stil waiting...

[summer7799]

My GI Dr finally called me today. He has decided to send me to a hepatologist. They stil cant find my genotype and my gastro thinks its best to see a better specialist. I asked my Dr about looking into a trial/study and he said no. He said its a bad idea. Well hopefully the hepatologist will be able to treat me!

[suezeeque]

The trials want people in specific circumstances.  For example, I'm in one that -only- wanted people with genotype 1 who are treatment naive.

If my genotype hadn't been identified, I wouldn't have been able to participate in this study.  The purpose of the trial is to say that -this- drug works for -this- genotype.

The doctor not being able to tell you what genotype you have has nothing to do with his/her ability or competence.  The doctor doesn't interpret the results of your bloodwork.  He/she just gets a piece of paper from the lab and reads it to you.  ;)

Hopefully the hepatologist will be able to help you get it identified.  Fingers crossed.

Sue

[summer7799]

Thanks everyone for your responses. I actually feel relieved that I am going to a hepatologist. This Dr is one of the best. He teaches/works at a university hospital in Baltimore. I know I will be in good hands. I'm sure it will be worth the wait.

[Vannh9]

I am glad they have referred you....I think this disease needs to be managed by the "liver" experts. I know it isn't great that it has delayed the process,, but at least you will know that you are being managed by Doctors that focus on liver disease. And as far as the trial goes...let the new Doctor help guide you. Focus on what he/she has to offer.

Take Care!!

Vann

[desrt]

It would be diffucult to get into a trial anyway if you can't be genotyped.
Questions you might ask your hepatologist after he's read the report on the attempted genotyping:


1) Was the NS5b portion of the virus the part that was unidentifiable?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1392686/
("A multicenter study of NS5b hepatitis C virus (HCV) genotype determination involving 12 laboratories ....... two gave an incomplete result for one sample and missed one other sample; one laboratory had one incomplete result, one misclassification, and one false-negative result; and one participant misclassified three samples and had a false-negative result. Of the144 correct expected results, 129 (89.6%) were accurate. Among the 15 incorrect results involving six samples, 4 were false-negative results, 5 were misclassifications, and 6 were incomplete genotypes.")



2) Can you get a rough idea of what genotype it is by counting nucleotides? (And is that type of labwork affordable?)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847443/?tool=pubmed
"... HCV genotypes characteristically vary in length, with genotype 1 typically comprising 9030 to 9042 nucleotides, genotype 2 has 9099 and genotype 3 9063 nucleotides. The nucleotide insertions or deletions responsible for these genotype-specific differences are found within the E2 and NS5 portions of the genome."

[belle19]

i don't understand why he said no about a trial.  i'm in one and i have one of the top liver specialists in so. cal.  i feel very fortunate for that.  and i get blood work done every week.  i'm monitored very closely.  more so than my friend who went to a hepatologist.  i also found out my genotype from my regular doctor.  he sounds a little confused if you ask me.  good luck with everything.  and do a little research for all your options.  belle

[Gracie_Lue]

Yeah that's really a long time to wait for results. That's a little crazy. My specialist already knew my genotype on my first visit with her from the origanul blood work from my regular doc. I'm wandering why he thinks it's a bad idea for a trial? In any case good luck and I hope you will get a great doc.

[willbb]

Summer... that sound s like good advice on the part of the GI  and hopfuly the Hepa..has access to a different lab (as I mentioned before ..possibly a research facility with more specialization ).

Hope it all  gets figured out soon for you....

Will