• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

MTHFR Mutations Questions

GreenMachineX

Senior Member
Messages
362
For the past 6 months (and really the past 3 years without really knowing what was going on) I’ve been having a really hard time finding the right balance of the B vitamins that prevents deficiency but doesn’t overstimulate me. Recent lab work has shown me that I’m negative for the C677T and A1298C mutations, so have I been wasting my time even chasing these methylated or activated vitamins? I’ve had more trouble the past 3 years then when I just used NOW Foods Adam Multivitamin with overstimulation, insomnia, dizziness, lightheadedness, tachycardia, palpitations, etc.

I’ve found if I want to use a high powered Methyl multi like LEF’s 2 per day, I need to take rhodiola to actually sleep, but my hair still falls out. I also feel like I’ve taken a real stimulant and after a year of that, decided that’s probably not healthy long term.

I’m taking Thorne’s 2 a day right now, just using one though with rhodiola to sleep, but still dizzy and lightheaded randomly after meals and if I stand up too quickly. I’ve also crashed my estradiol accidentally using DHEA so I’m recovering from that as well which gives its own side effects but at least I know what to do to fix that (stop DHEA lol). Getting the multi right is something I can’t fix myself. Too much Methyl b12 and I wake up at 12am and can’t sleep for hours with horrible bruxism. Too much p5p and I feel like I’m on amphetamine. I really don’t know where the dizziness for hours after meals is coming from.

So again, should I just go back to a normal multi instead of all these activated Methyl vitamins? Does anyone have any thoughts or advice? Thanks.
 

GreenMachineX

Senior Member
Messages
362
Also, I should mention, the doses I’m talking about are as low as 5mg p5p and 150mcg Methyl b12 causing issues. Folate I don’t have a clue how much is too much but I do know I have deficiency symptoms at 200-300mcg.

For example, I’ve been dealing with shoulder impingement syndrome for a year and a half, and after increasing my folate in 2 days the muscles around my shoulder blade have relaxed to normal amounts. My physical therapist said they don’t feel like rocks anymore. Angular Cheilitis is also an issue that isn’t quite resolving.
 
Last edited:

RWP (Rest without Peace)

Senior Member
Messages
209
For the past 6 months (and really the past 3 years without really knowing what was going on) I’ve been having a really hard time finding the right balance of the B vitamins that prevents deficiency but doesn’t overstimulate me. Recent lab work has shown me that I’m negative for the C677T and A1298C mutations, so have I been wasting my time even chasing these methylated or activated vitamins?

I’ve had more trouble the past 3 years then when I just used NOW Foods Adam Multivitamin with overstimulation, insomnia, dizziness, lightheadedness, tachycardia, palpitations, etc.

I’ve found if I want to use a high powered Methyl multi like LEF’s 2 per day, I need to take rhodiola to actually sleep, but my hair still falls out. I also feel like I’ve taken a real stimulant and after a year of that, decided that’s probably not healthy long term.

I’m taking Thorne’s 2 a day right now, just using one though with rhodiola to sleep, but still dizzy and lightheaded randomly after meals and if I stand up too quickly. I’ve also crashed my estradiol accidentally using DHEA so I’m recovering from that as well which gives its own side effects but at least I know what to do to fix that (stop DHEA lol). Getting the multi right is something I can’t fix myself. Too much Methyl b12 and I wake up at 12am and can’t sleep for hours with horrible bruxism. Too much p5p and I feel like I’m on amphetamine. I really don’t know where the dizziness for hours after meals is coming from.

So again, should I just go back to a normal multi instead of all these activated Methyl vitamins? Does anyone have any thoughts or advice? Thanks.

About being on methylated vits even without the two MTHFR mutations, I don't think it's a waste of money, though your dosage would be less.

About rhodiola, I'm surprised that you need it for sleep, because it's a stimulant. My wife doesn't take it any later than dinner time.

Maybe you shouldn't be on ANY multi per se right now, but rather should build your own so you'll know exactly what's doing what. Start with those nutritents you're lowest in, all purchased individually and all introduced one at a time.

I think you're OK here on this section. I'm not an expert though.

RWP
 

GreenMachineX

Senior Member
Messages
362
So if I’m understanding correctly, I’m sensitive to Methyl B’s because I don’t have the mutation?

The rhodiola I take around 4 or 5 and that lets me sleep through if I’ve taken methylated B’s at doses of 150mcg of b12 for example. If I don’t take it, I wake up at 1am wide eyed. I found a multi called Naturelo Once Daily that uses low doses of everything but still active forms; after this weekend away I’ll be testing that next week.

Any thoughts on this formula? It has a very small dose of b12 and the dose of methylfolate I don’t know what to think as I haven’t used that much without everything else being higher as well.
 

Attachments

  • BEE769C5-ED79-4F2B-9FF8-54BD85BA3BC2.jpeg
    BEE769C5-ED79-4F2B-9FF8-54BD85BA3BC2.jpeg
    351.1 KB · Views: 14

caledonia

Senior Member
Hi, my suggestion would be to stop everything until you get back to a baseline, then take individual vitamins and minerals as needed.

Some people need and tolerate a lot of B vitamins, and others not so much. The multi's may or may not have amounts or ingredients which are good for you.

All of the multi's you mentioned have more folate than B12. Over time this may cause methyl trapping.

Two of them had 25mg of alpha lipoic acid. This can be counterproductive if you have mercury because besides being an antioxidant, ALA is also a mercury chelator. Which sounds good, but not if you're only dosing once or twice a day. Click on my signature link to see a video which explains why this is an issue.

I've tested all the B vitamins individually - I'm current taking 18mcg of methylcobalamin divided into 4 doses throughout the day, and I get folate from a small amount of leafy greens. If I exceed this amount, I run into issues like crashing or overmethylation.

I don't tolerate any of the other B vitamins - they're all overstimulating.

What kind of testing did you do to determine you had deficiencies? Can you post the type of test and your results? Or do you have deficiency symptoms?

Are you a vegetarian, take proton pump inhibitors or have other risk factors for B vitamin deficiencies?
 

GreenMachineX

Senior Member
Messages
362
I have no risk factors for b deficiencies, but I just guessed I was folate deficient because it was the only nutrient I wasn’t getting 100% of. When I increased my dose to 3 caps of Thorne Basic Nutrients III, which gave 500mcg of folinic acid/methylfolate and 225mcg adeno-/ methylcobalamin the muscles in my shoulder that have been locked up for a year or 2 loosened up. It’s not completely healed but a lot better. I’m afraid to go higher because I don’t know overstimulation. When I use 300mcg Methyl-b12 with 340mcg methylfolate as in Thorne’s Basic Nutrients 2 per day histamine builds up like crazy. I feel itchy without rash, I get flushed, sweat way too easily, etc.

With all of these, I have angular cheilitis.

When I used Life Extension’s 2 per day at 1 cap a day which gives 150mcg Methyl-b12 and 200mcg the angular cheilitis goes away, but I feel super stimulated from all the B6 and get palpitations. I believe something in it reduces my estrogen because I couldn’t get it up even when using 160mg testosterone cypionate per week injection. Now that I’m off that, it’s coming up and feeling better (but not perfect).
All of these give me insomnia. But, when I went off everything, I had difficulty breathing in my chest, a lump in my throat for hours after eating, flushing, lethargy, and BP spikes.

When I used Now Foods Adam multi with 25mg combined b6 and p5p, 400mcg regular old folic acid, and 120mcg combined Methyl- and cyanocobalamin, I slept fine without rhodiola, had normal energy (I think), no angular cheilitis, just had some histamine flare ups after certain meals. Now that I’m typing this out and reading my own words, I’ll be testing the Now Foods Adam one again. I just hope I’m remembering correctly as that was 3-4 years ago.

I guess maybe I wasn’t folate deficient?

Could my current angular cheilitis and severe muscle tightness resulting in shoulder impingement be from Methyl trapping, in other words, too much folate and not enough b12?
 

GreenMachineX

Senior Member
Messages
362
Also, could my insomnia and midnight through morning bruxism be from Methyl trapping too? I don’t think it’s real bruxism, but just a tight feeling in my jaw. Very uncomfortable.

Just when I thought I understood all this, I realized I barely know anything and am more confused.

Editing this again: Maybe the palpitations aren’t just from crashed estrogen but from Methyl trapping too??? :mad: Ughhh....
 

GreenMachineX

Senior Member
Messages
362
Last thing, for now, maybe...lol

Methyl trapping might also explain the severe lightheadedness and out of it feeling I got when I tried just adding 400mcg methylfolate without increasing b12. I also keep getting lightheaded if I stand up too fast and some anxiety periodically throughout the day. And random muscle and lip twitching which is very annoying.
 
Last edited:

RWP (Rest without Peace)

Senior Member
Messages
209
So if I’m understanding correctly, I’m sensitive to Methyl B’s because I don’t have the mutation?

The rhodiola I take around 4 or 5 and that lets me sleep through if I’ve taken methylated B’s at doses of 150mcg of b12 for example. If I don’t take it, I wake up at 1am wide eyed. I found a multi called Naturelo Once Daily that uses low doses of everything but still active forms; after this weekend away I’ll be testing that next week.

Any thoughts on this formula? It has a very small dose of b12 and the dose of methylfolate I don’t know what to think as I haven’t used that much without everything else being higher as well.

The formula looks OK. Again, since you're not as needing as much as those of us who have the genetic SNP's, it may be too much. You'll just have to see.

Did you check on the methylation posts about how to "balance" out the methyl B's with potassium and other nutritnets that may be getting taxed as you take the good forms of the B's?

@caledonia taught me all (what little I know) about methylation! Thanks again!

RWP
 

GreenMachineX

Senior Member
Messages
362
Yeah, I’ve read a few threads on methylation and potassium, but honestly supplemental potassium scares me. The side effects of too much or too little (i.e. death lol) freak me out a bit.

I’m first going to test out the minorly methylated Adam multi and see if that does the trick.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Methylation mobilizes toxins. One needs to get the entire system working to endure they get excreted from the body and not reabsorbed and redeposited where you don't want them.

It's best to work backwards, like clearing a freeway traffic jam. This involves proper elimination in the digestive system, with gallbladder working and enough fiber (vegetables) and water.

Then havung sufficient B1 and molybdenum for the transsulfuration pathway. And before that, sufficient glycine, NAC, glutamine, and B6 to make glutathione.

Then the methionine cycle needs to have sufficient MB12, B6, B2, TMG, and magnesium, and for a few people, methionine and potassium.

Once all of that is in place, then you add the 5-MTHF.

Your other merhylating genes and environmental factors like toxicity, other stresses, and the health of your mitochondria can dramatically change your needs for all of these nutrients, and done, like B2, B6, and magnesium are used elsewhere so if there's increased demand somewhere, you'll need more of these.

My experience has been that a Genova Diagnostics NutrEval FMV with Amino Acids is an excellent way of finding your nutrient status and setting up a protocol. Otherwise, you're just guessing and can have some extremely unpleasant symptoms.
 

GreenMachineX

Senior Member
Messages
362
Thanks. “Unpleasant” though doesn’t quite describe the symptoms I’ve given myself that landed me in the ER 3 times lol. I’m now even more confused though.

Not taking any multi today and seeing how it goes. Starting there, then going to re-evaluate.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I don't doubt your symptoms taking you to the ER, I speak from experience, having experienced many symptoms myself.

It underscores the need to figure out what's going on by testing. In addition to the NutrEval, testing for heavy metals and mycotoxins might be in order, as people who don't methylate well tend to become very toxic as their bodies aren't able to get rid of toxins. Once you open the floodgates, it's best to be strategic and find a good balance of what your body can tolerate. (I've been detoxing for 7 years and toxins are still coming out...)

It's something to be done in the long haul and worth getting right.

ETA: And best done under a doctor's supervision...
 

GreenMachineX

Senior Member
Messages
362
Yeah, I hear you. With all of this, my hesitation is that the symptoms feel so real, are they actually dangerous? From too much folate, not enough, too much b12, etc? I realize potassium deficiency is real but I eat so much I doubt I’ll ever experience potassium deficiency. When I was overdoing the p5p, my body temperature dropped and I was so freezing I was shaking uncontrollably, nauseas, and overstimulated to the point of chest and left arm pain, I thought it was all over lol. I’ll post more later as I’m sure I’ll think of things to ask. I really appreciate the help.
 

caledonia

Senior Member
Yes, the multi's could be causing your various symptoms.

Were your symptoms that sent you to the ER dangerous? Could be. Low potassium is not good. The chest and arm pain are not good. I've had both of those before.

You may or may not be able to derive potassium from food. I have to supplement.

I agree with Learner1 that if you can afford it, the NutrEval is a good place to start. Get the doctor's copy which has interpretations (not just the patient's copy), and beyond that, I have an additional interpretation in my signature link.

ps. If you want a specific person to reply to your post, either quote their message in your reply, or tag them like this @caledonia. Then they will get a red flag and know that you tagged them.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yeah, I hear you. With all of this, my hesitation is that the symptoms feel so real, are they actually dangerous? From too much folate, not enough, too much b12, etc? I realize potassium deficiency is real but I eat so much I doubt I’ll ever experience potassium deficiency. When I was overdoing the p5p, my body temperature dropped and I was so freezing I was shaking uncontrollably, nauseas, and overstimulated to the point of chest and left arm pain, I thought it was all over lol. I’ll post more later as I’m sure I’ll think of things to ask. I really appreciate the help.
Methylation does many important tasks in the body. It's important to get it running properly, not as just an intellectual exercise, or it can drive serious diseases.

Not to scare you, but the attached article from a researcher at Cornell illustrates how one can develop cancer at several points in the "one carbon cycle," otherwise known as methylation. (I'm a stage 3 cancer survivor, so it's been an important lesson for me...)

Getting it balanced properly is a very worthwhile exercise.;)
 

Attachments

  • locasale one carbon cancer.pdf
    1.1 MB · Views: 9

GreenMachineX

Senior Member
Messages
362
Methylation does many important tasks in the body. It's important to get it running properly, not as just an intellectual exercise, or it can drive serious diseases.

Not to scare you, but the attached article from a researcher at Cornell illustrates how one can develop cancer at several points in the "one carbon cycle," otherwise known as methylation. (I'm a stage 3 cancer survivor, so it's been an important lesson for me...)

Getting it balanced properly is a very worthwhile exercise.;)
Yes, the multi's could be causing your various symptoms.

Were your symptoms that sent you to the ER dangerous? Could be. Low potassium is not good. The chest and arm pain are not good. I've had both of those before.

You may or may not be able to derive potassium from food. I have to supplement.

I agree with Learner1 that if you can afford it, the NutrEval is a good place to start. Get the doctor's copy which has interpretations (not just the patient's copy), and beyond that, I have an additional interpretation in my signature link.

ps. If you want a specific person to reply to your post, either quote their message in your reply, or tag them like this @caledonia. Then they will get a red flag and know that you tagged them.
Thanks. Yeah, the Nutreval looks like a good test and eventually I’ll get it done, but it’s do darn expensive. I need to find a doctor That’ll do it with insurance...

How do y’all find products that have such small amounts of these things? For example, Methyl B12 always comes in 1mg lozenges; do you cut that up in ultra tiny pieces or have I not found the right low dose product yet?
 

caledonia

Senior Member
Thanks. Yeah, the Nutreval looks like a good test and eventually I’ll get it done, but it’s do darn expensive. I need to find a doctor That’ll do it with insurance...

How do y’all find products that have such small amounts of these things? For example, Methyl B12 always comes in 1mg lozenges; do you cut that up in ultra tiny pieces or have I not found the right low dose product yet?

There are various methods to subdivide supplements. Go to my signature link for the document called "Start Low and Go Slow".