Finding out you have some strange, obscene-sounding genetic variant is no walk in the park. You start searching online and find some blog posts and the odd article explaining it, most of the technical information going right over your head. You find out that you’re not alone – far from it – but the more you read the more you realize just how much of a bugger this thing really is. Nobody can tell you how much or what exact supplements YOU should take. You know you need methylfolate but then there’s all that stuff about overmethylating and methyl trapping…then you find out MTHFR may not even be the most significant issue for you. There’s the transsulfuration pathway and dozens of other SNPs that could be causing problems. It’s doing your foggy head in…
Mine too, actually. I have nothing but empathy for you. Normally I would recommend heading to MTHFR.net to begin your research but after finally having a chance to get through Dr. Amy Yasko’s free eBooks, I think someone just coming in contact with this subject matter will benefit from the way she lays out the material. Then you can visit Dr. Ben Lynch’s site to look up your specific questions and you’ll have a little more background on everything before reading his articles and watching his videos, which are outstanding. The first Yasko book I would read is called Autism: Pathways To Recovery, but it is not just about autism. Everyone with MTHFR and other methylation defects will benefit from reading this and following her protocol. She has some other books in the resources section of her site, such as Genetic Bypass and General Important Information To Guide You on Your Road To Wellness. All of this is good information to get you started.
You’ll also find a lot of helpful information in the files section of the MTHFR Gene Mutation group on Facebook. This is an excellent community where you can find others dealing with MTHFR and many other related health issues. I’ve started a resources page on this site where I will be continually updating links and references that I find useful.
Obviously the best person to talk to about all of this is a knowledgeable doctor or health practitioner who can develop a customized treatment plan just for you. Sadly, these are very difficult to find. Most of the research and information about MTHFR is just coming out and it takes many, many years for research to be absorbed by the mainstream medical establishment. Some of the doctors I have spoken to have already written off MTHFR. For them it has come and gone, dismissed as a cause for many of the problems that thousands of people with MTHFR are suffering from. I’ll be getting into this more in my next post, but I’m here to tell you that from what I’ve seen in my life so far, MTHFR is not something to be taken lightly. In fact, genetic mutations are responsible for a host of health ailments. It’s not necessarily the mutations themselves that cause problems but the combination of genetic mutations and the environment of the person who has them. Factors like diet, lifestyle, toxin exposure, bacteria and viruses all play a part and thus gene mutations can essentially be turned on and off depending on your exposure level and by vitamin and mineral deficiencies.
The good news is that you’re here. You KNOW about this health problem. There are thousands of people out there just like you (such as myself) who are now aware of this problem. Some wonderful doctors have taken MTHFR seriously and are prepared to help you. The key is to find these people and learn as much as you can every day about prevention and improving your own health outcomes. For me the greatest difficulty lies in the world around me. There are so few packaged goods that I can eat anymore, restaurants that I could sit down at, products I can use that it’s become overwhelming. But that also means that I can put blinders on to all of them. I move through the world seeing only what is good and healthy for me now. The rest blurs in the distance. A healthier you is ahead…you just have to reach out and take it.
Many people dismiss “Dr. Google” but I’m not one of them. While I don’t advocate running online searches for your symptoms and then assuming you have some illness based on what you read, sometimes you have to do your own research. Learn how to become a better online researcher. Ask lots of questions even if they seem silly. Yes, you do have to be aware of what people are telling you and double check information. But one should already be doing this in every aspect of their lives. Reach out to others and talk about your health issues – you’ll find lots of supportive people online who are dealing with similar problems and will be happy to assist. When it comes time to present information to your doctor, find published scientific studies instead of just articles from websites that may or may not be seen as “legitimate.”
I found doctors who could help me by talking to others and doing diligent internet research. It was trial and error but I finally feel like I am getting the help I need in my life right now. My primary doctor works effectively with fibromyalgia patients so perhaps looking for those doctors in your area is a good step. There are several doctor lists on the various websites or give a shout here with your local area and I will see if I can help you find someone. Sometimes, unfortunately, getting good care means traveling a long distance. I would be prepared to do that if you cannot handle this on your own and there is nobody nearby to help you.
What books, websites or studies do you recommend for others with methylation gene defects?
HI, I have the double C677T gene mutation. I am 67 years old and am fortunate that I have not experienced any serious health issues related to this mutation, at least not that I am aware of. I do know my body reacts to a variety of medications that over the years I realize I cannot tolerate such as dextromathorphan found in otc cough medicines, Alleve, and a few others. I just know not to putt much of any medication in my body. I just don’t tolerate medicines well. I assume this is due to the double C677T. I have avoided vaccines for this reason but at my age am very concerned that I need to get some recommended vaccines, particularly the one for pneumonia and the flu. I would like advice as to whether vaccines are safe for me due this this double mutation. What do the experts advise? I can’t find any info on vaccines and MTHFR mutations.
I live in Heath, Ohio (zipcode 43056)
I am asking for a name of a MTHFR practitioner in the area where I live. I live about 45 minutes east of Columbus, OH.
I am currently working with Sue Vogan and she introduced me to methyl-life. My mom is 72 years old and she was recently diagnosed with type 2 diabetes. I would like to see if there is a practitioner who could work with my mom and figure out her gene mutation.
Andrea Post author
Please try this directory, Denise
Varina Suellen Plonski
I was diagnosed with an MTHFR mutation when I passed out at a friend’s house from shortness of breath. Turned out I had blood clots in my lungs.
I found your site from a pin on Pinterest. I never knew there was any kind of site or support groups for this! I just know I’m on warfarin for the rest of my life.
I’m curious – are you saying there is some kind of link between MTHFR and hypothyroidism? I’ve been telling my doctors I think I have a thyroid problem for years. WHY didn’t my Hematologist tell me this? Or am I jumping to conclusions here because you have two separate things going on?
Andrea Post author
Hi Varina – this article talks about the MTHFR/thyroid connection
Varina Suellen Plonski
Thank you, thank you, THANK YOU! In just three articles I have already learned more about what’s been going on with me than in the three years since I was diagnosed. In fact, it looks like my MTHFR is responsible for MOST of the health problems I’ve had all my life, from my dysmenorrhea and hysterectomy from cervical dysplasia to my pulmonary emboli, to my poor cholesterol levels and my ADHD! As much as I use my computer and look stuff up on the web, it just never occurred to me to look up the MTHFR, because my doctor assured me that “it’s not a problem,” and I should just take the Jantoven for the rest of my life and I’d be fine. Well, I’m *not* fine, and I feel about that word the same way you do!
THANK YOU for directing me to the other sites, and the articles, and all of this new information. When I can afford it (I’ve been unemployed for over 5 years) I will go back to my endocrinologist and tell him about my MTHFR and see what he has to say. Until then I’m kind of stuck, but at least now I’m stuck WITH information! Thank you again!
Andrea Post author
You’re very welcome, Varina – and good luck with it all!