Prescription L Methylfolate--What is the difference?

[popmom]

One of my dds was diagnosed with major depressive disorder and an ED and ADHD. The pdoc prescribed Zoloft along with Vyvanse. She wrote up a list of supplements she would like dd to take as well:

Probiotic (our choice)

L Methylfolate (medical food) brands to choose from are Enlyte, Enbrace HR, or Deplin. 

Omega 3 fatty acids

multivitamin

She indicated that the above mentioned brands of L Methylfolate require a prescription, but she didn't write one. She said to check with online pharmacies because they have better prices. I was trying to process everything and didn't think to ask why she didn't write a script, but she said I can text her any time with questions. (She's basically a concierge type doctor.) I don't mind texting her and asking her what the differences are, but I'd like to get a patient's perspective, too.

There are tons of options for L Methylfolate OTC. Amazon had a ton. What is the difference? I'm also trying to find out the difference between the 3 brands she recommended. I've googled it, but couldn't find any info comparing the three.

Thanks in advance.

ETA: now that I think about it, I think the pdoc wants me to price out the 3 options and decide which one I want to go with, and then she'll write the prescription for whatever I choose--what's most cost effective.

Edited May 4, 2018 by stephensgirls

[Katy]

I buy Thorne through Amazon because they are consistently the cheapest and we have Prime for shipping.

I buy both the prenatals and this b-complex.

 

Some of the prescriptions contain synthetic folic acid at a higher than typical dose, which you absolutely DO NOT want. You want natural folate in foods (beans and greens) or methyl-folate in supplements.  Avoid anything with folic acid.

[Liz CA]

My phosphorylated B comes from Metabolic Maintenance available on Amazon. It's working well - I take mine for a mild form MTHFR. Perhaps it depends on why the doc wants your dd on it?

[PeterPan]

She ran genetics? And did she look at the TPH2 gene? She might be able to do 5HTP instead of the Zoloft. If the doc didn't run genetics, I don't know. I mean that's presuming a pretty significant thing there (MTHFR defects) without verifying. And if she did, then see if there's the 5HTP issue. TPH2, rs4570625, risk allele G.

[popmom]

We have not done genetic testing. My husband and I were just talking about this over dinner. I think I will do 23 and me--if I can verify it will give me the answers I need. The Methylfolate is expensive--at least the prescription required brands are. I don't want to give her something if it's not absolutely necessary.

[popmom]

1 hour ago, Katy said:

 

 

Some of the prescriptions contain synthetic folic acid at a higher than typical dose, which you absolutely DO NOT want. You want natural folate in foods (beans and greens) or methyl-folate in supplements.  Avoid anything with folic acid.

 

I will go to each brand's website and see if I can find out if it has folic acid. Seems like that would totally defeat the purpose of the supplement.

[popmom]

Katy, what is so bad about folic acid?

[prairiewindmomma]

Deplin comes in 7.5 and 15mg capsules. Most OTC comes in 1mg capsules. That is the only difference I have found as both are l-methylfolate.

folic acid v. the methylated version....it comes down to bioavailability and convertibility. For those with MTHFR issues, you need the methylated version and to stop artificial folic acid intake (ie enriched flour products)

 (And for others with other issues—getting the genetics on how efficient you are at making dopamine et al or serotonin et all can help you hack your mood.)

[gardenmom5]

is the dr ramping her up? starting slowly?   or just - here take this rx dose?  (7.5mg or 15mg are rx doses.)    it is imperative she ramps slowly.  start with 1mg, adding a mg every week. if she does really well - you can start with two.  (divide the doses am/pm.  when she's stable, you can just take one dose a day) 

I knew better  (dudeling had been on it for several years with his ND before I started with a DO) - but wasn't paying attention to the dr (i've since fired after a host of things) who knew enough to be dangerous (but not enough to really know what she was doing) and put me on 15mg right off the bat.   then, when I let my dr know I was having problems - she told me to stop cold turkey.   at least my brain had woken up and knew enough to know that had it's own problems.  I ended up dropping to 1mg - for MONTHS, because that was all I tolerated.  I very very slowly ramped up, and at times dropped back down.   I'm currently on 10mgs.  (compared to dudeling on 15mgs - 1ds is on 20mgs)

has she actually been tested for mthfr mutation?  (I''m homozygous)   it won't hurt her, but it might not be as helpful if she doesn't.

to be frank . . .  screw the rx methylfolate. I've had deplin.  OTC  Thorne is better quality.   I've gone from thorne to deplin, and feeling like I went backwards.   then I switched from deplin to thorne - three days later.  . . . yep, this is what it's supposed to feel like.

I get my methylfolate from a compounding pharmacy that uses the same source as thorne, but I've also bought throne in 1mg & 5mg on amazon s&s, and 15mg on amazon for a ds who doesn't have a current rx for it.   Pharmica carries it. (as do most all  compounding pharmacies)

 

RX methylfolate comes in 7.5 mg and 15 mg tablets/capsules.  if you go with one of the others - make sure to have capsules and not tablets  (capsules have no binders, and fewer fillers.  -which can cause reactions in someone sensitive.   and more will be absorbed).

 

[gardenmom5]

54 minutes ago, stephensgirls said:

Katy, what is so bad about folic acid?

folic acid is 100% synthetic. you will not find it naturally occurring in any food.

for those with a methylfolate defect  (i'm homozygous) - the receptors say "oh, look, isnt' that pretty?"  as compared to actual folate.  so, the synthetic folic acid will bind with the folate receptor - that can't absorb it, .. so, it blocks the body from using actual folate.

 

to make matters worse- too many (even in the medical community) don't know the difference between folic acid (synthetic) and folinic acid (natural) and use the term "folic acid" interchangeably.  but they're not.

[gardenmom5]

1 hour ago, PeterPan said:

She ran genetics? And did she look at the TPH2 gene? She might be able to do 5HTP instead of the Zoloft. If the doc didn't run genetics, I don't know. I mean that's presuming a pretty significant thing there (MTHFR defects) without verifying. And if she did, then see if there's the 5HTP issue. TPH2, rs4570625, risk allele G.

5htp is wonderful . . . .  be aware you can do a rx dose which is higher than the bottle.  I nearly gave up, but went higher (after talking with my dr) and finally I felt like "me".

1 hour ago, stephensgirls said:

We have not done genetic testing. My husband and I were just talking about this over dinner. I think I will do 23 and me--if I can verify it will give me the answers I need. The Methylfolate is expensive--at least the prescription required brands are. I don't want to give her something if it's not absolutely necessary.

23&me will give you the information.  I had previously done just the mthfr  . . .23&me is most birds with one stone.  then my ND ran it through pure genomics and genetic genie (I was able to do it also) for reading actual information.  they're both free.  (though genetic genie does ask for a "donation" of $5 'if you found the information useful)  you upload your 23&me results - and it only takes a few minutes at most to get the results.   you can do the regular 23&me - you don't need to upgrade to the "health".

promethease - had very little of actual medical value.   but they have 'shiny' reports. . . .

[popmom]

Thank you, all! This has been very helpful. Keep it coming. :)

[PeterPan]

1 hour ago, stephensgirls said:

We have not done genetic testing. My husband and I were just talking about this over dinner. I think I will do 23 and me--if I can verify it will give me the answers I need. The Methylfolate is expensive--at least the prescription required brands are. I don't want to give her something if it's not absolutely necessary.

Yes, 23andme will give you more than enough data. You can upload the data to KnowYourGenetics and check her methylation stuff for free. You can come to LC or back to this thread and gab. There are boards for it, though I don't hang on them. Promethease is a helpful general starting place. I take the sample reports from the other sites and work backwards. 

When he's saying ED, is he saying aggression and bipolar type stuff? Because, honestly, you want to be careful. That list is probably all going to be useful in the end, but it's starting a lot all at once. Even just starting the Vyvanse with other stuff, I mean, mean, you won't be able to tell if something is making her not feel well. And if the doc is incorrect and making leaps, he could actually be giving you bad advice due to lack of concrete genetic evidence. 

So yes, if you run genetics, you could turn up concrete, treatable things. The 5HTP we're talking about is the precursor to melatonin (for sleep, insomnia) and serotonin (anxiety, depression). So while there could be an argument to do Zoloft first then 5HTP, my question would be why? And why give her Zoloft over sam-E, which is comparatively safe, also a methyl donor (since the pdoc seems to think she's an undermethylator) and also a precursor that would raise her serotonin? Stats on teens and SSRIs are bad. It would be nice to have options. You need to be safe, but you'd like to have options.

My ds turned out to have that TPH2 defect and also a VDR. Both my kids were defective on the VDR. Vitamin D Receptor. Something so simple, but vitamin D pulls methyls off methylB vits. When we got my ds on niacin, vitamin D, and the 5HTP, his serious aggression issues just totally poofed. At Christmas we were trying to sort out whether we were going to do mood stabilizers or what, and now he's totally placid and calm. 

[popmom]

3 minutes ago, PeterPan said:

Yes, 23andme will give you more than enough data. You can upload the data to KnowYourGenetics and check her methylation stuff for free. You can come to LC or back to this thread and gab. There are boards for it, though I don't hang on them. Promethease is a helpful general starting place. I take the sample reports from the other sites and work backwards. 

When he's saying ED, is he saying aggression and bipolar type stuff? Because, honestly, you want to be careful. That list is probably all going to be useful in the end, but it's starting a lot all at once. Even just starting the Vyvanse with other stuff, I mean, mean, you won't be able to tell if something is making her not feel well. And if the doc is incorrect and making leaps, he could actually be giving you bad advice due to lack of concrete genetic evidence. 

So yes, if you run genetics, you could turn up concrete, treatable things. The 5HTP we're talking about is the precursor to melatonin (for sleep, insomnia) and serotonin (anxiety, depression). So while there could be an argument to do Zoloft first then 5HTP, my question would be why? And why give her Zoloft over sam-E, which is comparatively safe, also a methyl donor (since the pdoc seems to think she's an undermethylator) and also a precursor that would raise her serotonin? Stats on teens and SSRIs are bad. It would be nice to have options. You need to be safe, but you'd like to have options.

My ds turned out to have that TPH2 defect and also a VDR. Both my kids were defective on the VDR. Vitamin D Receptor. Something so simple, but vitamin D pulls methyls off methylB vits. When we got my ds on niacin, vitamin D, and the 5HTP, his serious aggression issues just totally poofed. At Christmas we were trying to sort out whether we were going to do mood stabilizers or what, and now he's totally placid and calm. 

 

I was referring to an eating disorder for ED. Sorry for the confusion. Thanks for the info on 5HTP--I'm very interested in that. One of my older dds tried it, and it really messed with her--made her worse off. I can't remember what it was exactly--I think she couldn't sleep and had anxiety??? I'll have to ask her about it. It would be interesting to get her tested, too.

I was already looking in to sam-E to go along with the Deplin. It's all so complicated. Makes my head hurt. 

What stats are you referring to when it comes to ssri's and teens? I wouldn't say the stats are bad. I might say it's debatable depending on who you talk to. The pdoc today was explaining that the black box warnings about suicide came about because of bipolar teens. She said for several years the psych community withheld ssris from teens after the warnings were issued  and suicide rates went up. 

After going to each brand's website, I have determined that the Deplin is the way to go if you're going the rx route. The active ingredient appears to be Metafolin and only that--no folic acid. If I can find an OTC supplement containing Metafolin, that would be ideal because I could start at a low dose. There are apparently only a few manufacturers that have permission to use the Metafolin in their products, but that means that Deplin isn't the only option. 

[popmom]

Btw, PeterPan, that's really amazing about your son! So encouraging.

[PeterPan]

Oh, that makes more sense! I was trying to sort out the contradiction of emotional disturbance and the rest. But yeah, Vyvanse with an eating disorder makes sense. 

The 5HTP slurps up methyls, so yes it would make an undermethylator feel worse. But that goes back to my point, why start the methylfolate with no labs, no genetics, no nothing? I don't know, just me. 

You can be an undermethylator (MTHFR defects) AND have the 5HTP issue too. My dd tried the 5HTP this semester, and while she needs it, it made things more of a mess with her undermethylation issues. When she comes home next week (Lord willing), we'll try to get her on and get it up and all balanced out. We'll probably have to do other things that raise her methyl levels, because she is heterozygous for the MTHFR defect. 

I saw in another thread she's starting the Vyvanse tomorrow. I hope that goes really well for her! My dd takes it, and it was evident quickly that it was a good fit for her. First med, first dose, just a good fit. Hopefully it will be that way for your dd too. 

On the 23andme stuff, you can order from amazon and receive the kit pretty quickly. I think I even saw the kits at Walgreens, though I think the gig there is you pay a small amount upfront and the remainder as a lab fee. So if there's a sale, cheaper to go through amazon or order directly. You're looking at maybe a 3 week turnaround. Your doc may be onto something with the methylfolate, when you combine that with your other experience. That's the nice thing about genetics, when you can start to unlock stuff and figure out why things were happening.

[PeterPan]

I think dd is using the Thorne methylfolate. Really, I think the reason people want the prescription version is to get their insurance to pay for it. I'm not sure there's evidence that it's *better* particularly. And me, I really like when I can just go on amazon, order it, boom done.

[popmom]

Just now, PeterPan said:

I think dd is using the Thorne methylfolate. Really, I think the reason people want the prescription version is to get their insurance to pay for it. I'm not sure there's evidence that it's *better* particularly. And me, I really like when I can just go on amazon, order it, boom done.

 

Same! I love my Prime! 

We are dead set on doing the testing, now. I think the kits may be on sale right now??? I'm about to check Amazon. I'll definitely report back on the LC with an update once I get results. Heck, I kinda want to do our whole fam. We're a hot mess over here.

[gardenmom5]

50 minutes ago, PeterPan said:

 it's starting a lot all at once. ...... .... .you won't be able to tell if something is making her not feel well. And if the doc is incorrect and making leaps, he could actually be giving you bad advice due to lack of concrete genetic evidence. 

 

this  - you really won't know if somethings working or something else is causing trouble.  

 

6 minutes ago, PeterPan said:

I think dd is using the Thorne methylfolate. Really, I think the reason people want the prescription version is to get their insurance to pay for it. I'm not sure there's evidence that it's *better* particularly. And me, I really like when I can just go on amazon, order it, boom done.

bingo.  i personally hate deplin and will never use it again, and at least I can afford to pay out of pocket for thorne.  the compounding pharmacy i use has the same source as thorne - and is more expensive than deplin, but cheaper than thorne.  my current insurance won't pay for the compounding pharmacy.  previous ones have (they pulled out of our country)

[gardenmom5]

8 minutes ago, stephensgirls said:

 

Same! I love my Prime! 

We are dead set on doing the testing, now. I think the kits may be on sale right now??? I'm about to check Amazon. I'll definitely report back on the LC with an update once I get results. Heck, I kinda want to do our whole fam. We're a hot mess over here.

yes - I think they're currently 30% off. . . I should have gotten dudelings off last week . . . they were 40% off.

[Katy]

13 hours ago, stephensgirls said:

Katy, what is so bad about folic acid?

 

I think this has already been pretty well covered by others above, but about 30% of the US population has at least one copy of a couple different genetic "defects" that mean your body doesn't process folic acid (which is synthetic) as well as natural folate (which is the natural form occurring in foods such as beans and greens). What happens if you have the genetic "defect" and you eat folic acid? Your inflammation goes up dramatically, which is linked to many different kinds of diseases.  I'm putting defect in quotes because if more than 30% of people have this gene it is a NORMAL variation, more common than having blonde hair!

There was some folic acid in processed foods when I was a little kid, but in the early 90's it was decided that supplementing with folic acid could prevent neural tube defects, and it was added to almost every processed food, including things like most varieties of white rice. Rates of neural tube defects did drop, but rates of conditions that are correlated to inflammation have risen. One of the things strongly correlated with inflammation is autism, for example - note I am NOT saying folic acid causes autism, as I currently understand it autism is likely many different syndromes, but a large number of the kids have these genes and lowering inflammation lowers their symptoms.  Others (me!) have had repeat miscarriages until I figured out I had the MTHFR defect, and I needed high doses of methylated B vitamins and a baby aspirin a day to stop losing pregnancies.

OTOH, this is such a trendy diagnosis right now that I would hesitate to simply buy the expensive vitamins without the genetic testing first.  MTHFR has gotten the press, but other genes that are part of the methyl process might be having a larger impact in health than MTHFR.  The CBS genes usually need to be addressed first, for example.  Some people find that taking large doses of methyl-b's make their symptoms worse, especially those with mental health issues.  High doses can increase anxiety, for example.

If you have a family history of blood clots, strokes, heart attacks, autism, miscarriages, a child with a history of strange, rare, and serious illnesses, or if you know you or your child has high homocysteine levels you should get the genetic test. And then I wouldn't jump to thinking avoiding processed foods and taking the right vitamins will be a magic solution.  Other genetic issues might need to be addressed first, like a lower protein diet.  It's complicated and tailoring your lifestyle to your individual genes is in its infancy, so the advice will probably change in the near future and many times again in our lifetimes.  But it is the future of healthcare.

[gardenmom5]

12 minutes ago, Katy said:

 

I think this has already been pretty well covered by others above, but about 30% of the US population has at least one copy of a couple different genetic "defects" that mean your body doesn't process folic acid (which is synthetic) as well as natural folate (which is the natural form occurring in foods such as beans and greens). What happens if you have the genetic "defect" and you eat folic acid? Your inflammation goes up dramatically, which is linked to many different kinds of diseases.  I'm putting defect in quotes because if more than 30% of people have this gene it is a NORMAL variation, more common than having blonde hair!

There was some folic acid in processed foods when I was a little kid, but in the early 90's it was decided that supplementing with folic acid could prevent neural tube defects, and it was added to almost every processed food, including things like most varieties of white rice. Rates of neural tube defects did drop, but rates of conditions that are correlated to inflammation have risen. One of the things strongly correlated with inflammation is autism, for example - note I am NOT saying folic acid causes autism, as I currently understand it autism is likely many different syndromes, but a large number of the kids have these genes and lowering inflammation lowers their symptoms.  Others (me!) have had repeat miscarriages until I figured out I had the MTHFR defect, and I needed high doses of methylated B vitamins and a baby aspirin a day to stop losing pregnancies.

OTOH, this is such a trendy diagnosis right now that I would hesitate to simply buy the expensive vitamins without the genetic testing first.  MTHFR has gotten the press, but other genes that are part of the methyl process might be having a larger impact in health than MTHFR.  The CBS genes usually need to be addressed first, for example.  Some people find that taking large doses of methyl-b's make their symptoms worse, especially those with mental health issues.  High doses can increase anxiety, for example.

If you have a family history of blood clots, strokes, heart attacks, autism, miscarriages, a child with a history of strange, rare, and serious illnesses, or if you know you or your child has high homocysteine levels you should get the genetic test. And then I wouldn't jump to thinking avoiding processed foods and taking the right vitamins will be a magic solution.  Other genetic issues might need to be addressed first, like a lower protein diet.  It's complicated and tailoring your lifestyle to your individual genes is in its infancy, so the advice will probably change in the near future and many times again in our lifetimes.  But it is the future of healthcare.

yeah- normal variation. 

there are three different gene defects (so far) that have been found to be linked to ASD, severity varies according to gene.

one of them - is mthf 1298.      it has also been linked to some forms of schizophrenia, bipolar, anxiety, and depression.

mthf 1298 also been linked to joint problems and TIAs (re: vascular)... so, I can see the manifestation clearly in my mother's family where TIAs and knee replacements were very common.  my sister has already had a knee replacement in her 50s. my (non-injury related) knee pain went away after I started mthf sups. 

where some women are afraid of breast cancer (there is none  in my family), my biggest medical fear are TIAs. my (only child) mother, grandmother, and many great-aunts all had them.  despite my grandmother and her sisters growing a decent amount of their own food since they grew up on a farm.

 

 

mthf is all about methylation - re: detoxing the body, processing enzymes, and absorbing nutrients.

we just went over all of my genes related to methylation . . . ..

[PeterPan]

32 minutes ago, Katy said:

The CBS genes usually need to be addressed first, for example.  Some people find that taking large doses of methyl-b's make their symptoms worse, especially those with mental health issues.  High doses can increase anxiety, for example.

Hey, can you bring me up to speed on the CBS? 

[PeterPan]

http://www.ggc.org/diagnostic/tests-costs/test-finder/syndromic-autism-panel.html Greenwood is running a panel of 83 genes, and I don't know that MTHFR is considered a marker. Comorbid, yes, marker or causative no. The bipolar I'm reading is more linked to over-methylation, which in the genetics I've run on my ds, is not being caused by an MTHFR defect. He has other significant defects in his methylation pathways causing his issues, yes, but not MTHFR. And he does have autism. Totally green, homozygous for gene genes on 1298C and 677T, go figure. But really, to me the 83 paths to autism explains that, kwim? And that's probably not the end of it. They'll probably find more.

KnowYourGenetics.com cranks out a helpful little report for free on methylation pathways. Some of this stuff I'm still trying to figure out. These places try to sell you on scads of stuff, and I really don't think it's linear. I think Ben Lynch over at Strategene has it right when he says they work together, that they have to be considered together when making a plan. 

Yes, there's a lot of discussion about inflammation in autism and they're going at it lots of ways right now. If you really want to drop into a vat of complexity, the blog Epiphany has enough to keep you busy perpetually. But I love how they try to look for homogenous markers and answers and explanations, when autism isn't a homogenous community. They're saying a high percentage are undermethylators, but then you have a whole slice who are distinctly NOT. It's a diverse group, and it just makes me chuckle. Guess it's the only thing that's funny about autism. We'll say I'm laughing at the researchers. 

That's how I found the tryptophan thing btw. There was an italian scientist working on a tryptophan defect as an autism marker. Merged that with a hit on the PureGenomics list and that turned out to be really helpful for my ds. But it's not helpful for everyone, just enough that it gets mentioned. They just couldn't turn it into a marketable biomarker for autism because the percents weren't high enough.

[gardenmom5]

since I recently upped my mthf dose - I started reading up more on side effects (which is generally caused becasue the body can't yet handle the dose - as opposed to not needing it.)

found a good article by a ND on side effects - http://dramyneuzil.com/methylfolate-makes-me-crazy/

and the every ubiquitous chart on methylation - http://dramyneuzil.com/what-is-the-best-b12-for-mthfr-mutants/

you might need to scroll down to see it - but it shows all the pathways and how they are connected.

as for side effects - she likened it to a parched area getting flooded.  it needs the water, but it can only handle so much

and I bring that up only becasue I'm wondering if i jumped the gun up to 10mgs . . .  niacin is one of the things used to mop up excess . . .

[PeterPan]

Also, if you have the COMT defects *and* the MTHFR defects, they're sort of contradictory. You can then be low on methyls but struggle to tolerate them. I haven't really figured it out because it's blowing my mind. It's another good reason to do the testing, because people don't know the context of their issues without that.

[frugalmamatx]

2 hours ago, PeterPan said:

Also, if you have the COMT defects *and* the MTHFR defects, they're sort of contradictory. You can then be low on methyls but struggle to tolerate them. I haven't really figured it out because it's blowing my mind. It's another good reason to do the testing, because people don't know the context of their issues without that.

 

If anyone can elaborate on this scenario, I'd appreciate it. That's me, plus the Vit D deficiency genes mentioned upthread too {I'm ++ for multiple ones of those, which explains why even though I live in the south, am outside a ton, and never use sunscreen my vit. D level without supplementation is about 5}. I've been through the Ben Lynch website but it's so confusing tbh. 

I've been taking Pink Stork brand 1mg Methylfolate for a month now, along with 1000mcg of Methylcobalamin {Nature's Bounty brand}. I can say I do feel better and the mental fog is markedly improved....but still not well. And I periodically have arm aches that seem to be tied to the methylfolate - I don't know if that means I need to go higher or lower or what exactly. I'm stuck figuring it out myself - my doctor says "just take a regular multivitamin and you'll be fine". And my insurance won't cover a ND. 

[Janeway]

Deplin has made a huge difference for me. That is all I can add to this conversation.

[PeterPan]

2 hours ago, frugalmamatx said:

 

If anyone can elaborate on this scenario, I'd appreciate it. That's me, plus the Vit D deficiency genes mentioned upthread too {I'm ++ for multiple ones of those, which explains why even though I live in the south, am outside a ton, and never use sunscreen my vit. D level without supplementation is about 5}. I've been through the Ben Lynch website but it's so confusing tbh. 

I've been taking Pink Stork brand 1mg Methylfolate for a month now, along with 1000mcg of Methylcobalamin {Nature's Bounty brand}. I can say I do feel better and the mental fog is markedly improved....but still not well. And I periodically have arm aches that seem to be tied to the methylfolate - I don't know if that means I need to go higher or lower or what exactly. I'm stuck figuring it out myself - my doctor says "just take a regular multivitamin and you'll be fine". And my insurance won't cover a ND. 

So are you taking vitamin D? 

[frugalmamatx]

5 minutes ago, PeterPan said:

So are you taking vitamin D? 

 I take 15,000 to 25,000 iu daily. That brings me up to low 50's usually. I've tried taking higher doses yet to see if I can get it to a better range {My endo would like to see me be 85+ for levels} but my body simply won't. 

[gardenmom5]

41 minutes ago, frugalmamatx said:

 I take 15,000 to 25,000 iu daily. That brings me up to low 50's usually. I've tried taking higher doses yet to see if I can get it to a better range {My endo would like to see me be 85+ for levels} but my body simply won't. 

haave you tried d3 with k2 added in drop form?

 

my od could never get her d3 to rise until she started mthf.   then it came upby itself.

[PeterPan]

1 hour ago, frugalmamatx said:

 I take 15,000 to 25,000 iu daily. That brings me up to low 50's usually. I've tried taking higher doses yet to see if I can get it to a better range {My endo would like to see me be 85+ for levels} but my body simply won't. 

Oh my. Taking that much D is dropping your methyl levels. I agree with Garden that you need to look at what else is impacting it not working and the levels not going up. 

We use K2 btw. We're taking 200 mg in capsules. It helps my ds' sensory, makes him easier to touch. I know there are things it's supposed to do for absorption of D, but i"m just saying with my ds we can actually tell when he doesn't get it.

[PeterPan]

I'll expand on the methyls and D thing. Vitamin D pulls the methyls off methylcobalamin. In our house, the effect is very similar to niacin, honestly. Not quite as strong, but similar. So when you're taking super high doses (25k IU??) of D as an undermethylator, that could be contributing to your not feeling well. 

These things all balance. Niacin, D, and 5HTP all slurp up methyls in the body. To different degrees, but they all slurp them up.

[Katy]

20 hours ago, PeterPan said:

Hey, can you bring me up to speed on the CBS? 

 

I'm not an expert on CBS, I've just been slowly figuring out what works for me.  I'm pretty sure the most comprehensive information I found was on Amy Yasko's site.  It's specific to autism, which you have to ignore if it's not a factor in your family, but it does go into great detail about different factors in over or under methylation, including CBS genes.

Note: I just linked to the information on her site today about the methylation cycle. It appears she's made a huge investment in improving her site. She used to have a long book about genetics and autism available for free there, and the methylation cycle was only part of it. IME with other sites when they spend this much improving usability they tend to commercialize content and start to sell things.  I haven't explored her site to see if that's true.  If she is now offering something for sale I haven't looked at those resources, only the old, free ones. Which you might still be able to find on an internet archive.

[PeterPan]

Yasko's site KnowYourGenetics.com cranks out a free report, when you upload your raw data and run it, that both tries to sell you on things with huge lists and explains a lot. I was using it just for the summary table, honestly, because the report was so long and overwhelming. Sounds like it's time for me to dig in, lol. I've done my own kids, and I was trying to help a friend who isn't genetically similar. This friend's doctor was telling her things that didn't jive (imagine that) with what I was reading online and didn't make sense. So I'm looking at the Yasko explanations and thinking now it's time to dig in there. 

It sounds like for CBS you just make sure you're taking B6, yes? This person is. It's just her doctor was blindly, with no clue, saying oh yeah we'll write a scrip for methylB12 (not the op, my friend's doc), and I was urging her to slow down and read harder. Not that it's terribly uncomfortable. I mean, I just laugh when people are like oh I took the methylated whatever and it was a bad experience. Imagine people who live with that ALL THE TIME. Yes, my ds has autism, and his levels were that high and higher all the time. It's NO WONDER he was scary!

What's weird with him is he has an ammonia issue and *doesn't* have the CBS defect. I triple checked his results. He definitely doesn't. So I'd love to figure out more things causing the ammonia production, because it might give me more pieces to help him. It's just it took me this long to stabilize the VDR and TPH2 issues and get his niacin to where it's all balanced and in-check. 

Maybe what I should do is run his stuff through Strategene. Thing is, their sample report lists a lot of SNPs 23andme is no longer running. They're running different SNPs on some of the genes. So I didn't know if Lynch let his stuff get behind or if he updated the SNPs. Maybe there's a forum and I could check?

Back to Yasko. Yes, she has a site doing stuff for sale, but then you snoop around and her KYG site does the same report for FREE. Super generous. :)

[frugalmamatx]

1 hour ago, PeterPan said:

I'll expand on the methyls and D thing. Vitamin D pulls the methyls off methylcobalamin. In our house, the effect is very similar to niacin, honestly. Not quite as strong, but similar. So when you're taking super high doses (25k IU??) of D as an undermethylator, that could be contributing to your not feeling well. 

These things all balance. Niacin, D, and 5HTP all slurp up methyls in the body. To different degrees, but they all slurp them up.

 

13 hours ago, PeterPan said:

Oh my. Taking that much D is dropping your methyl levels. I agree with Garden that you need to look at what else is impacting it not working and the levels not going up. 

We use K2 btw. We're taking 200 mg in capsules. It helps my ds' sensory, makes him easier to touch. I know there are things it's supposed to do for absorption of D, but i"m just saying with my ds we can actually tell when he doesn't get it.

 

hmm. That makes things complicated. I need to keep the Vit. D high or I suffer from joint pain and weakness to the point of being bedridden. And it also is a huge factor in helping my mental status - when my levels get low, I'm not someone I'd want to be around. So just dropping the D, even for a while to work on the Methyls probably isn't going to work either. I'll try backing down on the dose some and see what happens - I can tell pretty quickly when the mood issues start usually. 

It's intriguing that the effect is similar to Niacin. When I started the Methylfolate, the first week or so I was "warm". Amazing after having been chronically cold for most of my life. I'm still warmer than I was before, but I've gotten used to it. 

13 hours ago, gardenmom5 said:

haave you tried d3 with k2 added in drop form?

 

my od could never get her d3 to rise until she started mthf.   then it came upby itself.

 

I haven't tried with k2 yet. From what I understood - k2 is for clotting, right? I figured with my family history of clots and strokes that having thinner blood would be a good thing. 

And I'm excited about my next set of labs. By then I'll have been on Methylfolate and Methylcycobalamin for nearly 3 months. I am very interested to see how it affects my Vit D and thyroid levels. 

[Katy]

I'm not on the computer where I keep my notes, but my understanding was I needed a lower protein diet and to add some supplements that lower ammonia, such as yucca.  There's another one too, but I don't remember what it is off the top of my head.

[gardenmom5]

1 hour ago, frugalmamatx said:

 

I haven't tried with k2 yet. From what I understood - k2 is for clotting, right? I figured with my family history of clots and strokes that having thinner blood would be a good thing. 

And I'm excited about my next set of labs. By then I'll have been on Methylfolate and Methylcycobalamin for nearly 3 months. I am very interested to see how it affects my Vit D and thyroid levels. 

they've found  k2 also helps to raise d3.

my daughter had super low d3 (like - 10), and that was what her provider had her take to get it up.   My mthf/d3 have never done anything for my thyroid.  I'm on desiccated thyroid.

[PeterPan]

1 hour ago, frugalmamatx said:

hmm. That makes things complicated. I need to keep the Vit. D high or I suffer from joint pain and weakness to the point of being bedridden. And it also is a huge factor in helping my mental status - when my levels get low, I'm not someone I'd want to be around. So just dropping the D, even for a while to work on the Methyls probably isn't going to work either. I'll try backing down on the dose some and see what happens - I can tell pretty quickly when the mood issues start usually. 

It's intriguing that the effect is similar to Niacin. When I started the Methylfolate, the first week or so I was "warm". Amazing after having been chronically cold for most of my life. I'm still warmer than I was before, but I've gotten used to it. 

I haven't tried with k2 yet. From what I understood - k2 is for clotting, right? I figured with my family history of clots and strokes that having thinner blood would be a good thing. 

And I'm excited about my next set of labs. By then I'll have been on Methylfolate and Methylcycobalamin for nearly 3 months. I am very interested to see how it affects my Vit D and thyroid levels. 

I'm not saying drop your D. I'm saying that those levels are really high and you'd like to figure out WHY you have to take such an abnormally high dose. And if you get the D to working better, you may feel the effects of low methyls and of course be able to decrease the D as it will be working better.

The K2 is necessary for the D to work. Your gut is supposed to make it, so if your diet is off or you aren't making enough in your gut for whatever reason (diet, genetics, whatever), then you might benefit from it. 

[PeterPan]

1 hour ago, Katy said:

I'm not on the computer where I keep my notes, but my understanding was I needed a lower protein diet and to add some supplements that lower ammonia, such as yucca.  There's another one too, but I don't remember what it is off the top of my head.

I'll look up the yucca. I saw the protein mentioned in the context of CBS. Thing is, ds doesn't have that defect, meaning I don't have an explanation for the ammonia. That's an interesting question whether it's connected to days of eating more of one thing or another. It seems more like it's connected to physical stress. He had the ammonia frequently when he was exclusively nursed. Like I said, we don't have an explanation. I can't go dropping protein on him without solid evidence of what's causing it because he's a kid and growing. And it's not that common now, mainly when he's sick or something is really off with him.

[sowynne]

On 5/4/2018 at 11:48 PM, gardenmom5 said:

this  - you really won't know if somethings working or something else is causing trouble.  

 

bingo.  i personally hate deplin and will never use it again, and at least I can afford to pay out of pocket for thorne.  the compounding pharmacy i use has the same source as thorne - and is more expensive than deplin, but cheaper than thorne.  my current insurance won't pay for the compounding pharmacy.  previous ones have (they pulled out of our country)

Hi im hoping someone can help me. My husbands doctor prescribed enbrace and then enlyte for his depression. His insurance doesnt want to pay for it anymore. I ended up here and i went to the thorne website to find this similar product. I called them asking what product was comparable and they couldnt help me. So here i am hoping someone can give me some direction. Thanks

[MaloryArcher]

I am looking for an alternative to Enbrace because my ins dies not cover it. This is an old thread. Have you yet started a new job one? I’d like some insight on this topic, too. 

[popmom]

5 hours ago, MaloryArcher said:

I am looking for an alternative to Enbrace because my ins dies not cover it. This is an old thread. Have you yet started a new job one? I’d like some insight on this topic, too. 

I’m not sure exactly what Enbrace is, but  there is a generic form of Deplin. That’s what I had to get when my daughter was on it. She didn’t get any benefit from it, so she discontinued it after a few months. I can’t remember what the generic was called. Thorne is probably better. I would call the doctor and pharmacist (or a good compounding pharmacy) and ask them for options. Thorne is good, but it’s also expensive. Have you compared prices?

This thread has about as much insight into this topic as I’ve seen anywhere. I don’t think there’s much to add to all of the discussion above.

Edited July 3, 2021 by popmom

[MaloryArcher]

Thanks for the reply. Enbrace is a rx prenatal vitamin that contains methylfolate. I was prescribed it for anxiety and ADHD after my psychiatrist tested me for the the MTHFR gene.  I felt the effects in about 3-4 days. Love it. 

But Enbrace is $150 for a one month supply! My ins does not cover it and there is no generic. 
I’ll check out Thorne. 

Thanks again!

[scholastica]

I have had good luck with this one  MethylPro.

 

ETA: Link

Edited July 3, 2021 by scholastica

[MaloryArcher]

I came across Methyl Pro just now. 
Enbrace has 5.53mg methylfolate (Mg)

MethylPro and Thorne are similar with MethylPro slightly more methylfolate per dose (both with Ca instead of Mg) 

Thorne is a lot less expensive than MethlyPro. 
 

According to the EnbraceHr site the Mg makes the methylfolate more bioavailable. Not sure if there is any validity to that. 
 

I am leaning towards Thorne. 
I hate that my ins doesn’t cover the Rx methylfolate.