Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
My then new cardiologist recommended I’d see an endocrinologist for treating my cholesterol back in December (https://livingwithfh.blogspot.com/2017/12/the-tricky-balance-between-trusting.html). He tweaked a couple of my drugs then, in the hope of getting my LDL cholesterol down some more, and my HDL a tad up.
At the time I was taking 5 mg/ day of Zetia and he doubled that to 10mg/ day. My previous cardiologist said there is little to no difference in the amount of Zetia you take for how much percentage of cholesterol that is lowered. He said taking 5 or even 2.5 mg is just as good as 10 mg. Since even the generic Zetia is $80 a month, I used to cut it in half to save on the money, since the benefit was not said to be great. But I gave it a shot and increased it at the advice of the endocrinologist.
The endocrinologist also recommended I would add Metamucil to my diet which is also proven to have some benefit (being a fiber) in getting rid of some of the cholesterol. So, I also added that in December, as well.
Last week I got new numbers and as you can see, they are not very much different that the ones in December. In fact, the total cholesterol, the LDL and the triglycerides are slightly worse. This time, these tests were not taking while fasting, so I think that matters, especially for the triglycerides.
The endocrinologist also suggested that I would try Juxtapid, but after thorough research and hearing from folks who have taken it, and my liver enzymes going back up on their own, I decided not to go that route. I am way too nervous about the drug being too strong and damaging my liver to try it out.
Since December, I switched my cardiologist and the new one might be able to manage my lipids himself, he said. We have not gotten to the part where we talk about my lipids, as he is more interested in figuring out my heart first. So, till we get to that point, I am deciding a few things on my own. Given the lack of improvement on the numbers in the past three months and the fact that my stomach is further upset by the Metamucil, I am deciding to:
– stop the Metamucil
– go back to 5 mg/ day of Zetia
In the long run, I am also:
– not signing up for Juxtapid (my new cardiologist agrees with this)
– maybe canceling the appointment with the endocrinologist.
I have had some experience with most of these drugs and I just feel like the regimen and the diet (https://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html) I am on now has given me the lowest numbers that I could hope for, at this time.
As always, this is a personal post and a personal decision. I always try to stay informed and weigh in what is best for my cholesterol as well as for my quality of life.
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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.