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Methyl B12 side effects?

justy

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Hi all, i started Methyl B12 injections 12 days ago as prescribed by My Doctor. 500mcg a day subcutaneous. At first i noticed no effect at all (apart from i slept through the night very heavily for the first few days)
I was a bit dissapointed not to feel anyhitng more straight away as i know others who have had a boost from the first jab! My antioxidant and glutathione levels are very low. My serum B12 is 246. I also have high cell free dna (25 last year)

Now i do seem to be noticing that i feel a bit better, slightly more energy and definately less sick feeling. More ability to do more and less PEM. (although sometimes this does happen to me so it could be a coincidence)
The last few days though i have noticed that i feel a bit agitated, like i do feel a bit tired (though not total exhaustion) but i feel the need to keep moving. Ive noticed that i seem to be doing things quickly and it doesnt feel nice. Also my face hurts a bit like ive been clenching or grinding my teeth and my skull feels all tight. I almost feel like i want to crash to relieve this feeling (crazy i know)

I have felt like this in the past when ive eaten too much sugar or taken Acetyl l carnitine. I tried not taking the B12 a couple of days ago and the feeling went away.

So, is this a side effect? will it go away if i carry onj at the same level, should i try taking less or ride it out. Could this bea kind of start up effect?

Grateful for any advice or thoughts, Justy.
 

Lou

Senior Member
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582
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southeast US
Hi Justy, have you checked to see if blood pressure is higher when you feel those symptoms that seem attributed to methyl b 12?

Reason I ask is that methyl b 12 definitely had this effect on me. Switched to hydroxyl form which did not raise my bp.

Best,
 

justy

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Hi Lou, thats interesting, i guess i would need a home BP monitor to check this? I ususally have very low BP, around 95/58 last time checked, i usually presume a rise in BP would be a good thing.
Thanks, Justy.
 

willow

Senior Member
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East Midlands
Hi Justy, some people have genetics that mean they 'use up' methyl groups more or less quickly than others. If you are someone who uses them slowly then the more you took, the less tolerant you'd become. Symptoms would include being hyper or headaches or agitated. I'm not methyl sensitive but perhaps someone who is could embellish! In any case you could try hydroxy.
 

kaffiend

Senior Member
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167
Location
California
I sometimes get effects (feeling agitated, cardiac stuff) just from increased activity. It took me a while to figure out what was a side effect from supplements and what was an effect of doing more.
 

justy

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After continuing with the B12 the agitation has also increased. I dont want to stop them as they are making me feel a LOT better, but the agitation is too much to take.
I e mailed the Doctor who prescribed them and she feels that B12 can be very stimulating for some (ive never heard this before!) and that maybe i need to take less. Ive decided to try less frequency rather than a lower dose as it seems to have been cumulative. Im going to try every other day or every third day. I really hope this works as i dont want to stop them altogether. I actually had a couple of days this week of feeling no brain fog, near normal energy etc.
Today i have got up and i can feel i am crashing again, so the energy it is giving me is obviously not completely healthy. I understnad that i should rest while having this improved health so that my body can repair, but the agitation was so strong that iHAD to keep doing things and couldnt rest or sit still for more than a brief time.

Im very interested to hear more from those who have experience of what Willow talks about here

"some people have genetics that mean they 'use up' methyl groups more or less quickly than others. If you are someone who uses them slowly then the more you took, the less tolerant you'd become. Symptoms would include being hyper or headaches or agitated."

Best wishes to all, Justy.
 

aprilk1869

Senior Member
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294
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Scotland, UK
Justy, are you aware of the problems some people have with potassium depletion? When you get methylation going (methylb12) new cells are created. New cells require potassium and if you're not getting enough in your diet then potassium levels can drop quite substantially. Try taking 5 potassium tablets with plenty of water to see if your symptoms go away. If they do then you know what your problem is. If the symptoms don't go away then it's something else.
 

justy

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Hi April, my potassium levels are actually on the high normal side when last tested, or does this not matter. Ive also read that potassium depletes B12 and has significant side effects itself.
 

aprilk1869

Senior Member
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294
Location
Scotland, UK
Hi April, my potassium levels are actually on the high normal side when last tested, or does this not matter. Ive also read that potassium depletes B12 and has significant side effects itself.

Seemingly potassium levels can change very rapidly so just because they were highish before doesn't mean it's still high. I can't advise you any further than that.
 

justy

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Thanks April for your advice, i think i will mention the potassium to my M.E doctor. Ive also noticed that my cramps are coming back so maybe magnesium is being drained?
 

aprilk1869

Senior Member
Messages
294
Location
Scotland, UK
Cramps are very much a sign of potassium/magnesium deficiency so it's certainly something you'll want to address. Something else that might be of interest is taurine.

Taurine acts by regulating the sodium & potassium concentration in the cells & the magnesium level between the cells. This has everything to do with the electrical activity of the cells & subsequent communication between cells. By this mechanism, it has anti-anxiety & anti-convulsant activity
http://www.findhealer.com/glossary/T.php3
 
Messages
94
Location
California
After continuing with the B12 the agitation has also increased. I dont want to stop them as they are making me feel a LOT better, but the agitation is too much to take.
I e mailed the Doctor who prescribed them and she feels that B12 can be very stimulating for some (ive never heard this before!) and that maybe i need to take less. Ive decided to try less frequency rather than a lower dose as it seems to have been cumulative. Im going to try every other day or every third day. I really hope this works as i dont want to stop them altogether. I actually had a couple of days this week of feeling no brain fog, near normal energy etc.
Today i have got up and i can feel i am crashing again, so the energy it is giving me is obviously not completely healthy. I understnad that i should rest while having this improved health so that my body can repair, but the agitation was so strong that iHAD to keep doing things and couldnt rest or sit still for more than a brief time.

Im very interested to hear more from those who have experience of what Willow talks about here

"some people have genetics that mean they 'use up' methyl groups more or less quickly than others. If you are someone who uses them slowly then the more you took, the less tolerant you'd become. Symptoms would include being hyper or headaches or agitated."

Best wishes to all, Justy.

Hi Justy,
I have similar experiences in taking mB12. I am so sensitive to it, that I started on just a crumb of a 1000 mcg sublingual, and even that amount made me hyper and agitated (for about 2 weeks). I had to stay at the crumb level for over a month before things leveled out. Like you, the effects are cumulative for me with any "normal" dose. I would just feel worse each day until I couldn't stand it anymore. Once I switched to the "crumb approach", I have been able to work up to 500 mcg over a six month period. I don't think I will ever be able to take the 5,000 mcg sublinguals, nor do I think I need that much. It's a lot of trial and error, but don't give up. I spent 3 years stopping and starting methy B12 in every form (sublingual, injections, tablets/capsules), but until I started with a ridiculously small amount and stuck with it for awhile, I didn't make progress. I hope this helps.
 

justy

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Thank you Therron, that is very helpful and a great relief to hear of others in the same boat. Can i ask alongside the side effects did you also have the good effects?
I think ill try reducing the dose as well as taking it less often. if that doesnt work i might have toleave off the injections and try the oral route again. (sigh)
Have had to resort to a small dose of valium this evening because i feel so horribly on edge and over excited
All the best, Justy.
 

richvank

Senior Member
Messages
2,732
Thank you Therron, that is very helpful and a great relief to hear of others in the same boat. Can i ask alongside the side effects did you also have the good effects?
I think ill try reducing the dose as well as taking it less often. if that doesnt work i might have toleave off the injections and try the oral route again. (sigh)
Have had to resort to a small dose of valium this evening because i feel so horribly on edge and over excited
All the best, Justy.

Hi, justy.

I think that what you are experiencing are symptoms of excitotoxicity. This means that there is too much glutamate remaining in the synapses of your neurons, and it is overexciting the NMDA receptors. Normally, the excess glutamate is pumped out of the synapses by the astrocytes, which are "helper" cells also in the brain. The astrocytes normally convert the glutamate to glutamine and give it back to the neurons so they can use it again to make glutamate as needed. Both the pumping and the conversion require ATP, which is mostly made by the mitochondria in the astrocytes.

If the astrocytes go low in glutathione, which occurs in ME/CFS, then the mitochondria become dysfunctional and are not able to produce ATP at as high a rate as normal. This causes an "energy crisis" both for the pumps and for the glutamine sythetase reaction. The result is that too much glutamate stays in the synapses, and the person experiences the symptoms of excitotoxity (anxiety, insomnia, a "wired" feeling or "nervousness").

Now, when a person with ME/CFS who is already low in glutathione boosts the methionine synthase reaction, which is partially blocked in ME/CFS, by the use of B12 and folate, this causes homocysteine to be converted to methionine at a higher rate, and the flow of homocysteine into the transsulfuration pathway to make cysteine, which is the rate-limiting amino acid for making glutathione, goes down. The result is that glutathione temporarily goes down even more. This makes the excitotoxicity worse at first, until the methylation cycle is in better condition and more homocysteine flow is able to go toward making glutathione.

Methylcobalamin has a stronger effect in this regard than hydroxocobalamin, because hydroxocobalamin has to be converted to methylcobalamin in the cells before it can be used to assist the methionine synthase reaction. Some people do better with hydroxocobalamin, but others are not able to convert it very rapidly, because they are extremely low in SAMe and/or glutathione, which are necessary for this conversion.

For people who must use methylcobalamin to be able to help their methionine synthase reaction, I have suggested that the excitotoxicity might be controlled by also using some liposomal glutathione. I haven't had much feedback on this, so I don't know if it will work. The other possibility is to do what you are doing, i.e., go to lower dosage or skip days until your methylation cycle is built up some.

I hope this helps.

Rich
 
Messages
94
Location
California
B12 excitotoxicity.

Thank you Therron, that is very helpful and a great relief to hear of others in the same boat. Can i ask alongside the side effects did you also have the good effects?
I think ill try reducing the dose as well as taking it less often. if that doesnt work i might have toleave off the injections and try the oral route again. (sigh)
Have had to resort to a small dose of valium this evening because i feel so horribly on edge and over excited
All the best, Justy.

Hi Justy,
At any amount over a crumb, I only noticed side effects. Working up to 250 mcg slowly, I was able to reach a place of neutrality, no pain or gain......but I knew I had to move forward. Next I worked in the same manner with methylfolate. I never got side effects with the low and slow approach, so I eventually did a one day challenge of a larger amount and discovered that my brain felt wonderful on methylfolate (at least for one day)! Since then, I have slowly increased my dose. My final challenge was TMG. I had terrible gut reactions to this in the past, no matter how small the dose, but now, possibly due to my foundation of mB12 and mFolate, my crumbs were able to be quickly increased. Still no improvements.........my symptoms actually got worse (body pain, brain fog, fatigue, insomnia, overreactive stress response.....). I figured out that I always felt better in the morning, so I finally put 2 and 2 together and realized that I take my supplements in the morning, so................................I decided to take a second dose of what I believed were my critical supplements (mB12, mFolate, TMG). The results were amazing! Pain disappeared, I slept soundly every night, more energy, able to mult-task, and stress threshold reduced hugely. These gains lasted about 10 days, and I am now working with adjustments since my sleep hasn't been very good for two nights now. I am changing my my mind about the 2nd dose of mB12. I think I couldn't handle the increase. This is my journey...but my mother and sister, who didn't have to deal with excitoxicity issues, were able to reach amazing results much more quickly. Like me, they still have to tweak things, but we are all quite enouraged about our progress.
 

dannybex

Senior Member
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3,561
Location
Seattle
Thank you!!!

Thank you Therron, that is very helpful and a great relief to hear of others in the same boat. Can i ask alongside the side effects did you also have the good effects?
I think ill try reducing the dose as well as taking it less often. if that doesnt work i might have toleave off the injections and try the oral route again. (sigh)
Have had to resort to a small dose of valium this evening because i feel so horribly on edge and over excited
All the best, Justy.

I'd also like to thank Therron and you too Justy, for your posts and this thread.

I too have experienced much increased anxiety, agitation and the feeling of being overexcited and 'on edge' since starting the methylation protocol about a year ago, but it always seems next to impossible to figure out what is causing what?

I've started and stopped many times, beginning with prescribed doses last October (2010) of the folates that were waaaaay too high, then stopped for a few months, and started again in March-April, with small bits of sublingual adb12 and mb12. Then a few times would try the methylfolate, and I THINK I felt 'better', certainly there were days were I felt more hopeful, but certainly didn't realize that the b12's could build up, especially after hearing conflicting info from others who were insisting we need to just get through it, and even take higher doses.

In May, I found some receipts from back in 2003, from a different doc I was seeing back then, who had prescribed methylb12 shots. I had a vague recollection of doing b12 shots ages ago, but had no idea they were methylb12. I seemed to tolerate them fine back then, in fact, they pulled me out of a 2 year crash, and I did well for about 1 1/2 years. Got a new prescription in June -- but now, not sure if they helped at times during the last few months, or made things worse (my anxiety/agitation is still bad), but what I can't figure out is why I could handle them fine 9 years ago, and not now? Too much toxin buildup? Any guesses?

Anyway, I can relate to what Therron said, when he said "I knew I had to move forward". When Rich analyzed my NutrEval panel last August, it showed that I was using my own muscle for fuel, and sure enough, I've lost about 15 lbs of muscle since then (really scary), but if this is due to a block in the methionine synthase enzyme, then I HAVE to move forward.

At the same time, if taking too much b12, of whatever form, is too stimulating for some of us, then that certainly increases stress, which increases cortisol/tissue breakdown (I'm guessing), and just makes things worse.

So anyway, THANK YOU BOTH. I just had a terrible day, spent most of it trying to figure out why, and perhaps this might be the reason, as I did a shot of hb12 each day of the last 3 days, and then took 1/4 metafolin 2 days ago, and 1/2 yesterday.

Gotta slow down I guess...?

Dan


p.s. This might be a topic for a separate thread, but I'd be curious to hear if anyone has had excitoxicity specifically after adding methylfolate.
 
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Now, when a person with ME/CFS who is already low in glutathione boosts the methionine synthase reaction, which is partially blocked in ME/CFS, by the use of B12 and folate, this causes homocysteine to be converted to methionine at a higher rate, and the flow of homocysteine into the transsulfuration pathway to make cysteine, which is the rate-limiting amino acid for making glutathione, goes down. The result is that glutathione temporarily goes down even more. This makes the excitotoxicity worse at first, until the methylation cycle is in better condition and more homocysteine flow is able to go toward making glutathione.

Does it make sense to supplement cysteine (or N-acetylcysteine) while homocysteine is being diverted to form methionine?
 

justy

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I'd like tp reply individually to you all, but not up to it right now. This is a great debate. I realised yesterday that this feeling i have had off and on for years has a name! excitotoxicity, and it make such sense. Today i am going into a big crash. Hvaent ha d B12 shot for three days so i trued a half dose this morning with no effects either way. Im going to keep at this level for a couple weeks to seehwat happens.
All my symptoms have returned to day after 4 days of feeling almost normal. Bum!
Hope you all get sorted -lets keep in contact. Justy x
 

justy

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Messages
5,524
Location
U.K
I'd like tp reply individually to you all, but not up to it right now. This is a great debate. I realised yesterday that this feeling i have had off and on for years has a name! excitotoxicity, and it make such sense. Today i am going into a big crash. Hvaent ha d B12 shot for three days so i trued a half dose this morning with no effects either way. Im going to keep at this level for a couple weeks to seehwat happens.
All my symptoms have returned to day after 4 days of feeling almost normal. Bum!
Hope you all get sorted -lets keep in contact. Justy x
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi All,

I haven't had a shot in 2 days now, and although still agitated, tense and anxious a lot of the time, it has reduced the last couple days, especially compared to Friday.

Wondering again if anyone knows if anyone has had similar reactions (overstimulation/excitotoxicity) from Metafolin?

d.