Hep C is not a disease that impacts our liver alone. The effects of hep C outside the liver are called extrahepatic manifestations. These often overlooked in discussions about hep C, with healthcare providers, and in the hep C community.
In writing this now, it is not to frighten anyone or suggest that you or anyone you know with hep C (or anyone who has had hep C) will experience these issues. Like others, I often draw on my own experience and that of peers when talking or writing about hep C. This last year was the worst year for my health since I treated, but I am not looking for sympathy. My doctors and I are still looking for good answers as to what is the cause, and even though there were a few things answered, there is so much that is not yet clear about the what can be done part.
What is and is not connected to hepatitis C
An issue I have come to understand is that specialists in one area do not always know well how one illness can impact another system Even when a topic is well studied with loads of research to back it up, they just don’t read the research outside of their specialty, or at least very few do. So, what does this mean? Well, it means that when one of us (patients) mentions that hep C can cause this or that condition, we are often met with a denial, or a lack of understanding or help.
My experiences with extrahepatic manifestations
As it turns out, some of my thyroid numbers are consistently out of range, and now my adrenal functions are not in normal range; The suspicion is Addison’s Disease. There are some that indicate that my pituitary gland may not be functioning as it should. Another serum (blood) test indicates something else, and to be honest, it can be hard for the experts to understand, never mind me. The tests go on and on, with what seems like endless doctor visits, labs, and scans of all kinds. As I am inclined to read up on these things, I am at times sure it is this or that and I know better. Like I have said before, beware Dr. Google. I need to follow my own advice because I am as guilty as anyone in self-diagnosis based on test results.
Should you be worried?
In summary, it is entirely possible that hep C has damaged my body’s ability to produce the right levels of hormones to keep my endocrine’s system working properly as it should. I am not suggesting that it has damaged yours, but if you are feeling unwell and you had hep C, you too may have been affected in this way (or any one of many ways), over time.
Again, I want to emphasize that this is not something that we all experience as part of our hep C experience, and in some cases, even my own, some of these issues may be in part due to aging or genetics. The importance of early diagnosis is clear based on the research because many of these things are connected to the amount of time we live with the virus, but as always, there is no way to predict how slowly or rapidly we will see extrahepatic manifestations.