Update on New Improved Numbers and Continued Watching …

Someone once said that "there is safety in numbers." I guess they did not make it clear what kind of numbers. 

The mysteries of the numbers continue, but this time it’s a hopeful trend.

I mentioned a while back in a post (Could Praluent Stop Working? - http://livingwithfh.blogspot.com/2019/01/could-praluent-stop-working.html) that for some mysterious reason my cholesterol numbers started climbing up. Quite a bit, in fact: in just four months, the total cholesterol went from 175 to 252 mg/ dl (LDL from 127 to 192 mg/dl). It’s mysterious because I had not changed anything in my drug regimen, my diet, or my exercise practice. But all of a sudden, after the beginning of this year, they started going up!

We have not determined yet what caused the hike. I have continued the usual treatment (for a list of my current medications, see My Current Drug Regimen, Diet, and Exercise - http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html) and they have continued to measure my levels for the past two months now. After the January numbers above, the numbers went down little by little as you can see in the chart below.

However, as you can see, these numbers are still not normal and definitely too high for an HoFH patient with a lot of years of high levels and established cardio-vascular disease, and with a rich family history of complications from FH, heart disease, and strokes.

But, however not assuring these numbers are, at this point in time, we are just watching them. The guess is that for some reason something happened with a couple of Praluent injections that I took, either the transportation of them was incorrect before they got to me, or I administered them wrong (sometimes there is a little ooze at the end of the injection and I can see that not all the liquid actually goes into my skin) – whatever happened, for now, the idea is that the Praluent stopped working for a tiny bit of time. So, now, we are just continuing the treatment with Lipitor, Zetia, and Praluent and will also continue taking the numbers every month to 6 weeks, instead of every 3-4 months.

There are options to investigate further, about having built a possible resistance to some of the drugs, but right now we are not going to test for that. We are just hoping that we can bring them down by being more conscious of administering the Praluent correctly (without any oozing, if possible) and we’ll see where the numbers will end.

I also wonder if the numbers in September were not a lab error, maybe? I have seen those before, although not often. My numbers had never before been that low, and I wonder if something happened there. Just a lot of guessing and wondering, not a lot of answers, I know. But I wanted to share that guessing and wondering and not having all the answers although you think you have all the facts is just part of this “living with FH” game.

In other news, my liver function tests have also dropped. Also, with no apparent reason. For some time now, maybe three years, some of my liver enzymes (the AST and the ALT) have been elevated. So far, they have diagnosed me with fatty liver disease, based mostly on my HoFH history and these numbers being high. I have been also wondering if any of the drugs I am taking (for cholesterol and for everything else) have contributed to the elevated liver function tests, because everything we take is processed in the liver and I am surely throwing a ton at mine. No answer was ever conclusive that the numbers could be related to any kind of toxicity from the drugs or from anything else.

With this past battery of tests this month, both my AST and my ALT came back to normal levels – 24 and 30 U/L respectively. These are down from 61 and 40 U/L just a month ago. The only thing that changed during his month is that I have started drinking coffee again. I had stopped drinking it after my heart surgery because real coffee gives me palpitations and increases my heart rhythm. My liver doctor recommended that I reintroduce coffee, even decaf, to help protect the liver – unbeknownst to me, coffee is an antioxidant that is beneficial for undoing liver damage. Seems like a small (and pleasant, for once) change, but could it have that much of in impact?! Not really sure how one could prove or disprove this.  

Do I feel "safer" knowing these numbers? Not necessarily. It is just the ebb and flow of monitoring this condition, or rather these conditions as they arise, when they arise. I have always thought that knowledge is power, and I have always advocated with my caretakers that yes we do need to repeat this test every year, or month or ... whatever ... With a genetic condition on our hands, we never know what the body decides to do on its own, as it is programmed genetically. So knowing, adjusting, and caring for it will buy us, hopefully, some time.  

I guess that no matter how many specialists we see, and no matter how precise we think our tests are nowadays, there is always proof that this is not always a precise science. Aside from many variables in the lab, there is always the human factor involved. We are so complex that there might be no telling what influenced the numbers on one test. For now, I am enjoying the trend, and hoping I can continue it.

As for what is ahead: the mystery of the human puzzle continues, I am sure, with or without our acceptance of it.