This topic contains 20 replies, has 1 voice, and was last updated by Eli 1 year, 2 months ago.
July 4, 2012 at 2:43 am #2755
I was diagnosed with MTHFR two days ago and my brain is going to explode trying to figure out whats what with this gene mutation. I was hoping it meant I could now jump higher or run faster than the “normal” people, but thats apparently not the case. Damn it!
Anyway, simple question for those of you who have been researching MTHFR or doctors who have been treating MTHFR. Again, I am new to this so I apologize if this sounds idiotic. If my body can not break down folic acid shouldn’t I avoid eating any foods high in folic acid? i.e., leafy greens, legumes, avocados, broccoli, asparagus, citrus fruits, ect..? Isn’t that just going to create my issues?
I am currently not on any type of medications and my homocysteine levels are at 8. No current side effects of the mutation that I am aware of.
Thank you everyone,
ChrisJuly 4, 2012 at 3:44 am #2756
Yes, you should avoid foods fortified with folic acid. Except your list of foods to avoid isn’t correct because you’re confused about folic acid versus the different forms of folate.
Folic acid is synthetic and is the form added to grain products and many vitamin supplements.
What is found naturally in foods are various forms of folate. There are 5 forms of folate found in foods:
5-methyltetrahydrofolate, 5-formyltetrahydrofolate, 10-formylfolic acid, 10-formyldihydrofolate and tetrahydrofolate. Unless you have additional uncommon genetic mutations, eating foods with those naturally occurring forms of folate should be beneficial for you.
Which type of MTHFR mutation do you have, and are you homozygous or heterozygous? MTHFR impacts many other biochemical processes in addition to homocysteine.July 4, 2012 at 1:08 pm #2760
Thank you Lynn for your reply.
From the labs results I got back it states that “This patient is homozygous (T/T) for MTHFR polymorphism. This indicates that this patient’s enzyme is thermolabile and does not effectively metabolize folic acid(folate).”July 4, 2012 at 3:36 pm #2762
You are homozygous for the C677T mutation. Apparently you weren’t tested for the A1298C mutation, but it’s rare to have 3 MTHFR mutations, and since you sound like you’re healthy, it’s highly unlikely you have an A1298C mutation. A homozygous C677T mutation is the one most associated with elevated homoysteine. The optimal homocysteine level is 6.3.July 5, 2012 at 12:26 am #2767
So as of now I assume the best corse of action for me would be to avoid foods fortified “enriched” with folic acid, but do eat foods high in folate. Correct? Does anyone suggest a suppliment such as HomocysteX or a l-methyfolate even though I seem to be healthy? Thanks!July 5, 2012 at 4:24 am #2769
The first sentence of your last post is correct. And since your homocysteine is a bit above optimal, I would recommend supplementing with a product containing L-5-methylfolate and methylcobalamin, be it homocysteX or another brand. Do you really have no health complaints whatsoever?July 5, 2012 at 1:22 pm #2772
As far as I can tell I do not have any health complaints. Can you maybe share a few of the most common that are not glaringly obvious. Issues that I may have that may not cause me to run to the doctor.
I went to the doctor for maybe the second or third time in twenty plus years because my lower back was hurting. It was in my kidney area and I worried a little bit about infection or kidney stones. I do a lot of manual labor with my job so a simple back strain isn\\\\\\\’t out of the question. Its happened before and will happen again. We tested my urine and I decided to order full blood work seeing as how I will turn 40 shortly. Figured I should be a responsible adult. See what that got me!
All results cam back within a reasonable range except for two issues. The MTHFR mutation and my Lipo and Apo proteins are just on the high side. Other that that Im in the optimal range per this test.
As far as how to I feel and how do I feel I am functioning, just fine. Maybe Im luck or maybe its odd, but Im thankful. Maybe the worst is yet to come by for now Ill just stay quietly optimistic and adjust my diet because I have always eaten rather healthy.
Thanks again LynnJuly 5, 2012 at 9:32 pm #2780
I would interpret your lipo and Apo proteins being on the high side as a warning. Since homo C677T is linked to cardiovascular disease, and those tests being towards the high end are signs of oxidation, it tells me you are not in totally optimal health. I’d be curious to see how those factors are impacted by a C677T protocol such as that suggested by Dr. Ben which includes methylcobalamin and methylfolate.July 6, 2012 at 12:09 am #2782
I will keep you informed as to the results of my next bloodwork. It will not be for another 6-9 months though. I am assuming they might be linked so taking a recommended supliment will hopefully bring these numbers down. My doctor is recommending slow release Niacin. Thoughts? Thanks Lynn for sharing your opinion. Lots to learn and read up on.July 6, 2012 at 2:07 am #2784
Niacin? Heck no, no way, not for anyone with MTHFR, especially homo C677T. Niacin uses up methyl groups as it gets metabolized. It’s the opposite of what you need. Many doctors think it’s a great non-pharma way to reduce cholesterol, but most of them are ignorant about MTHFR.
You might read the blog of Dr. William Davis, a preventive cardiologist. Here’s a lipo post. http://blog.trackyourplaque.com/2011/07/lipoproteins-zero.html. The last time I read him, Dr. Davis was a big niacin proponent, but he may well be ignorant about it’s effect on those with MTHFR mutations.July 6, 2012 at 2:31 am #2785
Much obliged Lynn. Lots of studying to do.July 6, 2012 at 10:40 pm #2794
Would you mind sharing with me a few other brands of the supplements other than HomocysteX Plus you might recommend.
ChrisJuly 7, 2012 at 12:35 am #2795
It looks as if you may not have found this page yet – all sorts of lifestyle and medication suggestions for C677T
Hope this helps!July 7, 2012 at 12:39 am #2796
A couple years ago Freddd and about 10 others at forums.phoenixrising.me did personal trials of some supplements. All of the testers had specific symptoms that would appear when they became deficient in the tested item. Freddd reported Jarrow sublingual methylcobalamin and Enzymatic Therapy sublingual methylcobalamin as the only 5-star brands of the ones tested. All methylcobalamin is made via fermentation of bacteria, so there can be variations in potency within different batches made by the same manufacturer. It’s important to get a quality product. Based on his personal experience, Freddd advises placing the sublingual methylcobalamin under the upper lip for 45 minutes to maximize tissue absorption.
Depending on polymorphisms in the glutathione and methylation pathways, some people might do better with hydroxycobalamin. The merits of hydroxycobalamin vs. methylcobalamin can be a heated topic.
Freddd reported Solgar metafolin as the best methylfolate. Solgar metafolin is trademarked by Merck and is the same folate as what is used in prescription forms such as Deplin. I believe Dr. Ben’s products have metafolin in them.
Since then, other brands of methylfolate have come on the market. You want one that is the L- form, not the racemic form, which is a mix of L- and R-. One of the newer methylfolate products is called Quatrefolic. Dr. Ben has an article comparing methylfolates.
For adenosylcobalamin, Source Natural’s Dibencozide and Anabol Natural’s Dibenzoplex are supposed to be good.
I’m not aware of any other specific brand recommendations. You want to avoid any product that has folic acid in it.July 7, 2012 at 6:24 pm #2801
I’m so glad I came across this bc I was just diagnosed with it as well just the other day and I am lost… My doctor gave me a Rx of folic acid… should I not take it then? also what kind of doctor specializes in MTHFR? It was my ob/gyn who originally diagnosed meJuly 7, 2012 at 7:19 pm #2802
You should not take folic acid. Take the active form of folate instead, L-5-methyltetrahydrofolate (L-5-MTHF), sold as Metafolin by Solgar. Dr. Ben’s products also have metafolin in them. Quatrefolic is also an active folate. In addition to active folate, you need to take the active form of cobalamin. Methylcobalamin is probably preferable, Dr. Ben says some people do better with hydroxycobalamin.
There aren’t too many doctors that even know about MTHFR, let alone specialize in it. Dr. Ben has a short doctor list at this webside. Sterling at MTHFR Support has some docs listed there as well. I would suppose that hematologists should be familiar with MTHFR because it can cause clotting issues, but I wouldn’t count on it. Ob/gyns deal with MTHFR issues more because they can cause miscarriage and neural tube defects in the fetus.March 18, 2013 at 3:19 am #8416
Hi Lynn I’m confused I was reading on Dr. Ben’s page here somewhere that taking niacin can actually, be a help of something so maybe I better research this even more than I thought…March 18, 2013 at 7:15 am #8434
Renee, Niacin is the ‘antidote’ if you take too much methylfolate. Basically, your body is under-methylating, so you use methylfolate to correct this. If you take too much and end up over-methylating, niacin uses up the extra methyl groups to get you out of potentially a very uncomfortable situation, fairly quickly.March 21, 2013 at 4:17 am #9425
I was tested positive for a single copy of C677T and negative for A1298C over a year ago. I’m just now getting acquainted with Dr. Ben’s protocol. I was taking a sublingual B12 methycobalamin but it had also folic acid in it so now I’m looking into the methyfolate along with the methylcobalamin. However, my doctor says she’s not well versed enough to continue working with me on this. I have leaky gut and am struggling with detoxification. Does anyone know where I can order the supplements? I can’t find the source on Dr. Ben’s website for ordering or if he even has them although I do see where some of you are referring to the fact he does have them. Thanks for any information!March 21, 2013 at 9:37 am #9561
Bonnie, the website is called Seekinghealth dot com. Hope this helps! AllieOctober 9, 2013 at 9:22 am #377526
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