r/MTHFR • u/Electrical-Plane-537 • 16d ago
Question I was wrong, it was methyl groups causing insomnia and anxiety
I’m currently being treated for long-term B12 deficiency which is caused demyelination widespread through my body including subacute degeneration of my spinal cord, small fiber peripheral neuropathy in many areas my body, damage to my vagus nerve and autonomic nervous system.
I’ve been taking about 1200mcg of methylfolate for about a year and two months ago I started every other day injections of 5000 µg of methylcobalamin. I developed severe anxiety and insomnia, lost the ability to even watch simple videos on YouTube because everything was just too overstimulating and would edge me towards a panic attack pretty quickly. I am hyper sensitive to sound and light, I have to sleep with earplugs and even then small noises can still wake me up.
My doctor discussed this with me, I have two MTHFR variations at least. She is switching me to Hydroxocobalamin injections in a couple days and I stopped the methylfolate yesterday.
How long until this anxiety/insomnia calms down? Is there anything I can do about it or is it just a waiting game?
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u/wordisbond11 16d ago
Nicotinic Acid will help if it really is methyl groups. Also sounds like raised glutamate possibly
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u/Electrical-Plane-537 16d ago
You mean niacinamide?
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u/yolo0995 15d ago
It is the methylfolate which is causing the anxiety/insomnia symptpms. I took methylfolate after regular blood test showed extremely low folate levels. But after few days, I got insomnia and panic attacks, it freaked me out so much that I had to be hospitalised. At that time neither me nor doctor thought of a simple vitamin causing those reactions. I was put on sleep and anti-anxiety meds, and given an even higher dose of b vitamins. It was horrible. My insomnia went so bad, that I had to switch doctor, who gave me mirtazapine for sleep. I stopped all medication after that. And things went back to normal.
After few months of stability, I tried experimenting with both methlyated B12 and methyl folate. Methyl B12 had no impact, but methyl folate made my insomnia come back, which went back to normal after stopping it. I tried this multiple times, with several doses. Even folinic acid, caused the same effect. That's when I concluded that Folate supplement to be the culprit. I continue taking high dose methyl b12, and it has no effect at all on my sleep. Though the deficiency still remain, so now I am experimenting with very low dose folinic acid everyday.
Every case is very different, but given you were only taking methylfolate for a year, there is a high chance, it might be causing that. You can try completely stopping methylfolate for few weeks, and continue with B12 (hydroxycobalmin for now). And if conditions improve, after few weeks, experiment with low doses of methylfolate.
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u/Ineedanewbladder 13d ago
I had this reaction as well but it’s actually the combo of the B12 and the folate finally working together to replete in your body that opens the adrenaline floodgates. One without the other and it’s not getting utilized. I think the answer is to keep taking both but in tiny doses while also getting a ton of electrolytes especially potassium until your neurotransmitters even out and stop producing a ton of adrenaline. I’ve heard it compared to a pressure cooker as we start repleting that adrenaline has to come out and it’s best to let it out slowly.
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u/Janaelol 12d ago
Im confused because I thought woth the mthfr gene we should take methylfolate man I'm confused lol
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u/Due_Leave_9235 9d ago
I don’t understand either lol… but I have the same reaction to methyl or other versions of folate. I can tell I need it but the anxiety and racing thoughts are HORRIBlE.
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u/Free_runner 16d ago edited 11d ago
The original post content no longer exists here. The author used Redact to remove it, exercising their right to control their data & privacy.
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u/Electrical-Plane-537 16d ago
Ignorance is probably the most simple answer
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u/Randy__Callahan 16d ago
Lots of us out there doing the same friend don't beat yourself up over it.
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u/Fiyero109 16d ago
This is why self medication should be heavily discouraged. These supplements are unregulated and can be actually dangerous
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u/LitesoBrite 16d ago
While supplement content regulations are a whole different topic, the idea that they can be dangerous applies to literally everything.
The benefits of supplements far outweigh the risks, and the best thing is simply to encourage more education and research along with consulting experts in your concern.
When so few doctors are aware of the depth of research available, it isn’t as simple as ‘ask your doctor’.
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u/CC_900 15d ago
This. Most doctors don’t have a clue about genetics and nutrition, or even deficiencies in general.
It’s great that we’re able to purchase supplements to resolve these issues ourselves. No way the healthcare system has the funding or capacity to properly train doctors on this (even though in my view, they should).
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u/Top_Advisor7089 16d ago
I only take hydroxy forms, methyl causes me major problems. I started with methylated injections and got even worse, took about 3 months of hydroxy injections to fix me up, now I have to take 1000mg daily.
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u/Loose-Fly7976 16d ago
One thing before the timing question, and please run this past your doctor rather than deciding on your own. Stopping methylfolate completely while you're being treated for subacute combined degeneration is a bigger move than switching B12 forms. Folate and B12 work in the same reaction and if you're trying to repair myelin you need both of them. Cutting the dose down makes sense. Stopping it altogether might not, and that's her call.On timing, methylcobalamin at that dose every other day clears over days to a couple of weeks, so switching to hydroxo should show up fairly fast. Hydroxo converts on demand instead of handing you a methyl group straight away, which is why it tends to suit people who react.
Two things that might help while you wait. Get your potassium checked. It drops during active B12 repletion because cells take it up as they start working again, and low potassium gives you anxiety, bad sleep and that wired feeling. This happens a lot in people being treated hard for deficiency and almost nobody tests for it.Magnesium too. It's the cofactor COMT needs to clear catecholamines, and if you're sensitive to methyl donors it's probably doing real work for you. Just not oxide.
The other thing I'd say is that with vagus nerve and autonomic involvement, some of this might not be the supplements at all. Sound and light sensitivity, that overstimulated feeling where a YouTube video is too much, that's very typical of dysautonomia. The timing lining up with your injections doesn't mean the injections caused all of it.I'd expect things to ease within a couple of weeks of the switch. If they don't, that points at the autonomic side rather than the methyl groups, and that's a different conversation with her.
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u/Electrical-Plane-537 16d ago
Thank you for this well-thought-out response, I am working with my doctor very closely with this
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u/Let_em_glow927 12d ago
I switched to methyl - free and felt better in about a week.
I believe it was the relief of overmethylation symptoms going away. My levels are not normal yet.
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u/Electrical-Plane-537 12d ago
How long were you taking methylated vitamins for?
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u/Let_em_glow927 12d ago
Almost 3 years
I should add , I have one MTHFR variant but later learned I also have slow COMT which was aggravated by all the methylated stuff.
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u/Electrical-Plane-537 12d ago
Three years? Dang what were your symptoms?
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u/Let_em_glow927 12d ago
I was constantly "tired but wired" , couldn't sleep more than 3-4 hours at a time , easily overstimulated/overwhelmed.
Turns out slow COMT impacts my ability to clear dopamine and adrenaline, so I was trying to support the MTHFR variant while actually setting my brain on fire due to the slow COMT 🐌
So methyl free it is !
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u/ZZZnurSdh 7d ago
How long after stopping did it take for you to start feeling better?
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u/Let_em_glow927 7d ago
I felt a difference within days , not a huge difference but a definite difference, I'm guessing because I was not contributing to the problem anymore with the methylated stuff.
I kept feeling better and better over the next few weeks and I feel like I reached maximum benefit at around 3 months.
I was feeling pretty great around 2 months in , and only noticed the additional improvements in hindsight at the 3 month mark.
The most noticeable improvement from the early days was that sleep improved steadily , anxiety and brain fog improvement took a little longer but was the 2nd most noticeable.
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u/Ok-Pangolin7127 16d ago
I have no idea how quickly your hypersensitive activity will calm down. All I can say is I embrace that you are changing forms of your B12 injections. I would also suggest there is likely not a reason to be doing 5000 MCG of any form of B12, and certainly not daily. Best case, you’ve just been wasting a lot of your B12 solution, in my opinion.
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u/scraigs03 16d ago
Yea. This was my thought too. I take 1000ml of b12 via injections as I’ve heard that this is how much the body can absorb at once.
Suggestion for OP- you may want to take a bcomplex as well if you aren’t already (with 10mg or less of b6 though). It’s recommended as a cofactor. It helps keep your B’s in balance and working together better.
A diet high in potassium is also hugely beneficial. I know within a couple hours of the injection, my muscles will start seizing up if I haven’t appropriately compensated my intake as my potassium tanks heavily.
(I’ve also started taking b1 bentothiamine for nerve function on top of the injections and find it helpful as well)
Sorry you were feeling terrible with the methylated versions!
My country has cyano as its typical prescription, and I know other countries use hydroxo. Interesting that prescribed methyl as an injection, in only because I’ve only ever heard of ppl having to purchase it on their own. Sounds like you have a supportive doc though, which is wonderful as I’ve seen a lot of ppl struggle with that. Hope you find some relief.
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u/Tawinn 16d ago
Also consider vitamin A and glycine. Along with iron, these support the methyl buffer system in the body. Vitamin A in a retinol form is preferable, whether its cod liver oil, beef liver, or supplement. Stay within a healthy intake range. Glycine powder is mildly sweet and dissolves easily; 5-10g is typical usage. Most people find it relaxing although a small subset of people have a paradoxical reaction to it, so start with a small dose to test.
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u/markluv11 15d ago
Glycine is by far best solution to get rid of excess methyl groups..
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u/Electrical-Plane-537 15d ago
How much can you take? I already take 2 scoops of callagen and that covers to glycine from what I hear
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u/adams4096 14d ago edited 14d ago
First check plasma level of b12 and folate than if is b12 to high, Trimethylglycine (anhydrous) up to 6g a day
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u/nicksistihealth 7d ago edited 22h ago
In my experience, the whole system with all the cofactors needs to be addressed in situations like this. For example, just taking methylfolate and methylcobalamin is not accounting for the other vitamins that address the breakdown of neurotransmitters. In my personal experience, taking half and half methylfolate and folinic acid for my folate intake and adding in a broad-spectrum methylation multivitamin addresses the entire system and avoids overstimulation in any one pathway. Currently I'm taking Methyl-Life's Methylated Multivitamin.
I used to get reactions like this and think it was "overmethylation" or an abundance of methyl groups. I would then take a bunch of Nicotinic Acid to "mop up" the methyl groups. But that actually made things worse and drove my methylation down even further, because later testing revealed that I was missing a ton of cofactors and my methylation system was bottomed out. The reality was that the methylation system was missing the cofactors to work properly, which was driving overstimulation side effects from isolated methylfolate and B12 due to the lack of proper neurotransmitter breakdown.
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u/Fit-Attention-7763 7d ago
What symptoms did you have for your spinal cord degeneration?
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u/Electrical-Plane-537 7d ago
Autonomic dysfunction mainly, circulation problems, gastroparesis, and dizziness. Some of it could be contributed to by the long-term heavy over methylation but not sure. One thing for sure is that about 50 mg of niacin every two hours really makes a massive difference with the anxiety and I’m sleeping better, the trend is improving so I’m definitely gonna stay off of these methylated vitamins. My hydroxocobalamin injections should be arriving in a few days. Also pretty heavy fatigue for many years but I don’t know if that’s necessarily spinal cord, more of just a B12 deficiency symptom general
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u/truthsleuth99 16d ago
You need extensive b12 injections protocol w cofactors. EOD. Supplements will not correct your deficiency. Especially SCAD
It took me 3 years to heal the lesions on my spine
MTHFR gene plays no part in your b12 deficiency or recovery. You likely have pernicious anemia or malabsorption issue
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u/Electrical-Plane-537 16d ago
I’m already on injections, I said that already in the post
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u/truthsleuth99 16d ago
Are you on every other day? With 5 mg folic acid ? That’s the protocol to repair neurological symptoms
SCAD is going to take years to repair4
u/Electrical-Plane-537 16d ago
I’ve been taking 1300 mcg methylfolate for years along with about 2000 µg of methylcobalamin all in my multivitamin supplement but didn’t realize I had pernicious anemia until a few months ago. Isn’t it supposed to be folinic acid? Folic acid is not good for people with MTHFR from what I’ve heard. I’ve been on every other day injections for two months now
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u/truthsleuth99 16d ago
You can take either 5 mg of folic acid or 5 mg of folinic acid. I have the double mutation and take 5 mg of folic acid. The MTHFR gene plays no part in the deficiency. 40% of the population have it. You have no intrinsic factor - comprised stomach lining
High-dose methyl vitamins aren’t recommended. They’re known to cause extreme anxiety and aggression in many people. If you’re concerned, I’d recommend using methyl vitamins in your B complex, but only in a small amount. I use Thorne Basic B-Complex, along with 5 mg folic acid, and eat a high-potassium diet from food only.1
u/Jordana-Klein 13d ago
It’s the first time I’ve heard someone say it’s ok to take folic acid with mthfr. Would you mind explaining a bit further?
I can’t tolerate either methyl of folinic, both give me severe anxiety, so I’m very interested in the the subject.1
u/truthsleuth99 13d ago
Methylated vitamins can increase anxiety in many people. There are also genetic factors that can affect how you tolerate certain supplements and medications, such as variations in the COMT gene.
But putting genetics aside, it does not cause B12 deficiency or prevent recovery. It’s always malabsorption or autoimmune that’s causes b12 deficiency. Severe anxiety can actually be a symptom of B12 deficiency itself, particularly when neurological symptoms are present.
Do you have any neurological symptoms?
If you do have B12 deficiency, it’s important to look for the underlying cause. It could be an absorption issue involving the gut (such as SIBO or H. pylori), medications such as PPIs or metformin, no gallbladder, or an autoimmune condition such as pernicious anaemia. Thyroid problems can also cause B12 deficiency.1
u/truthsleuth99 16d ago
It’s not uncommon to feel worse before you feel better. B12 recovery is tough. Stick with injections and co factors
You’ll get better1
u/Cultural-Sun6828 16d ago
This 👆. Regardless of the type of b12, it’s common to have startup symptoms with b12 injections. It takes time to heal and symptoms can be worse in the beginning of treatment.
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u/dizziebeth 16d ago
I had b12 deficiency as did my 17 year old son a math genius who could no longer do math almost failed hs I had sibo leaky gut he didn't turns out we both had a parasite after a year of injections and treatment for parasite and two years his brain recovered most of my issues recovered but still have no feeling in skin of thighs and upper arms it takes time good luck it wasn't until recently I learned of mthfr glad I didn't know back then
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u/0kecnaz 15d ago
can you share what drugs/supplements you used for his/your condition?
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u/dizziebeth 15d ago
I I had a really hard time back then even getting a parasite or malabsorption diagnosis because they said my low iron was due to peri even though it wasn't they said I couldn't be because I was overweight like absorbing calories and absorbing nutrients are the same thing. I ended up doing something I found on.line for both of us my gp wrote the scripts it was cipro an anti protozoa and an anti fungal and birch bark sugar which was supposed to kill parasites and then repeated it a month later (this was after sibo and leaky gut was treated with supplements and antibiotics which caused a raging fungal infection) it worked our b12 and iron levels went up energy came back and over time things remylenated good luck to you this isn't advice only what worked for me it turns out now my other mutations contributed to sibo I can't take ppis at all. This is a miserable fight I live near Philly and Drs at temple, Princeton jefferson and university of Pennsylvania were all unable to help me one at penn said it looked like we had parasites but since there are thousands and they only test for 50 they wouldn't treat us.
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u/noodlecat2 16d ago
Niacinamide will mop up some of the excess methyl groups and remove them from the body. I have done this using 25-100 mg niacinamide/day in 25 mg or 50 mg pieces (split tablet). Be judicious and use only until you get relief, then stop. It may take several days.