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Author Topic: Unable to determine genotype  (Read 20158 times)

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Offline Inshallamiami

  • Member
  • Posts: 6
Unable to determine genotype
« on: April 01, 2013, 07:45:28 am »
Hi, my husband has recently been diagnosed, but they are unable to determine the genotype! His Dr says he has never seen this, our luck huh? Any ideas, suggestions? We are still in shock over the whole thing and not thinking straight.

Offline Inshallamiami

  • Member
  • Posts: 6
Re: Unable to determine genotype
« Reply #1 on: April 01, 2013, 02:17:18 pm »
Wow, no one has had to deal with this? We are SO screwed.

Offline original_morgan

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  • Posts: 10
Re: Unable to determine genotype
« Reply #2 on: April 01, 2013, 03:32:58 pm »
Welcome to the forums. I'm sorry to hear about your husband.

What kind of doctor are you talking to? It sounds like you should get a second opinion as it is important to know your genotype before deciding on your treatment options.

Offline Inshallamiami

  • Member
  • Posts: 6
Re: Unable to determine genotype
« Reply #3 on: April 01, 2013, 05:20:25 pm »
Thank you for responding. Our doc is a gastroenterologist....the only one In the area.
we're going to try a different diagnostic lab. It was tricky finding the second lab, took me Hours on line and the drs. Office didn't know what to do, evidently they haven't ever needed to find a different lab.

How does one find a good doctor? anyone recommend one in Florida? we may have to relocate.



Offline iana5252

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Re: Unable to determine genotype
« Reply #4 on: April 01, 2013, 05:36:38 pm »
What might be adding to the confusion is it is possible to be infected with more than one HCV genotype. Here's the Hep Lesson with more information about the different Genotypes...

http://www.hepmag.com/articles/2512_18753.shtml

Offline Inshallamiami

  • Member
  • Posts: 6
Re: Unable to determine genotype
« Reply #5 on: April 01, 2013, 06:12:07 pm »
Thanks for the link. Any links to other people having UNKNOWN genotypes, what they do in that case etc?  It's my doctors "I dunno" attitude that concerns me. At this point I know more than HE does, and that's REALLY scary :)
« Last Edit: April 01, 2013, 06:18:30 pm by Inshallamiami »

Offline hepmagnet

  • Member
  • Posts: 8
Re: Unable to determine genotype
« Reply #6 on: April 02, 2013, 01:13:44 pm »
The Hepatitis B Foundation has a good directory of liver specialists...

http://www.hepb.org/resources/liver_specialist_directory.htm

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Unable to determine genotype
« Reply #7 on: April 02, 2013, 02:33:07 pm »
A GI may have as his only Hep C knowledge the drug company reps if he/she has been practicing longer than 10-15 years.  Have been treated twice, once by a GI in 2004 and then later a Hepatologist at LifeLink (in Tampa Florida) - the difference in knowledge is stunning - this is a fast moving specialty with treatment success that has doubled in a few years, so find a specialist if you can.  Let us know what you learn.  Good luck!
« Last Edit: April 02, 2013, 02:34:45 pm by jberlin »

Offline hepcured

  • Newbie
  • Posts: 1
Re: Unable to determine genotype
« Reply #8 on: April 09, 2013, 01:40:02 pm »
No Genotype detected could be due to several reasons. First and foremost what is your husbands Viral Load (VL)? When a Liver/GI Dr orders the Geno test they also order the Viral Load test at the same time, unless they already did that, so what is his VL? It takes up to 2 weeks to get the VL results back. If his VL is very low, or undetectable, then that is why they cant determine his Genotype. Lets start with your answers to those questions and then we can proceed with more.

Looking forward to chatting more with you more. Try to be optimistic this is not a death sentence.    Hepcured

Offline Inshallamiami

  • Member
  • Posts: 6
Re: Unable to determine genotype
« Reply #9 on: May 17, 2013, 11:55:13 am »
Ok, we got results from a different lab...I was told by md 1A  AND. 2B.  But later drs office people wrote 1a and 1b on some form. THAT'S reassuring that they can't get it straight.  Hell. Well, we are all set to start once we finish moving. Wish us luck.

Offline jberlin

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  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Unable to determine genotype
« Reply #10 on: May 19, 2013, 10:16:11 pm »
Do you know what drug regimen is being proposed for treatment?  What kind of shape is your liver in?  The reason I ask is because if your liver is ok most hepatologists would have you wait to see what new drug alternatives you might have in a year or so.  If not, and you are geno 1, make sure you do the Incivek triple therapy as it is clearly showing the highest cure rates.  And with that treatment, if you have not gone UD in 4 to 8 weeks, it might be worth stopping and sitting out for the newer drug offerings.  Just my $0.02. 

Offline Inshallamiami

  • Member
  • Posts: 6
Re: Unable to determine genotype
« Reply #11 on: May 19, 2013, 11:19:16 pm »
Yup, starting triple therapy with incivek soon. Md says "significant" liver damage based on ultrasound, but no cirrhosis. Incivik said to stop if not under 1000 at 4 weeks.

Offline jberlin

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  • Member
  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Unable to determine genotype
« Reply #12 on: May 23, 2013, 07:13:34 pm »
Perfect!   You will be UD in 4 weeks I know it.  Hardest thing at 1st is the schedule.  I hope you have some support.  You MUST be religious about taking the meds as directed, Incivek every 8 hours - with fatty foods - I got slices of cheese, and in the morning had a sausage biscuit - but if you do - you will kick this disease in the ass!  It ain't easy or fun, but if this old man can do it, so can you!  Keep us informed and if you have questions post here, or on FB here (or both):  https://www.facebook.com/pages/Hepatitis-C-Awareness/103970386311455?fref=ts  Cheering for you!  -jack

 


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