Finally a diagnosis...what does this mean? and is this good advice?

[Layla123]

Back Again...this time officially diagnosed with Hep C (i think, lol).....All I can really do at this point is cry then laugh and start the next phase...getting cured!!!! So my doctors office called and told me that the results of my blood test revealed that I was positive for Hep C. The nurse told me that the doctor wanted me to come in and pick up a prescription and have my blood tested again prior to my next appt on 3/5. I asked if she knew the viral load and the genotype and she said they would not have tested for that until they make a decision as to treat of let my body fight it on ots own. DOES THIS MAKE SENSE? DO YOU THINK THE DOC SHOULD HAVE TESTED FOR VIRAL LOAD AND GENOTYPE WHEN THEY WERE CHECKING TO SEE IF I HAD HEP C? Anyone know what is normal procedure???

I am almost positive I was infected only 9 weeks ago...definitely no longer than 12 weeks...I do blood work every 8-10 weeks due to testosterone injections...and I know my liver enzymes have been fine for at least 3 years if not my entire life!!!!

So I see two lines on my bloodtest results (I almost think this is my viral load - but I could be wrong): The lines are:

HCV RNA, QN, REAL TIME PCR
HCV RNA IU/mL - 68495 (high) norm <15
HCV RNA, QN, PCR - 4.84 (high) norm <1.18 log

The rest look likes this:
Protein - 7.1
Albumin - 4.1
Globulin - 3.0
Bilirubin Total - 0.6
Bilirubin Direct - 0.2
Alkaline Phosphate - 48
AST - 119
ALT - 315
Biliburn Indirect -0.4

Any thoughts or guidance regarding blood levels...anything look bad (besides AST & ALT)...Anything look good???

Thanks for all of your support & Comments.
 

[dragonslayer]

Layla,

The PCR test you had does show you your viral load. When the nurse said you had to wait til they decided to treat, she was probably talking about your genotype which is sometimes tested separately.. All my PCR tests also came back with a genotype reading as long as I had a positive viral load, but many, like Lynn, had it tested separately.

In your test, it looks like your viral load is 68,495.  Its a low reading relative to most who test positive.

They want to wait to treat because 25% of infectees are able to clear it on their own; I believe the time frame for this is around 6 mos.   

HCV is a very slow virus and it takes many years for it to do liver damage, and with some, it never does serious liver damage.

So hang in there; it sounds like your doctor's office is on top of this.

[gnatcatcher]

Layla, yes, as Paul said, the HCV RNA, QN . . . is your viral load: 68,495 expressed as a regular number, with a logarithmic value of 4.84. A hepatitis specialist wouldn't prescribe a hepatitis C treatment before testing for your genotype, so the prescription you are to pick up must be for something else, especially since they are still unsure whether to let your body fight the HCV on its own.

Gnatty

[Layla123]

My mistake...the prescription was for another blood test not a medical treatment for HEP C. I guess the docs plan is to test me every two weeks to make sure that my numbers are going in the right direction and see if my bodies antibodies have beaten this virus (eventually)....

So here's my last issue (for now)...I have been doing a ton of research via the internet - which may be a bad thing...but can anyone help me out here...I am worried that I could actually have HIV as well...only because I have been very symptomatic for the past month...headaches, night sweats, hot flashes, slugishness, etc....I have read that a good percentage of people who have Hep C also have HIV, due to a large number of intravenous drug users sharing needles...I also read that the symptoms for HIV can be very similar to those of HEP and could cause elevated liver enzymes..I am convinced I contacted HEP C while getting a tattoo (I do not do drugs, Ive had one sexual partner for past 25 years, I dont share anyones oral hygiene products or razors...but did have a tattoo 9 weeks ago). I did read that HIV can be transmitted by way of tattoo equipment. So now I have made myself worried sick that maybe I am getting symptomatic due to HIV as well...

On the flip side...the only thing that has me convinced that I dont have HIV is the fact that the way they identified the HEP C virus was when I went to donate blood (which I have been doing every 8-10 weeks for the last 3 years)....They sent me a letter stating that they check all donations for many blood born diseases including HIV RNA and HEP RNA (and others west nile, etc)...They mentioned I was positive for the HEP RNA test but negative for the antibodie test and that they concluded I had recently been infected with HEP C (which we now know is true)...However, do you think that they may have found the HEP C and said "okay, this blood fails, do not accept this donation, send letter...and did not test any further for HIV (and others) once i met the fail test for HEP C? or do you think they would continue the test and check for HIV as well? When my gastro doctor originally tested my blood he said he would test me for HIV as well but I told him I believe the blood bank already did and I did not test positive (based on the letters content)....so I guess what Im saying is...I dont want to sit here nervous for the next two weeks worrying that I may also have HIV...are there any indicators besides the AST & ALT from the blood test results I listed previously??? Any thoughts if the Blood Bank (which is a big name in a big metro city) would have also checked for HIV at the same exact time and notified me if both were positive? Any thoughts or guidance would be greatly appreciated....Im worried beyond sick.

[gnatcatcher]

Can you phone the blood bank and find out whether they test simultaneously or sequentially? If the former, then you have your answer. If the latter, you might still have your answer if they test for HIV first, before testing for HCV.

Given that they're probably unreachable until Monday, I hope someone here will know the answer, but if not, I hope this idea of how to get a free answer lessens your stress.

Gnatty

[Mugwump]

Early HCV infection is not at all well studied because it is hard to define clinically and very few infections are caught early on with HCV. Assuming that your infection was directly from an unsanitary and very recent tattoo, it is logical that your infection is still at a very early stage indeed. So just perhaps the doctor is somewhat unsure what to do next.

It is imperative that you become pro-active with every aspect of dealing with this disease! As most here will tell you. If you are worried about HIV co-infection certainly your doctor should also be in this situation. And yes getting genotype with a low level of mature virus in your blood might be problematic for the testing equipment and the protocol might be that this is not done until the viral load is slightly higher for this reason.

It sounds to me that you are experiencing the flu like symptoms that happen when your body ramps up to fight the virus. It has been anecdotally reported by many who have HCV there was a time when this happened when they first suspect that they were infected.

Please try not to scare yourself or stress yourself too much during this time, stress is not going to help you especially right now while you are fighting this disease with your immune system.

Your elevated level of ALT and AST is the thing that needs to be monitored the most right now. However your bilirubin is normal so the liver damage being done right now is not life threatening. This does not mean that the infection is under control or that you are effectively fighting off the disease however.

Also if you do not clear the virus soon, I would highly recommend that you insist upon having a full abdominal ultra sound just to confirm that there is no early damage happening to the bile duct or other parts of your liver and renal system. This also establishes a base line image that can then be compared in future tests to help see any changes that happen as the virus progresses. When I was first diagnosed my doctor did this in 1993. Preventative imaging diagnostics with all liver diseases is standard medical practice, not just for those with long term HCV infection.

I would be very dismayed if you are co-infected with HIV and it was not caught, or your doctor has not called for retesting for this as well. My doctor checked for co-infection early on as this is standard procedure for all who are HCV active!

Indeed you may very well still clear the virus naturally and I am certain this is why your doctor has taken a wait and see approach for now.

All the best
Eric
 


   

[Layla123]

Thank you all....I am glad (sorry) to hear that others have experienced flu like symptoms as well....I think thats why Ive been beating myself up because I mostly read that this is a silent disease that most people have no symptoms whatsoever...in my case, this is not true...I was up lat night in a cold sweat, interestingly enough, it did not last as long as previous night sweats and was back asleep in probably 2 hours or less...I did woke up today with what is now almost the norm...a slight mild headache...in the past these headaches had been really bad (however, I did stop bp medicine because I was convinced this was part of the problem).....Who knows...9 am Monday morning I am making an appt with the hepatologist and am going to call the gastro doc to discuss his findings and my current symptoms....would like to hear it from the horses mouth and not an office gal (no offense to anyone - but the doc. The person who relayed the information on from doc told me they dont test for the viral load - when in fact it was included on the report)...Thanks to everyone for their input...keep it coming!!! Have a good weekend.