Low 80's Sweat Test and Awaiting Genetic Testing
TLDR; While I'm waiting for the results of CF genetic testing, how likely is it that a low 80's sweat test is a false positive? The Adult CF doctor provided an answer, but I'm curious what the folks of reddit think.
---
Hi y'all - I'm around 50 and have experienced various CF related issues my whole life (lungs, sinuses, constant sometimes inexplicable diarrhea, dios, ability to eat insane amounts of food without gaining weight, etc). It wasn't until about 10 years ago when my very young child had junky lungs resulting in multiple overnight hospitals - along with my Mom's health history - that made me consider atypical CF. I had brought it up then with doctors but was soundly dismissed.
Since I seemed fairly healthy, it was a struggle just to get the sweat test since the medical professionals probably thought I was nuts (I'm Asian but 1/8th European). I had dawdled on pushing for the testing, but I wanted to get the splinter out of my mind (combined with my kid's constant coughing all these years), especially after reading the WashPost Medical Mysteries article "All his life his health was poor" in 2019 where the protagonist had a normal sweat test and a single ∆f508 mutation. At that time, Covid hit, and quarantine was the best thing for our health, so I ended up sitting on it. It wasn't until I was learning Italian last year preparing to watch the Olympics in Milan when I picked a random Netflix movie, Out of my League, and I had to look up in English what weird disease this poor girl had. That finally got me to just get it out of the way.
I was ready to pay the almost $700 I was quoted out of pocket just to eliminate that as a suspect for good. I was fully expecting my results to be normal but was in shock when I first heard the numbers for both arms. I went through this strange mourning for alternate universe me where my parents decided to stay in the US before I was born, and I ended up getting sweat tested and told that I wouldn't live past my teens.
After that, we had my still junky lung kid tested, and thankfully, it was in the mid teens. I understand he may still have it, but we'll cross that bridge depending on the results of the supposedly very comprehensive genetic testing.
Thanks y'all!