The Roller Coaster of Cholesterol Numbers

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

If you have FH you are probably used to your numbers being low one month (yay!) and coming back up three months from then (drats!). Although you are doing nothing different, and you think you are managing your condition as you always have, the numbers fluctuate.

Sometimes, I can kind of tell what causes my numbers to go up and down, but it’s always just a guess.

I know some doctors who would argue that the numbers even tell a story, but being on this roller coaster now for 36 years or so I can tell you that the numbers is the only gauge I have to refer to in order to understand how severe my condition is. So, yes, I still pay very close attention to the numbers.

Maybe you are familiar with my recent struggle to get Praluent approved again by my insurance, back in November – December (this is the last post that talks about it: Well, in the process of getting that approved, I was out of Praluent for a couple of months. My doctor supplied me with Praluent samples but they were the wrong strength – they were 75 mg/ pen instead of my usual 150 mg/pen. He told me to just take one pen every two weeks and it will be better than not having the drug at all.

Well, after a little over a month of taking the lower dose, my numbers went slightly up, as you can see in this picture, below.

They are no longer within normal ranges, either. And this is, again, why it’s so important to stick with a drug (and the strength that works), I believe, once we have found it.

As you can read in the last Praluent post, I have been approved again for the correct dose of Praluent and I started taking that this week, so I hope the numbers will come down next time we check them, but there is no telling, of course. Like I said: sometimes it’s no more than a guess.

To keep ensuring that we all continue to have access to the medication we need and easily, I have also been working with the Family Heart Foundation ( to help them understand the difficulties we encounter to get to the newest medication. They have been so supportive of me. They are doing just tireless and priceless work to work with drug manufacturers and insurance companies alike to support us and our cause and our need for ease of access to these medications. If you have not checked their site out yet, do it – it’s a great resource for everything FH-related and they truly are great, compassionate advocates.

I wish you all great numbers, great news and much health!

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Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

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