Someone posted on a POTS board about also having an MTHFR mutation. Immediately other people chimed in. That caught my attention because I’m heterozygous for the MTHFR 677 gene. Because 6 months ago I’d never heard of either POTS or MTHFR and now I’ve randomly heard of a bunch of people who have them both, that makes me wonder. What are the chances?
MTHFR is not a disaster like POTS, at least for me. I learned about it when I went to a naturopath for depression, thinking that depression alone was what was making me unable to get out of bed. He looked at my existing lab work and listened to my story, and about 10 seconds later he said he wanted to test for MTHFR mutations. He sent me away to read about it. What little research there is either says MTHFR excitement is a bunch of nothing OR that it can cause everything from dandruff to heart attacks, so I was skeptical, but I had the tests done. The proof is in the pudding.
As strange as it sounds, my vitamins had been poisoning me. MTHFR regulates methylation in the body, and you need that for all kinds of stuff. I have a reduced ability to reduce synthetic vitamins into the form the body can use, and some vitamins affect things you really don’t want to go wrong, like mood and cardiovascular disease. Eating folic acid, instead of folate, just blocks my folate receptors to the real stuff, and folate needs B12 to work its magic, so also taking non-methylated B12 makes things worse. I get lost in the biochemistry but essentially with this mutation you end up with high homocysteine (which is bad), I had crazy high cholesterol (also bad), and somewhere down the methylation line it affects serotonin and dopamine (hello mood troubles). I’d been choking down regular multivitamins for years and hated them because they made me feel sick half the morning. Who gets sick from frigging vitamins?
Easy fix, though: just take already-methylated B12 and folate, eat your leafy greens, and avoid synthetic folic acid, which sadly is in EVERYTHING because of the neural tube furor. In just a few weeks I was off my psych meds and feeling fine, and I haven’t had any issues. It was like magic. Decades of psychiatry could have been avoided with the proper B vitamins. It’s easy to test, too. If I take one of my methylated vitamin caps every morning, I feel pretty good. Push it up to 2 and I’m a nervous wreck. Overmethylation is a Thing. Like I said I get really bogged down in the biochemistry. You’d think I’d be shouting from the rooftops that I finally found a cure for my mood problems, but that discovery was immediately overshadowed by POTS. And I’m not due yet for a lipid/homocysteine check, so we’ll see whether those numbers get any better.
One characteristic of depressed people with MTHFR is that antidepressants don’t work. Mine usually worked for a short time, really short, and then it was like I wasn’t even taking them. So they started adding stuff to them, notably Abilify, which perked me up more than the others and for a longer time. Abilify caused a mental struggle. I did not like the side effects, mostly weight gain and the good chance of ending up diabetic (you know I dread diabetes), so I was on and off, with varying results.
Now here I sit about to go over the diabetes ledge with no wiggle room, if I haven’t already gone over, and I’m pissed about what medications can do to you. No, I don’t KNOW that Abilify did this to me, but that combined with having had VITAMINS make me sick gives me a pretty decent fear of putting ANY pills down my throat. POTS is making me confront that fear with Florinef, and I’m not a fan.
What if I’m poisoning myself for no reason? What if my POTS symptoms could be lessened in some other way that we don’t know about yet? I’d be diabetic and steroid dependent for no reason. This merry-go-round rarely stops. I decide to start and stop Florinef all day long in my head.
I’ve always been challenged, shall we say, at letting doctors manage my meds. I tend to tinker with them on my own, with varying results. The main result is that often I don’t outlast the side effects to see if the drug in question actually helps me. My current doctor has seen me on the floor feeling like death and understandably is confused at my reluctance to take a drug that seems to prevent that, but she doesn’t understand the depth of my phobia about being diabetic, either. It really is a panicky choice for me: fall all the time or be diabetic? To make things worse, MTHFR is reported to make metformin a poor choice, and normally it would be first line to control my blood sugar.
I have doctor issues. I work with doctors, so I’m really clear about the fact that they often do not know what they’re doing. And as a patient I’ve been blown off and misdiagnosed for decades, so that doesn’t help. Now I have a new doctor who does seem to know what she’s doing and who actually listens to me, so those things should mean I just do what she recommends, right? But what about? But what about? But what about?
And now we are back at my seeming need to control every single thing my body does, which is illusory and will fail. My autonomic nervous system is a mess so by definition I have no control over what it does.
As for my Florinef trial, once again it’s markedly and nearly instantly improved my POTS symptoms. Yesterday I went to a class that necessitated being up and down from the floor and didn’t feel too bad, and I successfully went to the grocery store, which normally I dread because it involves too much walking and stopping. For some reason it’s the stopping that seems to get me. I did get a high HR notification when I was just cooking dinner, and I could feel it racing, but it did not come with the brain fog and muscle weakness that you would expect. My pulse pressure was 40 at bedtime, so that is working. Could be such a thing as the Florinef doesn’t bring my heart rate down but does some other thing to keep the Really Bad Symptoms away. Unfortunately I clocked my blood sugar at 215 so I freaked out.
So as usual…I can’t control any of this except what I do to try to combat it: take the meds my (respected) doctor suggests, track the stuff I need to track, get a lot of salt, drink my 80 oz of water, wear my compression socks, and keep exercising. I’m up to 17 min on my recumbent bike and it’s not making me nearly as dizzy as it did when I started.