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Cannot tolerate oral B12 – causes shortness of breath and tachycardia. Why?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by LynnJ, Mar 12, 2014.

  1. LynnJ

    LynnJ

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    I seem to have a problem tolerating B12. :(

    When I initially began supplementing with methyl B12 (Jarrow sublingual 5000 mcg), I chewed one pill in the morning on an empty stomach without problems. The B12 was a HUGE help to me. I’ve been suffering from mysterious, often severe pain in the shoulder and collarbone areas, as well as odd symptoms in my feet: burning, tingling, pulsing, painless muscle twitches that are also in the calves, and increased sweating.

    The B12 caused both the issues in my shoulder and feet to vanish! I was 100% better. I also felt less tired. Alas, a little over one month after I began to take the B12, I started experiencing shortness of breath and an increased heart-rate. At first I didn't make the connection.

    Fast forward a good five months filled with useless doctor appointments in which they told me I had anxiety, and I FINALLY figured it out. It was the B12! Within 30 minutes of taking a B12 pill I start to get short of breath. Sometimes I REALLY have to gasp for air; I just feel like I’m not filling my lungs properly. As you can imagine, it’s extremely uncomfortable and frankly alarming.

    The problem is, without B12 the terrible pain in my shoulders came back with a bang, and the problems with my feet are slowly creeping back as well. Today, quite frankly, sucked big time in regards to my symptoms. :ill: Was pretty much falling asleep in the car on the drive back from work today. Not safe!

    After talking to some people in another forum who thought I might just be sensitive to methyl B12, I bought Perque Hydroxocobalamin sublingual 2000 mcg pills. I let one dissolve under my mouth instead of chewing it. Unfortunately, I had the same exact issue with them as I did with the Jarrow B12.

    I don’t understand why B12 seems to cause these problems. I’ve found a handful of people online who describe the same side effects, but all in all this seems to be an unusual reaction. Most sites say that B12 is well tolerated by the average person. For reference, my B12 level before I began supplementing was around 490, but the doctor did a standard blood test versus a urine test (I’ve heard the latter is far more accurate).

    Does anyone have any advice? I’m lost, and none of the doctors I see seem to know ANYTHING about B12 or vitamins in general. They’re clueless! :bang-head: I'm having an MRI done on my neck soon to see if they can find a specific issue, but I'm dreading it. God knows it'll show nothing and I'll be back to square one, unable to get a diagnosis and unable to treat myself. I so badly want to take B12 and feel healthy again, but I don’t know what to do! Should I try Cyanocobalamin? I know people badmouth it, but I’ve already tried the preferred methyl and hydroxyl B12…
     
    Last edited by a moderator: Mar 12, 2014
  2. Martial

    Martial Senior Member

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    I would keep using the b12 and always the methyl form, sounds more like you have low potassium from the increased demand after taking b12 supplements.. This is very common with b12 deficiency and 490 is not a clinical deficiency by some standards but people with pernicious anemia and they're practioneers consider this to be too low, ideally you should be over 1000 and that goes for anyone. The most important test to take too is an active b12 test to find how much you are actually using in the body rather then liver storage.. Anyways methyl b12 won't cause any harm and you definitely need to add methyl folate if you are using it otherwise you will urinate the majority out and get about 10% of its benefit. The most important thing to do besides adding folate is to really up your potassium intake as its being used too quickly to create new cells and you need enough so that these new cells can grow and not cause severely low potassium levels.. Potassium deficiency can be FATAL too..

    You can find out much of these recommendations from Fred's protocol in this site.. He goes into how to recognize and treat paradoxical folate deficiency, potassium deficiency, and other useful things that have proven to be very effective alongside the b12 and folate.. Both Adob12 and L Carnatine Fumarate..

    Here is a link to that page discussing it!

    Again I think your best bet is to continue using 5,000mcg lozenges of the b12, then adding in methyl folate and REALLY upping the potassium intake!


    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/
     
    katim likes this.
  3. justy

    justy Senior Member

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    I had a reaction to MB12 injections - the dose was too high so I tried a lower dose and was fine. good effects lasted about a year then stopped working. as martial says potassium could be an issue, but I think we all need to be aware of the dangers of taking too much potassium. as a trial you could take one after the b12 and see what happens or try a banana or some coconut water straight away. If these measures clear up the problem then its pretty clear that the b12 is causing a drop in potassium.

    In terms of adding in methlyfolate or any of the other recommended supplements then I would urge caution if you have M.E - some people experience an issue with does too high and need to start very slowly with low doses.

    all the best,
    Justy
     
  4. LynnJ

    LynnJ

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    Are there any specific brands of methyl folate and potassium supplements you recommend? I know with some vitamins/minerals not all brands are created equal. That info might be in the thread you linked to, though.

    The one thing that might complicate this is that I’m on Spironolactone, a potassium-sparing diuretic. A quick Google search turned up the following advice: “You may also need to avoid sodium or potassium based supplements while you are on your medication. This includes avoiding potassium rich foods such as prunes, banana or orange juice.”

    I haven’t been avoiding bananas or orange juice, though!

    Interestingly, another website said “Spironolactone may also deplete folic acid.” It also said diuretics can cause higher levels of homocysteine.

    I had my potassium checked BEFORE I started taking B12, and it was 4.2. So that was my starting point… I’ve gotten it checked once since I’ve started supplementing, but they never told me the result.
     
  5. maryb

    maryb iherb code TAK122

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    Why not try a smaller dose of b12? or they say all the b vits should be taken to get most benefit - would a low dose b complex be a better way to start?
     
  6. whodathunkit

    whodathunkit Senior Member

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    Maybe try folate before you try potassium. Solgar is a good brand.

    But be aware that adding folate can also increase need for potassium. As your cells begin to "wake up" as methylcobalamin and methylfolate beneficially affect the methylation cycle, they may use more potassium, thus increasing your overall metabolic demand for the mineral. Just because you're on spironolactone doesn't mean you don't need extra if your metabolic demand increases. The warning probably stems from people who eat a lot of high potassium foods while on spironolactone, but who don't also experience increased metabolic demand for the mineral.

    If it was me I'd probably try methylfolate first. Monitor yourself closely. Do you feel better or worse? If better, then great! Carry on!

    If worse, then try potassium a bit at a time, and watch yourself carefully to see how you do.
     
  7. LynnJ

    LynnJ

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    I've been experimenting with lower doses, but they don't seem to be as effective. With the 5000mcg I honestly felt CURED. Like, ZERO SYMPTOMS. That's not happening with the smaller doses I've tried thus far. Sometimes I feel like they're doing nothing at all, to be honest.

    It definitely sounds like I should give the potassium and methylfolate a go. Are most potassium and methylfolate supplements created equal, or...? I know with B12 most of the stuff available at chain stores like Walgreens and Walmart is pretty bad. I ordered my Jarrow B12 online.

    Any dosage recommendations?

    Thanks for the help, guys. I really appreciate it. I felt so awful today at work. My feet were burning and tingling like there was no tomorrow, and it felt like my shoulders were about to just rot off.
     
  8. whodathunkit

    whodathunkit Senior Member

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    Consensus seems to be that Solgar is the best for methylfolate.

    Country Life methylcobalamin 5000mcg, product #6304 is good. Other CL products are supposedly not as effective so make sure 6304 is on the label.

    Enzymatic Therapy methylcobalamin 1000mcg is also good. My main beef with it is that it has fructose in it. Small amounts, sure, but they may still harm teeth, especially if you go to sleep with one in your mouth. I do these days, as I take my last dose of methylfolate right before bed. So I'm on CL from now on. But ET does taste better than CL, and both brands are good.

    Other brands don't seem to be as effective, according to Freddd and others. Jarrow really doesn't seem to work as well, even in my relatively inexperienced opinion.

    Put the B12 lozenges between teeth and gums and hold there for at least an hour. Not as bad as it sounds.

    Start low and go slow with the folate, esp. since you're already responding to the B12. I advise reading heavily around the forum in old threads to learn what symptoms and setbacks people have experienced on their roads to recovery. It doesn't seem to be a straight upward trajectory for anyone. More like a scatter plot with an overall positive slope.

    My main advice about potassium is don't get pills. Potassium pills sit in your stomach like little lumps of lead and cause gastric problems. I had problems with them a while back when I was on Atkins diet--felt like they were eating a hole in my stomach--and lots of others on this board seem to have had problems with the pills, as well. So get some powder. Potassium gluconate or potassium chloride. NOW is a good brand. Put the powder in juice so it doesn't taste like ass. It's vile if you just put it in water. But powder doesn't seem to cause many stomach problems. Powder may cause some irritable bowel symptoms if you take too much, but it won't hurt your stomach. It will just bother your intestines. LOL

    Again, start reading heavily. The more you can learn the better off you'll be.

    HTH.
     
  9. CaliObserver

    CaliObserver

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    What is your potassium (K) level on your most recent blood CBC? Have you ever tried taking about 500 mg of potassium gluconate an hour so prior to taking a 1000 mcg B12 as a test? Have you tried a smaller dose, or even a much smaller dose such as 1/8 of a lozenge?

    My low potassium symptoms are not exactly what @Freddd describes, but I have definitely verified that they are my signs of hypokalemia. Primarily, it feels as if my whole body clinches up and it is very painful. I also get painful arm spasms. I am sure there are more, but I have not identified them for sure yet. I do suspect other pain I have is low K as well. At this point, I would not be surprised to find that your collarbone/shoulder pain is related to low potassium. It's only a guess that your odd foot thing is neurological in nature and B12 is correcting that. From what I understand, active B12 drives potassium demand and use, so perhaps you would not need it with a much smaller dose of B12 and your issues can be cleared at the same time.
     
  10. LynnJ

    LynnJ

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    The clavicle/shoulder pain happened well before I began taking B12. In December 2012 it was 3.9, and in April 2013 (right before I started taking B12) it was 4.2. Unfortunately smaller doses of B12 do not seem to help my pain/feet neuropathy as much.

    The sad thing is I’ve done so much research on this in the past year that I have to limit my computer usage, otherwise I just keep doing more and more and more research. This forum seems like it’ll be a great resource, though. I just wish I had some concrete answers. Does B12 usually help people this much when the cause for the pain/neuropathy is something unrelated to the B12 itself? Initially I thought that because the B12 “cured” me while I was taking it, that must mean B12 was the underlying cause for my issues. Now, I’m not so sure. I just find it baffling how the B12 had such a massive impact on my clavicle/shoulder pain and the tingling/burning/stinging in my feet.

    I’ve been taking Naproxen these past few days for my shoulder pain, and it’s actually not really working. That surprises and confuses me even further!

    I was a member of another forum for chronic fatigue, neuropathy, vitamin deficiencies… It covered a lot of different topics. I’m wondering if anyone can confirm or deny some of the things I learned there:

    Firstly, that chewing or swallowing a B12 tablet whole is bad, and that all B12 tablets should be dissolved as slowly as possible. I won’t lie, I always chewed my Jarrow pills, and obviously something must have worked because my symptoms vanished. However, that doesn’t mean the way I was doing it was ideal. Should I generally always hold them against my gums/under the tongue for as long as possible?

    Secondly, I was also told taking B12 with food is bad, and that it should always be on an empty stomach.

    And thirdly, I was told sublingual/oral B12 could be just as good, if not better, than the B12 shots.

    Would anyone recommend I get my methylmalonic acid or homocysteine levels checked? Or anything else...? I don’t know if my doctor would order them (he’s clueless about B12), but there’s an independent lab nearby that can do bloodwork. I could always see if they offer the tests for a reasonable price.

    I wish I knew of a doctor who was good with B12/vitamins in general. Almost every doctor, whether he was a family practitioner, internist, neurologist, etc. has been utterly useless with it comes to vitamins. Maybe a nutritionist/dietician…? Does anyone know of any B12 specialists who might do phone/email consults? Ugh. I just have no clue where to go. I’ve spent thousands on useless doctor appointments already.

    I have an MRI of my neck scheduled for this week. I feel like that'll be more $$$ down the drain.
     
  11. ahmo

    ahmo Senior Member

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    @LynnJ, I wouldn't waste money on more tests; they're notoriously unreliable. My progress is now all based on my symptoms, including increasing folate and B12. I agree that adding folate and potassium should be the next step. Freddd, who was very very ill, talks about nerves turning on in the healing process, leading to discomfort or pain, temporarily. He also has discovered the "Deadlock Quartet", of which all 4 ingredients must be included to allow healing to proceed. These include MethylB12, Methylfolate, AdenoB12, and carnitine, either ALCAR, or, as was the case for me, L-Carnitine fumarate (LCF) Once I finally added the fumarate form of carnitine, my situation really improved, and has continued improving.

    I've also just watched a fascinating video from Dietrich Klinghardt, autism and pyroluria expert. I've been using his protocol to remedy my pyroluria (which I uncovered and treated without lab tests). But this video is so much more. He links autism, several conditions he calls "adult autism", including Parkinsons, MS, ALS, and Lyme disease. Lyme is not just a tick-borne problem, it's also congenital. And he emphasizes the need for detox, detox, detox, and remove EMFs from you field. I highly recommend it. Best to you, ahmo

    A user-friendly short version of Freddd's Protocol is
    http://howirecovered.com/active-b12-therapy-faq/

    Klinghardt: Autism, Lyme, Pyroluria
    http://www.youtube.com/watch?feature=player_detailpage&v=-z3kRDYcvhA

    Powerpoint presentation from Klinghardt vid:
    http://www.klinghardtacademy.com/images/stories/powerpoints/hpu 2009.pdf
     
    Last edited: Mar 16, 2014
  12. LynnJ

    LynnJ

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    Alright. Well, I'm going to order some new B12 (maybe that Enzymatic Therapy brand), potassium powder (Now Foods), and Solgar folate. It sounds like my best bet would be to start with those three? I know some people are talking about additional supplements (carnitine), but these seem like the holy grail. Correct me if I'm wrong. A lot of what I'm learning here is different from what I've been told/read elsewhere. Anyone have any recommendations on how much of each vitamin to take per day? I see the folate in particular comes in 400 mcg, 800 mcg, 1000 mcg, and so on.

    I've been taking the Jarrow 5000 mcg B12 pills these last few days even though I don't have any potassium on hand, and sure enough I'm short of breath...but a little less so than I thought I'd be. HOWEVER, I haven't noticed the generally quick improvement of symptoms that I get with B12. I've been letting the pills dissolve under my tongue instead of chewing them as usual. Not sure if that makes a huge difference or anything. Just thought it was interesting.

    Again, major thanks to everybody here for your assistance.

    I'm going to start reading that user-friendly version of Freddd's Protocol. Looks like it's recommended to take mb12 AND adb12? Interesting...

    There's just so much info and so many recommendations. I won't lie, it's a little daunting. I feel so darn confused about everything that's happening to my body right now.
     
    Last edited: Mar 17, 2014
  13. whodathunkit

    whodathunkit Senior Member

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    Hold off on carnitine until you see how you react to the B12/folate combo. I found l-carnitine fumarate (LCF) to be very potent and can only tolerate about half a capsule of it. Acetly-l-carnitine (ALCAR) doesn't do much for me. Some people are opposite. But the main point being is that you probably don't want to use it right at the beginning of a regimen with folate/B12.

    With your symptoms already occurring just from B12 I'd also be cautious with folate. Maybe start with 1/2 of a 400mcg pill per day, and then work up from there. How fast you go depends on how you react.

    You will probably also want to research and read up on "Paradoxical Folate Insufficiency", "Donut hole folate insufficiency", and "methyl trap". Try to educate yourself as much as possible. These reactions to folate/B12 can give you unpleasant side effects so you need to get educated on how to avoid or get yourself through them in case they occur.
     
  14. liverock

    liverock Senior Member

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    Spironolactone is given to treat a high sodium/potassium ratio which probably means you already had low K before starting B12. The neck and shoulder pains are common side effects of low K as well.
    When checking for low potassium I take half a wine glass of V8 low sodium juice and increase intake until symptoms abate.
     
  15. LynnJ

    LynnJ

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    I ordered some potassium powder (Now Foods brand). Should arrive tomorrow.

    I noticed Freddd recommends taking adb12 in addition to (Jarrow) methylb12. Would you all agree with that?

    I also know someone here said they don't like Jarrow, but he specifically recommends that brand... Has that changed or...?
     
  16. pela

    pela Senior Member

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    Jarrow methyl b12 appartently changed about two years ago and became ineffective for many people. Since then Freddd has recommended Enzymatic Therapy B12 infusion and recently, Country Life Methyl B12 5000 mcg.

    Yes to ADB12. It is marketed as dibencoplex (Anabol Naturals) or dibencozide (Source Naturals) Other brands tend to contain folic acid, so check the label before buying.
     
  17. pela

    pela Senior Member

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    I agree that blood tests are a waste of money. At this point you will be measuring how much supplement is in your blood stream, not how much B12 is in your tissues.

    You might try a naturopath. I went to one and got a rx for injectible Methylb12. I inject 1000 mcg daily. I also use sublinguals. Freddd has said that he finds injectible methyl B12 to be a varying quality, that's why he likes the more reliable sublinguals. When you use methyl b12 sublinguals, it is not necessary to have an empty stomach, just don't eat or drink while the tablets are in your mouth. B12 absorbs very slowly, so the longer it is held between the cheek and gum, the better. I always try to two hours.
     
  18. LynnJ

    LynnJ

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    Ah, I see. Well, I'll use the Jarrow until I order a better brand. I think something in it is causing canker sores. Had the worst outbreak EVER last Thursday. I've been going to sleep with one tucked between my upper gums and cheek - I usually fall asleep around 10:30-11:00. The other night I had to use the bathroom at about three in the morning, and the stupid thing STILL hadn't fully dissolved.

    I got my Now Foods Potassium Chloride today in the mail. It says to take 1/8 teaspoon 1-3 times per day. Does anyone disagree with this dosage or would suggest something else? I just took 1/8 teaspoon (and then added like HALF of that) into my glass of water. URGH! It tasted odd. Made the water sort of smooth/silky tasting and just...bleck. I'll try it in juice next time, I think.

    This shortness of breath and racing heart sucks, but I've already seen a big decrease in my debilitating shoulder/clavicle pain, and my feet aren't burning and stinging as badly as before. Hopefully this potassium works. Otherwise I dunno what I'll do. Without the B12 my feet burn so badly I can't stand comfortably for more than 20-minute intervals at a time, and God, the upper body pain is brutal. Like nothing I've ever felt before. It's odd to think this could be caused by a B12 deficiency. I just...never would have believed it. And maybe it isn't - maybe it's something else entirely. But when B12 works THIS well, it's definitely suspicious.
     
  19. pela

    pela Senior Member

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    Canker sores are a good indication of induced folate deficiency. How much folate are you taking? Also Jarrow Mb12 contains citric acid which some people find irritating. I would go ahead and order one of the better brands. Why wait? Is it worth it to save a few bucks? You can use up the Jarrow along with the new one.

    Does the potassium bottle say how many mg of potassium are in that 1/8 teaspoon?
     
  20. LynnJ

    LynnJ

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    I still have to order some new B12 and folate from Amazon. I was going to take 400mg of the folate (possibly cutting the tablets in half, even) until I know how I tolerate it.

    Yes, it's 365mg for every 1/8 teaspoon.
     

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