Hep C Discussion Forum

Crossfitgirl · Member

RE: Hi. Question about Red Cross letter and tests.

Isiscat2011 · Guru

If you have had 3 prior positive antibody results then it is likely you were infected with the virus but spontaneously cleared it. Spontaneous clearance has been reported in about 25% of the infected population.

Given the inconsistencies here, however, I would request another test so you can put this thing to bed once and for all. Ask doc to send it to a different lab.

Crossfitgirl · Member

Ok. I'm about to lose my mind. You guys are the only people I trust with my questions. My PCP' office just called and said the Specialist they referred me to, Dr. Cecil, does NOT need to see me because he reviewed the lab work results and concluded I do NOT have HCV. What??

i asked to have the PCP call me to discuss this because I'm so beyond confused. I'm Leary of the lab work in the first place because the HCV antibody test was negative and over the past four years I've had 3 positive antibody tests.

any input on what course I can take to get results and feel confident?

Thanks for any input!

Isiscat2011 · Guru

It really is the strangest thing. I'm sorry you have to go through this but I can't think of any good options. Trying to get lab work done on your own doesn't seem like a very good solution; you do need a doctor to help you with this.

You are holding up very well. Remaining calm and maintaining your sense of humor. Well done. smile I'd probably be cussing and swearing like a drunken sailor on shore leave by now.

Crossfitgirl · Member

Hi Isiscat- I think my PCP...(who I actually like much more than the one I had when I sustained the needle stick and exposure to HCV four years ago) believes the lab work that was done is legit. she states she "has never seen anything like this" in reference to my lab results. I think she sincerely believes I need to be seen by this specialist for confirmation on if I have HCV or not.

Im thinking the Netherlands sounds lovely! :)

Isiscat2011 · Guru

We could always move to the Netherlands! Just kidding, but a 2 month wait doesn't surprise me. Medical care in the US has become a lottery and a slow one at that.

Did the lab even determine yet whether you have HCV? If not, I'd work on finding that out in the meantime. If this PCP can't help you get some fairly simple lab work done then you may have to find another who will. Of course, getting a new PCP could take a couple of months too.

It is just unreasonable to expect someone to wait months just to find out if they have HCV. I'd call my PCP and tell her that as diplomatically as you can.

Crossfitgirl · Member

My never ending Journey of waiting continues...after almost two weeks of waiting, my PCP's office called today with information about my referral to the HCV specialist. My appointment with Dr. Bennet Cecil is scheduled for 9/2/2014. Awesome. Over a two month wait?

My PCP's office said I could call Dr. Cecil's office daily to check for cancellations. I just may do that except I'm afraid they will think I'm insane.

What would you guys do? The idea of waiting two more months is definitely not appealing.

Thanks in advance for your thoughts.

Crossfitgirl · Member

I was thinking of nibbling on myself to see what's so fascinating about my blood. LOL Yes, thank goodness insurance has covered everything so far. Thanks for the giggles. :)

Isiscat2011 · Guru

Crossfitgirl wrote:
im guessing this specialist will just rerun the lab's, right? im fine with that as long as the end result of this mess is a confirmed result.

That seems the logical thing to do. Hopefully the specialist uses a better lab.

Sheesh, I hope they leave some blood for you. How much do these vampires need? biggrin I sure hope your insurance is paying for all these trips to the doctors and lab work.

Crossfitgirl · Member

I was thinking the lab was wacky but my logical portion of my brain told me lab's know what they are doing. the funny thing is my first thought after I got off the phone was "I need to ask the hepcfriends...they know everything. :) My typical way of "blind faith" in professionals obviously needs to be discarded for the time being.

im guessing this specialist will just rerun the lab's, right? im fine with that as long as the end result of this mess is a confirmed result.

Tig · Admin

I agree, you don't have a doctor problem, you've got a laboratory problem! Seems obvious that the lab doesn't know what they're doing. It should be (and is) a simple process. Good luck...

Tig

Isiscat2011 · Guru

This is just bizarre. I'm thinking that what you need at this point is a reliable lab--not a top-notch hepatologist--the hepatologist referral should come after it is confirmed that you even have the virus.

Maybe someone else can take a stab at what could be going on here. I am befuddled at this juncture.

Crossfitgirl · Member

Well, my story keeps getting more bizarre. I went in Monday and they took more blood to run the genotype testing. The Doctor called today and said the results were "indeterminate" and she is totally baffled by my labs. She called a gastro doctor to discuss them and see if she should refer me to him. He was confused as well as suggested she refer me to some top-notch go-to HepC doctor in Louisville. (That's where I live).

So, I now wait for that appointment. Good times.

Crossfitgirl · Member

Thanks guys for confirming what I thought was impossible. My Doc said she was baffled as well. I think when I go Monday I will request they run the AB test again.

Cinnamon Girl · Guru

Hi Crossfitgirl, Tig is right, it`s not normal and it makes no sense to have a measurable viral load and not be positive for the AB`s, one of those has results has got to be lab error. Anyone who has ever been infected with Hep C will always carry the antibodies for the rest of their life, whether or not they currently have an active infection.

Sorry you`ve got more waiting, I think a lot of us here can relate to that, but you should find out for certain what`s going on after your next lab tests. Try to put it out of your mind for now and enjoy your vampire-free weekend! Keeping fingers crossed for you! smile

Tig · Admin

Hi Crossfit,

That really is unusual. To set you straight, you can have a positive AB test and a negative or undetectable viral load, but not the reverse. The antibodies are the first to develop after infection and even with SVR, you will forever be positive for HCV AB's. Sounds like your lab is similar to mine! I think we all have a story we can share about their ability or lack thereof! Hang in there, you'll get it figured out eventually. Try to relax this weekend and dream about your hot sexy vampire furious waiting to see you on Monday, lol! Good luck....

Tig

Crossfitgirl · Member

Hi guys. My story is getting comical at this point. My Doctor called Tuesday and said she was very confused. My antibody test came up Non reactive...which is odd because I had two positive AB tests in June and July of 09 as well as one in April of this year according to the Red Cross.

To make matters more confusing, she said my blood did show a viral load...it was small...but present. I don't recall the actual VL as she called in the middle of the graduation i was attending for my niece. great timing. Anyway, at that point she said she was confused but waiting to get the Genotype test to see the outcome of that.

Fast forward to yesterday. She calls as I'm going through security at the Orlando airport. More fantastic timing. :) She was very apologetic and said she bawled out the lab but apparently they did not save enough of my blood to run the genotype test. ??? I have to go back this Monday so they can draw more blood to run that test. I'm beginning to think a sexy hot vampire is stealing my blood. :)

is it normal to have a negative AB and stil have a VL? I'm so confused. How can I have positive AB tests and then a negative??

Barnacle · Senior Member

When I had my VL checked for the first time during treatment I was on pins and needles for the result. When lab tech was labeling the vials I half jokingly said this is the only one I really care about and pointed to the VL test on the lab order sheet. She looked rather sheepish and made up an new label. It was on the bottom right corner of the sheet and I don't think noticed it.
The waiting is the worst, hang in there.

Crossfitgirl · Member

Thank you for such supportive words Isiscat! I went and lifted some weights after I posted...moving heavy stuff is my stress reliever. I feel ready to go enjoy a week of fun and relaxing with my family.

Once again...you all are amazingly wonderful.

Isiscat2011 · Guru

Hi Crossfitgirl:

Very frustrating. Yes, mistakes happen but this one stinks. It is one thing when somebody makes a mistake and forgets to add extra pickles to your Big Mac, but quite another when somebody messes up your bloodwork! Oh well. It will be straightened out by the time you return. Have a great vacation and try not to give this a single thought in the meantime.

You already know this but, in the event you were infected, treatment for you should be relatively easy. If you were only infected 4 years ago there is an excellent chance your liver has barely noticed the virus. You will have many treatment options and all of them good.

One of my sisters is a Social Worker (she left Nursing after many years for social work--from the frying pan into the fire I tell her) and I swear you guys should get hazard pay.

Take care and enjoy every minute of your vacation. smile

Crossfitgirl · Member

Just a frustrating update. My blood was drawn on May 8th. I contacted the Doctor on the 16th as I had not heard from her. She replied the results would likely come this week however, she would be on vacation so she would contact me after Memorial Day.

I leave for vacation tomorrow and decided to call and see of anyone else in the office could give me the HCV results. Her assistant called me back and informed me the HCV tests were never run. She saw the orders in my chart but apparently the lab girl only took blood for the panels ordered and overlooked the HCV orders. Awesome. Im trying not to be mad....I get people are human and all that jazz but really but who overlooks lab orders when that's your job?? Ugh.

The good news....her office is only 3 miles from my house so I just got back from having more blood drawn. The wait begins...again. :)

Thanks for listening...I feel better just having a place to share. :)

Crossfitgirl · Member

Thank you Matt! I've learned an incredible amount of information in such a short time from reading these forums. I'm beyond grateful.

Matt Chris · Guru

Hello Carrie

Welcome to the forum from me as well, you have found a great place.

Sounds like you are on a good tract and are getting ready for all the correct answers, that only will bring you much comfort and a sure direction for your future.

Hoping the best for you

matt

Crossfitgirl · Member

I had my appointment yesterday with the PCP. I brought the Red Cross paperwork and the test results that my old doctor ran in 7/2009 after I sustained the needle stick. (HCV RNA Qualatative PCR-Results Not Detected).

I really liked this Doctor. She said she would be running Qualatative and Quantative tests as well as one that would show the genotype. In addition to these she said she was running two test that would show liver stuff. She mentioned a referral to a heptologist and basically said what you said Tig. That advancements are happening so quickly and that current treatment is not a walk in the park but it is vastly better than treatment just a couple years ago.

I will update once I get the blood test results but based upon the tests she is running, her "pep talk" about treatments and the mention of a referral to a Heptologist...I'm thinking she believes HCV will be confirmed.

Tig · Admin

Hi Carrie,

Yes, try not to get worried or upset about this. I'm certain it's a shock right now, but this disease is so easily treated now, that it's not the nightmare it was just recently. The new treatments are effective and short, often without any side effects. Not at all like the treatments I went through twice. We've got so much good info here and if I can help you with anything at all, let me know. We have a lot of good people here that are always willing to help as well. Let us know what you find out from the doc and stay positive.

Tig

Crossfitgirl · Member

Thank you so very much for your reply Tig. Your insight and information is sincerely appreciated. You are correct, I'm not surprised about the positive results for the anti-bodies...it was the results of the suplemental test they referred to (NAT) and "likely diagnosed with HCV" that kinda took my breath away.

They did not include any specifics of the testing, just the results. That's very frustrating as I feel like I'm researching something with blinders on. I actually appreciate you sharing the conclusion, based on what limited info I had available, that I probably have the virus. I was thinking the same thing But was not sure if I was jumping to conclusions.

I will share what I learn after my Doctor appointment this Thursday. In the meantime, I will continue to read the forums, your link and hopefully go into my appointment with knowledge instead of fear.

Oh and thanks for deleting the other post. I tried to and realized I was unable to do that!

Tig · Admin

Hi Carrie,

Since you were previously tested and had knowledge of a previous infection, it shouldn't surprise you that you have tested positive for the HCV Antibodies. Anyone that was HCV positive at any time in their life will always test positive for them. Now the NAT (description and link included) is an RNA test that can either show a viral load or viral presence. The quantitative test will provide an actual value (IU/ml) according to the sensitivity of the test. The qualitative test indicates a positive or negative result. Did they provide you with an actual copy of the test results? Without seeing the actual results and how they were quoted, anything I can tell you at this point would be an opinion and an assumption on my part. I hate to provide you an answer for such an important question based on an assumption. But it appears from your information that you have tested positive. The NAT test is an RNA test and it tests for active virus. The Red Cross states that came back positive. Without knowing the type of test, Quant. or Qualitative all I can determine is that the results indicate a positive.

If this is indeed the case, I'm sorry to be the bearer of such news. There has been a lot of new news in the HCV area of discussion lately. I invite you to look through the forum and use our search function to read about all the recent advances in treatment. If you are indeed positive and have an active infection, the time to treat has never been better and certainly has never been as highly successful as is now. This fall (Oct/Nov) Gilead will release their new blockbuster single pill, all oral treatment regimen, Sovaldi and Ledispavir, with near 100% rates of effectiveness in trial literature. There are also several other very highly rated treatments currently on the market. You'll find many of our members currently on these courses of treatment. If there is such a thing as there being a good time to find out you have the disease, this is it. High rates of success, with very low instances of negative side effects.

If you have those actual test results or any additional questions, please share them and we'll do our best to answer them. All you can provide, will help us to give the best informed opinions as possible. Things like the lab test results, biopsy, ultrasound, etc. provide a lot of insight. However, since this is new news to you as well, I imagine you don't have much information to share yet. But as you collect it, please feel free to share it here or in an introduction in our New Members section. There are a lot of very kind and educated friends here and we like to consider ourselves one big family that looks out for each other. We're always here for you, good luck!

Tig

Molecular HCV RNA Tests: Molecular diagnostic tests for hepatitis C specifically detect HCV RNA and the process is commonly referred to as a Nucleic Acid Test (NAT) or Nucleic Acid Amplification Test (NAT). The HCV NAT becomes positive approximately 1 to 2 weeks after initial HCV infection. The NAT test has become the gold standard supplemental test for patients who have a positive HCV EIA screening test. The NAT can determine whether a patient with a positive HCV antibody test has current (active) or resolved HCV infection. In addition, the NAT can be used to diagnose individuals with acute HCV infection. The results for the commercially available quantitative HCV RNA assay are given in International Units (IUs).

Qualitative HCV RNA: The qualitative HCV RNA tests provide a yes or no answer to whether detectable HCV RNA is present in the sample. The qualitative HCV RNA assays are FDA approved for HCV diagnostic purposes. These tests, however, do not provide a quantitative level of HCV and are not used for baseline HCV RNA levels or for monitoring response to therapy.

Quantitative HCV RNA: The quantitative HCV RNA test is not FDA-approved for HCV diagnostic purposes. More recently, however, with the introduction of ultrasensitive HCV quantitative RNA assays (that detect as few as 5 copies/ml), the quantitative HCV RNA has achieved a similar level of diagnostic sensitivity as the qualitative assay. In addition, the quantitative HCV RNA assay generates an actual HCV RNA level that may provide useful information as a baseline HCV RNA. Because the sensitivity of the quantitative HCV RNA assays has dramatically improved, many clinicians have utilized the quantitative HCV RNA for diagnostic purposes.

http://hepatitisc.uw.edu/pdf/screening-diagnosis/diagnostic-testing/core-concept/all

PS: I deleted your duplicate post in the New Members section. Either location was appropriate.

Crossfitgirl · Member

Hi! I donated blood recently and received a letter yesterday from the Red Cross stating #you most likely are infected with Hepatitis C". Their results state I was Reactive for Hep C Virus Antibodies and Positive for HCV Supplemental Test. They refer to the supplemental test later on in the paperwork as a "NAT".

Im a Social Worker and about four years ago I was poked wiTH a needle by a client who was angry right after he used the syringe for his insulin. He had HCV. I went through test and was told I was positive for anti-bodies but fought it off and did not have the virus. My doctor never suggested further testing and has never tested me again.

is this NAT/supplemental test the Red Cross did a viral load test?? I have an appointment Thursday with a new doctor to follow up on this but that seems so far away. I guess I'm just wondering how right the Red Cross testing is??

thanks!!

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