My MTHFR Protocol

I’ve meant to update about MTHFR and my health for so long! I’ve promised it to many and I’m finally sitting down to write it out. I think I arrived at such a better place after it that I forgot to post at all. I guess that’s a pretty good testament to this protocol! 

If you want to know what MTHFR is (and you should, since nearly half of all Americans have it), check out this blog specifically about MTHFR. If you want to follow the journey of discovery and where I came from, see this post about antibiotics & anxiety and this one about Candida and this one about over-methylation.

My discovery of MTHFR began with a bug bite and a prescription that immediately caused panic attacks. It took me months to bounce back from that. I truly believe my discovery of MTHFR helped me to have a successful last pregnancy and a healthy last baby. But I still wasn’t feeling great. 

When I had survived pregnancy, postpartumbaby’s tongue- and lip-ties, and was beginning to feel like a human again, I started to get serious about my symptoms. My most concerning symptom was this undercurrent of jitters. It wasn’t quite like anxiety, but more like a high, fast vibration that I couldn’t subdue. Oh sure, I could self-medicate with wine and I reduced sugar so as not to encourage it, but it was always there. I continued my regimen, but it wasn’t working. 

I met with my NP, who is an expert with MTHFR. She presented me with a protocol that I was nervously excited to begin. She pointed out that my current regimen (which included a Thorne vitamin) was inconsistent for my needs. It was causing my jitters! All throughout my pregnancy and postpartum challenges, my vitamin was actually making things worse. Insert huge sigh here. 

So here is what I did, including affiliate links below. (Purchasing via these links will not affect your price at all, but will contribute a tiny bit to the creation and maintenance of this blog.) 

The First Step:

​I purchased Seeking Health Active B12 5000. Sometimes this isn’t available on Amazon, but I’ve had no problem getting it directly from Seeking Health itself.

I cut a tab in fourths. For one week, I took a quarter of a tab every morning on an empty stomach. I kept careful watch over myself and my jitters. I didn’t feel terrible, but I didn’t feel better either. 

After a week (or maybe 2, because I was scared to increase the dosage), I switched to a half of a tablet. This also seemed to settle pretty well. When you’re hypersensitive to every feeling in your body, thanks to years of anxiety, jitters, and uncertainty, it’s hard to know what’s causing what, but I convinced myself to trust the process. 

The goal is to increase until a dose is uncomfortable and then step back to the previous dose that felt good. I tried off and on for weeks to get to 3/4 of a tablet. I had jitters. I had discomfort. I thought maybe it was a stomach bug one week. Another time I tried, I thought it was PMS messing with me. Or I didn’t get much sleep this week, so that could be it. So many possibilities, but I ended up back at half a tablet every time. 

When I spoke to my NP about it she said it was clear to her that I was a half-er. And that’s ok! I wasn’t necessarily trying to get up to a point of tolerating a whole tablet of B12. I was trying to get up to my perfect dose and for many people a half is just good enough. 

The Next Step: 

Once I was on the dose that worked for me, the next step was to add in Folate. But not just any folate and definitely not folic acid. Methylfolate is the supplement needed since MTHFR prevents my body from being able to break down and absorb folate. I purchased Bluebonnet Earth Sweet Cellular Active Methylfolate 1000 mcg. 

My mornings began with a half of a B12 tablet and a whole methylfolate tablet. And then I waited. Would I feel bad? Would it cause jitters? Would it make things better or worse? 

Let me say that I felt better than I had in years. I felt energized and jitter-free and just so free in my body. I wish I could say that amazing feeling lasted, but I think my body got used to it and the euphoria settled into normalcy. I’m not complaining! I’ll take normal any day. 

I cannot issue medical advice, but I am happy to share my journey and my resources with you. I think this protocol is worth trying if you have or suspect you have MTHFR. MTHFR is SO common and can cause so many issues, including but not limited to: 

  • depression
  • anxiety
  • autism
  • ADHD
  • thyroid disorders
  • autoimmune disorders
  • chronic pain disorders
  • schizophrenia
  • bipolar disorders
  • heart problems
  • fibromyalgia
  • Parkinson’s disease (and other tremor disorders)
  • preeclampsia
  • postpartum depression
  • strokes
  • hormone & fertility problems
  • Alzheimer’s disease
  • migraines

….and many more

If you want to know if you have MTHFR, you can go through your doctor or through 23ndme. If you go through your doctor, you need to ask for both 1298C and 677T, since most doctors will only do 677T. Also, know that your insurance may not cover it. Honestly, it is probably cheaper to use 23andme rather than your insurance. I spent more through insurance getting tested only for MTHFR than I did on one 23andme test that has been able to tell about ALL my genes and gene mutations! Use this link, my personal referral link, to order your 23andme kit and I will help you unlock your raw data to access all your genes and find out if you have MTHFR! https://refer.23andme.com/s/theresasingleton

In peace and health, 
​Theresa

Too Much of a Good Thing: Over Methylation

This is Part 5 of a series chronicling my health saga of Anxiety & Antibiotics, the Candida Diet (in To Candida Diet or Not to Candida Diet), Testing Outside the Medical Realm, and Mother-what? MTHFR Discovery & Treatment. Please read those posts if you haven’t. They will let you in on a lot of things before diving into the fascinating subject of over methylation! 

The first step in reintroducing B vitamins into my system was methyl folate. Now, remember, I’ve been pretty bad off as far as anxiety, stomach, nausea, and heart palpitations go, so I wasn’t hoping for a miracle, just some relief. I ordered the methyl folate and began taking it.

Day 1: I was nervous but didn’t feel anything, really.

Day 2: I was surprised how good I was feeling, lots of energy and low anxiety.

Day 3: I cried because I felt sooooooo good. It was truly amazing.
Night 3: I had a horrible experience which included cold sweats and an ever-increasing heart rate. I thought I either had the flu or was having a heart attack. It passed quickly, but I was deeply shaken.

Day 4: I didn’t take the methyl folate and I began extensive research on over methylation.

So, for many people, taking a small dose of methyl folate wouldn’t have a negative effect. In fact, many people take much larger doses regularly and feel fabulous. I am super sensitive to vitamins in general and especially B vitamins. I’ve been so desperate to get back on track with my health that I was hoping things would be easier. But alas… 

I have since changed my course of action. I have been taking a prenatal with methylated B vitamins (affiliate link below). The full dose is 3 per day and I am only taking one. Eventually, I will get to 3, which will give me the 800 mcg of folate recommended for women of child-bearing age. I think it’s crazy that I’m trying to get to 800 mcg when some people take upwards of 5 mg! (Some people take 50 mg for depression!) This is where I am, though.

While taking it, I haven’t experienced the horrible palpitations I had on Night 3, mentioned above. I have, however, had a sensation of heartburn, or something similar to it, that has had me feeling like I need to burp – the kind of burp you’d have if you drank a large soda… It’s a very strange, unnerving feeling that is fairly constant, like a pressure building inside of me. I imagine the methyl donor going to my cells and as the cells divide, there may be inflammation or nitric oxide or detoxification flooding my body. Something is happening in there!

Symptoms of over methylation:

  • Achy Joints
  • Acne
  • Anxiety
  • Headaches
  • Insomnia
  • Irritability
  • Migraines
  • Nausea
  • Palpitations
  • Rash
  • Sore Muscles

It’s sad, really… Try to do the right thing and wind up with some other side effects.

I’ve been following Dr. Lynch on MTHFR.net and HIGHLY recommend that you follow him as well, if you suspect that you have any MTHFR issues going on. There are things that can be done BEFORE starting methyl folate, which may prevent these over methylation symptoms. Dr. Lynch talks about them here. The list includes electrolytes to balance potassium and magnesium levels, glutathione to help increase glutathione in the cells when they divide, and superoxide dismutase to break down superoxide into hydrogen peroxide.

Dealing with over methylation symptoms whether you’ve done the above recommendations or not? Dr. Lynch recommends in this article the following supplements to help: Niacin as nicotinic acid (50-100mg) to quench excessive SAM, liposomal circumin (250 mg) to quench inflammation, hydroxocobalamin to reduce nitric oxide and hydrogen sulfide levels, electrolytes, and glutathione as mentioned above. He also mentions reducing leafy greens until side effects go away because they contain methylfolate and nitrates.

If you’re like me or any of the many clients (and friends and family members) I’ve spoken with, you might be annoyed by all of this. Why can’t you find out what’s wrong and then take something to fix it and go back to normal life? Well, I think we’re programmed by the pharmaceutical industry to think there should be a pill to fix things. We’re blinded by the promises of pills that fix any random ailment, despite the long lists of side effects. Yes, side effects are a possibility of anything you take. Yes, sometimes there are things you should do before starting a treatment plan, to prevent side effects. And yes, sometimes the thing you think will help just doesn’t. But you can’t give up can you? I don’t really believe that if I went on an anti-anxiety medication my troubles would be behind me. Aside from sedation, I don’t think anything would stop me from living in this situation right now. I can’t get away from it and I can’t get outside of my body. Better to stare it all straight in the eye and take a deep breath, dive into the research and choose a path, which is what I have done. I’m going to add the hydroxocobalamin lozenges (affiliate link below) to my regimen in the hopes that helps clear up what I assume is nitric oxide and/or hydrogen sulfide levels in my body. Stay tuned!

Mother-what? MTHFR Discovery and Treatment

This is part 4 of my healing journey – if you haven’t read previous posts, please do. They are Antibiotics & AnxietyTo Candida Diet or Not to Candida Diet and Testing Outside of the Medical Realm.

So, I had the doctor order me a blood test for MTHFR, despite his hesitation and questioning whether there was a diagnosis code he could use. You see, the medical world (mostly) views MTHFR only from a homocysteine perspective. Since I hadn’t had any heart problems or bad blood tests, there wasn’t much he could use for a diagnosis code. (Read: Fault in the system, since there are MANY things that could indicate MTHFR) He chose anxiety as a diagnosis code and time will tell whether the insurance company will pay for it.

Then I had to wait over the weekend for results. That was hard enough. I urged myself not to research because if it was negative, then where would I be? Come Monday morning my husband called me from work. I knew he wouldn’t call if it was negative. Nerves shaking, I answered his call. He told me the doctor wanted to talk to me. Okay, so it’s worse than I thought, I decided. Not exactly, I had to listen as the doctor talked to me about how the test isn’t easy to read and the result of the test doesn’t actually mean anything. (Was I hearing this correctly?) Finally, I asked, “Is there the number 1298 on the test?” When he confirmed, I asked if it was positive. He said, “Yes, but that doesn’t tell us anything.” On the contrary, it told me a lot. I had to wait to see the test with my own eyes that evening and figure out exactly what it meant.

There is so much to say about MTHFR, so much that is written about it and yet, so much that isn’t understood. To sum it up, an enzyme needed to break down folate (a necessary B vitamin) is compromised and doesn’t work efficiently. Think of all the foods that are “vitamin fortified” – they are fortified with folic acid (among others). If your body can’t break down folic acid (to turn it into methyl folate), it’s just another vitamin floating around unused in the body. Not only that, in its effort to turn into methyl folate, it blocks the receptors at the blood brain barrier, so real folate couldn’t get through if it tried. Remember how I posted that I didn’t have ANY B vitamins when I got my Organic Acids Test back? Big red flag. Since I take prenatals everyday and eat a very healthy diet, I should have had B vitamins! Too much folic acid and not enough folate (the natural version) can cause a lot of problems if your body doesn’t know how to break down folic acid and convert it to methyl folate. Basically folic acid is the synthetic version of the natural folate (found in spinach, garbanzo beans and lentils). When you can’t break folic acid down, it clogs the receptors in the brain, so they can’t get the natural folate either.

So what do I have? I have the Heterozygous 1298 / Normal 677. This means that one parent passed down a 1298 mutation. My test literally reads: “Positive for one copy of the A1298C variant”.

Check out this chart showing all the possible things that can be caused by MTHFR (images taken from : http://www.mindmeister.com/12694596/mthfr-related-health-problems )

I don’t know about you but if an estimated 50% of Americans have a mutated variant copy, don’t we deserve to know? If MTHFR is linked to all the above disorders and diseases, toxicity and addictions, shouldn’t we find out? What if something as simple as taking a methylated version of B vitamins is all we needed to feel better and help our bodies detoxify and thrive, while preventing disease?

Well, that’s my first step: methyl folate. I posted this on my Facebook page last week, but will share the affiliate link again below, because it’s worth knowing about:

Dr. Neil Rawlins of Richland, WA has researched MTHFR for years. When patients say they can’t afford the blood test, he suggests trying methyl folate (as shown above). If symptoms improve, it was a simple issue of methylation dysfunction. Yes, you deserve to know if you have an MTHFR variant. Yes, you deserve to know what can help it. But, if you, like many, can’t afford to test for it, you can try methyl folate in such a small dose as 1 mg a day, increasing gradually, and seeing how it helps you feel. Your body NEEDS methyl folate in order to create serotonin, dopamine and norepinephrine, among other neurotransmitters. The inability to convert folic acid to methyl folate can lead to depression, anxiety (ding! ding! ding!), fibromyalgia, chronic fatigue, migraines, schizophrenia, dementia, Parkinson’s disease, and more!

As we all know, folic acid (or folate) is necessary when trying to conceive. The catastrophe that could’ve happened had I gotten pregnant with zero vitamin B in my system is something that shakes me up every time I think of it. Many women with infertility issues and a history of miscarriages have an MTHFR variant. Many women (and men) are helped greatly by the inclusion of methylated vitamin B. Methyl folate is just one methylated B vitamin, but it is a crucial one to start the journey with.

I will speak further on over-methylation symptoms and treatments as well as the absence of a “magic pill” that makes everything better. Today, I just wanted to start the conversation and inform you of your right to know about this VERY COMMON gene variant and how it could be wreaking havoc on your health. Don’t let your doctor say, like mine did, that this is just something people are writing about on the Internet and we don’t see any connection to anxiety (or birth defects, or chronic fatigue), because it’s not true!