Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

searching_for_help

compound hetero MTHFR

Recommended Posts

My daughter is hetero for both MTHFR C677T and MTHFR A1298C. Other than supplementing with Folapro, is there anything else that can be helpful? Also, any suggestions on dosage for the Folapro (L-methylfolate) would be greatly appreciated. At this point she is only getting about 1.7 mg when combined with her multivitamin through Yasko, and I'm assuming this wouldn't be enough. (She is 21 years old.) I know Deplin is around 15 mg, and wondered if it would be better to have her on that.

Share this post


Link to post
Share on other sites

DD is heterozygous for the A1298C deletion. She is currently taking 1000 ug L-5-methyltetrahydrofolate (ProThera) and 30 mg P-5-P (B6 from KlaireLabs) 3x weekly (mon, wed, fri), and methylB12 1000 ug sublingual 1-2x daily.

Share this post


Link to post
Share on other sites

My kiddo is heterozygous for A1298C and she takes 100mcg of methylfolate and 1000mcg of methyl B-12 sub-lingual every day. I finally had to put her on a multi that has no folic acid, and we have seen improvements since then. Kiddo is 63lbs.

Share this post


Link to post
Share on other sites

1.7mg is a fairly high starting dose, even for an adult. Most of the methylation gurus suggest adults start at @400mcg (micro, not milligrams) and then move up to @800mcg. Some adults do need more than this but I wouldn't assume this until you start low and work up. Taking more than you need can produce the same negative symptoms as having too little.

 

When you take methylfolate, you also need to take B12. Some people do best on methylB12 while others do better on hydroxyB12 or adenoB12, depending on the status of your other genes in the methylation cycle. If you only know her MTHFR status and don't know the status of these other genes, I might err on the side of caution and start with hydroxyB12. But some of this is trial and error and she'll have to try both to see which one makes her feel better. If you do know the status of her other genes, you need to determine whether the other genes make her likely to need more or less methyl donors and then use the form of B12 that's best for that need (methylB12 gives you more methyl donors than hydroxyB12). Perque B12 is one brand that has hydroxyB12.

 

From what I can tell in my own family and from people here, an adult may need anywhere between 400mcg-15mg. This is a huge range. Start low, work up and have an eye out for when your DD starts to get too moody as you build up. This would be a sign you've crossed over her line and are giving too much. Not everyone needs methylfolate every day. Like Rowingmom, my DD8 only takes it every other day (67mcg). But also like Rowingmom, she takes B12 every day (1000mcg sublingual). MethylB12 is poorly absorbed and so you see doses being much higher compared to the methylfolate simply because it's estimated that only 10% of a sublingual B12 gets absorbed.

 

If you're giving both methylfolate and B12 (don't use cyanoB12 - not very bioavailable) and you don't see changes, then consider moving up to doses in the Deplin range (I think they make a 7.5mg and a 15mg pill). But I'd start much lower to start out.

 

Also, like Mayzoo, I've needed to move away from any multivitamin that contains any folate. DD gets very moody. We now use individual vitamins instead of a multi. We also limit fortified foods like cereal.

 

All this said, MTHFR is not the only gene worth paying attention to. The 30 other genes in the cycle can also set you up for issues. So treating MTHFR can definitely help but realize it's not the whole picture. Good luck!

Share this post


Link to post
Share on other sites

Thank you all so much for your help. I'm sorry I failed to mention we have started her out low on the Folapro, but was concerned that I'm not dosing correctly. She is on B12 also. We are using Hydroxy B12 due to her COMT/VDR status.

 

She is on LOTS of supplements (I know that is not the correct way to do things, but we are exhausted and will try anything.) She has PANDAS, anorexia, extreme OCD, extreme anxiety, exercise compulsion since junior high, and she's 21 now. Without abx, she immediately declines into severe depression, hopelessness and starts talking about wanting to die. I'd love to get her off abx and work on the gut, but when we tried that before everything went downhill.

 

I don't know if upping the Folapro will help, but think I'll give that a go. We have ANOTHER new doc visit in a few weeks - hoping this one will be willing to do some testing. We haven't found anyone willing to search out what's going on all these years. I would bet many of her problems are due to her SNP's, but I wouldn't doubt if she has some infection issues as well. I know one of her mutations (I think the CBS?) can cause a dump in nutrients, and several others are related to neurotransmitters, so if I could figure out all the methylation stuff, we might get to a better place.

 

Sorry, went off on a tangent...I'm hormonal and tired today! Thank you all for your help!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...