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I am sending you a PM about the details in the question you pose, taking some folic acid with methyl folate.
But here is a link for everyone to read: http://tahomaclinicblog.com/folic-acid/ |
I found a web page with many frustrated patients who had bad experiences with ignorant and arrogant doctors: www.badbugs.org/LabTesting.htm
How do you like this microbiologist's response to a sick person: "Well, you can make your symptoms match any disease you want to, can't you?" One of the most interesting and perhaps important claims of that page is that one test is likely to catch only 50% of the parasites. Ten tests are expected to catch 95%. One patient had Giardia diagnosed only after 8 samples. |
This is totally depressing! In this day and age... appalling.
The B12 ignorance is endless it seems to me some days, the poor Vit D treatments doctors give after testing...are appalling too. And given they charge an arm and a leg to mess everything up is a double whammy.... totally depressing! But thanks for the link anyway... we all need to know how ineffectual medicine and testing are today! Quote:
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It's okay.... I received your PM fine, and sent you a reply!
Thanks so much! |
Mrs. D, I am taking now Vit.B12 (methycobalamin) 2500mcg. I am not sure if this should be the right dosage for me. I have bad burning, prickling, stabbing "pins and needles" in both my legs and arms. Sometimes, the sensations in my arms are tolerable but the sensations in my legs remain consistent. The touch of my clothes, even h ow soft, causes so much pain in my skin. My feet, are always painful making it difficult to walk and stand.
My symptoms are not typical as describe by some that it starts in the feet and progresses upward. Mine was simultaneous in my feet, legs and arms. When I was tested for Vit B12 and Folate Serum (due to another condition) last May 2011, the results were within very comfortable normal range. Since the onset of my neuropathy symtoms last October 2011, I was never tested again. My 2 neurologists just sort of used that May 2011 as the basis. Did I get you right that there is no overdose of VB12? What is the difference between mcg and mg? Thank you. |
2500mcg = 2.5 milligrams
This is not completely absorbed, orally. And yes, there is no upper limit set for B12 by the FDA. If you take it for 3 months and see no improvement at all, you can assume you don't need it. You can then take it once or twice a week, to maintain. You should really get the numbers from your test for a definite answer. Not all PNers have low B12 (below 400 US units). Quote:
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Dr. Sarah Myhill has a nice page on Inflammation with a reference to B12 and Mg:
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New with Questions
I was diagnosed with PA earlier this month. My B-12 levels were at 286, and I was suffering from fatigue, exhaustion, depression, and brain fog.
Immediately upon telling me I was b-12 deficient, my Dr started me on 1000 mcg shots, once per week for a month then once per month. That was two weeks ago. I felt great after the first shot, then crashed down before I could take my second shot. Same thing today, feeling like I crashed down (I am suppose to get my shot tonight). I found this board last week, and after reading about the oral supplement, I add that into my routine this past Saturday. 1000 mcg of Jarrow Methal b-12 as soon as I wake up each morning, then wait an hour before eating. So my question is: how long should it take before I notice if the oral supplement is working? I am continuing the shots on top of the oral supplements. But my goal is to be able to make it between shots without crashing down. At least that is the goal for right now. Thanks in advance. |
The shots only stay in the blood for 72 hrs tops, then the B12
is gone thru the kidneys etc. Hence the crash. Taking the oral daily is much more normal. I'd do 5mg orally for the first 3 months. That way you'll get more per dose. Depending on how long you were low, determines how long to get better. Many things have to be fixed and stay that way. If you get tested after 3mons on 5mg oral daily on an empty stomach, you should see levels over 1000 at least. However tissue repair will take time. Blood levels do not necessarily match repair times. |
that must be why my doc said to do the shots every 3 days?
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I got a copy of my vitb12 result today. It was taken last June 2011 ... its 908. It seems within normal range. Just the same I started taking vitb12 (methycobalamin) last mid Feb/2012 at 2500mcg . When I read your post that there is no toxicity of overdose, I increased it to 5000mcg. Though there is no overdose, is there a safe maximum mcg that one can take in a day? Thank you so much. |
Oh, I think 5000mcg is plenty for most people, if they are careful and take it on an empty stomach.
If you are absorbing it, it should show a large increase in blood work after 3 months or so. If it does not, something is wrong. I tested at the end of the range from a hospital lab, after 3months on 5mg a day, oral. So now I cut back to 2 or 3 times a week instead. (1999 level). Keep in mind that B12 is not the only thing to try. It is just the main/most common deficiency that is hidden for most people with neurological problems. People with DNA errors in methylation, will require methylfolate as well instead of folic acid. |
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Thank you so much. My folate test taken also last June/2011 was greater than 19.9. I will have it tested again in 3 months. Since my numbers on vitb12 and folate serum were fine last June and I am taking 5000mcg, I guess I will just need to lower it down. What would be the dosage if its for maintenance? Mrs D, I am in the process of actively pursuing to find the cause of my neuropathy. Meantime, I am taking the supplements that are recommended in your posts. I truly hope they will help me. I also hope for my thyroid function to normalize so I can take the r lipoic. I followed your suggestion to take vitd3 because of my time limitation in taking calcium. I am now on calcium 600 with VitD 400 and an add'l VitD 2000. You think this is okay? You don't know how grateful I am to your time in answering my questions. This forum has become my source of information and hope. ll have it tested again in 3 months. |
I am in the process of researching folic acid vs methylfolate.
I'll give you the link that karsten sent me about how folic acid may interfere with folate activation and use of methylfolate, esp at the blood brain barrier. I believe the blood work that most labs do does not differentiate between the two. So at this point I am unsure if people reporting "good" folate levels, really reflect folate and not both folic acid and methylfolate mixed. This is a long article and uses words like "may, could, possibly" quite a bit. http://www.ajcn.org/content/87/3/517.long Most of the people who come here with test results typically show normal or high folate in testing. But actually we don't know which folates are being tested. See what happens in the future with your D that you posted. That is the only way to know. |
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As always, thank you. |
The article mentions testing for each one separately.
But I don't know if it is available for people outside research communities, etc. The folic acid/folate thing is rather new, and comes to attention because of food fortification with folic acid (synthetic), and the new attention on the DNA polymorphisms that genetically hamper methylation of B12 and folic acid. These things are all happening at once, and it takes time to reach clinical physicians seeing patients. I don't have an answer for the folic acid/folate question yet. |
high folate=false high b12??
Hi, I new to this site--hope I can ask this here. I keep seeing places where it talks about folic acid masking b12 deficiency. Does this mean it can alter serum b12 levels? I have ALL the symptoms of B12 deficiency, incl. being a vegetarian and taking metformin for 10 years. My Dr was convinced too but the serum b12 came back ">1000" (High). My folic acid is also high. I do take a multi with both.
The only thing abnormal in my labs was my TSH at 9.45. I have had Hashimoto's 15 years, medicated, but had a bad rise for some reason. I'm praying that's the cause of my terrible nerve pain. A Physiatrist diagnosed as TOS, though we haven't done an EMG or nerve cond study etc. And advice/wisdom appreciated. |
B12
I am so going to try this for myself and my daughter
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There are things such as lab errors! Folate is usually high when B12 is low. B12 may be elevated when no supplements are taken, from some uncommon disease states: some blood cancers dysbiosis of the GI tract (overgrowth of some organisms) kidney disease (elevated in some patients and not others). I would have it retested, and also a MMA test added. MMA shows if the B12 is actually working. Some believe it is more accurate. http://labtestsonline.org/understand...s/mma/tab/test Homocysteine is useful but often not covered by insurances. |
Thank you so much for your reply. I wondered abt lab error too. I do sporadically take my multi--which has extra b12. I don't eat a lot of fortified food (cereal, etc), but my new birth control has added folic acid.
What I haven't been able to understand is that many journals say folic acid will mask b12 deficiency--correct the anemia but not the neurological problems--what does that mean in serum labs? Will a serum level show high b12 that is not accessible to the cells? I do not think it's a kidney/liver problem--they did a full panel and I know my creatinine, etc were good. The only other off number (besides my TSH) was very low WBC--but I have always had that and no Dr seems to look further. I will ask for another lab, I was thinking about the MMA too. Wondering if a urine might be helpful. |
There is a difference between folic acid and folate.
Folic acid is synthetic and may compete with natural folate at the blood brain barrier, and this may cause problems. Folic acid is methylated thru a system called the MTHFR reductase system, and if you have a genetic error in DNA (which is not rare---10-30% may have it) you cannot activate B12 either or folic acid to their active forms in the body. http://advances.nutrition.org/content/3/1/21.abstract http://www.plosone.org/article/info%...l.pone.0024976 (this article shows folic acid is not active.) http://www.ajcn.org/content/87/3/517.long These articles were sent to me by poster here, Karsten. You can see it is a complex subject, and hence even doctors will have some difficulty answering your questions, and/or interpreting the test results. I'd consider getting the DNA polymorphism test to see if you can activate/methylate properly. This typically runs just over $100 without insurance. |
Thanks heaps
This helps so much. It's nice to have someone to talk to about this.
I have many posts to come. Sue:) |
I have low B12
This is my first post on this forum. I am really glad to have found it, as I've been recently diagnosed with low B12, but my own research has been more valuable than my doctors' knowledge on the subject.
My level tested in February was 204. The doctor who found this gave me a shot of B12 and I felt better almost immediately. He said that I'd get another one in a month, and that if I wanted to in the meantime I could take B12 supplements or didn't have to (see what I mean about doctor's lack of knowledge?). A few days after the shot I tried a 3000mcg sublingual B12 pill and it drove me crazy. I immediately called the doctor office and they said that if I'm getting the shots once a month I don't need the pills. I immediately stopped the pills. Nearly a month went by and I started to feel very sick. I would get very weak, confused, fatigued, feel like the life was just sucked out of me. I began to have spots in my vision and felt like I was going to pass out and die. I called the doctor office a couple days early to request the shot as I think I was experiencing symptoms of low B12. They gave me the shot and that evening I felt better again. This lasted all of two days and I felt just as sick as I did that day I called their office. I went back to talk to the doctor who said you only need it every month and the levels should go up. I knew then and there I'd have to go to a different doctor to get more B12. I called my primary care physician with tears in my eyes (because I was so weak and sick I thought I was going to die, literally) and went into his office and begged for more B12 injections. By the way, I had tried another sublingual tablet prior to this office visit and again had a terrible negative reaction. It just made me feel crazy and sick. My therapist said it was likely the sugar additive ingredients that did this, this one in particular was xylitol. She said she's seen it make others sick before, and many just can't tolerate them. My primary care obliged and gave me intramuscular shots that I could give myself. He gave me cyanocobalamin, and I seemed to do OK. I took it more often than he prescribed based on a treatment protocol I found online. I went back to his office and requested methylcobalamin shots and that I could have them every-other-day for two weeks, then maybe once a week for a month then re-assess. I haven't taken any shots in a couple days, and I already feel out of it. Confused, in pain (not sure if this pain is specifically from this, but I am wondering if it is...), fatigued, feel sick like I may pass out. In any event, I will give myself the last of the two-week every-other-daily dosings tomorrow morning of 1000mcg IM methylcobalamin. My question is in regards to daily oral dosings. I am reading on this thread and another website (the Rose's website) that one can take 1000-2000 or more (up to about 5000) mcg of oral cobalamin (in either cayno or methyl, or others) every day and have just as good results, because regarless of the fact that if you have intrinsic factor or not, you will scrape just enough from a mega dose to get enough you need (1-10% of the pill). My question is this - given I cannot tolerate sublinguals (and is this heard of? does anyone else not have the ability to tolerate sublinguals for some reason?), would I be OK to try an oral dose, one that is not sublingual but is rather swallowed, and later absorbed by the intestine? I do not know if I am missing intrinsic factor or not. That was my reason behind trying sublinguals. However, I found that for whatever reason I just cannot tolerate them. I am so confused and disturbed by this. I do not know why my levels are low or where this came from and for how long I've had it. I have a range of strange things going on with my body, and I'm not sure how much is attributed to low B12 or is from other factors (recently stopped almost 10 years of antidepressant use, had some horrific adverse reactions to one of them, was on a mega dose of another that I shouldn't have been on, etc.). I have a lot of strange pain and cracking in my upper back and joints, almost like fibro like pains up there. I have a lot of cognitive difficulties (forgetting things, feeling detached from reality, having a hard time focusing and learning new things), and I had many classic low b12 signs like pallor, heavy breathing, confusion, dizziness, low appetite, bleeding gums, greying of hairs (I'm 30!)and other things. Any advice anyone could give me would be greatly appreciated. I am so glad I ran across these threads. J |
Welcome to NeuroTalk:
I swallow the sublinguals. They can really irritate the mouth IMO used under the tongue. Injections only stay around for 72 hrs, so some people swing up and down with B12 especially when low. Low levels also prevent the normal movement into the spinal cord and brain, and this confuses the enzyme systems that require methylB12 to work properly. Some people cannot methylate cyano to the active form, and that is a genetic error that can be tested for. MTHFR DNA polymorphism test. http://labtestsonline.org/understand...mthfr/tab/test This genetic error is pretty common thought to be 10-30% of people! It also affects folic acid which needs to be methylated to methylfolate in the body to work. You can ask your doctor for Metanx RX vitamin which has the active forms in it. Take that on an empty stomach. And take your oral B12 on an empty stomach too for best absorption. Only a few micrograms are absorbed from each daily dose (of 1000mcg), but this is what the body is used to so over time you will do better. Our bodies were not designed to be flooded with injectable synthetic cyanocobalamin B12, so some people feel odd, or sense the swinging of the blood levels as unpleasant. |
Thank you for your fast reply! :)
I can't tolerate the sublinguals at all. Would it be possible to swallow a non-sublingual and to get the needed amount of B12 that way? I can't tolerate the additives in the sublinguals. :( Thank you, J |
You can try switching the brands. I find the Puritan's Pride one very soluble, small and with less fillers than Jarrow.
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I am experiencing a lot of "brain fog" and feelings of hard to breathe and very weak. Is this common with low b12 that may have gone on for a long time? When I have the shots I feel fine. I gave myself a shot this morning when I woke up, the cyanocobalamin one though, as the methylcobalamin can sometimes give me too much energy. This is really frustrating. How long before I will feel better from all this treatment? Some days are better than others, I notice (up and down recovery?) |
All companies do not use the same fillers. The Puritan's Pride ones are very different IMO. The inert ingredients are mostly
to improve flow of the powder and are not absorbed if at all. Puritan's has various vegetable cellulose, mannitol, magnesium stearate (not absorbed), natural cherry flavor. Not much to react to. No one can say for sure because everyone is different. But if you notice a significant difference between methyl B12 and cyano injections, then I'd question your ability to convert cyano well in the tissues. There is always up and down with B12 in some people. The tissues take it up differently and the movement into the brain and spinal cord can take time. Also the liver is storing up extra from each dose for the future. People who are severely anemic may experience some low potassium as the extra cells gobble up potassium from your other tissues. So eating a potassium rich diet may help you. A can of V8 juice has over 800mg of potassium. |
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Are there any brands that don't have these in them, that I can just swallow and I just get the vitamin? |
There is so little mannitol in it and it is not absorbed.
I seriously doubt it. Large (and I mean large) amounts can be laxative in some people, esp the xylitol. If you chew sugarless gum or have sugarless mints, either mannitol or xylitol is in them as well Timed release is useless-- to absorb orally you need immediate presence in the small intestine to work. Empty stomach is best as well. Timed release just doesn't release enough fast enough. I don't know why it is made even...maybe because it "sounds" good? The amount absorbed from 1000mcg B12 tablet is about 10micrograms thereabouts.. that is a minute amount. These are the inert ingredients for Puritan's methyl B12-- Quote:
http://www.puritan.com/vitamin-b-12-...000-mcg-032860 Exactly what reactions are you having? I'd get that homocysteine tested... to see if you are not methylating properly. Consuming folic acid....also is a problem if you are not methylating. |
The reactions are hard to explain. I got too much energy and felt crazy. I couldn't think and my thoughts were all over the place. My stomach got upset and I got a lot of gas. I had to frequently urinate and the urine smelled awful and was a funny color. I felt terrible. My therapist whom I told said it was the xylitol. She says she's seen others react kinda similar, feeling crazy, etc.
I just need a little bit of daily intake of B12, but I do not want to "feel" the vitamin, if that makes sense. The shots are up and down, which is awful. I take other vitamins (ironically enough, a multivitamin that contains only 18 mcg of B12, which I am obviously not absorbing). I don't "feel" those vitamins at all. So, I dunno. Would I be able to "not feel" a B12 oral that I swallow, the non-sublingual kind, do you think? Thank you |
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None of my docs would attempt the injections for fear of an uncontrolled reaction. Liiqiuid sublingual was deemed the safest for me. There are nerve pathways under the tongue that readily accept the methylcobalamin and send it directly to the spine and then on to where the b12 is needed. I was told this is my best hope of repairing my memory and pain. Methyl is the type of b12 you need to use because is works best for neurological problems. My 5 yr neck pain, level 10 is alleviated when I am able to take enough. I am allergic to cobalt. I cough constantly when taking the several doses of 20mcg...yes, mcg not mg...NOT the case for most. I'm hypersensitive and that small amt is keeping me alive with some benefits. After that first 1500, I used 1000mcg for a couple weeks, then 750mcg, then 500mcg..was taken off the b12, my cough and other side effects stopped the next day...back on at 200, then 100, then down to 10mcg per day. I am trying to desensitize my immune system to the cobalt. I can tollerate 60mcg now but...new hernia at my sternum from the cough...lovely. So, point is, everyone is different...yes, I feel crazed with too much, yes, hard to breath, eyesight blurry, feel like you're dying, everything,..my hands can't feel eachother. But, I am so darned sensitive that the b12methly has restored most of my memory. I can read again, can think quickly...motivated. for 2 weeks I had leg and feet pains, then moved to my arms and hands..this pain is from nerves regenerating, I was told by my Neuro. B12 supports the myelin that covers the nerves.It's padding so they don't get frayed, sort of. Sorry this is so long...wanted you to think even harder for a reason you can't tollerate this vitamin. Is it the preservatives, additives, is it too much at one time, taken at the wrong time for you??? It's taken months for several docs and myself to come close to my answer and we're not there yet. ...so frustrating.... good luck to you.. deb... |
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It is not really believed that B12 is well absorbed sublingually, as the molecule is really huge and the area under the tongue is so small. The studies comparing oral B12 to injectable, measured serum levels, and response to swallowing oral, and they both compared over time with improvements. There are people who have "chemical sensitivities" and react to many things. Chemical sensitivities are not well understood, however. B12 is so small a dose, it is not going to be obvious in the urine. Other B's however, do cause color changes, and B1, will impart an odor which some call "yeasty". B2 and B6 typically cause a yellowish or light greenish cast in the urine about 2-4 hours after taking. People reacting so quickly, may have a genetic issue with methylation. Folic acid is affected by this too. Folic is synthetic like cyano is synthetic, and so there is an active form for it available now for the genetic people who cannot make activated forms of both vitamins B12 and folic acid. It is called methylfolate and is OTC. Solgar makes it. There is a theory that methylation issues contribute to some mental issues. Rapidly thinking thoughts, is a hypomanic state, and bipolar disorder is thought to be a methylation disorder. The drugs used to treat it block methylation of DNA. The Pfeiffer institute has a site to explain this: You can read this paper by Dr. Walsh and discuss with your doctor/therapist: http://www.alternativementalhealth.c...s/pfeiffer.htm It is possible you are triggering something that you normally do not feel, with the B12. Certainly for people very low for very long times, there is an adjustment when the B12 is first given. But this varies from person to person. There are other forms of B12 that are slower in onset than methyl. You can try one of these to compare: This one is recommended for those to are over reactive to the methyl form: http://www.iherb.com/product-reviews...lets/2454/?p=1 |
Thank you for all your help.
It is amazing how up and down I feel. Yesterday morning I felt "anemic." I had a hard time breathing, had absolutely no appetite, felt dizzy, could not think, etc. Sometime around 3:00 in the afternoon I felt yesterday morning's shot of cyanocobalamin kick in (apparently by body can methylate it well) and I felt better. Not great, but better. I had a bad evening again, where I felt a lot of pain and felt horribly depressed and confused. Today, I felt more "stable" and "even." I felt pretty good. I looked in my sharps container and I've given myself 8 injections so far. Is it normal in the beginning of this to go between a good day and a bad day so rapidly like this? I am afraid of going only once a week. My therapist recommended that I keep taking the shots every other day for this week and calling my doctor if I need more shots and ask him to continue every other day if I have to. But this can't be normal, right? No one takes these shots every day or every other day on a normal basis. I found a B12 pill that is not a sublingual that I am willing to give a try. It is a capsule form, and is only 500mcg. The only other ingredients in this (besides the caynocobalamin) are rice flour, gelatin, and beet powder. I don't think I should "react" to any of these. I know it's only 500, but I could not find any 1000 mcg or higher that didn't have any sugar alcohols in them. Would it be OK, if I try this 500 and don't negatively react to it, to take two 500's and get the diffusion effect? Is it OK that it's a capsule? I read that it takes about 20 injections to fully reload the liver of it's depleted B12 stores. Will these up and downs finally even out at about that time? Also, since B12 is stored in the liver, could it be that I have a liver function problem? I see B12 deficiency is really only caused by diet or absorption issues, but do you know if there are any B12 deficiency caused by liver problems known? I also voiced my concerns over the high boost of energy I get from the methylcobalamin form to my therapist, and she suggested I try maybe 500mcg shots instead of the full 1000. Any ideas on this? This B12 issue is so complex. I wish it were just as easy as take a tablet everyday, feel better. It really doesn't help that I'm also in the thick of antidepressant withdrawal and maybe other health issues as well. Thank you, Jason |
There won't be a problem with the B12.... you may need two of them, and take on an empty stomach.
However, if you have the polymorphism, the MTHFR error, you won't be able to activate cyano form and it won't work. If you are anemic you may be making red blood cells very quickly and this depletes POTASSIUM. Low potassium can make you weak and shakey. So massive dosing to methylB12 should be accompanied by potassium rich foods. If you take diuretic drugs for other reasons, you could be very low in potassium. Also magnesium. |
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I tried to post a reply but for some reason it didn't get posted. Supposing I don't have the genetic error (what is this by the way?) then I would be able to convert the cyanocobalamin for my body to use, right? I didn't react to it, so I should probably be OK to take 2 capsules a day, correct? Tomorrow morning I plan to take 500mcg of methylcobalamin shot. Would it be OK to take the cyano capsules as well? I still really don't feel very well. Completely up and down. One day I can feel OK, the next day I could feel like I'm dying again. Is this normal in the beginning? What again is this genetic error and would there be any other indicators that I'd have it? Thank you |
I wish I could tell you what to do....but we are not doctors here.
Seems to me if you inject MethylB12 you don't need oral cyano. Anything further I think you should seek out a physician who can test you out to see if your B12 is working. The test is called MMA. This will answer your question hopefully. If the MMA is elevated, that would be a bad sign, and point to further testing to see if you have the MTHFR mutation, which is a DNA test. Without answers to specific tests, no one will know what is really going on with you. |
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I have an appointment with a gastro-enterologist on May 1. I also submit a request to be contacted by a doctor at a neurological center close by. I will continue the methylcobalamin B12 shots and hopefully will feel better soon. I have to realize that I didn't get this overnight, so it might take a long time before I feel things getting better. The trouble is, that after the shots, I ALWAYS feel better, just depends on the number of hours after the shot depending on the type of B12. I just hate the feeling when it wears off and I feel very sick again. Just was wondering if that was normal, especially within the first few weeks of treatment for low B12. |
The injections do wear off quickly for some people.
One of the references I use, states that the cyano form only remains in the blood serum for 72 hours. I have read that methyl B12 is cleared faster even. Our bodies are designed to have 2-10mcg absorbed orally when things are working well. (intrinsic factor present and active). So I tend to recommend oral high dose 5mg on an empty stomach daily, to mimic the normal absorption pattern. Over the years there have been some who report this swinging effect up and down. I think the B12 is just being sucked up by the liver and brain very fast in people who were very low. The oral way may be more gentle. This product is partially activated form of B12. It may be better than cyano orally, but less quickly utilized and hence slow down the swinging responses: http://www.iherb.com/product-reviews...lets/2454/?p=1 I would take it on an empty stomach too. I'd watch your folic acid intake for a while. Try not to supplement this yet, and see if you tolerate better. If you do take folate, take the methyl form..MetaFolin. People can have genetic errors in activating these two vitamins -- it is called methylation errors.(MTHFR) |
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