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sick for over a year, recent B12 labs in..need help interpreting

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by pg600rr, Apr 3, 2013.

  1. pg600rr

    pg600rr

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    30 y/o male, sick for 14 months now with a myriad of symptoms. Have been seen in all the major Boston hospitals by 35+ specialists...etc. etc. Wont go in to full story or all the testing and results here, but in regards to B12. I do have many of the symptoms of B12 deficiency.

    However when tested serum levels are always mid-range (usually around 500), MMA is always low but homocysteine is always slightly raised (around 15 range 0-12). MTFHR I am only 1298AC the heterozygous, NO 677. With these findings and my symptoms/lack of firm diagnosis I was able to get my doc to order some other related labs. Here were the results of those:

    ANA: Neg

    Gastric Paritel Cell Ab: Neg

    Fasting Gastrin: 15 pg/mL Range: <101

    RBC, HGB, HCT: always just at lowest level of "normal" or just below

    B12: 514 Range: 180-914 pg/mL

    B12 Binding Capacity: 480 'LOW' Range: 650-1340 pg/mL

    My question is, what do these indicate? Given the IF, fasting gastrin and gastric parietal ab's, PA is all but ruled out. However, the low b12 binding test results, if I understand things correctly, suggests that while I may be getting B12 from my diet, my body is not utilizing properly? with that said, I wonder why my MMA level is always fine?

    The ordering doc was doing it as more of a favor and has no idea what to make of the results.... he has offered to provide b12 injections to see if they help with any of my symptoms.
  2. caledonia

    caledonia

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    What I've heard and of course, I can't remember the source, is that the low range on the B12 tests are too low. If it's lower than 700 than you're deficient. It's almost better to go by signs and symptoms. I would consider taking up your doctor's offer and do a trial. Make sure it's not cyanocobalamin. Methylcobalamin would probably be best. Hydroxycobalamin may be ok too.

    The amount from an injection may cause some detox, so if it's too much, stop, and wait for symptoms to clear out, then restart at a lower dose. "Rinse and repeat" if necessary.

    You may want to consider doing the HDRI methylation panel to see what your methylation function looks like, and a full methylation SNP panel (31 SNPs, not just MTHFR).

    Read and watch the links in my signature for more info.
  3. ninauae

    ninauae

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    what are your symptoms so far?
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Started a "conversation" with you, if you want to know who my Dr is?

    GG
  5. rlc

    rlc Senior Member

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    Hi pg600rr, the low b12 binding capacity result means that you do have enough b12, but your body isn’t able to use it properly.

    I’ve had a look around on the net, and the cause of low B12 binding capacity appears to be malabsorbtion syndrome see http://en.diagnosispro.com/differential_diagnosis-for/vitamin-b12-binding-capacity-lab-decreased/10102-153.html there may be other causes but I can't find them.

    If the problem is malabsorbtion syndrome, unfortunately malabsorbtion syndrome is caused by quite a few different diseases, so you will need more test to find out which one it is see http://www.webmd.com/a-to-z-guides/malabsorption-syndrome-topic-overview and http://www.nlm.nih.gov/medlineplus/malabsorptionsyndromes.html more detailed info on malabsorbtion syndrome and how to find the cause here http://www.merckmanuals.com/professional/gastrointestinal_disorders/malabsorption_syndromes/overview_of_malabsorption.html

    Have you been tested for iron, folate, calcium, magnesium, potassium and vitamins K and D, deficiencies in any of those would make malabsorbtion syndrome likely.

    Of all the different causes of malabsorbtion syndrome, celiac, lactose intolerance and internal parasites e.g. worms, gardia etc are probably the most common.

    My opinion is that it would be a good idea to get your doctor to check you for malabsorbtion syndrome, as from what I can find on the net, it is the only cause of low b12 binding capacity.

    Hope this helps

    All the best

  6. pg600rr

    pg600rr

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    \

    Hey, here is the list, prior to 8/2011 I was in the best shape of my life and have always been very active, never had a single health issue my whole life prior.

    Around 8/2011 started having small bouts of general malaise, nausea, bloating, sporadic pinpoint rash on stomach/chest, slight fatigue (but none of this was severe enough to stop me from going out, running, etc. etc.)

    Then in 11/11 and 12/11 had 5 day bouts of the above symptoms but much more intense, actually missed my fam x-mas, felt like flu without a temp. In 2/12 things went downhill really fast, felt acutely sick with something. No appetite, dizzy, weak, achey, and all the above symptoms at their worst.

    From there I've noticed the following, in varying degrees, some of which I still have, others which have faded for the most part in the past 14 months:

    Overall Symptoms Experienced:
    -GI symptoms (nausea 24/7, gas, bloating, distention)

    -hairloss

    -mid/low back pain (dull)

    -fatigue

    -chest tightness

    -orthostatic tachycardia [diagnosed with POTS by Dr. Freeman @ Beth Israel]

    -diagnosed with NLD small fiber nueorpathy via skin biopsy of R thigh, but follow up biopsy in same areas refuted this, showing nerve fiber density 100% well within range

    -lost 20 lbs. 2/25-3/15, unable to gain any back

    -body temp has been running very low, 96.5-97.2 (was never like this)

    -not sleeping well (fall asleep fine, toss and turn, waking early unable to fall back asleep)

    -constant varying levels of dizzyness/lightheadedness

    -feel very cold alot, especially hands and feet

    -whole body feels very sick

    -sporadic dull headaches (usually just above/behind eyes but varies)

    -muscles in legs, arms upper back feel tight/achey from minute I wake (horrible feeling)

    -left side gland under tongue (almost feels swollen on the inside, like something is in there) can pinpoint exactly where this feeling occurs; submandiblur gland?
    -usually have feeling of adrenaline rush through body upon waking in the a.m.

    -very sporadic, non-itchy rash, just blotchy, usually in center of stomach/chest area, sometimes on neck or ribs


    -restricted breathing through nose (often have to sleep breathing only through mouth)

    -numb spot left of spine center back that comes and goes
    Current Symptom:

    -feel very cold alot, especially hands and feet

    -shortness of breath randomly

    -chest heaviness/tightness

    -fatigue

    -orthostatic tachycardia

    -not sleeping well (fall asleep fine, wake up often and early)

    -muscles in legs feel tight/achey (usually worse in a.m.)

    -not gaining any weight back

    -GI (low level nausea, gas/bloating)

    -hair thinning

    -sporadic numb spot left of spine center back

    -finger tips get prune/wrinkle (seems to happen when cold)


    Labs/Tests That Have Been Off:


    -chest CT revealed nodule in left lung (has been their unchanged since 2004 though, docs think just some scar tissue)

    -homocycteine has been slightly elevated multiple times

    -D has been slightly low

    -8% atypical lymphocytes when in ER early on in this

    -mild postural orthostatic tachycardia (noted on several AFT's)

    -sinus cyst shown in sinus CT

    -various non-sepcific metabolic markers off on mito workup

    -various lyme labs have shown specific bands

    -b12 binding capacity low

    -retinal flame hem

    -RBC, HGB, HCT always just below normal or at base of normal, PLTs run very low in range

    -testosterone levels in range but very low for my age group
  7. pg600rr

    pg600rr

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    Hi, Thanks for the info, very helpful.

    I will check out the links, but of what you've mentioned, i.e., celiac, lactose intolerance and internal parasites e.g. worms, gardia etc all of those have been checked for multiple times...for celiac I've had genetic testing (neither gene was found), biopsies, blood tests, etc. Had stool tests for the worms/parasites, and two breathe tests that were neg for lactose intolerance...

    Malabsorbtion would make sense though, given the fact that I cannot seem to gain any of the weight back that I lost, even on a high cal diet (3200/day) provided by my RD. Just need to fid out whats causing it!

    Iron, folate, calcium, magnesium, and potassium levels have been checked multiple times and are always in range, don't think I've ever had a vit K test done, but vit D is always slightly low.

    Any thoughts on what to do to help correct this low binding, short of correcting a possible malabsorption issue? I know it was referenced above to start b12 injections, I've only been offered cyno and that's probably all that will be avail to me for now...I could get the oral methyl or adeno supps to try...but would oral supps still work for me?

  8. rlc

    rlc Senior Member

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    Hi pg600rr, your list of symptoms would certainly be consistent with malabsorbtion syndrome, especially all those gut symptoms, weight lose and fatigue etc. there are lots of possible causes of it, some are quite rare, like amlyloidosis and Addison’s. The best information on it I know of is the Mercks manual article see http://www.merckmanuals.com/professional/gastrointestinal_disorders/malabsorption_syndromes/overview_of_malabsorption.html

    On this page you’ll find when you click on Fig 1 it takes you to this http://www.merckmanuals.com/media/professional/pdf/Evaluation_malabsorption.pdf which explains how to find the disease causing the malabsorbtion. It says that initial tests should include CBC with red blood cell indices, on these tests you say you have “RBC, HGB, HCT always just below normal or at base of normal, PLTs run very low in range.” Which I think means along with your symptoms you would qualify to have the other tests done to find the cause.

    If I was you, I would print out the diagnosis pro page that says that low B12 binding capacity is caused by malabsorbtion syndrome, and the Mercks manual pages and ask your doctor to look into investigating you to find a cause of malabsorbtion syndrome.

    Can’t promise that there isn’t another cause of Low B12 binding capacity that isn’t listed on diagnosis pro, but malabsorbtion syndrome would seem to me to be something that should be investigated as a possible cause of your problems, and certainly worth discussing with your doctor.

    Sorry I don’t know of anything that can lift B12 binding capacity, apart from finding and fixing the cause.

    Hope this helps

    All the best

  9. nanonug

    nanonug Senior Member

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    You have lots of symptoms. In my opinion, the only way to go about this is to systematically test for every single single under the sun. However, I would probably start with GI testing. I personally like the Metametrix GI Effects Complete Profile.

    I do have a couple of questions: do you wake up at night to pee? Do you think you pee too much?

    Good luck!
  10. Victronix

    Victronix Senior Member

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    Hi pg600rr, the low b12 binding capacity result means that you do have enough b12, but your body isn’t able to use it properly.

    Regardless of the cause, if you have a B-12 binding problem, you may be deficient, which can affect literally every part of the your body since B-12 is required for nerves.

    Given that, I would suggest you try a sublingual B-12 (which will bypass malabsorption issues) -- many people who do shots also take sublinguals on days they don't have the shots. The kind most recommended on here is Enzymatic Therapy (http://www.swansonvitamins.com/enzy...&cagpspn=pla&gclid=CJ-1nMv4t7YCFaF7QgodGmIAhg).

    Most typical doctors will balk at anything but cyanocobalamin shots, a synthetic form of B-12 that contains a cyanide molecule and which is problematic in terms of effectiveness. I was diagnosed with B-12 deficiency and chose not to do any shots and instead did sublinguals. For some people that is not enough. If you can find a doctor who will do methylcobalamin shots, those are the most effective.

    If you take B-12, you also need to have a B-multi to balance out the B's, or you can end up irritable and agitated. Douglas Labs makes a good one if you can handle the methylfolate in it (http://www.professionalsupplementce...g&matchtype=&gclid=CNuG_IT6t7YCFYFxQgodknMATQ). If not, there is a very simple and cheap B-multi without any folic acid or methylfolate (http://www.naturemade.com/products/b-complex/b-complex-with-c). I was unable to handle the methylfolate, however most people can handle it.

    There is much more to this whole topic (http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/), but for now, I'd say the most important things to try out are B-12 and a B-multi and then see how it goes.

    Keep posting and checking in with questions. There is a massive amount of info on here . . .
  11. pg600rr

    pg600rr

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    Hi,

    That's basically what I've been doing for the past 14 months, all kinds of various imaging scans, biopsies, labs, all done multiple times.

    Early on in this I was waking 3x/night to pee, now I would say maybe once, but usually never... (maybe once a week I'll wake up at night to pee). Not sure why I was waking to pee so much in the beginning, but I think it correlated with the high fluid/sodium diet that I was put on to try and combat the POTS symptoms. So it may have been a result of that..

    As far as GI testing, I've had 3 endoscopies, 2 colonoscopies, 2 SIBO, lactose and fructose breathe tests, 2 GES, and a Smart Pill procedure at MGH, multiple labs including genetic testing for celiac, etc.

    I've yet to go the alternative medicine route (either for testing or treatment) which is what the Metametrix stuff looks like? I am really open to just about anything, but I also don't want to waste resources, if you think they are a reliable company I'll def. approach my doc with it.
  12. pg600rr

    pg600rr

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    Hey,

    I am scheduled to start shots next week, however I only have the option of cyno avail to me at this point...worth doing anyway? I will def get some of the methyl subs to take on my off days, cant hurt right? from what I understand b12, regardless of form, is fairly benign..

    From what I've read, you start with the B12 for a few weeks then add the b-multi, does that sound right? basically you allow the body to get a good build up of b12 then add the b-multi to balance out.

    Why would one not be able to handle the methyl folate? I did watch a documentary that said if your truly b12 deficient, with something like PA, and you add methyl folate it can actually make the b12 deficiency worse, and cause more symtpoms?
  13. Victronix

    Victronix Senior Member

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    Hi,

    I'm not surprised that cyano is the only option that mainstream doctors will provide. They are incredibly ignorant about B-12 in general and can create worse situations for patients by telling them to decrease, rather than increase dosages.

    One issue with injections is the schedule. They typically start off giving several shots in a short period of time and then those drop off to once a month. People naturally become very deficient waiting for the once monthly shot and it becomes a roller coaster situation where they get the shot and are up all night, then get worse as the month goes on.

    I personally didn't feel comfortable with the disparity between the information and recommendations online regarding b-12 (methylcobalamin) versus what the Kaiser doctors were saying I should do (cyano injections). So I opted for sublinguals and Kaiser agreed to that reluctantly. If you have a deficiency, and you take a sublingual, you can notice effects within minutes.

    Often times a solution to a complex problem takes time, something that doctors at big institutions don't have, and an open mind, which most also often don't have. Most people on here have had to spend quite awhile seeking out unique doctors who make the time to do the research, who go to conferences, write papers, and broadly think outside the box.

    Its hard to go from trusting western medicine to realizing there are a lot of problems in the whole system, even as they can also save lives and do incredible technological surgeries. It takes time to make that adjustment, if you do. Cyano is one example of that problem -- it won't kill you to get a shot, but it will likely confuse things a little. And if you are looking for the answers to a complex problem, you have to consider the role of a type of B-12 that is much more difficult for the body to effectively use being injected into you, and the complexity it adds. I wouldn't tell you not to have the shots if you feel you want to try it. Just keep in mind they can muddy the water in terms of a solution.

    The important thing is to try the sublinguals. I started the B-multi early on and it was fine. I don't see any reason to wait on taking that.

    The only reason one might have a hard time with methylfolate is if they are deficient in it and it causes side effects. Most people have minimal side effects. In terms of the interaction with B-12, it is recommended that you have sufficient B-12 before starting methylfolate. I'm not an expert on that, however, as I'm in that process myself, having taken B-12 for several years and now starting methylfolate for the first time.

    Here's a little of what Fredd has posted about the B-12 situation:

    B12 INJECTIONS
    The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way. In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak. http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    I recommend reading that thread if you get the time.
  14. nanonug

    nanonug Senior Member

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    Although Metametrix caters to the alternative crowd, their labs don't do anything out of the ordinary. The test I recommended above was the one that found for me a huge overgrowth of Morganella morganii and the return of Helicobacter pylori. Nothing my GI doctor did found these two. In particular, getting rid of Morganella took care of my diarrhea problem.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Re: B12, cyano is not only inactive but has a by-product of cyanide. This is not likely to e much of a problem unless you are taking large doses, but who wants any cyanide in their body? One person nearly died of it, though taking large doses of cyano.

    You can also get symptoms from adding methyl folate because you would be stimulating the methylation cycle and promoting detoxification. If you have a heavy metal burden, they can be released into the bloodstream and cause symptoms. You also could be creating a greater need for potassium and need to supplement it.

    Hope this works out for you--wishing you the best.

    Sushi
  16. pg600rr

    pg600rr

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    So two quick updates...

    Just came from one of my doc appts. I mentioned to him the finding of low b12 binding capacity, he said this was a good thing as it meant more b12 was free in the serum to be absorbed? The way he explained it made sense but it doesn't seem to match up with what little I've read on it.

    Is he correct? why would they have a range of 600-1000 for b12 binding capacity if the lower the better??

    Also, not sure this is related to this specific forum but he ran some tests, one was c4a and the other was Vascular endothelial growth factor (VEGF). The C4a was elevated well out of range and the VEGF was well below range...combined these indicate some sort of biotoxin mold illness being present. Here were the definitions I found:

    VEGF

    Normal Range: 31-86 pg/mL
    Vascular endothelial growth factor (VEGF) is a substance made by cells that stimulates new blood vessel formation and increases blood flow in the capillary beds. VEGF is a polypeptide. Deficiency of VEGF is quite common and is a serious problem in biotoxin illness patients that must be corrected. If you don’t have blood flow, cells begin starve and don’t work properly.

    C4a

    Normal Range: 0-2830 ng/ml
    C4a has become the inflammatory marker of greatest significance looking at innate immune responses in those with exposure to Water Damaged Buildings (WDB).
    The complement system is a group of proteins that move freely through your bloodstream. The proteins work with your immune system and play a role in the development of inflammation.
    Each complement activates inflammatory responses, with spillover of effect from the innate immune response to acquired immune response and hematologic parameters.
    These short-lived products are re-manufactured rapidly, such that an initial rise of plasma levels is seen within 12 hours of exposure to biotoxins, and sustained elevation is seen until definitive therapy is initiated.
  17. Arizona Girl

    Arizona Girl

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    I was diagnosed with mold illness on May 28, 2013, my husband on June 26, 2013, by one of the 4 doctors in the country certified by Dr. Shoemaker to diagnose and treat mold illness. I know what our lab results are from which the diagnoses were made. You are correct that your lab results are consistent with mold illness. So are your multi-systemic symptoms.

    Patients with mold illness are often not believed by medical doctors, because the attitude is that no one could possibly have so many different seemingly unrelated problems. Mold illness patients do. We have the weirdest symptoms, blood pressure all over the place, peeing constantly because we can't keep water in our bodies, 60% of us experience shocks from everything - car doors, door knobs, light switches, you name it, we get shocked because our osmolality is all screwed up, breathing problems including air hunger, intestinal tract problems, our intestines start being unable to handle large proteins, like gliaden in gluten and the components of dairy products, and almost all of us have leg pain and cramps especially at night, racing heart and palpitations, and that sinus cyst could be MARCoNS, like both my husband and I have in our noses for which we are now using BEG spray to knock it out. And the MARCoNS seems to have been the cause of irritable bowel syndrome in me, and multiple food intolerances, in that it triggered Mast Cell Degranulation Disorder, by dripping down my throat to my intestinal tract where it was poisoning my system and wrecking havoc with my digestion. Depression and anger management issues are particularly common in men, too. Both my husband and I also have MTHFR mutations, the compound mutation C677T and the A1298C, and other snps including for me ++ for CBS, COMT and MOA A, but the big problem for us both is the mold illness. Now that we are both under treatment for that, our health has turned around amazingly fast. I could tell the difference in 24 hours after starting treatment, and I have just gotten better on a daily basis.

    What most people do not understand (and that certainly included me prior to my diagnosis!) is that mold illness is not like any other allergy. If someone has one of the 6 haplotypes that are susceptible to mold illness, exposure to mold spores, or even pieces of dead mold spores, will provoke an innate immune system response called Chronic Inflammatory Response Syndrome (CIRS) that doesn't quit. That is, just getting away from the trigger, the mold spores, will not stop the cascade of autoimmune destruction of just about every system in the body. It takes two things to recover from mold illness: 1) intervention to stop the inflammatory cascade and get the innate immune system to stop the destruction of the body and 2) getting away from the trigger. It takes both, not just one. The other issue with mold illness is that it is not dose dependent. Even small amounts of mold spores, or pieces of dead mold spores, will start the inflammatory cascade of destruction if someone has previously suffered from CIRS. "Sicker Quicker" is the short hand for that issue. I would suggest that you look at www.survivingmold.com for more information. And get to a doctor that knows how to treat it. The good news is that it is treatable. Good luck.

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