I have the MTHFR genetic mutation and extremely low folate on labs.

[CallieAndToby]

So I know I need methyl folate combined with methyl B12 and niacin but they make me so tired and weird feeling sick feeling during the day then cause insomnia at night. For awhile I powered through and took these meds at low dose at night and it got me out of the house when I was housebound and spent a lot of time in bed. I was prescribed regular folate by my PCP and it hasn't helped. Anybody else have the mutation and how do you take the supplements? I can't figure out the right time to take them, maybe at dinner time. I am also so so sensitive to these things I'm on tiny pieces. B12 tends to make me tired and not energizing. Edit: I am posting this because I saw on a forum that a young woman got a lot of help with her dysautonomia treating the MTHFR with methyl folate which I found to be true for me in the past. 

[MTRJ75]

I have it (just one I think, some have double?) and after reading so much about how important it is, the most recent stuff I've read suggests that a lot of people are probably making a bigger deal out of it than it is because they're finding so many people have the mutation. I seem to remember reading something about glutathione and even remember trying that for a while (and it wasn't cheap), but didn't notice any difference at all. 

[CallieAndToby]

5 hours ago, MTRJ75 said:

I have it (just one I think, some have double?) and after reading so much about how important it is, the most recent stuff I've read suggests that a lot of people are probably making a bigger deal out of it than it is because they're finding so many people have the mutation. I seem to remember reading something about glutathione and even remember trying that for a while (and it wasn't cheap), but didn't notice any difference at all. 

I have double and I literally went from housebound for a decade to being able to leave my house and do things with treatment so I don't think it's too big a deal. It helped me dramatically. My folate on recent labs is also extremely low and you have to use methyl folate, my mother is a nurse and said that having double is when it's worse and needs treatment. I'm just speaking from personal experience, it helped me but I get side effects from everything I take including supplements and vitamins. A woman at my church is a nurse and had a patient recommend deplin and said it helped her health drastically as well. My PCP was actually concerned but she prescribed normal folate which is wrong in the treatment of this mutation that's why I mention methyl folate which is what helped me in conjunction with methyl B12 and niacin which is a mild vasodilator. Edit: I also don't know if it helped the POTS or the many other diagnoses, I have so much going on it's hard to say, one thing is it definitely helped with fatigue and OCD. 

[MarcoS108]

On 7/29/2021 at 9:00 PM, CallieAndToby22 said:

I have double and I literally went from housebound for a decade to being able to leave my house and do things with treatment so I don't think it's too big a deal. It helped me dramatically. My folate on recent labs is also extremely low and you have to use methyl folate, my mother is a nurse and said that having double is when it's worse and needs treatment. I'm just speaking from personal experience, it helped me but I get side effects from everything I take including supplements and vitamins. A woman at my church is a nurse and had a patient recommend deplin and said it helped her health drastically as well. My PCP was actually concerned but she prescribed normal folate which is wrong in the treatment of this mutation that's why I mention methyl folate which is what helped me in conjunction with methyl B12 and niacin which is a mild vasodilator. Edit: I also don't know if it helped the POTS or the many other diagnoses, I have so much going on it's hard to say, one thing is it definitely helped with fatigue and OCD. 

It may have helped with your POTS because it is helping clear out dopamine from your basal ganglia which are a common cause of POTS as well as OCD and a hyperactive mind. This is one of my drivers of my POTS as well as cerebellar damage. Vitamin B2, riboflavin, is also very important for the methylation cycle so taking that may help a lot. A fair warning your pee will get very yellow after you take it.

[CallieAndToby]

22 minutes ago, MarcoS108 said:

It has helped with your POTS because it is helping clear out dopamine from your basal ganglia which are a common cause of POTS as well as OCD and a hyperactive mind. This is one of my drivers of my POTS as well as cerebellar damage. Vitamin B2, riboflavin, is also very important for the methylation cycle so taking that may help a lot. A fair warning your pee will get very yellow after you take it.

Thanks I need to start taking it again. I did take with B12 but not the riboflavin. It helped with OCD as well.