Hep C back after SVR in 2001?.....Dr sent a referral & labs to MDAnderson!
I just talked to my Doctor's nurse.
Just wanted to let ya know that she just faxed my labs to me and MD Anderson Cancer Center
along with a referral to MD Anderson Cancer Center.
Here are my LABS:
Hepatitis C Antibody Value: Reactive
Signal to Cut-Off Value: 22.70
Notes: The patient's sample tests reactive with a high S/CO ratio: > or = 8.0.
Samples with high S/CO ratios have been shown to repeat as positive using a
different methodologyy 95% of the time or greater. Therefore, additional testing for
verification of the result is not recommended. (CDC MMWR No. RR-3, 2003).
CHOLESTEROL, TOTAL 282 H
HDL CHOLESTEROL 67
TRIGLYCERIDES 545 H
- LDL cholesterol not calculated. Triglyceride levels
- greater than 400 mg/dL invalidate calculated LDL results.
- Desirable rang >100 mg/dL for patients with CJD or
- diabetes and >70 mg/dL for diabetic patients with known heart disease.
CHOL/HDLC RATIO 4.2
TSH, 3RD GENERATION 4.06
I have been taking Levothroxine since I completed my Hep-C treatments 10 years ago.
I stated out with 100 MCG in 2001. Doctor lowered dosage in 2006 to 50 MCG
Doctor just increased to 125 MCG.
Referral sent to MD Anderson Cancer Center - Hepatology Center
Reason: Please evaluate
Diagnosis 070.70 - Hepatitis C without hepatic coma, not otherwise specified
What can I make of this??? Got any suggestions...cause I'm totally confused nnnow!!! I need more inspiration from you guys. Thanks!!!!!
You will always be positive for the antibodies so definitely if you have concerns the best thing is to run another PCR.
Unfortunately, lots of us end up trading in hcv for high cholesterol......especially those of us with thyroid and liver damage (which you have both). If you look it up you will see that both are responsible for raising the numbers. Your triglycerides are really high though I know when I tested without fasting at all mine were like 300 - then when I did fast they went down dramatically. Did you fast before the test?
In short, the results above are HCV antibody, thyroid and lipid panel. Nowhere in there is anything that suggests you are currently infected with active HCV.
Positive (reactive) antibody results are indicative of past or present infection, but they don’t distinguish between the two. As the esteemed gentleman from Florida mentioned, you need to get a ‘HCV RNA by PCR’ test to confirm active infection.
As a side note, you’ll also need to address the lipid panel. Triglyceride results greater than 500 can get you into trouble, including pancreatitis, I believe.
I have had subsequent viral load testing multiple times over the years.
Thats the reason I was so surprised whn dr called....I can't imagine how I would have been reinfected. Only possible way would be when I was hospitilized 2 different times over the past 1.5 years. The last I was tested was about a year ago at MD Anderson. I was being treated for Ovarian Cancer (cancer removed with complete historectomy and had to have blood transfusion) and Diabetis. Was with them for a year through their financial program due to no Insurance...and in Sept 2010 I let it expire and with work and health issues have not had the energy to re-apply. Back in July 2010 I was taken to the emergency room here in Livingston (band-aid hosp) because blood glucose dropped to 6. Boyfreind told them to call him and take me to MDAnderson if and when they had to move me...they didn't either and emergency ambulanced me to thier mother hospital in Lufkin where I was for 3.5 weeks on a respirator and tons of morphine to keep me unconcious. Hell of an experience and long time recovery. Thats why I am so pleased with the referral the doctor sent to them!!!! The Doctor's at MDAnderson are AWSOME and that is where I need to be!
Thanks for your response and your ears...
Again, all that I see in your labs is that the Antibody test indicates "reactive", which as you know DOES NOT mean you actively have HCV virus. I think the reason they are referring you is that your doctor thinks you have HCV again! Its still JUST the antibody test, which will always be "reactive" in someone who has become SVR! So I don't understand your doctor's concern and urgency. Your TSH (Thyroid test) is within the old normal range, and only very slightly above the newer ranges...so at very worst, you have a very, very mild, sub-clinical hypothyroid issue, that MOST doctors would not even treat. Its way too close to normal. And the triglycerides....well they can be high in anybody, and have no relation to whether you have active HCV. Did you talk to your doctor to discuss the issues that were raised on the last thread you initiated? Or are you just following up on his nurse's referral. I still think your doctor is mistakenly misinterpreting the antibody test as meaning you are re-infected, and this is the motivation for the referral. I don't get it.
PS. A good idea would be for you to speak directly to your doctor...not his nurse...and discuss the Antibody test issue with him directly. Let him know that ALL of us SVR's (non-infected) have "reactive" antibodies. Ask him WHY he would interpret that test to mean you have become re-infected with HCV. I would love to hear his explanation on that one. He is not only off-base, but did not even have the decency to call you directly to discuss his verdict of "reinfection"!!! Yikes!!!
An S/CO ratio that high has been shown in some studies to be a predictor of active infection. The Anti-HCV test IS an ANTIBODY test, not a test for the actual virus, but studies have shown a very high correlation between high S/CO ratios (like yours) and an active infection.
My own S/CO ratio was within a point or two of your reading. A PCR confirmed active infection in my case.
Not trying to bum you out, but to make you understand it's very important to get the PCR test as others have stated.
I am so sorry to hear of your active infection. I am interested in knowing how you are and what is going on with you at this point.
Thanks for the info...and NO, believe me...all I've been through you could not possibly burn me out...although not good news...it is certainly helpful. This may explain the doctors reasoning. This is why I am extremely eager to get back into MD Anderson....They know all about the testing...and believe me...they don't mess around...they turn ya inside-out with their testing procedure. With all my health issues (truly beleive they all stem from the HCV treatments) this is where I need to be!
Thanks again and Take Care of Yourself...
No...I haven't talked to the doctor yet...I am trying to have the patience..lol!!!... to wait on MD Anderson to come through. I know that once I get back in with them they will turn me inside-out with their testing procedures...they will take care of me and that is exactly what I need.
Then if needed I will confront the referring Doctor. Oh..The doctor was the one to call me initially with the test results. I talked to her nurse when I called back.
In response to your comment:
"Your TSH (Thyroid test) is within the old normal range, and only very slightly above the newer ranges...so at very worst, you have a very, very mild, sub-clinical hypothyroid issue, that MOST doctors would not even treat."
Three months ago the Doctor ordered a TSH (don't have any numbers)...she increased my thyroid meds from 50 mcg to 75 mcg and after this last test (reading of 4.06) she increased the dosage to 125 mcg. This has me concerned after reading your comment. Can you help me by explaining this???.
Thanks Again...I always look forward to hearing from you!
Been working my way back to you...
Not feeling well lately...Sorry for the delay in responding to your comment!
Thanks for the info... This is why I am extremely eager to get back into MD Anderson....They know all about the testing...and believe me...they don't mess around...they turn ya inside-out with their testing procedure. With all my health issues (truly beleive they all stem from the HCV treatments) this is where I need to be!
Sorry, I thought your TSH result was for unmedicated status...ie. I thought that you were not on any thyroid medication currently. Since you are already being treated, the goal is to keep the TSH more in the "ideal" range...usually somewhere from 0.75 to about 2.0 So I guess they just see a dosage adjustment as a standard step, and I would tend to understand their thinking. Still, with a TSH around the 4 range, you are in good shape, and by no means spiraling into Hypothyroid land. I hope you get that PCR HCV test done quickly...for your own peace of mind. I still feel very optomistic having read your background...but the test will give you the final answer.
S/CO or signal to cutoff ratio is a poor mans way to check the validity of the antibody test. Companies use it to determine whether to proceed from one ANTIBODY test (EIA, quick and dirty and cheap) to another more expensive ANTIBODY test called the RIBA. If the S/CO is low, then maybe the positive EIA is a mistake and there are no antibodies. So the sample is retested with the more expensive RIBA. If the S/CO is high, ya got bona fide antibodies, and retesting with RIBA will usually(95% of the time) confirm the presence of HCV antibodies, so they skip that and save the money.
Your S/CO will always be high because you actually have HCV anitibodies cuz ya had the virus. It says nothing about the presence or absence of active HCV virus in the blood, which must be determined by actual RNA testing.
A consult to MD Anderson is gonna cost a lot more than the HCV RNA test that your doc could order and that the doc at MD Anderson's gonna order. The HCV RNA test is the only further intervention which will give meaningful information.
Tell your regular doc to stop ordering HCV Antibody tests...they will always be positive, they will always have high S/CO, and you'll be worried, and then the doc will order another HCV RNA cuz you're worried...a pointless exercise. Better you get him to order liver ultrasound q6mos if you had fibrosis, and simple old LFTs...
Just my $0.02. That could be my HCV antibody test result - or that of just about anyone on the board - and I'm SVR and RNA UND x 3 now...
It's scary to think the beast might be back, I know from waiting for RNA results...hang in there! Your doc should have handled this with a two-minute office visit...
I think FoieGras said above exactly what I have been trying to also convey.... That is, just have your doctor refer you for the HCV RNA test. That will give you the only real answer that you need right now...the answer to whether you have the active virus in your system or not. I doubt you need a huge specialty center workup just to find out the results of a standard viral load test (HCV RNA). Your GP needs to also get some training and education about which tests are meaningful for someone who has been treated and is SVR. There is NO REASON he should have ever had you take an HCV Antibody test, and the fact that he did indicates he knows very little about HCV treatment and follow up testing. Good Luck!!!
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