I was diagnosed with a metabolic myopathy carnitine deficiency in high school following all sorts of tests that led to nowhere. Finally, I had a muscle biopsy at University of Michigan confirming the carnitine deficiency. My symptoms then were muscle weakness/dull achy muscles. I struggled after doing things like marching band and walking a lot. I was put on Carnitor (levocarnitine), almost 3g/day. At that time, I weighed around 120-125lbs.
I am 30 now and we conceived our first baby last fall. At 5.5-6 weeks, I became so nauseated and was vomiting if I did not eat every 2 hours, but eating was almost impossible. The same remedies everyone else gets were given to me when I called the nurses. These included vitamin B6 and the OTC nausea drug. Nothing helped. I was finally put on Zofran but even with that, I was fragile. Zofran caused awful constipation that basically made me want to die. I was miserable! But I took it because I could eat again and function better. The nausea and vomiting were worse in the morning and evening. Smells would get me. It was awful. Because of the side effects from Zofran, I weened myself down every several weeks (whenever that was possible), but still was occasionally sick until 20 weeks. I was finally able to stop Zofran at that point. They did try calling something else in for me when I told them about the negative side effect, but I was too afraid to switch medications by that point. If only I knew more carnitine could have helped.
Never did the nurses or doctor tell me to increase my dose of carnitine. Nor did they tell me that carnitine deficiency was associated with hyperemesis, severe vomiting during pregnancy. I recently learned that online. Since I already had a problem with carnitine and had required carnitine since I was a teenager, I wish my doctor or the nurses would have considered the possibility that with the energy demands of pregnancy, my dosage might need to increase. They didn’t.
Premature Delivery
Our baby was born prematurely at 35 weeks and 6 days. I went into labor but was supposed to be a scheduled C section due to pelvic floor muscle problems and pain in the past. Our baby made his way down FAST but we ended up doing the c-section. It took a while though because he was already very low. I lost a lot of blood and was anemic afterwards.
Our son spent the first few days in the NICU after the nurses couldn’t get his blood glucose to stabilize. He was weak and trying to nurse was costing him more energy than he could gain from it. The nurses tried cup feeding what I could pump and gave him glucose gels. By our first evening together, his blood glucose levels would not stabilize, so the doctor admitted him to the NICU, where he had a feeding tube, formula, close monitoring, and anything I could pump was also given to him. He was born on a Friday, and thankfully, the nurses got him healthy enough to go home with us when we were discharged Monday afternoon. Our pediatrician said they screen newborns for carnitine uptake deficiency, so our baby does not have that. I am not clear if we know for sure he does not have a deficiency, since it is autosomal recessive. I wonder how potentially not getting enough carnitine from me through the pregnancy could have impacted him. Thankfully, he rapidly gained weight after we went home where we were able to exclusively breastfeed.
Our son is 8 months old now, happy and healthy. I have thought all this time that I could never go through another pregnancy because of the nausea and vomiting. I spent days closed up in my room last fall/winter barely able to eat. Now I have learned that I could have potentially prevented the level of nausea I experienced had my dosage of carnitine been increased to meet the additional energy demands of pregnancy.
Testing the Carnitine Hypothesis
I recently ran out of my carnitine supplement. For three weeks, I did not have my carnitine. I’ve always played mind games with myself and wondered if I really need the supplement for life or not, but even on the supplement I have noticed anytime I’m sick or menstruating, my legs get super achy like they always felt before diagnosis and supplementation.
Over the last two weeks, I was feeling exhausted every day by early evening. I was sore, had no energy, and even showers were exhausting, as standing was painful by the evening. I also had some episodes of low blood sugar. I just thought it was because our baby is getting heavy and breastfeeding can easily make me hungry. Then it dawned on me that I had been out of my carnitine for a few weeks. I felt like such a fool once I realized that might be what was going on. I got it refilled and took it, figuring it would take a few days to actually have an effect. I started feeling better the same evening that I took it. I googled how fast it gets into your system to help and saw 15-45 mins after taking it.
Feeling reassured from that experience, I now think the need for additional carnitine was probably what was wrong for those miserable 15 weeks of pregnancy. It felt similar to the hypoglycemia I just experienced off the carnitine, but much worse because of the nausea. The only things I could eat when it was at its worst were tortillas, potatoes (carbs!) and cereal.
I think the severe nausea and vomiting was likely the result of depleted carnitine levels, which would throw a lot of things off, especially when your body is trying to grow a human. As Chandler wrote in a previous blog post, which I recently came across in my research, depleted nutrients > (leads to) nausea and vomiting > more depletion of nutrients > more nausea and vomiting. To top that off, some mornings or evenings, I felt so sick that I would skip my carnitine, fearing the smell and taste would cause me to get sick.
I just wanted to share this story with you — everything I’ve seen in articles online state that women with this deficiency need to be closely monitored and have their dose increased while pregnant. I’ve read even women without the deficiency become deficient in carnitine during pregnancy. I feel like the medical staff failed me in this area as a patient who was suffering. Why wouldn’t they think to tell me to increase my dose? The only explanation my husband and I can come up with is that carnitine deficiencies are not common, though my files state the condition. At each appointment I shared current medications, which included levocarnitine.
This information may change our lives if there is hope that with proper dosing, I’d be less sick and could better handle pregnancy next time around! It is my hope that sharing my experience will help someone else.
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Image by senivpetro on Freepik
This story was originally published on February 6, 2018.
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