I understand that methylcobalamin is absolutely life-giving to many. However, some people do have severe adverse effects and I hope to discuss that here. Hopefully we can avoid getting unnecessarily worse!
I was originally given very high daily doses of methylfolate (1000mcg) and methylcobalamin (5000mcg) sublingual for 4 months and had a number of severe reactions both physical and psychiatric that landed me in the ER.
I didn't understand the effects at the time, and I'm not sure why I responded this way. I suspect it has something to do with genetics. I am not sure if I will ever tolerate the methyl form.
I stopped due to the adverse effects and immediately developed the clear neurological signs of B12 deficiency, even worse than before.
My Dr gives me cyanocobalamin now, but that helps very little with my neuropathy and quickly wears off. I supplemented 1000mcg methyl once every other week for three weeks, and the neuropathy has responded considerably. However, even that small amount of methyl is excruciating- palpitations, diarrhea, cystic acne, burning skin, severe anxiety. They last for weeks after the dose.
As a commenter said on another forum, "I feel like my brain is being microwaved!" The psychiatric side effects rival that of B12 deficiency, so it's quite a pickle to be in.
As MTHFR treatments become more popular, I'm reading more stories like mine. Often the side effects were not expected. Clearly, methylcobalamin is not without side effects for some people.
If you had adverse reactions to methyl, did they go away? Did you acclimate? Do you tolerate other forms? Do they help with neuropathy?
I'm not trying to discourage anyone from taking methylcobalamin since I know it helps so many, just trying to get the side effects on the radar
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Allyson1
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Hydroxocobalamin really blew me away... BIGTIME anxiety, near panic levels, after just one 1000mcg dose... also seems to have messed up my stomach... significant bloating, no appetite, etc... still not over it 2-3 weeks later. Methylfolate gave me a bad reaction too, but not nearly as bad and didn't last as long... I took a very small dose to try it, thank God!
I was looking at the 23 and me website yesterday and it looks as though they no longer test for MTHFR. I may be mistaken but don't assume and order without checking.
23 and me don't provide the MTHFR analysis directly but once you have the 23 and me results you go to the geneticgenie.org website and carry out a Methylation Analysis using the raw data that 23 and me provide. This then shows if you have the mutations for the MTHFR gene.
I did this a few weeks ago and it works well. It confirmed that I have the double mutation for MTHFR C677T. So I am now supplementing with methyl folate. No noticeable side effects so far.
I am taking Pure Encapsulations B-Complex Plus which has 400mcg Methylfolate and 400 mcg Methylcobalamin in each capsule. They seem pretty good. I find them easy to swallow. I have been taking one a day for a month now and I am not getting any side effects so far.
If you've had your autosomal DNA tested with a different company (like FTDNA - they call it Family Finder) then you can use this utility - y-str.org/2013/06/autosomal... - to convert. You do need to know how to run a Command Line application in Windows.
Yes I did. I am homozygous A1298C they said, plus some MTRR, MTR and CBS off the top of my head. I hear a lot of good things about methyl vitamins from MTHFR C677C people, but I don't have that.
I've tried three different brands, the lowest dose 500 mcg. I didn't feel any benefit, but I still had side effects. I'm scared to try it again, even a crumb.
I've just been reading that it's the dibencozide (otherwise known as cobamamide or adenosylcobalamin) form of B12 that repairs the myelin sheath around your nerves and that the methyl form is not effective for nerve damage. The link was on this site a couple of days ago. It looks as though a combination of the two is most useful. I've just ordered some from Amazon and will post how I get on.
You don't smoke, no? (Just read the study on the link.) On the glass half full side - this is a useful clue. You may have a rare genetic reaction. I and my son have taken loads of methylc - no bad reaction, as you say, an improvement for him, maybe for me too, but it is true it has not cured my pins and needles parasthesias or my repetitive strain injuries. So there is hope here that adenosylcobalimin might help. I will post or add here if it does.
My neuropathy improved dramatically last week. I don't know what to attribute it to. It improved suddenly right after a single dose 1000 mcg methylcobalamin. However I am on daily alpha lipoic acid, 10 day cyanocobalamin shots, and glumetza for blood sugar. So it could be any of those but it has improved more than I thought possible. I suspect it's the methylcobalamin plus ala, because each one of these things alone didn't give huge improvement. Or it could just be the passage of time.
Thank you so much for this oozlumbird. The quality of the discussion on the PA and hypo forums never fails to astound me. This is one more crucial insight.
• in reply to
PS - would you mind saying what the psychiatric effects were - I know this is intrusive so I understand if you do mind. But it is just in case there is a parallel with my son, who is talking very determindly about suicide at present.
If the question is for me- I don't mind at all, quite the opposite. I get hesitant to explain them in full because I'm not sure of the response.
Naturally I have tended toward high anxiety, panic attacks, ptsd, and body dysmorphia since early childhood. I did not do well with drugs, they only made things worse! I have a number of health concerns that could affect mood and were only just diagnosed: celiac, hypothyroidism, prediabetes, vitamin and mineral deficiencies.
As I became lower in B12 in the years prior to supplementation, my behavior changed. I got uncontrollable mood swings: crying like the world was going to end, or being very short tempered and yelling at my family. I had NOT been short tempered before.
With the methylfolate and methylcobalamin, the first thing I noticed were nighttime panic attacks that felt different- very dark and harrowing and heavy. It was a very strange feeling, very dreadful. I would be getting ready for bed and all of a sudden want to die. Because I had been prone to nighttime panic, I brushed this off.
On the methyls I became very agitated. My skin burned and I felt like my brain was on fire. I actually started tearing at my arms and hitting my head in distress. I'd feel violent rages come over me at a moment's notice for no reason at all. Or else I'd switch to horrible dread and hide in my room, pressed up against the wall, eyes wide. In the hours after a dose, my whole body would ache terribly and my brain would be so foggy I couldn't even read email or formulate an answer to a question.
After a month or two I started getting paranoid. As I walked around my house my mind would play tricks on me and I'd imagine packs of demons around every corner. Not hallucinations exactly, but like the jumpiness you get after a scary movie, only worse and more vivid.
I was a skeptic, but I became obsessed with conspiracy theories and morbid things. I lost my logic and critical thinking skills. I became paranoid about my family members. I couldn't feel love, affection, or connectedness.
At my worst I had only a few moods: panic, violent rage, paranoia, suicidality.
The agitation lasted long after stopping the supplements. I eventually went into a psych ward for a week.
My doctor had told me they had no side effects and would make me feel great. I had struggled so long with chronic pain and I was desperate to get better. I did have a history of anxiety, plus the recent b12 behavior changes. That's why we didn't pick up on the side effects sooner.
I'm sorry if this is tmi. I'm probably one of the worse cases, due to the duration of supplementation. I'm sure not everyone gets this bad. Stopping earlier would've been easier on me no doubt.
I am a naturally gentle, intelligent person. These supplements made me feel like I had someone else's brain.
I was also on .5 mg paxil at the time.
I have been looking into cbs mutations and overmethylation which I suspect might have contributed to this, but that's a bit of a rabbit hole with all sorts of dubious information.
Even if your son is prone to mood disturbances, he could be reacting to the methyls. Other signs to look for would be sudden temper, headaches, racing heart, agitation or electric sensation in head, shoulders, arms, cystic acne, inability to deal with stimulation or information.
Thank you so, so much for that. Not too much info at all, very valuable, very moving, very informative. I will read it through again carefully and try to absorb it - there is so much here, and there are a lot of things going on with you. On the glass half full side, it is clear that many moods and even hallucinations can be caused by nutrient deprivation or a lack of balance of nutrients, and that these are curable and transient so long as - this is a big "so long as" one can track the causes down. Your early panic attacks and anxiety might have been due to low iron due to your celiac disease. Thank heaven you found that diagnosis.
B12 deficiency is closely linked to some of the reactions you note - as you know, and your doctor recognised. There is a case I recently posted, quite well known, you probably have read it, of a young man with extreme mental disturbance including hallucinations, remedied by B12. Hmm, so if adensylcobalamin helps parasthesia according to the Indian study, I wonder if there could be some unresearched pyschiatric effects too? I will order some.
In your case the methylc caused a swing, the top of the u shaped curve effect I expect. How recently were you diagnosed? If your celiac was v recently diagnosed, you will probably be lacking in so many nutrients that it will be easy to disturb the balance by over-supplying one, I would guess. All the fat soluble vitamins, a lot of minerals....
you are at the cutting edge. No. You are the cutting edge.
My son also has had hallucinations (much more minor - on falling asleep, but seeing machines with eyes) and hallucinations linked to panic attacks, so he will walk down the stairs naked and trembling, feeling there is someone behind him waiting to attack. As with you, it is not th essence of him, it is a physical problem presenting as psychiatric disturbance.
Thank you so much, your willingness to explain may help me help him.
I'm so sorry. Allyson that you've had such a nightmare time with this deficiency but thank so much for explaining what you've been through.
My sister with severe B12 deficiency had many of these symptoms last year and her surgery initially refused to recognise B12 def., instead misdiagnosed dementia and prescribed a psychiatric drug, which had no effect and turned her into a zombie. She made an amazing recovery after we eventually managed to get her monthly Hydroxocobalamin injections, as well as supplementing with Jarrows Methylcobalamin 5000 mcg, SL between injections, which seemed to help symptoms like sore tongue, etc.
Some of these symptoms have just returned and the surgery, again, are wanting to prescribe the same drug and are refusing to bring her next injection forward, insisting that her blood tests show she has sufficient! I wanted to punch her in the face when she implied with a smirk that my sister was faking the shaking, confusion and inability to walk!!!
Surgery refuses to believe that these symptoms are severe B12 deficiency, even when shown all the research. My sister is, like you, a kind, gentle, practical and sensible person. I really despair and don't know what the answer is when faced with such ignorance and condescending obstruction.
Can you tell me more about the "sore tongue" issue your sister has experienced. I'm trying to put my own puzzle toghether. This forum is amazing. I just started on L-Methylfolate @15mg/day and started to experience some of the things I'm reading about. If anyone with the MTHFR gene mutation smokes Cannabis, you should do some additional reasearch along those lines because you need to know that it could be deadly--yes, deadly. I'm floored by what I've learned tonight.
My sister didn't say a lot about it - only that it was one symptom (glossitis) of her B12 def. that improved. The only tongue symptom I have with Pa/B12def. is that my tongue is smooth.
This is from Dr C's page B12d. I read the article you posted there. They are also saying that tablets work just as well as injections. That contradicts other information I have read too. However it does recommend to use methyl and adeno, and that is something I do anyway..... To make sure I repair the nerves, and feed the mitochondria.
I would also say people do find they respond differently to certain forms, so regardless of what you find suggested, I would always ' suck it and see '
Very true! I think that's the most important take away when treating B12 def. I think if patients are aware of these gray areas from the beginning, they can better fight for the care that works for them!
Methylfolate makes all of my joints very painful within a day of taking just one tablet and several days to wear off, and methylb12 injections make me feel as though I've been poisoned and have a brain virus, and feel very mentally low. I noticed the effects almost straight away, tried them separately a few more times with several weeks rest in between trials and it was definitely the methylfolate and methylb12. I seem to be doing fine on sublingual methyfolate and hydroxo B12 injections.
I hope you find something that helps resolve your problems, what you've been through sounds very traumatic indeed.
Thank you! My physical symptoms were so similar. There is a strain of naturopathy in the US who call this detox and seek it out, I hadn't realized my doctor was following them. They tend to have commercial interests in methylated supplements specifically. They tell you the methylated forms are natural and the best bioavailable forms, all else is synthetic poison. Then if you get sick, they sell you more supplements to "open blocked pathways". She led me to believe the vitamins were from a food source and had no side effects! I cannot find evidence that it is detox, nor can I find success stories for people who react this way.
I think it was the length of time and severity that made it so traumatic - 4 months usage of very high doses was crippling and relentless and very hard to recover from. Had I known to stop earlier before things got seriously out of hand, I would have returned to normal I believe.
I tried 1000 mcg spray to supplement my cyano shots, and a week later I'm still breaking out, having infections in mucous membranes, gastrointestinal distress, mood problems, and that brain virus feeling. Methyl b12 is definitely not for me!
I'm so sorry for what you're going through,I only need to get a cold-sore and become a weakling wreck!
I've been trying to get to the bottom of it because I worry about my folate levels but because of longstanding untreated pernicious anaemia, I start getting information overload and become so confused.
I wonder if any of the more scientifically minded members can make any sense of it.... I just came across the following article and wonder if it might be relevant but however hard I try, I can't translate it into layman's terms
Yes, I get information overload very easily too on this topic. Not only is a lot of it highly technical, but you have to wade through a fair bit of marketing too.
Methylation has become such a focus of natural health circles, and I think a lot of unqualified practitioners are jumping the gun, and there are forums full of people experimenting and getting sicker. I really suspect my neurological problems got worse while on the methylfolate/methylcobalamin. I know my psychiatric state was unlike anything I've ever experienced before.
I don't really have a grasp on the article either but I can tell you that I was low in methionine and several other amino acids, and my doctor was flooding my body with methylfolate that built up to astronomical blood levels.
I'd love to have someone explain it in layman's terms, but when I look for that I just find lots of naturopaths trying to sell products.
It seems to me that perhaps no one really has the answers yet at this point, and so I'm just trying to focus on correcting deficiencies in a moderate way, focusing on both lab results and symptoms. I don't know why methylfolate and methylcobalamin unbalanced me. In the meantime all I can do is supplement with tolerable forms. Hydroxocobalamin is pretty good so far.
Is there a reason you must take the methylated forms over others? If your folate is low do you respond to folic acid or dietary intake?
Thanks for the article, I have not seen that one before.
How is the hydroxo form working out? I just recently went through horrible reaction to methylcobalamin. That stuff is like poison to me as well. Is hydroxocobalamin still working for you? I also searched for the complete text to the abstract you posted above. You can find it here if you want to read it: pdfs.semanticscholar.org/6a...
Allyson1, is your B12 level elevated? Mine is though it's always been tested within a few days of getting B12 by injection or sublingually so I don't know how accurate it really is.
I found this article about elevated B12. Not all that much good news here, says long-term injection of B12 can lead to anti-TCB II autoantibodies, or is a symptom of other issues (gastric neoplasm, carcinoma, blood diseases, liver or kidney problems).
Thanks tracy, this is interesting...Mine wasn't elevated prior to supplementation, it was in the 400s or so, but I was already developing neurological and psychiatric changes.
I think this part is interesting from page 508, if I'm reading it correctly:
"Meanwhile, the lack of reliability of the homocysteine concentration as a metabolic indicator of a reduced conversion towards methionine has been shown in situations with oxidative stress. 52 It is thus no surprise that in patients with diabetes, a disease known to cause oxidative stress, clinical response of neuropathy was noted at cobalamin levels above 400pg/ml (as
seen above, double the accepted lower limit of normal). 53"
My homocysteine was never elevated, and my methionine was low. My B12 was in the 400s. I was extremely thirsty and had excessive urination, swelling, sugar cravings, and fatigue. And I was going numb from B12 deficiency.
It wasn't exactly clear to me from the article, but it did seem to imply that high serum B12 levels due to oversupplementation are not necessarily safe, particularly for those with liver or kidney problems?
I don't know about my homocysteine level as it and MMA were measured 2 weeks after I started B12 loading doses. From what I've read they will drop quickly once B12 levels are back up. I've never had methionine measured.
My B12 was 196 by the time it was measured and like you, I was extremely thirsty and had excessive urination (7 - 10 times during the night, and nearly that often during the day). I thought it might be diabetes but tested negative. B12 deficiency caused shooting pains in my legs and back, I would have preferred numb over that.
I almost always have a below normal glomular filtration rate (GFR) that can indicate kidney disease but curiously my doctor has never considered it a problem, was told I was probably dehydrated.
Are you still having the excessive thirst and urination? Maybe it wouldn't hurt to get a second opinion or a closer look? My fasting blood sugar was always normal, but a two-hour glucose challenge was not. It's torture, isn't it, waking up every hour.
Allyson1, thankfully I'm now beyond the constant thirst and urination, that was when I was very deficient and didn't yet know the reason. Definitely was torture when it was going on. Only thing worse was what happened before that, where I would lie awake in a catatonic state until 2am, sleep until 3am, then lie awake until the cycle repeated. One hour of sleep a night is awful.
Interesting your fasting glucose was normal but glucose challenge wasn't. I never could convince my doctor to do that test on me. I knew something was wild with my blood sugar levels so bought a glucose meter. Monitored it for a couple weeks and it was all over the map. Some mornings before breakfast it would be high. Then it would be okay for a few days. Crazy. That was in my early days of B12 treatment, things have settled down considerably since then. Perhaps going gluten-free has helped? I'm too scared to try eating it again after my horrible experiences leading up to my B12D diagnosis and changing my diet.
There is one genetic combination that can lead to a very low level of diabetes - I think it is sub-type 3 within MODY. Many people with the gene don't actually present with diabetes or generally identifiable problems with their blood sugar levels. If you have a history in your family of the same (it's a dominant gene and its one that isn't triggered by environment) - ie problems with blood sugar but no actual diabetes - and may be a few that did have diabetes - it may be worth trying to get tested for the gene.
The article - if it is the one I'm thinking of - is arguing that doctors should investigate where B12 levels are high as well as when they are low.
High B12 can be an early indicator of liver and kidney problems and if the person concerned has the auto-immune response to high B12 in serum then that means they start to show all the symptoms of B12 deficiency through becoming functionally deficient.
High B12 doesn't cause the liver and kidney problems.
The article also suggest that even for people where the most likely cause of elevated levels is being on a replacement therapy - the assumption shouldn't necessarily be that B12 is the only thing that is going on and causing the high readings ...
Know I had to read the article several times before I really got all of that.
All that I do know is that for the time period 2 - 24 hours after I get a B12 shot, I feel just horrible. Tremors and shaking, inside my chest just to the left of my sternum. I am able to sleep, thankfully. The day after that is a pretty good day for me. Then I gradually start going downhill again until I bite the bullet and get more B12. This has been happening since late last Nov but each time my deficiency symptoms between shots intensify.
To appease my doctor I tried going a month between shots, still had to supplement on the side with sublinguals and I had two weeks of horrendous tachycardia until my shot last Wed afternoon. As expected, I felt horrible all day Thurs. I've been careful to get lots of potassium in my diet -- several bananas every day and lots of coconut water. I've tried taking extra folic acid (think it caused some acne spots) and some iron. My doctor won't run any more tests for a while, so I don't know if there is something I'm in need of or just overmethylating due to too much B12 or ?? I guess if it gets really bad next time I'll just go to the ER and let them try to figure it out, hoping they don't just say I'm having a panic attack which is what happened when I landed there before my B12 deficiency was diagnosed.
On the tachycardia - I have a blood pressure cuff that also measures heart rate. I could see that my heart rate was gradually increasing over time. I'd measure it before getting out of bed in the morning, and during the day when I felt relaxed. On the day of my B12 shot last week my HR was usually over 110 and reached over 130 at times. My blood pressure was never excessive, only my heart rate.
After a B12 shot the tachycardia eased up. For the following day I have an awful vibration in my chest and general malaise that goes along with it so I spend the day in bed. The day after that, I feel more like my usual self and am up and about. In the days that follow, I start declining again.
I eat lots of bananas, jacket potatoes, and avocados, and drink lots of coconut water and a little orange juice every day so I'm pretty sure I'm getting lots of potassium.
I've taken some iron (am careful not to take lots, I take 28mg once a week), have tried taking 2000 - 3000 mcg folic acid daily around my shot (though my folate always high). This has never made a difference in the vibration. I used to also take alpha lipoic acid but I never detected a difference so I stopped taking it.
The tachycardia sounds concerning, particularly since you notice such a correlation with B12 supplementation. I had terrible palpitations the first few months of supplementing methylfolate and methylcobalamin. I was on waay too much B12 and folate. I also had some other health issues affecting thyroid and adrenals. As far as I know my BP has always been normal.
Do you have tachycardia with just B12 or is it always B12 and folate together? Are the doses and frequency right for you? Is there a specialist who could look at this? Easier said than done, isn't it, but logically something is going on. It's so stressful when health problems feel like a mystery.
Sorry I don't think I was clear. My tachycardia got really bad because I was greatly in need of B12. I also had orthostatic issues, like POTS though I've never been diagnosed. On the day of my shot (before I actually got it), my heart rate was as high as 131. After the shot it got much better, though I had one day of feeling awful afterwards.
My shot was last Wed and it is now Monday. Last night I could feel my B12D symptoms creeping back and used a small amount of methylB12 spray in my mouth, and a small amount again this morning. After a shot I get a feeling of vibrations or pulsations in my chest and stomach. Today I felt some of those vibrations but not nearly so bad, perhaps due to a lower dose than the 1000 mcg jolt from a shot.
In a couple of weeks I'm seeing a doctor on the "good doctors" list maintained by the facebook PA group. Unfortunately I'm not insured within that medical group so it's one time consultation. But I'll take what I can get.
In my opinion (after using several different methylated B complex containing products), these new coenzymated B vitamins have not been well researched enough and can do damage. I found them to be *extremely* energizing, almost ridiculously so, compared to regular non-methylated vitamins. I developed insomnia while taking even a fractional dose of a methyl B complex and dry eyes (which I've never had before). I will never again take this stuff.
After switching back to a regular "old fashioned" B complex I felt immensely better.
I agree, there's something really not quite right about these methylated vitamins. Honestly I found my whole experience with them traumatic and I try very hard not to think about it. My side effects took a very long time to go away.
Hi Allyson...Can I ask you what your side effects were? Did you do or take anything to help them go away? How long did it take? I am struggling since I took high doses of a b complex, methyl b12 and multi vit all together. I woke up with severe anxiety, heart palps. I stopped everything 3 weeks ago but I still have anxiety (that I never had before all this) and I can feel my heart beat. Please tell me there is a light at the end of the tunnel.
I can't speak to the source, but this post seems to sum it up pretty bluntly. I suffered all those side effects and induced deficiencies. The adverse effects of methylated vitamins changed my life and body as I knew them, and I have never been the same. I'm glad you were wise enough to stop them quickly. I was naive and trusted my doctor.
I strongly believe that methylated "vitamins" aren't really vitamins in the traditional sense, but basically drugs/chemicals. They bypass the natural rate limiting steps in your body, and can push biological pathways WAY harder than is natural. Perhaps some people need this extra push, but I bet a lot don't and the supplement industry will hopefully wise up about this before more people are hurt.
To aid my recovery, I had to take a lot of taurine, glycine, magnesium (glycinate/taurate), regular non-methylated B complex, and a multi mineral combination formula for several months.
What scares me so much is how much aggressive marketing and pseudoscience is out there for methylated vitamins. It's downright predatory.
I thought I was only taking some nontoxic, low dose vitamins at my doctor's recommendation and next thing I knew I was seriously unwell. I wonder if any of my nutrient deficiencies were perhaps precipitated by high dose methylfolate. The change was night and day and came on suddenly: hair falling out, skin not healing, neuropathy, psychiatric changes, loss of smell and taste...
I don't want to indulge in conspiratorial thinking, but it seems awfully convenient that there are these supplement sellers pushing methylated vitamins, and then they have an entire product line designed to offset the side effects of those vitamins. And then more supplements to offset the others ad infinitum...
I totally fell for the marketing. I thought methylated/coenzymated vitamins were the same as regular vitamins, just better and safer.
I started taking a methyl B complex (and then a multi containing methylated B vitamins) for minor off/on depression. It made my depression worse. I thought I was just taking too high a dose, so I cut back the dose to find the right "balance". But I discovered that *no* amount was safe for me. If I took even a tiny amount I got insomnia and my other symptoms (dry eyes, depression) returned.
The methyl B complex was like metabolic gasoline. I noticed that commonly prescribed single free-form amino acids used for depression (like Tryptophan, 5-HTP, and Tyrosine) were basically "amplified" by the methyl B complex and became basically dangerous.
I still remember the night I took a regular B complex (from Whole Foods) - I felt *immediately* better. I knew right there that the methylated stuff was effectively poison (at least for me) and I threw out anything containing P5P, R5P, etc.
How many people are going to get hurt by this stuff before the FDA steps in?
Same here, except I wasn't as wise as you and stayed on the methylated vitamins for *months*. I was having health problems to begin with, so I didn't at first perceive the adverse effects for what they were. I didn't realize the vitamins were the cause. I was too naive and trusted my doctor, and didn't realize she was misinformed and giving me a hard sell. She kept me chasing that "balance". Crazy.
By the time I did realize and stopped them, I was deficient in lots of nutrients and couldn't heal. I was really weak.
Have you considered an adverse FDA report? I eventually did this.
Honestly, I had some really weird symptoms on those methylated supplements and although it wasn't on the radar at the time, I would not be surprised if it had caused a mild serotonin syndrome.
Good idea - I'm going to submit an FDA report on the couple products I used. I've also been leaving bad reviews on Amazon so others can avoid these problems. I want to get the word out more.
This stuff is insidious. I'll be healing from this for months.
What's weird is that methyl B-12 doesn't bother me - I've been taking it for years (either topical or sublingual). I took methyl folate a few times and it didn't seem to bother me either. It's the combination methyl B complex formulas that are super toxic.
This stuff actually caused me to be deficient in B vitamins - they are like anti-vitamins!
Hi - first time commenting to the group as I just found you guys today. I am both relieved and shocked to read your experiences, thank you for sharing so openly. I was feeling a bit fatigued and like I needed a bit more "pep in my step" two months ago so I started taking 5000mcg of Methyl B12 as a sublingual. I grew up on a ranch, don't scare too easily, but what ensued was terrifying for me. After five weeks taking these things religiously, I started fearing I was losing my mind. I only stopped taking these about four days ago and I feel better but am definitely not out of the woods yet. My symptoms include: panic for no reason (totally out of character for me), elevated heart rate of between 90 and 120 (my resting is 60), persistent unease, sense of fear and impending doom, unable to sleep due to waking up with a panic attack, frequent dizziness when seated, shortness of breath.
I feel quite convinced these vitamins are dangerous, and I am going to file an FDA report. I've also left a very negative Amazon review. Good luck to everyone out there dealing with these odd health problems, wish you all the best!
How are things going? Just sending a note to reply that these things happened to me as well. People keep mentioning the FDA, but it is my understanding they do not regulate supplements.
Adverse reactions to methylation supplements are pretty well documented at this point (at least on the Web) although maybe not so much at the time of the original post. In my case, it's all very strange. A few years ago, I was seeing a functional medicine practitioner for various weird problems. I discovered that I was heterozygous for MTHFR c677t, my homocysteine was high, and I had high levels of mercury. Part of the protocol was taking methylation supplements which included methylcobalamin, methyl folate, and SAMe. I didn't seem to have much of a problem with those although I had the feeling that the SAMe was making me a bit irritable. Fast forward a few years and I was still having some issues. One of them was a mild neuropathy in my arms. I had read the Zinc and vit B6 were helpful and so I started supplementing. A few days later I started having unbelievable anxiety attacks. Now, I've always been prone to anxiety, but nothing like this. These were knock-down, incapacitating panic attacks that happened every day for no apparent reason. I didn't make the connection to the Zinc/B6 (both of which affect methylation) for a while although I stopped those for other reasons. It took about 2 months for the panic attacks to stop.
I started seeing another functional medicine doctor recently who also put me on a similar methylation supplement. This time I could feel the anxiety starting up again so I stopped.
In searching around the Web I see that these reactions are not uncommon. And there are varying theories about why this happens. One theory is that folks with a certain gene SNP called COMT can't handle lots of methyl donors. I have that gene SNP. I've also read that if this reaction is due to "overmethylation", taking niacin can help. So I've started taking 50mg of niacin periodically when this happens and it does seem to help. I haven't yet spoken with the new functional medicine doc about this. I might try to switch to much lower dosage methylation supplements since I do believe that I need additional methylation support.
In general, I don't think the whole methylation thing is well-understood at this point
I do not have PA but came here to express my experiences with taking a single dose of methylcobalmin (1000 mcg). I've trolled around the internet for months now gathering anecdotal experiences from people, and this thread seems to have a few people who can confirm in very similar detail of the extreme reactions I had.
I didn't have any major problems before taking methylcobalmin, but I did get it because I was feeling a lack of energy and thought it was harmless (water soluble, can't overdose people say on the internet!).
The symptoms didn't kick in initially and took about 24-30 hrs to feel the effects. I woke up after that time period and had a general feeling of unease during my sleep, which was very unusual, but I brushed it off and went about my day. Something was off with my vision too, it was difficult to track objects, read text and my vision was very surreal looking and vivid. I disregarded that too as it wasn't debilitating but was noticable.
Later that evening I had a series of panicked attacks. I had never had them before (other than from smoking marijuana, which I have only tried a few times). That night was awful sleep. Very wired and full of dark, creepy energy. I also had to urinate almost 10 times during the evening.
My mental state from here just kept getting worse. I would have days long, never-ending panick attacks. The anxiety was unlike anything I have ever experienced, it was dark and creepy feeling with dread.
After two weeks or so, some or the symptoms diminished like the urination, gastrointestinal issues, and extreme panick attacks. Unfortunately, I was left with a bonafide anxiety disorder as diagnosed by a pyschiatrist. I had months of anxiety and derealization and sleep disturbances before I got it under control (with SSRI meds). I also was presented with depressive symptoms (literally had the experience of feeling like nothing, which was a trip).
I don't necessarily believe the B12 caused my current level of anxiety, but the experience kick started me into an anxiety disorder and/or PTSD. Admittedly I have always been anxiety ridden but nothing ever like this, and never felt I needed medical help for it. I had zero reference for these type of emotions and feelings before, so this really hit me hard.
During my investigation and multiple health screenings, nothing abnormal came up other than I have MTHFR A1298C and some other "impairments" like COMT and MAO.
My belief is these SNPs are important and may explain my extreme symptoms -- but the people and communities behind these issues are not fully aware of the science. There is so much confusion and hearsay on the internet.
I would recommend avoiding high doses of these "methylated" vitamins and stick to what's known in terms or B12 treatments (cyanocobalamin). There is no evidence they're better for you that I am aware of, but I'll let people decide that with your doctor's input. I'm just here to warn you my experience was harrowing and while I have gotten 95 percent better, there were times I wanted to jump off a bridge in a very literal sense. I'm still not out of the woods more than a year later and am relying on meds which has its own separate issues.
Be careful with these supplements and take these methylation experts' opinions' with an incredibly open mind and question their conclusions with the utmost skepticism.
You're situation is very similar to mine. Some of my symptoms have subsided but I am left with this anxiety and it's debilitating. I really don't want to go on meds but I'm at the point where I am scared this isn't going to go away. I have a 2 year old and a family and I can't feel like this. Are you still on the meds? This all scares me so much.
Sorry I have not monitored this site for replies. My apologies in the delay in replying.
Yes, I am still on medication, albeit a very low dose of Lexapro / Esitalopram (5mg).
I hope the thought of medication does not still scare you. IMO it's more scary thinking about taking than just plunging in. Try not to "catastrophise" too much.
I have hypothyroidism, the hypothyroidism caused anxiety and strange thoughts but since I've been taking small doses of methylcobalamin I am sure they have made it worse as I am now on medication. When I first took the supplement I felt a lot of anxiety so stopped for a few days, but as my period started I thought this was why. I had a small break but my B12 continued to decline so I started again. At first I felt a little more depressed so added methylfolate and thought this would pass, however my symptoms seem to have turned into one long panic attack, I feel overstimulated a few hours after and I have visions of hittibg my head again a wall etc I am really concerned and definitely stopping these tomorrow and will continue to monitor what happens.
4 months ago I was diagnosed with MTHFR gene mutation and given methyl folate & B12. One dose and I became deeply depressed, anxious and suicidal for days. I developed Akathisia a year and a half ago due to misdiagnoses and multiple nerve pain meds so I am acutely aware of changes when taking anything. (And I now get the majority of my vitamins from diet. I can tolerate NO pharma meds ) I thought the bad reaction I had was because of the sensitivity I developed due to Akathisia. Now I wonder. Have any of you with bad experience with methyl also had Akathisia or is it simply that methyl may be dangerous to some? Please share.
I also went through this/am going through this. It's been 2-3 months. My symptoms were depersonalization/derealization, numb face, constant panic attacks, paranoia, tremors, and microwave head feeling. The panic attacks and depersonalization/derealization have eased up, but everything else is still here. Did anyone manage to fix it?
Sorry to hear about your ordeal. Just reading yours and other peoples' terrible experiences brings up some pretty strong emotions for me. I do wonder about relentless panic attacks and depersonalization/derealization generating a PTSD subset of anxiety disorder specifically. I have definitely learned avoidance behaviors related to not wanting to experience this again, including (and among things) such as an irrational fear to taking all supplements, except for melatonin on occasion.
It's been about two years since my experience, and I have generally been a lot better overall but I've had long bouts of anxiety periods that really drag me down for the count some days. I wouldn't be spending the time to write on this board (and others) to detail my problems and "get the word out" if I was OK with what happened...I am still far fro m out the woods. Unfortunately this issue has been with me and on my mind fairly constantly since then. I am definitively scarred by this.
If I had to extrapolate from my personal experiences, you're probably going to come out of the very worst of it soon. Around the two month mark I started to see some "windows" and regained a level of functionality and consistency that was a good reprieve from a period where I was really starting to lose it. Around 3 months is when I started to take SSRI medication. You may consider that as an option with physician if you do not feel you're regaining control. Just know you have a possible solution in your back pocket might make things feel better.
It would be great if you could post more details. Have you seen an MD doctor? Have you had prior anxiety before? Did you get tested for MTHFR? Do you have any other SNPs? Did you test any other things like thryoid, B12 levels, etc?
This information will be good for the community to see so we can aggregate our problems. I don't think there's any clear answers to why some people are affected more than others.
My belief and personal experience is going to a doctor and saying B12 "jacked you up" isn't going to cut it in the medical community. You might get laughed out of the office. We need more people discussing their issues online to get anywhere within the "traditional" allopathic and osteopathic medical arenas.
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