1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

High b12 levels and my story - Not sure where to post this, sorry!

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cazzzzzy, Aug 8, 2012.

  1. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Hi there... I wasn't sure where to post this and I have never had a diagnosis for ME/CFS, I have had quite a few doctors mention "you maybe have CFS as that would explain why you feel how you do etc". But never had a doctor follow this up as I have had anxiety so anxiety is always the final diagnosis (even though I am not anxious anymore) :(

    I have had blood tests, all came back "ok" apart from my vitamin b12 being high... I also had a high white count but after a follow up blood test the white count returned to normal (??) ...... I have never found out exact numbers etc as I have a lot of memory problems and always forget to ask. The b12 level being high was never followed up either (???)

    My symptoms are and have been getting progressively worse over the last 3 years:
    Difficulty walking - My legs get EXTREMELY weak, heavy and tired and they drag, I can only walk a max of 100 metres, then I have to sit and rest and when the little bit of energy returns I can manage another 100 metres - and then repeat this over and over each time getting harder and harder :(
    Everything I do every day is the same - tackle a little - too weak & tired to carry on - when recovered go again - over and over again.
    I also get very unbalanced & dizzy and so much more but memory is bad so cant list all here.
    I get numb patches in my legs and tingly and a lot of muscle spasms in my legs.
    I thought it could be MS but my doctor said I didn't have MS without checking me over at all!!!???!!!

    I am just sooooooooooooo fed up feeling so weak and heavy and tired and was wondering what tests I can ask for to explain what is happening to me?
    My vitamin D is ok, had that checked too and I have sent off a blood sample to York Tests to see if any food allergies are causing this - only did this yesterday so no results yet!
    I also tried some iron tablets a few weeks ago as I though maybe my iron was low but got very dizzy and had to stop!

    Not sure I am posting this in the right place, I guess I am just seeking an explanation and wondering if vitamin b12 has anything to do with all this as nothing else showed up in my blood results???

    Was very freaked out when reading that high b12 can mean cancer but my doctor tells me I don't have leukemia.

    xxx
     
  2. Crux

    Crux Senior Member

    Messages:
    583
    Likes:
    212
    USA
    Hi Cazzzzzy;

    Very few docs understand B12 deficiency, and even fewer understand ME/CFS. It's understandable in part because test results can have multiple meanings.

    A high serum B12 could mean many things, such as liver trouble, bacterial overgrowth, and more than I know of.

    So I'll focus on your symptoms because I've had the same ones. They appear to be very much like mine. Supplementing with B12, Folate, and B-Complex has relieved them in my case.

    I had my B12 levels tested after I began supplementing, so I don't have personal experience with your situation, but I know of some docs and researchers who treat these symptoms with B12 anyway.
     
  3. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Thanks so much Crux!
    So is it safe to take even more B12 if my levels are already so high? I am just worried that I might overdo the B12 as I thought maybe the reason I feel so bad has something to do with it being so high..... Sorry I just get confused with it all!
    What B12 do you take? After reading on here I see there are many different types and am trying to get my head round it all...... Do I need to take Folate with B12?

    Thanks Crux xxx
     
  4. Crux

    Crux Senior Member

    Messages:
    583
    Likes:
    212
    USA
    Hi Cazzzzzy;

    It would be best for us to find a practitoner who could best treat our idiosyncrasies. I gave up rather easily, and took to my own devices, although I see an internist and an endocrinologist to get some tests. I then get the results, and look them up myself.

    Vitamin B12 is considered to be very safe. Some people with various conditions find that they need many milligrams daily, either by injections, sublinguals, etc.

    I understand your fear, my levels are above 3000 pg/ml. But I've become used to having some abnormal numbers in general.

    I found that through working with my symptoms, I need 5mgs. of sublingual methylcobalamin every day. If I take less, the neuropathy returns. It can be difficult to determine one's individual needs, especially at first. Nerve damage can take many months to heal, and sometimes there will be periods of increased sensitivity.

    I now take AOR brand, but folks here are having good results with NOW, Blue Bonnet, Solgar, and Enzymatic Therapy brands.

    Folate and B12 are supportive of each other, and folate is particularly good for fatigue, I find. I take 800 mcg. of it daily. I take a low dose B-complex daily. ( I'm sensitive to some B's )

    Since I'm not at all qualified to do anything but try to be supportive to you as another person with neuropathy, I can only suggest that you find what works best for you. But I'm happy to try to be helpful.




    .
     
  5. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Thanks so much Crux! You really have been so helpful! :)
    I bought some of the B12 you mentioned today but then only to receive a phone call from the YorkTest to find out I had a positive result so I have a food allergy.... (Maybe explaining my weakness and B12 being high)
    When I have the money in a couple of weeks I will pay for the further test to find out what I am allergic to!

    In the meantime I am trying to work out what allergy would cause all the extreme weakness I am having. I had cornflakes this morning and could hardly walk due to exhaustion by mid morning so I will avoid corn flakes but I realize that some allergies don't appear until days after sometimes..... Oh well will know more soon and thanks again for your help! xxx
     
  6. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Hi, Cazzzzzy.

    High serum B12 can be caused by a functional B12 deficiency. In that condition, there is enough B12 in the body, but the cells are not able to use it properly, so they export it back to the blood, and it builds up there, bound to haptocorrin. After about a week, the haptocorrin-bound B12 is imported by the liver and recycled via the bile to the gut. This is the salvage and recycle pathway for B12. The cells of the body in general are not able to use this B12. Only the liver can import it. The other transporter of B12 in the blood is transcobalamin, and this is the one that carries B12 from the gut to the cells in general.

    High serum B12 per se is not harmful, but it indicates that there is an issue with B12 utilization.

    According to the GD-MCB hypothesis, a functional B12 deficiency is part of the pathophysiology of ME/CFS, and it is caused by glutathione depletion. Some of your symptoms sound as though they could be part of ME/CFS. If you would like to check into this further, I recommend that you view this video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    You can get the slides by clicking on the blue print below the video.

    Best regards,

    Rich
     
    Crux likes this.
  7. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    386
    Virginia, USA
    I have a few of questions, if you don't mind:

    Do you have gastrointestinal issues such as abdominal pain, bloating, diarrhea or constipation?

    Shortness of breath?

    Regarding the food allergy, do you take antacids?

    Sinusitis, rhinitis or migraine headaches?
     
  8. Nielk

    Nielk

    Messages:
    5,444
    Likes:
    5,862
    Queens, NY
    Nanoong,

    I have similar symptoms recently. I have the feeling of weakness and heaviness in the body.
    Numbness, tinglingand swelling in hands feet lips and tongue. I am experiencing bloating and constipation.

    I just had a nerve conductivity test done on my legs on Friday and it showed that some nerves in both legs had no reaction at all. The doctor asked if I have Diabetes but, I don't. I guess this test shows Peripheral Neuropathy?

    The Neurologist is sending me for an MRI of the brain and neck.

    What do you think this could be?
     
  9. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    386
    Virginia, USA
    If you have all those symptoms above, I suggest you look into mast cell issues.
     
  10. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
  11. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,193
    Sth Australia
    I strongly suggest to ask if you can get copies of your blood test results and keep them all together in a file.

    Doing this is very wise for several reasons 1/ you can take with you to any other doctor you see without having to rely on test results being sent on which doesnt always happen. 2/ You will always have good references to your own results esp good seeing you have a poor memory 3/ Some times doctors dont actually tell people when something is out of range as they may not be aware of the implications of it.

    The symptoms you have may be ME but of cause can be other things too. Unfortunately often other illnesses can be missed. I used to get a heap of MS symptoms including loosing feeling to heat, numbness and leg drag with a foot drop (for myself it just happens one leg) due to the ME.
     
  12. alice

    alice Senior Member

    Messages:
    106
    Likes:
    30
    No. CA, USA
    What is considered a "high" serum B12 level where a person would become concerned that it was something besides the explanation that Rich gave above?

    Cruz mentioned a level of 3000 pg/mL - would that be considered High? IOW, at what point would one be concerned about high serum B12 levels as pertains to diseases that are referenced in ric's post?
     
  13. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi Alice, any B12 level that is above the recomended referance range, that hasn't been caused by excessive B12 intake, should lead to an investigation of the diseases mentioned in the links in my last post, some of them are very serious and a delay in diagnosis could have bad consequences. Most labs say that a level above 900 pg/ml is to high but there can be some variance between different labs.

    Hope this helps

    All the best
     
  14. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Thank you all for your replies!!! x

    I've been to the docs today as I had a test for celiac and malabsorption tests and went to get results...
    Ok celiac test result hasn't actually come back yet but b12 I found out is now 1220...
    I am still feeling absolutely awful, can not walk far, always dizzy (especially after any form of exercise - I now see exercise as going up and down stairs as it is exhausting!) so weak!
    The symptoms I have really do resemble a b12 deficiency which makes me think maybe I have an absorbtion issue?
    My home test kit for celiac came back positive and I now haven't eaten gluten for 10 days but although my head feels a tiny bit less foggy the weakness persists...
    Doctor I saw today really wasnt very helpful as I tried to explain to him how I feel but I think he was trying to push beta blockers on me like my other doctors :(
    I really dont think he knew a thing about b12 issues... I said they looked high and he said "well do you take supplements?" I said no, he then said "well you must eat well" I said no as I have no energy to cook well and I am a veggie but he completely ignored this and just tried to find a way to get me out I think.... He stood up and opened the door.....
    I am just so fed up with feeling so weak... don't know where to go from here as my doctors always put it down to anxiety even though I am not anxious!!!!
    It really doesnt help but I cant help crying when I go to docs but it is because I am sooooooooooooooooooo fed up with this weakness and its not anxiety like they say!!!!

    Is there a test available I could do at home to test b12 absorbtion?
     
  15. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    Hi....
    Not so much gastro issues... only lately when I have stopped eating gluten my movemenets havent been "normal"

    Yes shortness of breath!!!

    Haven't taken antacids and am not 100% sure on the allergy results yet....

    Always stuffed sinuses!

    Thank you xxxx
     
  16. Cazzzzzy

    Cazzzzzy

    Messages:
    21
    Likes:
    1
    So if I do have absorbtion problems of b12 would the sublingual supplements help like injections would?
    My brain doesn't work like it used to so sorry if it's a silly question :/
     
  17. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    386
    Virginia, USA
    Your symptoms are consistent with mast cell activation syndrome. I invite you to look into this thread for additional info: ME/CFS is a mast cell disorder (hypothesis).
     
  18. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    72
    u.s.a.
    hey sorry for your trouble

    seems like you could try to get more information, I dont see why they couldnt rule out MS, perhaps you could press your doctor. it helps to get organized writing things down before you go in, research what tests you think would be good in your situation and prioritize and try to get a few things agreed upon at doc meeting. I dont have time right now to find list of good tests that might relate to your situation but I agree ruling out MS good idea and you can find more info on tests on cfs at these sort of forums, from time to time they get compiled.
     
  19. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Hi, Cazzzy.

    I'm sorry that your doc was not very helpful. Generally speaking, docs are not up to speed on functional B12 deficiencies. They do know about absolute B12 deficiencies, but a high serum B12 is confusing to them.

    "Absorption" usually refers to absorption of nutrients by the gut, which passes them into the bloodstream. In the case of B12, the cells of the gut normally bind it to the carrier protein called transcobalamin. This normally carries the B12 to the cells in general, and they take in the transcobalamin with the B12, break down the transcobalamin, and then use the B12 to make both methyl B12 and adenosyl B12 in the amounts needed by the cells.

    The fact that you have a high serum B12 level means that your gut is absorbing B12 well and is binding it to transcobalamin well. I think it is likely that your cells are importing the transcobalamin-B12 combination well, but that they are not able to utilize it properly, so they are binding it to haptocorrin and exporting it back to the blood. This has about a one-week residence time in the blood before it is imported by the liver, and the B12 is recycled via the bile to the gut. Some is reabsorbed, and some passes into the stools.

    There is a test called holotranscobalamin that will indicate how much of the B12 is bound to transcobalamin in the blood, by comparison to the total serum B12 measurement. A physician's order is needed for this test.

    There is another test called methylmalonic acid, and it can be measured in either the blood or the urine. If it is high, it indicates that the cells are not making enough adenosyl B12, and thus that there is a functional B12 deficiency. However, in ME/CFS, many people are low in B2 or B6, and some are low in histidine, and these deficiencies can mask the methylmalonic acid test, keeping it low when it would otherwise be high, because of a functional B12 deficiency. This test is part of urine organic acids panels, which you can order from www.directlabs.com, without a doctor's order. Either the Genova Metabolic Analysis Profile or the Metametrix Organix Profile will give you a methylmalonate measurement.

    I think that the best test is the methylation pathways panel offered by Health Diagnostics and Research Institute. It requires a blood draw. With a doctor's order, it costs $295. If you order it through Dr. Ben Lynch, it costs $325, I think, with his interpretation. This can be done via the internet. and Dr. Ben will sign as the ordering physician. It will still require a blood draw. This panel will tell you about your glutathione level, your methylation cycle, and your folate.
    It does not measure B12 directly, but a functional B12 deficiency can be inferred from the other results, if they are abnormal.

    Best regards,

    Rich
     
  20. maryb

    maryb iherb code TAK122

    Messages:
    2,920
    Likes:
    2,054
    UK
    A lot of your symotoms are very common to sufferers of ME. Your GP sounds typical of the majority, they basically are not interested, can I suggest you look at Dr Myhill's site which gives a lot of info.
    Food intolerances/allergies are also very common, but of course allergies produce a more severe and potentially serious reaction. If you test positive for celiacs you will get help from the GP but if not its difficult. Tests like the York one are not always reliable. An elimination diet would be the best route I would suggest.
    Gluten and dairy are usually the 2 that cause most problems, being a vegetarian it probably would be difficult for you?
    I sympathise so much especially with the 'heavy legs', when all you want to do is walk and do stuff, but your body is telling you it cant. Feeling so ill and getting no support from your GP is so difficult, most of us have been there.
    I too was told it was anxiety, if you believe it is okay take the meds - but if not stick with your gut feeling, medication just means more work for your body to de-tox. Same with beta-blockers, why is your GP prescribing them? I was put on them when admitted to hospital (without being told) - it seems another stock response to something they can't be bothered to find the root cause of - but again if you think you need them then take them.
    Can you find anyone in your area who has a more understanding GP? Most are rubbish but I do know some people have been helped so always worth exploring, thats all I can think of for now, but you're not alone, we all suffer the same horrible symptoms, wondering WTH.
     

See more popular forum discussions.

Share This Page