Why do I need to take carnitine?
Your body needs carnitine to convert fat into energy. But because of your PCD, your body can't hold onto it the way it's supposed to. It's either losing carnitine too quickly, not retaining or creating it at all, or struggling to move it where it needs to go. Levocarnitine supplementation replaces what your body can't maintain on its own. It can be helpful to think of it less like taking a medication and more like giving your body something it needs to function the way it's designed to.
Why do I need so much carnitine?
Because your body doesn't retain carnitine the way a body without PCD does, you need a higher dose just to maintain a functional level in your system. It's not that levocarnitine is a particularly powerful drug. It's that your body is constantly losing what it needs, so you have to keep replenishing it. Think of it as a leaky bucket: you need to keep filling it to maintain the proper water level. Your specific dose is calculated based on your weight, your lab values, and how your body responds individually, which is one of the reasons regular bloodwork is so important.
Why does my dose change as I grow?
Your dose is calculated based on your body weight, so as you grow, it will need to be adjusted to keep up. This is completely normal and expected. It's one of the main things your metabolic team watches for at your regular appointments. Eventually, as you finish puberty, your dose will essentially "level off" until it reaches a point where it no longer increases. Regular bloodwork and follow-ups with your specialist must still be maintained to stay healthy and on top of your PCD, even once your dose stabilizes.
What happens if I miss a dose?
Missing one dose is not an emergency, but it's also not something to make a habit of. If you realize you forgot and it hasn't been too long, take it as soon as you remember. If you're already close to your next scheduled dose, skip the missed one and just continue your normal schedule. Do not double up to make up for a missed dose. The goal is consistency, which is one of your non-negotiables. The more consistently you take your medication, the more stable your carnitine levels will be.
Can I ever stop taking my supplements?
No, carnitine supplementation for PCD is a lifelong treatment and cannot be safely stopped. Stopping supplementation, even for a short period of time, can cause your carnitine levels to drop to unsafe levels. We know that's not what anyone wants to hear, but the honest truth is: levocarnitine is what makes everything else in your life possible. For most people, once it's built into a routine, it becomes as automatic as brushing your teeth. It stops feeling like a medical thing and starts feeling like just a thing you do.
What if I hate the taste?
You're not alone. A lot of people find the taste of liquid levocarnitine genuinely unpleasant. A few things that help: mixing it into a small amount of juice or something with a strong flavor, taking it chilled, or immediately following it with something you actually like the taste of. As you get older, there are different formulations available, multiple options you can try that involve no taste at all. At Carnergia, we offer consults exclusively to help discuss supplement options, and we strategize with you and your pharmacy to determine the best option for you.
What if my medication upsets my stomach?
Stomach upset, nausea, or a "fishy" smell can be side effects some people experience, especially when starting out or after a dose increase. These often improve slightly on their own as your body adjusts. Taking your dose with food can help significantly. We recommend morning doses with a protein-rich smoothie, and midday or nightly doses either with a meal or a handful of crackers. A morning probiotic or adding riboflavin (vitamin B2) can greatly improve the "fishy smell" side effect. If the stomach upset is severe, persistent, or making it difficult to keep your medication down, call your doctor.
How do I refill prescriptions and manage this on my own?
Your pharmacy will often send a reminder to refill your prescription, but don't rely on that alone. Keep an eye on your supply and start the refill process at least a week or two before you run out, more if you're at college or traveling. Set phone alarms for your doses; this is the most effective tool most people find. Tie your doses to something you already do every day (meals, brushing your teeth, a specific class) so they become automatic. What you should know about yourself at a minimum: your full diagnosis (Primary Carnitine Deficiency, ICD-10 code E71.41), your current medication and dose, your physician's names and phone numbers, your allergies, and a general understanding of what PCD means for your care.
What should I carry in my wallet?
Your Emergency Medical Card. Always. This should include your diagnosis, your current medication and dose, your physician's contact information, and clear instructions for medical staff in an emergency. Download and complete Carnergia's Emergency Medical Card template from Helpful Downloads, print it, laminate it, and put it in your wallet. This is a non-negotiable.
This page offers general suggestions for building independence with your care. Always follow the specific instructions from your own doctor.
Last updated October 2026.