HCV is subgrouped into 4/5 genotypes, each with their own quirks and profiles, if you will. I became familiar with this in the first go round with treatment. Gen 3 is less prominent in western countries, but has a higher percentage of SVR (sustained viral responsed) in treatment and in the world of HCV, a pretty good call. SVR for gen 3's is about 80% on the first try, and most importantly, generally only treated for 24 weeks. Needless to say, I was disappointed and bummed out when my viral count came back up 6 weeks after finishing the first treatment.
Here comes the drama part: Routine baseline blood work came back this week, and just by chance, the new doctor ordered another genotype test. This time I'm a gen 1a This isn't supposed to happen, my friends. It's like getting a change in your blood type 2 years later.
I put out a post on my HCV forums to see if anyone has heard of this. A couple of people replied that it theoretically could happen if the original blood transfusion had both types in it, and maybe they heard of someone else 3rd hand that this had happened to. My current dr put it out to the university hospital hepatology group, and not one of them had heard of such a thing. So here are the implications.....
If I'm gen 1a, there's no way that the initial 24 weeks of treatment would have been successful. I basically wasted that whole time. I began treatment this time assuming I'm a gen 3, and the new drugs on the horizon are basically aimed at 1a, so there was no point in waiting for them. If I'm a 1a, I might have made the decision to wait another year or so for the new drugs. But now, I've already started the meds. 48 weeks is the recommended treatment for gen 3 on retreatment, but gen 1a's are sometimes stretched out to even 72 weeks on retreatment. Ugh!!
Another test is necessary for my own peace of mind, even though the meds at this point are the same. I've decided to have it done at the university hospital where my dr is instead of my usual lab. Sounds suspiciously like a lab error to me, how about you? And that is just plain scary. It could be a lot worse.....lots of other incorrect lab tests could be disastrous to patients. But it sure does take away a lot of the trust and confidence in what is supposed to be cut and dried scientific lab data. I'm the one who picked it up out of the report, btw. Tiny little print on a computer screen just went right past the drs initial review. Once again I proclaim to the world "YOU HAVE TO BE YOUR OWN ADVOCATE AND ON TOP OF YOUR OWN CASE!"