skip it for a day. When the heartburn comes, take a bit of baking soda in water. If it gets better, the YES, the h2 is going to act on EXCESSIVE acid in your stomach. But if the baking soda (sodium bicarbonate) makes the heartburn WORSE then in fact you're actually DEFICIENT in stomach acid!!

    My mom, a wise woman, and a degreed nutritionist taught me this easy home test.

    When you're in desperate need of b12, those h2/proton pump inhibitors are the enemy sometimes!

    And as others have said, you might need to be taking a methylcobalamin and look at your MTHFR!!

  • Thank you Pauline, this is a great site, I'm amazed at you lovely helpful informed people out there! I wonder if I can have low stomach acid when I've had the endoscopy, barium and acid test monitored in my stomach (which showed reflux )for my problem linked to my Haitus hernia and Barrett's Oesophagus? Surely that would have been identified. But I will try the test and report back. and spoke to my doc just now who can't help me on the NHS so I am just going to order some methylcobalamin from Amazon and fix my problem myself!

  • BVLD, I have both hiatal hernia and Barrett's as well! Also high genetic risk of gastric cancers and did PPIs for years! But I gave up ALL grains, which increase acidity in not just the stomach, but the entire body! Sugars too! I had acidosis so extreme that I had 7 fractures without stress/trauma in six months. I went to Mayo Clinic and as I've mentioned elsewhere, the immunologist told me "no grains, no 'safe' grains" and boom! the "acid stomach" went away, the bone fractures stopped. The endocrinologist there (a 'bone and lipid' guy) was WORSE than useless-- told me to eat margarine! I said, on what? Your immunologist just told me no bread or grains?!

    But since ditching grains and sugar, PPIs and doing the methyl forms of b12, all the gastric issues resolved. It's been Amazing. My sister who looks like my twin stubbornly clings to bread and pasta like they're a life raft, and she is 210 lbs, diabetic and 'married' to Nexium. She even vomits BLOOD, and has dermatitis herpetiform which is a gluten-induced rash, and still eats oatmeal daily and pasta 3 times a week. Crazy.

  • Pauline, that is an amazing story. So glad you're sorted. I tried cutting out gluten and wheat (and other stuff) as I had a private test with York Labs and they said I was intolerant. It didn't make any difference. If you have a HH and B's then why aren't you having the operation? Because I have B's they will do it. I suppose there are SO many older people with HH's that they don't do it for everybody! Not sure where you live Pauline. Until I came on this site I had NO idea of the complexity of this problem and no idea the doctors were so ignorant....about low stomach acid also! Lynn

  • One reason I haven't had the surgery is because I had emergency surgery last year for what is called a "Cecal Bascule." Whereas a Volvulus is a twisting of the cecum, a bascule is an anterior FOLDING of the cecum. I was told by the surgeon that it was rare in the extreme to present in late middle age with this. Had my son not been visiting when the pain started, I wouldn't have survived. As it is, they barely got me to the OR in time. I was quizzed by this surgeon after about 1) how many years had I been having this low belly pain? Me: my whole life, off and on. As a young child my parents were told "nervous child". As a teen, "menstrual cramps" as an adult "IBS", post a hysterectomy/middle age " Conversion Disorder" (in the US, they ALWAYS say it's psychiatric if there's no obvious answer, it's in the DSM--the diagnostic manual).

    At Mayo I gave the surgical report to the GI, who googled the terms and said, "no such procedure." I said, "did you go to Google University Medical School??" He wrote in the record "she claims to have had a fanciful abdominal surgery and showed us the scar." I was 3 weeks post op, and they acted as if i had cut open my OWN belly! But having that statement in my EPIC record has led MD after MD to tell me I need to see a psychiatrist!

    2) GI specialists are now extremely hard to get in to see. I have not seen my GI in almost 2 years even with that surgery happening and pancreatitis, instead seeing a parade of different Physician Assistants who know nothing about anything unusual. I was diagnosed with the HH three years ago, by an MD who retired right afterwards due to the passage of Obamacare (many doctors did this creating a shortage). So now...well, I am finally seeing the GI doc in two weeks, but having lost my cecum and the HH being fairly small, in the States, they just don't do HH surgeries very often. My older brother had his fixed years ago, but that was before the new healthcare law took effect and several of this MD's PAs have told us it's "no big deal to have a HH." Of course the actual DOCTOR is still unaware, despite our giving them the paperwork, that a DX of any kind of anemia has been made. They don't look at your electronic chart usually until you're sitting next to them.

    My GP tried to pull some strings to get me a different GI, but told us "no one wanted an 'unusual' patient as it created too much work."

    The cecum bascule surgeon had me sign a waiver so she can write an article about my case, and she and my endocrinologist have referred me to the National Institutes of Health (NIH) for more genetic evaluation. But not treatment! Only for their research because the cecum normally would have ruptured in childhood. But mine didn't somehow.

    I go to NIH in November, but was warned by every MD whom I've told that in NO WAY does NIH's agenda intersect with MINE.

    As far as getting the HH fixed, no one is going to do that. I have cilliary dyskenesia, and that is related to how I came to need the cecum yanked out to begin with. It is a less awful form of Situs Inversus aka organ reversal, and my intestines are not "attached" to the sides of my trunk! Surgeon said they were as a big tangle in a trash bag! So HH repair might not even help anyway. Again, this is one reason why NIH wants to slice and dice me genetically. It may happen that NIH will recommend treatments, but that doesn't mean the recommendations will be followed at all. No one is obligated to treat me in the US. There is this idea abroad that the US has great medical care, but it's not true if you have ANYTHING even slightly unusual. Or you're not a VIP. We fully expect to be booted out of the gastrointerologist's practice when we finally see her in 2 weeks. Because if she was willing to help me, she would have by now.,..I hate to be negative, but it does happen a lot in the US. It looks like she's been sending us "go away" messages by refusing to grant appointments all this time. Often they don't formally dismiss you. They just treat you badly on a personal level and hope you'll just get the heck out.

  • Did the baking soda and it got better!

  • Did the lemon juice and I didn't burp!

  • All your b12 levels on all the tests will be normal or above normal if you have been taking b12 for years. Even 5mcg per day can raise b12 levels by 50 over a period of 30 days. This amount of course would do nothing to help neuro symptoms but it is enough to rectify blood levels and resolve any problems with anaemia.

    Unfortunately it isn't enough to stop you suffering permanent neurological damage.

    With regard to the baking soda test - a nicer one to do is the lemon juice test. If you take lemon juice in half a cup of water. Sip it. Then see if you belch.

    If you do it indicates you have low stomach acid which is more likely since high stomach acid is actually a rare condition.

    Has anyone checked if your b12 symptoms are due to a previous b12 deficiency than since been rectified? Just because your b12 levels are normal now doesn't mean all previous issues have been resolved.

    Oh, and just to add. If you have got low or no acid, then you've got b12 deficiency no matter what your blood levels are showing. Because without acid you cannot absorb b12 because it cannot be broken down.

  • Hello Poppet, as I said to Pauline (I presume you can read it) I am so grateful for you people on here taking the time to answer as my doctor admits he knows very little. I will try the lemon test too but my reflux is, I presume, due to the hiatus hernia and has caused Barrett's Oesophagus so doesn't that mean I can't have too little acid? Although I know when you get older the acid depletes, they found reflux in the tests and as it has harmed my Oesophagus could that still mean it's low but still passed through the hernia? Anyway, am sending for methylcobalamin as my doctor has never heard of it and the NHS doesn't prescribe it. Hopefully that will top me up whereas the cyanocobalamin isn't absorbed? And when I've had the operation fingers crossed I will be cured after I don't have to take H2 blockers any more. Thank you and I will report back about the lemon juice.

  • Hello Poppet, as I said to Pauline (I presume you can read it) I am so grateful for you people on here taking the time to answer as my doctor admits he knows very little. I will try the lemon test too but my reflux is, I presume, due to the hiatus hernia and has caused Barrett's Oesophagus so doesn't that mean I can't have too little acid? Although I know when you get older the acid depletes, they found reflux in the tests and as it has harmed my Oesophagus could that still mean it's low but still passed through the hernia? Anyway, am sending for methylcobalamin as my doctor has never heard of it and the NHS doesn't prescribe it. Hopefully that will top me up whereas the cyanocobalamin isn't absorbed? And when I've had the operation fingers crossed I will be cured after I don't have to take H2 blockers any more. Thank you and I will report back about the lemon juice.

  • The indications are that both high and low stomach acid cause indigestion and any acid that refluxes into the oesophagus causes damage because the area is not made to withstand acid.

    I'm supposing they have established the cause of your hernia rather than just achieved a diagnosis?

    What I find amazing in all these cases is that no one is actually doing the test for low stomach acid (not the lemon/baking soda) but scientific tests.

    I saw a very interesting piece a couple of months back stating (by a b12 expert) that a diagnosis of pernicious anaemia could not be achieved unless the patient tested positive for achlorhydria or hypochlorhydria. Hmm. Since it was only written at the turn of this century, it makes me wonder why it seems to be excluded from most medical definitions of the same.

    Anyway you seem to be content with your findings up to press, so good luck to you!

  • Apologies, I didn't read your last post properly - so apparently I can read, but I can't comprehend!

    There has been so little work done on low stomach acid since the 1930s that a lot of information has actually been lost. Then again, a lot with regard to PA has been lost also! From my understanding, if I didn't make myself clear before, yes, even with low or weak stomach acid, it can reflux back and cause irritation and damage within the oesophagus.

    I'm not familiar with the situation regarding hernias, however it seems to me that one way to resolve the issue one way or another is to have a test done to establish whether you have high or low stomach acid. That in itself causes problems depending on where you are in the world.

    Since both low and high stomach acid cause indigestion then giving a standard high acid treatment to neutralise an already alkaline situation, would, without establishing causation, ultimately make matters worse. Although even acid blockers appear to work with low stomach acid situations when they are initially taken because they stop the reflux. If the reflux keeps recurring even when taking blockers or antacids then the situation would indicate the problem is not with high acid at all but with low.

    I've probably just made that only slightly more clear than sludge!

  • I am just so impressed! The NHS don't do tests for high or low acid. Whatever it is I presume the reflux will be cured when the hernia is fixed! That is the NHS 's reason for doing it...they prefer to give out antacids rather than the op so I am grateful he will do it, I had to insist! In the meantime I've sent for the methylc'in as being a vegan and taking H2's was obviously going to cause it! Waiting for the reflux then I'll try the lemon/bicarb test!

  • You can get a test done in the UK that will indicate if you have low or no stomach acid - but it's not recognised by the NHS. Much, much better to keep throwing acid blockers at people without actually identifying the cause....

    Yes, interesting that a diagnosis of PA cannot be achieved without a diagnosis of achlorhydria - yet they don't actually do a test for achlorhydria. And that is by a UK specialist in the 21st century!

    I hope the op resolves your issues.

  • You can get a test done in the UK that will indicate if you have low or no stomach acid - but it's not recognised by the NHS. Much, much better to keep throwing acid blockers at people without actually identifying the cause....

    Yes, interesting that a diagnosis of PA cannot be achieved without a diagnosis of achlorhydria - yet they don't actually do a test for achlorhydria. And that is by a UK specialist in the 21st century!

    I hope the op resolves your issues.

  • Hi Poppet,

    I've had biopsies done during an endoscopy which showed no achlorhydria, recognised by my NHS GP, it was done privately, but by NHS Gastro, perhaps I was just terribly lucky.

    one can confirm achlorhydria from endoscopy biopsies see:

    emedicine.medscape.com/arti...

    I think PA has many disguises, many that are currently not identified individually but are different forms of the same, just an other link in the cycle of B12 take up/and or methylation not working.

    H2 blockers are not good to use with B12 def, or iron def etc as certain acidity is needed for uptake and or transport etc. Hyper gastremia can result from achlorhydria; if the stomach acid is not acidic enough (PH), caused by the H2 blockers and this then results in more stomach acid being produced to counter the lack of acidity (PH).

    More to read here:

    emedicine.medscape.com/arti...

    Kind regards,

    Marre.

  • Marre and Poppet, it's complicated of course. I thought PA was due to lack of intrinsic factor which means B12 can't be absorbed, very common in older patients, especially if alcohol is involved. Interesting about achlorhydria diagnosis, I wonder if they found it when they did my endoscopy? I don't know why I have a hernia, have had heartburn since I was a child!

    Was watching u tube, a TV prog about a Dr Chandry (?) in Newcastle/Durham who was curing all sorts of symptoms including M.S. with B12 injections, apparently he was nearly struck off as they hadn't passed the NHS guidelines for the deficiency. He has been forced to stop his cures until he did controlled tests, maybe it's been all hushed up I suspect. I am appalled at the incompetence and lack of knowledge in this area!

  • I never answered your original question - rare cases of high b12 levels and functional deficiencies do exist but they are not typical.

    However you have been supplementing with b12 for years by the sounds of it, so it's not a 'naturally occuring level.

    When it comes to the hernia, it could be that it has affected the valve that normal protects the oesophagus that it is affecting (interferring with) or the fact that the hernia itself is trapping acid and letting it back in when the valve opens up to let food in.

    I'm presuming they think it's one or the other and that's why they are operating - and that's why they think you have reflux.

    And it could be.

    Then again they did used to think that all reflux was caused by these hernias. ie everyone who had reflux had a hernia.

    Apparently Marre knows exactly who to go to for tests for achloyhydria - so if you feel the urge you might ask her nicely exactly what to do??

  • Marre, has indeed been very lucky - she's had good neurologists and haematologists and GPs - and have even managed to get a specific test for achlorhydria - if only we were all treated in the same way, Marre! Getting a complete profile for gastric acid secretion is practically unheard of. Wonderful stuff.

    If you tell me they signed you off as unfit for work as well, I will be soooooo jealous!

    I know in the US they don't actually test for low or no stomach acid (low is hypochlorhydria and no is called achlorhydria) as standard. It has to be specifically requested and there is only one test available in the US and Canada and that depends on insurance companies funding. In Europe that same test isn't recognised. Good, yes?

    But there is an unrecognised test which you can do privately although it has to be referred by a professional.

    The clinical definition of PA now includes that of testing positive for Intrinsic factor antibodies. So, the definition has been narrowed from lack of intrinsic factor to actually having the antibodies.

    But the antibodies aren't the thing that cause neurological degeneration (antibodies are only one possible reason why the b12 isn't being absorbed - although the test does not say how badly b12 aborption has been effected in each individual case) - it's the lack of b12 that does that. So, whether you have a b12 deficiency or PA, shouldn't really be the issue. It's how long you've had the b12 deficiency and what damage has been caused while you were deficient, that's the issue.

    The situation that Marre mentioned regarding the blockers works like this. When the PH of the acid is low (which is higher on the PH scale, so anything above 3 in this instance is considered to be low) then this makes the G cells pump out more gastrin. If you take blockers for a 'presumed' high acid problem, when in fact you have a low acid problem, then this triggers the G cells to pump out more gastrin - and you end up with hypergastrinemia. Take more blockers on top of an already low or alkaline stomach acid and you aggrevate the situation.

  • I have only been lucky third time round and this time paying privately for endoscopy/ colonoscopy, listing all the things I wanted checked/ excluded (Chrohns, coalic, H Pylory, Achlorhidria). And that is 30 years later than my first gastro (NHS) appointment. You get what you pay for sadly enough, or time changed things I will never know. But am glad I took steps myself to see haematologist 5 years into conventional B12 treatment. Is sad that its more that an educated patient gets perhaps better treatment, pure cause they have the confidence to self treat and ask for what they think may be needed. Both my girls were diagnosed early in life with B12 def because I told them to mention it runs in our family and both knew how late diagnosis affected me, so when they had blood tests for any reason B12 was tested. they were lucky because I knew what to tell them I suppose.

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