My FH Diagnosis
I’m a vegetarian, certified personal trainer, and health coach, and I’m at high risk for heart disease. I learned I have a genetic condition called familial hypercholesterolemia that causes dangerous levels of cholesterol in my body.
If you’ve been reading my blog for a long time, then you know I first started blogging when I was learning how to eat a vegan diet. It was 2010, my cholesterol was extremely high (280mg/dL) and my doctor wanted me to consider taking a statin, a cholesterol-lowering drug. I’m certainly not against taking medication, but it felt like the “easy way out” and I really wanted to try everything I could with diet and exercise. Statins come with side effects and it felt strange to start taking medication in my 20’s that I’d need for the rest of my life. Before I settled on a medication, I went vegan for six months to see if I could lower my cholesterol, and I decided to blog about the experience.
Six months went by and when I had another blood test my cholesterol was almost exactly the same. I was a bit discouraged and gave up on a vegan diet, transitioning back to a vegetarian lifestyle. (Of course, the upside was that I learned how to cook and fell in love with blogging!)
Although my cholesterol was still high, I knew it had always been high, since the time I was a little kid. Every time I had my cholesterol checked, my doctor would say the same things: avoid red meat, exercise, don’t smoke, etc. And every time I would just nod my head and maybe roll my eyes a little bit on the inside. They’d recommend a statin and I figured since I didn’t have any other risk factors, it wasn’t a big deal. However, I quickly learned that wasn’t the best approach.
This summer, on the cusp of turning 30, I decided it was time to revisit this cholesterol issue. I took matters into my own hands by Google-ing everything I could for hours and hours. I was looking for other cases of people that were genetically predisposed to high cholesterol. I was hoping to find something that would tell me “Don’t worry about it! It’s just (literally) in your blood!” I didn’t find the answer I was looking for, but I did find an answer.
I learned about a condition called Familial Hypercholesterolemia (FH) which is a genetic disorder that prevents the liver from recycling the body’s natural supply of cholesterol. That means people with FH can have extremely high cholesterol levels, especially LDL, the “bad” cholesterol. Since it’s a genetic trait that I inherited from my dad, it doesn’t respond as well to diet and exercise alone. If left untreated, people with FH have a 20 times higher risk of developing early aggressive heart disease. Yes, 20 times.
Finding a name for this condition felt like a light bulb moment. Although it wasn’t the answer I was hoping for, it made a lot more sense why I felt perfectly healthy, yet my blood test was telling a different story. I understood why going vegan didn’t get my cholesterol down to a reasonable level. To top it off, FH is 10 times more common in French Canadian populations, which is where my dad’s family is from, so that made sense why this was present in my dad’s side of the family!
I did some research on the FH website and I found a wonderful cardiologist here in Richmond. I appreciated that she didn’t take one look at me and immediately prescribe a statin. We talked about my family history, literally drawing a family tree and identifying all of the cardiovascular diseases that I’d seen in my dad’s siblings. We looked my other risk factors, my diet, and my workouts. She really dug into my history and where I’m at today. After some additional blood work and tests, she confirmed that it definitely seemed like FH and prescribed a statin.
As of a few months ago, my cholesterol was 350mg/dL, which is extremely high. When looking at my history, my cardiologist noted that it was impressive I was able to get it down to 280mg/dL with just a vegan diet. While diet is obviously very important, people with FH typically can’t lower it significantly. My cardiologist recommended that I continue to eat a healthy diet as much as possible, but thanks to FH, I still need a statin.
I wasn’t sure if I wanted to blog about all of this because, in some ways, I felt like I was a failure. When I got my test results back, I felt powerless and defeated. I was trying so hard and it was frustrating that I was being told that it would never be enough.
But that’s not the right attitude and that’s not how I feel anymore. Now I feel empowered. I’m thankful that I’ve already built a foundation of healthy habits. I’m thankful that I have the means and the time to prioritize my health. I’m thankful that there’s a medication that can supplement my efforts. I’m thankful that I finally found a doctor who took the time to explain all of it to me. And I realized that I absolutely wanted to blog about it because this is part of my journey and some of you have been here since the beginning!
I’ve now been on a statin for a few months so I’ll be getting more blood work done soon. Hopefully, the statins are doing their job and my cholesterol should eventually get below 200mg/dL.
Although FH is rare, researchers think that much of the FH population has gone undiagnosed. If someone in your family has high cholesterol, I’d encourage you to get yours checked! With the right lifestyle changes and treatment, you can minimize your risk factors. Visit the FH Foundation website if you want to find out more!