I get a lot of emails and comments on the blog asking similar questions. It’s not surprising because when faced with all of these genetic and health issues for the first time, a lot of the same concerns and anxieties come up. Unfortunately it’s impossible to come up with “one size fits all” answers for most of our vexing problems simply because we are all unique and dealing with individual biochemistry and genetic profiles. But there are several questions that do come up repeatedly that I feel confident providing some guidance and answers on. Remember, I’m not a doctor, just an informed patient who has had a lot of success turning my health problems around with a lot of dedication and the proper assistance. I hope some of these answers will help you.
Where/how can I find a doctor to help me with all of this?
Unfortunately most regular doctors (the ones in your insurance network) don’t know a whole lot about MTHFR and other gene mutations and how they affect your health. This is changing, with new educational programs available for those who want to learn and for those who have gone out of their way to master this new area of medicine. Research is also constantly evolving, with epigenetics research moving at lightning speed. There are also a lot of posers who know a little about MTHFR and are happy to take your money while they go about their learning curve, but who don’t really know how to help you get better. It’s a minefield out there right now so please try and get some word of mouth referrals as you look around and don’t be afraid to interview the doctor first about his or her experience.
My go-to place for doctor referrals is Dr. Ben Lynch’s MTHFR.net resource page, which lists doctors who have completed his training courses or attended his conferences. At the bottom of this page you can also find six links to physician associations with directories for practitioners who are also possibilities to consider. If a link seems to not work, try just going to the homepage of that site and looking for the directory in the main menu bar, as I noticed one or two of these links are broken without a redirect (but still take you to the intended site). The comments section of this resource page also has notes from other patients recommending this doctor or that, and providing feedback.
Another option is to do an online search for your city/state using the “MTHFR” keyword along with “doctor” or “practitioner.” This is more haphazard but could provide some leads if you are really struggling to find someone close by. You can also find quite a few chiropractors who are up to date on this information.
I was wondering if you might share what medication you take for hypothyroidism and your lab numbers?
After years of being undermedicated on synthetic T4 medication like Synthroid because my body couldn’t convert T4 to T3 effectively, I switched to Naturethroid last year and haven’t looked back. It’s probably not helpful to share my specific lab numbers with you because everyone is different, but generally you want to make sure that your doctor is running the following lab tests and you want your Free T3 to be in the upper quarter of the range with your Free T4 in the mid-range: TSH, Free T4, Free T3, thyroid antibody panel, Reverse T3.
What is a good folate supplement?
People with MTHFR gene mutations want to take the active forms of folate, which include methylfolate and folinic acid. You want to avoid the synthetic folic acid, which can be found in traditional supplements and fortified foods like bread, flour, processed foods, conventional pastas, etc. Dr. Lynch talks about the different forms of folate here. It is important to remember that you want to have an adequate intake of B12 as well in a form you can tolerate (preferably not cyanocobalamin). Dr. Lynch discusses all of this in his video on methylation and methylation defects.
There are a number of reasons why a person may not react very well to methylfolate. I don’t recommend trying to troubleshoot this yourself but if you must, please review Dr. Amy Yasko’s Simplified Methylation Protocol.
What is the right protocol for compound heterozygous?
Protocols are really not advised when dealing with these sorts of health issues. All the best practitioners advise against them. Please work with someone knowledgeable who can monitor your biomarkers and symptoms, develop an initial personalized treatment plan and follow up with you to adjust your supplements and diet accordingly.
What is the best prenatal protocol? Is it enough to take prenatals with the active forms of B vitamins for pregnancy? Do I need to take baby aspirin?
Again, I strongly advise against a protocol, especially when dealing with something as delicate as fertility and pregnancy. So many women want to start themselves on baby aspirin, for example, and this is not advised without working with a physician. You don’t have to look too hard to find a hematologist, OB/GYN, maternal fetal medicine specialist or reproductive endocrinologist who can, at the very least, run the appropriate thrombotic risk and clotting tests to determine whether baby aspirin is right for you and whether perhaps you need something stronger in pregnancy like Lovenox. You will also want to receive counsel on your diet and lifestyle along with other supplements and medications you may be taking. You don’t want to be on your own with these things during something so important as pregnancy so please seek advice from a professional.
One point I will comment on, however, is the prescription of Folgard still being made for MTHFR patients. This is a medication containing high dose folic acid (and other inactive forms of the B vitamins) and was the gold standard treatment for MTHFR for many years. We now know that you are better off taking the active forms of folate and B vitamins during pregnancy and avoiding folic acid. High dose folic acid can potentially cause more problems. So should your doctor prescribe you this supplement, that would be a good time to point him or her in the direction of the new research on Dr. Lynch’s website.
Personally my favorite prenatal formula is the Seeking Health Optimal Prenatal, which I take myself. It has been physician formulated and contains all the right nutrients to support MTHFR and other common mutations that may cause problems during pregnancy. As for whether this provides “enough” of the vitamins: that is impossible to say without knowing your overall health situation. Some people definitely need higher doses of methylfolate and perhaps even other supplements, but you need to work with a practitioner to figure that out. And I always recommend getting your health optimized well before trying to conceive for the best outcomes.
Check out my comprehensive pregnancy and MTHFR guide for more information.
Where can I find unfortified bread/wheat/pasta products?
Most gluten-free flour blends will not be fortified. If you’re not gluten-free you can find unenriched flour at places like Whole Foods.
What’s the best diet for people with MTHFR?
As there is no “one-size fits all” protocol for MTHFR there is also no best diet for everyone with MTHFR. Many people go gluten-free and/or dairy-free because those two substances contain very large proteins that are difficult to digest. Many people with MTHFR are dealing with issues like leaky gut and inflammation, which can be exacerbated by these proteins and cause further disruption to their already delicate systems. Gluten-free flour also is often free of folic acid, so going gluten-free can remove a lot of the synthetic folic acid from your diet. But inherently, gluten- and dairy-free eating do not assist the mutated MTHFR gene in making more enzyme, nor do they correct the mutation or cause the cells to function normally.
Many people who are dealing with significant health concerns turn to the Paleo or GAPS diets, both of which offer different things to those who are struggling with their health on various levels. It all depends on what your body needs and what shape your digestive system is in. With a Paleo diet, some people may also need to be conscious of how much protein they are consuming, as some meats can be high in methionine and this is contraindicated for those with elevated homocysteine.
I encourage people to do food sensitivity testing to minimize the amount of inflammation in their diets and also to look at the areas where their body is struggling. For example, those with pre-diabetic conditions will need to modify their sugar and carbohydrate intake. Perhaps the best diet you can put yourself on is one that is tailor made for your body. Speak to your practitioner about this and see whether he or she can work with a nutritionist to guide you on making healthier food choices.
If you have emailed me and I have not responded, or left a comment on the blog that has not been published, it is simply because all personal health related questions must be posted on the community forums. I regret that I am unable to answer individuals personally via private email about their health concerns. This is simply a function of my personal time and resources as this site is operated only by me on a voluntary basis. If I take the time to answer a question I want to ensure that others may also benefit from the information. And as I’m not a doctor, perhaps another member of the community may be able to better answer your question, or may provide additional information from his or her own experience. It’s just an economic policy that I hope you all can understand. Wishing you all good luck and good health on your road to wellness!
Disclosure: I am an affiliate of Seeking Health and will receive a small commission from the proceeds of any sale made via the link in the prenatal supplement section of this post. Be assured that any income goes to maintaining the free information I provide on this website. I use these supplements myself.