*Updated March 10, 2016*
After two and a half months on MTHFR supplements I was feeling pretty good. My homocysteine was (and hopefully still is) down and the fatigue I was feeling at the start of treatment was starting to ease. I had my second appointment with my doctor where we looked over my lab results and she ordered a few more tests. One of the things that came up was that my methylmalonic acid (MMA) was elevated. When you’re testing for B12 levels, this is the blood test you want because it shows whether you have a functional deficiency. If we went by my serum B12 levels, they would show no absolute deficiency – but this tells me nothing about what is in the cells. Just because a person has a high level of B12 floating around in her bloodstream does not mean that it’s being absorbed at the cellular level. In a similar way, folate levels are difficult to assess. High serum folate doesn’t show whether you have folic acid or methylfolate in your bloodstream, and it doesn’t tell you whether you have a functional deficiency. At least that was my experience.
So my doctor sent me home with two prescriptions, one for methylcobalamin (B12) injections and one for Deplin 7.5 milligram (mg) tablets. Off I went to the compounding pharmacy, learning that Deplin costs $500 if the insurance won’t cover it (ours does not cover vitamins). That wasn’t happening. I also sincerely do not believe that I need that much methylfolate. I’ll be speaking to my doctor about this at my next visit, but going from one mg of methylfolate to seven and a half just seemed like a huge jump. Especially as I’ve had symptoms of overmethylation when I took much more than that. Of course, this was before the B12 shots, but I will get to that in a moment. I have since learned that it’s possible to buy the Deplin online at a discount through Brand Direct – so if you need it and insurance won’t pay, consider looking there. **Update** It’s important to know which type of B12 to take – as it turns out, methylcobalamin wasn’t the best form for me. Check out this post about what forms of B12 are out there and how to figure out which one is right for you.
I was so afraid of my B12 shot that I put it off for almost a week. Would my heart race? Would I overmethylate? Would I feel like utter crap the first day? My husband was also procrastinating because he was not too thrilled about having to give me the shot. As it turns out, he’s an excellent nurse. He watched some videos and read some online articles and by the day it was time to do it, both of our nerves were relatively calm. We used a Safetec Insect Sting Relief wipe, giving a nice dose of both alcohol and lidocaine to the injection site (Dr. Neubrander recommends the buttocks). I barely felt a stick and then it was over. Great job, hubby!
I have committed to sharing all my mistakes here on this blog because hey, maybe someone else can learn from them. The lesson here is to double check your dosage before leaving the pharmacy. Make sure you are clear about how much methylcobalamin is in the vial and how often the shot is to be administered. I ended up with a month’s worth of B12 over the course of a week, taken in two separate injections. The pharmacist told me the prescription was weekly so I assumed that meant the entire vial was for one week. They also gave me an odd number of syringes, adding to my misunderstanding. Luckily, I had no adverse side effects. Yes, I know, I could have double checked with the doctor’s office but I’m a busy person and thought I knew what I was doing. It all turned out well and further investigation revealed that the amounts I took were not ridiculously high. But, you know, don’t try this at home.
There was still the matter of the suggested increase in methylfolate. From talking to other people with MTHFR I have learned that dosages of methylfolate change. I have also learned that ideally (everyone is different, consult your healthcare practitioner) one wants to be taking more B12 than methylfolate. As I mentioned, prior to increasing my B12 I couldn’t tolerate more than maybe 1,000 mcg (1mg) of methylfolate. Now that I’m getting more B12 I can handle a lot more methylfolate and I have been taking quite a bit more with no side effects. As Dr. Ben Lynch discusses in his video on methylation and supplementation, everyone’s needs differ. My understanding is that the methylfolate needs methylcobalamin (B12) to form methionine out of homocysteine. Without it, the methylfolate can’t do its job and it simply returns to the blood, allowing homocysteine to build up. This is called a methyl trap.
What are your experiences with methylcobalamin and methylfolate?