Genotype mystery..Help!!

[summer7799]

My first genotype blood test came back inconclusive. My viral load is above 6 million. So my Dr sent me back for a second genotype test and again it came back inconclusive. My Dr called me today and said he has never had this happen before and he called the lab to ask what is going on. They just said they could not get a match for the test. So my Dr is going to call the director at the lab on Monday to see what test to do next. My Dr said maybe I have two genotypes and thats why the test is unable to detect one match. Has anyone ever heard of this before??? Is it possible to have two genotypes? Or maybe I have an extremly rare genotype?? I asked the dr if its possible that I dont have the virus at all, but he said if I have the viral load, then I have the virus. Im worried about this...why cant they find my genotype? Has anyone ever had this problem or heard of anything like this?? Please share any thoughts or comments, Thank you!!

[hrsepwrguy]

I agree with Will it seems more likely that there is a problem with sequencing than having 2 gt's

(6.73%) were observed as with mixed genotypic infection. Sums of 116 serum samples (27.88%) were still found untypeable by the used molecular genotyping system

[willbb]

Also...it may be that you do not have 2 types..it is just a sequencing problem  that is proving difficult to come up with the type ..given this particular labs specialization

Will

[willbb]

Summer...possibly one of the large research labs..that would have more specialized typing.
Your doc may be correct that insurance might  not cover this(I am not very familiar with the coverages in the U.S) however you do need this info. so your doc  has to get this done for  irregardless of possible cost.Is there an assistance you can look into as far as lab costs?

There are cases(rarely) where someone has 2 types (ie 1 and 2 or 1 and 3 etc)

In light of tx. now with the new meds  they have to get your type to treat with the proper therapy

Good luck
Will

[nygirl7]

Having two doesn't complicate it at all you just treat them both as one.....

I really can't understand with such a high VL why they can't figure it out I would think there were plenty to choose from.  Maybe they should send the test to a different lab and see what their result might be?

[hrsepwrguy]

Virol J. 2010; 7: 203.
Published online 2010 August 26. doi:  10.1186/1743-422X-7-203 PMCID: PMC2936312

Copyright ©2010 Ali et al; licensee BioMed Central Ltd.
Molecular epidemiology of Hepatitis C virus genotypes in Khyber Pakhtoonkhaw of Pakistan
Amjad Ali,1 Habib Ahmed,1 and Muhammad Idrees2
1Deparment of Genetics, Hazara University, Garden Campus Mansehra Khyber Pakhtoonkhaw, Pakistan
2Division of Molecular Virology, National Centre of Excellence in Molecular Biology, 87-West Canal Bank Road Thokar Niaz Baig Lahore-53700, University of the Punjab Lahore, Pakistan
Corresponding author.
Amjad Ali: ***@****; Habib Ahmed: ***@****; Muhammad Idrees: ***@****
Received August 2, 2010; Accepted August 26, 2010.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
This article has been cited by other articles in PMC. Other Sections▼
AbstractBackgroundMethodsResultsDiscussionConclusionAbbreviationsCompeting interestsAuthors' contributionsReferencesAbstractSix major Hepatitis C virus (HCV) genotypes and hundreds of subtypes have been identified globally. All these genotypes are generally studied for epidemiology, their vaccine development and clinical management. This article comments the frequency distribution of various HCV genotypes circulate in different areas/districts of Khyber Pakhtoonkhaw Province of Pakistan. Sum of 415 HCV RNA PCR positive sera samples were tested by a molecular genotyping assay. Data analysis revealed that out of these 415 HCV RNA positive patients 243 were males and 172 were females. Distribution breakup of the patients was 135, 58, 51, 51, 36, 32, 6, 7and 9 patients come from the districts of Abbottabad, Mardan, Pehawar, Swat, Haripure, Swabi and Dera Ismail Khan, respectively. Out of the tested samples, genotype specific PCR fragments were observed in 299 (74.82%) patient serum samples. The distribution of genotypes of the typeable samples was as fallows: 3 patients (0.72%) each were infected with genotype 1a and genotype 1b; 240 patients (80.26%) of genotype 3a; 25 patients (6.00%) genotype 3b; and 28 patients (6.73%) were observed as with mixed genotypic infection. Sums of 116 serum samples (27.88%) were still found untypeable by the used molecular genotyping system.In conclusion, HCV genotypes 1a, 1b, 3a and 3b are distributed in various parts of KPK among which the genotype 3a is the most frequent genotype

[summer7799]

My Dr just called and stil no answers! He talked with the director at the lab. No one knows what to do next. They say this has never happened before. Hard to imagine that. I asked my Dr about seeking a more advanced lab. He thinks my insurance won't cover it. He can't treat me until we have a genotype. My Dr says he thinks I have two genotypes. Hope to get some answers soon....

[flcyclist]

I recall nygirl7 mentioning that she was genotype 1a and 1b.  I would guess this is considered having 2 genotypes, but I honestly don't know.  I also don't know if this complicates genotyping, but maybe nygirl can chime in if she sees this post.  

I've read the you need enough virus to run the genotype (>600), but since your viral load is over 6 million that obviously isn't the issue.  I think Will's suggestion of using another lab might be a good next step unless your doctor can figure this out.    Hope you can get this sorted out soon to choose the proper course of trt.  Best of luck to you.

[desrt]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847443/?tool=pubmed

This is a rather intense paper on a complicated subject, but paragraph two of section 7.0 talks a little bit about the actual differences between the various genotypes and gives some idea of why labs can sometimes have difficulty determining genotype.

"... 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."

[adamben101]

Thanks for keeping me on track with the PI's that are only FDA-approved for geno 1.  I try to put that disclaimer out there that I'm not a Dr, and all info on this forum should be further researched before making any decisions with your Dr.  Thanks everyone.

[summer7799]

Thank you, that does make sense. I think I was more worried at the thought of having two genotypes. I would think having more than one would be bad news. Hopefully my Dr and the lab will be able to figure it out. Thanks for taking the time to help... :)

[willbb]

Hi Summer...From what I could find out  that yes indeed (albeit fairly rarely)sometimes  the regular labs that are used for testing may not be able to differentiate between Geno types..as it has to do with a different look to what they see (I believe it would have to do with the sequencing)and what they are comparing it to...it is much more scientific than that ( and I certainly don"t fully understand all the biochemistry behind it)..but for explanation purposes lets just say that is what may be happening.
If indeed they can not determine the type at this lab . and they don"t come up with a plausible solution ..what I would suggest is your doctor send your sample to a lab that has more specialization...I live in Canada so I am sorry I can:t help in that dept...however your doctor should know or possibly the current lab would.
This specialized test may take more time and cost more( however given that it is crucial to know your Geno type prior to treating to insure you do the correct therapy it  is very important. Obviously you would only do all this if in fact this lab just can not come up with the type.  

Hope that helps some...
Will.

I

[summer7799]

Thanks everyone for your responses. Will, I would love more info if you can find it. Thanks for all your help...

[lynda607]

'If you are planning to use the new 3-med cocktail, your geno shouldn't really matter because the meds are available via prescription and all typical genos can be treated with it."

Studies have shown genotype 2 had a better response than genotype 3 to Incivek and Victrelis but neither had a stellar response.  As hrsepwrguy indicated they are only approved for genotype 1 currently.
Genotype is very important in summer7799's case if she is considering treatment with triple therapy.

[willbb]

Hi summer...I have heard  of some people not getting an identifiable geno type ..I believe it is rare  .and I am not that familiar with why that happens.however I will try to find out what I can and post when I do..

There is cases of having 2 geno types ..however again also rare...and I don"t believe that can cause an indeterminate test as those that had 2 types were identified...

Will.

[lilly12345]

I am starting the telaprevir next week.

[hrsepwrguy]

New PI'S (telaprevir bociprevir) are only approved for genotype 1 patients by FDA in US. They have been used in studies on geno 2 and 3 but not approved for use by FDA.

[adamben101]

Hi Summer.  Quick background on me.  Not sure how I got the virus.  Diagnosed 2 years ago.  Been through probably close to a dozen genotype and viral load (VL) tests.  First test after being diagnosed was a VL of 800 and a geno of 1A.  After a few normal VL tests which ranged from 50k to 225k over about a year, I went in for another genotype test in order to qualify for a study.  Well, guess what?  Unidentifiable.  Even after I already got the definitive 1A previously.  Next 4 tests (at 3 different labs) over about 3 mos were all non-ID.  So I was nixed from that study, and was pretty perplexed.  This past April or May I tested again after a 6 mos break.  Finally got the 1A I was looking for.  So I applied for another study, and again got another non-ID from the screening test.  But before booting me from the study, the lab said they wanted to send my blood samples to another more advanced lab.  And they ID'd the geno as 1A and I'm now in a study based on that.  I hope that at least lets you know you are not alone!  My Dr was stumped also but has heard of rare cases like that.  There's a few of us like that on here.  So don't get all bunched up.  Relax.  My non-professional suggestion is just think about how you would like to treat.  If you are planning to use the new 3-med cocktail, your geno shouldn't really matter because the meds are available via prescription and all typical genos can be treated with it.  If your goal is to seek out a study, then just continue getting VL and genotype tested every couple of months or so until they can ID it.  Trying different labs can't hurt either!  Your DR should be cool with that.  If not, find another Dr.  Hope that helps.  Hang in there.  We're all in this boat together and more and more are being cured all the time.