MTHFR & Anxiety

[Katy]

I saw this article on MTHFR, which I have.  I don't have anxiety, but I know quite a few of you have kids that DO.

 

http://www.news.com.au/national/south-australia/how-a-vitamin-cured-my-anxiety-elisa-blacks-story-of-lifelong-struggle-and-new-hope-for-the-future/story-fnii5yv4-1227251037624

 

The simplest & cheapest option might be to just try the right vitamin, and to only test later if it helps.  That's what I opted to do.

 

Then I got the 23andme genetic test ($100) and ran a Promethease report ($5) on the raw results.

[wapiti]

Interesting article - thanks for posting it!

[Soror]

I'm heterozygous but I've not yet found a small enough dose that my body can process without ill effects- feeling jittery and trouble sleeping. I even have Dr. Ben Lynch's multi-vitamins and I only take one and still have issues. So, it can be a bit tricky to get it all just right and it is easy to over do. 

[SeaConquest]

I'm compound heterozygous (the worst mutation), and have had tremendous improvement with anxiety and bipolar symptoms with the combo of folate, methylated B12, SAM-e, and Fish Oil.

[Soror]

fyi a site with a lot more info is 

 

mthfr.net

 

Please read up there, dosage recommended depends on your genetic profile and there are plenty more rec's besides supplements. 

[Katy]

I switched my prenatal vitamins to Thorne's, which I ordered from Amazon. And I basically stopped all other supplements at the same time, just to see if it mattered.  I figured it couldn't hurt if I didn't have MTHFR.  I started feeling better, and started losing weight.  Although it occurs to me now that weight loss and less appetite might have coincided with eating more carbs over the holidays, and I was losing weight because I didn't previously realize I am diabetic & can't tolerate higher carbs.  My family tends to get type 1 diabetes in 20's & 30's and have heart attacks and strokes at very young ages though, so I'm glad I found out.  I'm homozygous for a1298c, and I also have another mutation that hasn't been researched much yet- heterozygous for MTHFR 03 P39P.

[Guest Mutant-Girl]

This article does a really great job explaining the importance of the correct forms of the B vitamins.
It also explains how the B's work, and how important it is to support other antioxidants that aren't being produced in adequate amounts due to the methylation impairment.
Selenium and magnesium are other great supplements to improve the methylation cycle, L-glutathione is another important one.
mthfr.net as mentioned above is filled with great info, as is mthfrsupport.com

Worth googling mthfr and glutathione as well. Once I started supplementing with it, I noticed a huge boost in my energy levels and immune function. This was after using a high quality B complex for quite some time.

[maize]

Can you request testing for this through your regular Dr.?

[Katy]

Can you request testing for this through your regular Dr.?

 

Yes, but it's MUCH more expensive.  The coinsurance for those tests are about $300 through my insurance.

 

ETA:  also, insurance might not cover it unless you have family hx of early strokes or heart attacks or have had more than three misscarriages AND your insurance covers infertility treatment.

[JumpyTheFrog]

I'm heterozygous but I've not yet found a small enough dose that my body can process without ill effects- feeling jittery and trouble sleeping. I even have Dr. Ben Lynch's multi-vitamins and I only take one and still have issues. So, it can be a bit tricky to get it all just right and it is easy to over do.

I take this methylfolate/B12 http://www.amazon.com/L-methylfolate-Methylcobalamin-Adenosylcobalamin-Seeking-Health/dp/B00822JNTC/ref=sr_1_1?ie=UTF8&qid=1425860483&sr=8-1&keywords=Seeking+health+b12.

 

With a pill cutter, I can split it into quarters. In the past, B12 woul initially help me sleep better and then wear off. I finally started following Dr. Lynch'a advice and took 1/4 of a tablet to start. Since the fall, I have discoverd that 1/4 tablet daily helps my sleep and energy and anything more than 1/2 ruins it. I usually take 1/2, but if the insomnia starts to come back, I skip it for 3-5 days and then ai can sleep again.

 

It has taken me nine years to begin to get a handle on my insomnia triggers. I have also discovered that eating chocolate after 1pm keeps me awake at night. I also need to eat two small potatoes or sweet potatoes in the afternoon or evening to be able to sleep. I am generally grain free, but have noticed that when I have rice or corn, even though they are starchy, they don't help my sleep like potatoes or sweet potatoes. I eat moderately low-carb and even eating a lot of fruit doesn't work to help my sleep. Maybe it's related to my gut flora somehow.

 

Keep a log and start with low, low doses. Most b12 supplements have 3-5x more than the one that I take just a piece of. If you initially feel better for a few days and then start to feel worse, stop for a week or two and then start at a lower dose.

[SeaConquest]

Yes, but it's MUCH more expensive.  The coinsurance for those tests are about $300 through my insurance.

 

ETA:  also, insurance might not cover it unless you have family hx of early strokes or heart attacks or have had more than three misscarriages AND your insurance covers infertility treatment.

 

My shrink ordered the testing and it was covered by my insurance like any other lab. If you have a history of mental illness, I would speak to your psychiatrist or GP about getting testing.

[MaeFlowers]

Thank you so much for posting this. The woman in the article sounds so much like me. I have had anxiety and agorophobia for years and nothing seems to help. I am going to have to look into this more. Maybe there is still hope...

[Soror]

I take this methylfolate/B12 http://www.amazon.com/L-methylfolate-Methylcobalamin-Adenosylcobalamin-Seeking-Health/dp/B00822JNTC/ref=sr_1_1?ie=UTF8&qid=1425860483&sr=8-1&keywords=Seeking+health+b12.

 

With a pill cutter, I can split it into quarters. In the past, B12 woul initially help me sleep better and then wear off. I finally started following Dr. Lynch'a advice and took 1/4 of a tablet to start. Since the fall, I have discoverd that 1/4 tablet daily helps my sleep and energy and anything more than 1/2 ruins it. I usually take 1/2, but if the insomnia starts to come back, I skip it for 3-5 days and then ai can sleep again.

 

It has taken me nine years to begin to get a handle on my insomnia triggers. I have also discovered that eating chocolate after 1pm keeps me awake at night. I also need to eat two small potatoes or sweet potatoes in the afternoon or evening to be able to sleep. I am generally grain free, but have noticed that when I have rice or corn, even though they are starchy, they don't help my sleep like potatoes or sweet potatoes. I eat moderately low-carb and even eating a lot of fruit doesn't work to help my sleep. Maybe it's related to my gut flora somehow.

 

Keep a log and start with low, low doses. Most b12 supplements have 3-5x more than the one that I take just a piece of. If you initially feel better for a few days and then start to feel worse, stop for a week or two and then start at a lower dose.

That is the exact vitamin I have but even 1/4 is too much.  Interesting I was reading an article and the Dr. Lynch says he doesn't take it every day. I've also tried 1/4 every other day but so far that has seemed to be too much.

 

I've struggled with insomnia too and have been trying to figure it out. It seems mine is largely due to hormones- as when I got pregnant it immediately flared and didn't abate no matter what I did but then as soon as I had her, now days I have a flare right before my period for about 3 days. Carbs at night help me sleep too, too many during the day and I'm groggy during the day and wake up hot but the right amount at night helps. Too few carbs and the insomnia kicks in even worse. I've also found that too much activity at night keeps me wired too long at night, no night time workouts for me or even running around the house too much. If I happen to get ahold of something with MSG, no sleep. 

[JumpyTheFrog]

I have a flare right before my period for about 3 days.

I did a month long saliva hormone panel and found that my estrogen was low, but the progesterone was even lower. I also have especially bad insomnia the week before my period. My doctor suggested progesterone. Oral progesterone gave me side effects, but the cream (at a much lower dose than she suggested) helps immensely. I take it from day 14 until day 2 of the next cycle. (Stopping before then leaves me with a day or two of insomnia.)

 

The progesterone may be helping to balance my low cortisol problems.

 

The other thing that has helped a lot with my insomnia lately is a change in my bath routine. I always have to take a bath before bed to sleep, but in January I stopped reading and started listening to podcasts for 10-15 minutes instead. I put a red bulb in a desk lamp and that is the only light I use in the bathroom.

 

I had previously tried reading with orange safety glasses on with low lighting, but it never helped much. The red light podcast bath is helping a lot, at least when combined with my b12/methyl folate, potatoes, progesterone, and grain-free diet.

[Soror]

I did a month long saliva hormone panel and found that my estrogen was low, but the progesterone was even lower. I also have especially bad insomnia the week before my period. My doctor suggested progesterone. Oral progesterone gave me side effects, but the cream (at a much lower dose than she suggested) helps immensely. I take it from day 14 until day 2 of the next cycle. (Stopping before then leaves me with a day or two of insomnia.)

 

The progesterone may be helping to balance my low cortisol problems.

 

The other thing that has helped a lot with my insomnia lately is a change in my bath routine. I always have to take a bath before bed to sleep, but in January I stopped reading and started listening to podcasts for 10-15 minutes instead. I put a red bulb in a desk lamp and that is the only light I use in the bathroom.

 

I had previously tried reading with orange safety glasses on with low lighting, but it never helped much. The red light podcast bath is helping a lot, at least when combined with my b12/methyl folate, potatoes, progesterone, and grain-free diet.

My saliva test showed estrogen and testosterone both REALLY high, progesterone was ok, and I had read that (high estrogen) can also be the case with menopausal women, which causes the same problems for them. I tried progesterone cream a few times and it leads to depression and anxiety for me, my dr. speculated it was due to the fact I was still nursing. I've stopped now so I'm anxious to see if it is better during my next period. If not I might be moved to try the progesterone again and see what happens. I'm militant with the lights around here but I'm considering an eye mask.. I keep grain free too, mostly following the auto-immune paleo diet. The last HUGE thing is going to bed super early, every night, pitb but really, really helps, speaking of which it is time to go to bed :)

[JumpyTheFrog]

Carbs at night help me sleep too, too many during the day and I'm groggy during the day and wake up hot but the right amount at night helps.

Do you have hot flashes? Or is this a different feeling of hot?

 

For the last 7-8 years, I've had a problem where while I don't feel hot, I just can't sleep. The room MUST be under 63 degrees, plus a ceiling fan, a fan blowing across me, and the window fan (even in winter) for sleep to happen. If the room is 65, I am awake all night. A cold, wet compress across my head often helps me fall asleep when the room is too "hot." I put that in quotes because I don't actually feel hot during this time.

 

I have googled and googled and not really found anyone with this problem, which started about 7-8 years ago. The closest thing I could find was some info about a study where 75% of patients had their insomnia successfully treated by sleeping with a special mask on that pumped cool water over their head all night. The researchers believe that these patients brains weren't cooling off properly at night, which kept them awake.

 

Now one of melatonin's roles is to prepare for sleep by lowering body temp. I take 0.25 mg one and two hours before bed, plus 4 Source Naturals NutraSleep tablets. The book "Chronobiology" talks about how nearly everyone takes melatonin doses way higher than the brain makes. (I don't know how much the GI system makes.) I used to use higher doses but switched to a lower doses, taking it twice, which was inspired by their recommendations in the book.

 

The NutraSleep plus melatonin gives me MUCH better results than either by themself. I discovered that several years ago, after I knew about my need for a very cold room but before discovering the other triggers I mentioned above.

[maize]

I am taking a couple of kids to our family practice dr. tomorrow for checkups, I wonder if there is a good article about this from a reputable medical site that I could print out and take to talk with him about. 

[Katy]

For the last 7-8 years, I've had a problem where while I don't feel hot, I just can't sleep. The room MUST be under 63 degrees, plus a ceiling fan, a fan blowing across me, and the window fan (even in winter) for sleep to happen. If the room is 65, I am awake all night. A cold, wet compress across my head often helps me fall asleep when the room is too "hot." I put that in quotes because I don't actually feel hot during this time.

 

I have googled and googled and not really found anyone with this problem, which started about 7-8 years ago. The closest thing I could find was some info about a study where 75% of patients had their insomnia successfully treated by sleeping with a special mask on that pumped cool water over their head all night. The researchers believe that these patients brains weren't cooling off properly at night, which kept them awake.

 

Have you tried taking a cold shower before bed?  This cools you off & helps you sleep, especially if your kids are old enough to not need you during the night.  You can lock the door and sleep naked (or with just a sheet).

[Soror]

Do you have hot flashes? Or is this a different feeling of hot?

 

For the last 7-8 years, I've had a problem where while I don't feel hot, I just can't sleep. The room MUST be under 63 degrees, plus a ceiling fan, a fan blowing across me, and the window fan (even in winter) for sleep to happen. If the room is 65, I am awake all night. A cold, wet compress across my head often helps me fall asleep when the room is too "hot." I put that in quotes because I don't actually feel hot during this time.

 

I have googled and googled and not really found anyone with this problem, which started about 7-8 years ago. The closest thing I could find was some info about a study where 75% of patients had their insomnia successfully treated by sleeping with a special mask on that pumped cool water over their head all night. The researchers believe that these patients brains weren't cooling off properly at night, which kept them awake.

 

Now one of melatonin's roles is to prepare for sleep by lowering body temp. I take 0.25 mg one and two hours before bed, plus 4 Source Naturals NutraSleep tablets. The book "Chronobiology" talks about how nearly everyone takes melatonin doses way higher than the brain makes. (I don't know how much the GI system makes.) I used to use higher doses but switched to a lower doses, taking it twice, which was inspired by their recommendations in the book.

 

The NutraSleep plus melatonin gives me MUCH better results than either by themself. I discovered that several years ago, after I knew about my need for a very cold room but before discovering the other triggers I mentioned above.

hmmm... I have had hot flashes at times and then it is horrible sleeping. As of late it really doesn't feel like that, just like as you say my body isn't cooling down properly. I keep my house at 64 at night, like you, I've discovered it really helps with the sleep. I might try to lower the temp in the room. Just this past week that has been a problem again, timed with my ovulation, which causes a rise in body temp so I wondered if that was it. Perhaps with finally weaning I'm getting a good temp shift again. I don't like to bath or shower before bed actually, but maybe I should try it again though. The idea of a cold rag really doesn't sound appealing to me.

 

I tried melatonin the last time my sleep was really bad. The first night it knocked me out and then it did nothing, so I stopped trying. Coincidence or not, I had one of the worst nights last night. Got 3 hrs and then woke up to pee, I actually think I could have went back to sleep except the co-sleeping baby wouldn't stop moving, every time I was almost asleep- bam, she'd kick a leg or something. I told dh I'm done, my own body is screwed enough I can't have anyone else waking me up. She's moving out of the bed for my sanity. 

 

Every blasted time I start to plan things for the am, based on me sleeping decently I stop. It is madness.

 

I just ordered Lynch's electrolytes, it seems like things I could use anyway and perhaps it will help with sleep and/or my ability to take the b's. I won't be trying the b's again however until I can get a few decent nights sleep. 

[gardenmom5]

I've been tested, and three of my kids have been tested.

 

two of us are homozygous, and two are heterozygous.  we know dh is at least heterozygous.  dh  feels better taking it. the homozygous individuals (est. 16% - 20% of population) are symptomatic.

 

we all take various levels of mthf (I buy thorne off amazon.  that's the brand preferred by NDs.  it contains no flow agents or fillers.)   Rx versions 7.5mg and 15mg. end up being less per mg.

 

dudling's (hetero) ND is bumping him up to 15 mg 2x per day.  again.  that is based upon body weight.  15mg made a big difference for him.

dudeling and I both have rx for 15mg mthf. I buy it as Costco, and it's amazing how much the price can vary.  one tech mentioned drug prices change for them on a regular basis too.

 

one thing to keep in mind - there *can be* side effects if you take too much.  my dr put me on 15 from day one.  I knew better from ramping up and down with dudeling . . . . did I say there were side effects?  then she wanted me to stop cold-turkey.  I refused to do that, and slowly went down.     I had to go down to 1mg for weeks as that was all I tolerated.  I'm working up again.

 

also - if you have the mutation - do NOT take folic acid. (lots of foods are fortified with it too.)  folic acid is 100% synthetic, and it is not a bioavailable useable form.  the receptors inside the cells will fill up with folic acid - and then there are no receptors available for any folate you take.

but the cell can't actually *do* anything with the folic acid.  it must be converted to a useable form of folate - but with the mutation, the ability to convert is significantly reduced.  for compound (which means you can have two or even three mutated genes - that's from talking in person with multiple NDs who specialize in dealing with mthf mutations) it can be up to 90% reduced.

 

.

[gardenmom5]

maize, on 08 Mar 2015 - 7:32 PM, said:maize, on 08 Mar 2015 - 7:32 PM, said:

I am taking a couple of kids to our family practice dr. tomorrow for checkups, I wonder if there is a good article about this from a reputable medical site that I could print out and take to talk with him about. 

 

 

mthfr.net is a good site.  it's just one of the more reputable, and learned sites.  unless your dr doesn't do anything to keep up with new research, they've probably at least heard about it in passing.

 

I've heard dr. lynch speak in person (and I'm in an areas with many NDs), there's a degree of what he says I take with a grain of salt.  I also refuse to buy any of his supplements (I read labels for molecular forms) as I have found higher quality stuff elsewhere.

 

I see a DO, and she was familiar with it enough to want to test me.  My *eye dr* has read about this in medical journals.

[AngieW in Texas]

Is it better to take L-5-MTHF in the morning or at night?

What flavor does it have?

 

My 16yo is willing to give it a try. She is actually on a prescription proton-pump inhibitor right now, which is really helping with her breathing problems (that were aggravated by an inflamed esophagus), but apparently also uses up methylfolate.

 

She has all the symptoms associated with MTHFR. She also has all the symptoms associated with Ehlers-Danlos. I'm trying to get her an appointment with a geneticist so we can finally get her a diagnosis and know for sure what is going on.

[wapiti]

My understanding is morning, but my understanding may be flawed :).

[gardenmom5]

AngieW in Texas, on 09 Mar 2015 - 7:57 PM, said:

Is it better to take L-5-MTHF in the morning or at night?

What flavor does it have?

 

My 16yo is willing to give it a try. She is actually on a prescription proton-pump inhibitor right now, which is really helping with her breathing problems (that were aggravated by an inflamed esophagus), but apparently also uses up methylfolate.

 

She has all the symptoms associated with MTHFR. She also has all the symptoms associated with Ehlers-Danlos. I'm trying to get her an appointment with a geneticist so we can finally get her a diagnosis and know for sure what is going on.

 

 

form matters.  before ordering mthf - read this.  http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/  it talks about the different molecular forms of mthf supplements and what to look for.

 

it is unflavored. it comes in capsules.  dudeling has been swallowing them since he was six.

thorne (the otc brand recommended by naturopaths. same price everywhere. I order from amazon for convenience.)  makes 1mg and 5mg capsules.

 

START SMALL. start with 1 or 2mg a day for a few days before adding another 1 or 2mg.  split the dose between am/pm as it helps keep the levels consistent. watch for differences in energy/behavior/anxiety/etc.  dudeling does great at 15mg.  his ND is ramping him up to 30mg.  (so an adult can take more.)

 

while inadequate amounts can have "symptoms" . . . . . too much can cause a worsening of symptoms.   there is a happy middle ground and that varies for each person.

[Katy]

I take mine in the morning too, but mostly because those gel caps tend to make me burp, and I've noticed if I do them at night before I brush my teeth I'm likely to trigger my gag reflex and struggle not to vomit.  I have less issues if I take them in the morning.  I'm pretty sure it's not the vitamins though, I have the same reaction to all gel cap pills.