Medical Mystery - Need Guidance

[Joanie68]

Dear Doctor -



I am a healthcare communications professional a.k.a I work in the industry so I understand what is going on with my body is not normal and am frustrated I have not found the answer - yet.  I am concerned I have an undiagnosed autoimmune disorder or liver damage that is going under the radar and I want to make sure everything is okay.  I am a caucasian female of irish, czech, swedish decent, 38 years old, fit, active, eat right, happy and do not smoke or drink alcohol - here's the skinny:



In 2000, I became ill (violent vomiting) after a rigorous hike so was tested for food poisoning - the nurse ran full Hep A B C panel to be thorough.  All was clear EXCEPT screening test for HepC - it came back first borderline positive (later positive).  This completely threw me (though they weren't concerned) though I have no high risk before or exposure to blood or potentially contamined devices (other than manicures) that would put me at risk.  All other tests - RIBA and PCR negative.  To make sure I was okay, I was tested every 6 months and saw a liver specialist.  Since 2000 - I am tested yearly - the HepC screening test is always positive, RIBA and PCR always negative, no elevated liver enzymes or abnormal liver panel tests - ever - last tests were this past May '06.  However, I do have a 1:80 ANA response, a mildy low C3 or C4 (can't recall which at the moment) and a mildly low white blood cell count that fluctuates to normal since my medical records dating back to 2000.  



About 3 years ago I began experience RUQ discomfort when jogging.  I talked to my doctor about it, he did ultrasound on abdomen and refused liver biopsy because other tests normal.  So I let it go.  Then 2 years ago, I started experiencing first an odd fullness, tighness and then aching sensation in right upper quadrant after drinking alcohol (not large amounts, a couple glasses of wine) - at first it was intermittent, now I cannot have even the smallest amount of alcohol and I will have this sensation and it will last for about 3 days.  I know this is not normal.  My concern is that I have damage from either HepC that resolved itself or Autoimmune hepatitis that is going under the radar because my tests seem mild (though I know ANA markers at 1:80 do not indicate level of damage to liver, nor do ALT tests).  



I want a liver biopsy just to have the peace of mind of knowing my liver is okay but with my tests I can't get people to listen.  I feel like I have to be jaundiced or at death's door to get them to hear what is going on with me - and I cannot sit back and wait for that to happen.  



So, the question is, if you were me, what would you do:

1.  What do you think this is?

2.  Have you ever had a healthy patient with this problem?

3.  What tests do I need to be able to get someone to biopsy my liver or is there another best test?

4.  How can I best communicate this to right doctor to be heard?  And who is the right specialty - is there someone in LA area??

[Kevin Pho, MD]

To answer your questions:

1) Difficult to say without examination.  I agree that not many physicians will do a liver biopsy with that ALT.  The ANA level is indeed low - to further evaluate for autoimmune hepatitis, other antibodies can be tested for.  This can include anti-smooth muscle, and/or antiactin antibodies and antimitochondrial antibodies.



2) Health patients normally don't have the symptoms you are describing.



3) A normal ALT is generally not an indication for a liver biopsy.  I would image with an ultrasound (likely already done), and consider a HIDA scan with CCK stimulation to evaluate the gallbladder.  Another opinion on a liver biopsy can be sought with a GI physician.



4) A GI specialist would be the appropriate physician to see.  You can also consider a liver specialist.



Followup with your personal physician is essential.



This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.



Kevin, M.D.

kevinmd_

[Kalio1]

I hear your frustration. I too had Hep C and didn't have enough "clues" to warrant diagnosis much less a biopsy until the damage was done, doctors kept telling me to stop worrying, my LFT's weren't high, etc. In my case no one thought to even test me for Hep a,b or c so I eventually did end up displaying symptoms and having my liver damaged before I was diagnosed, so be glad you know you have it, they told me I had an allergy (LOL)



Have you thought about treating your illness? Being Hep C positive puts you at much greater risk for other dieases and illnesses, including but not limited to diabetes and lymphoma so it is worth considering treating it. Mot doctors do not explain to their patients all the ramifications of being poitive for this virus.



Viral loads fluctuate and are not a measure of liver damage, they really dont tell you much at all. Their only value is to be able to establish when you clear the virus while you are on treatment, they do not measure the degree of infection, a common misconception. You can have a high viral load and no liver damage, you can have a low viral load ( like I had) and substantial liver damage. You can have cirrhosis and have NO SYMPTOMS too.



The fact that they can't read your viral load means you don't know what it is, it doesn't necessarily mean you don't have one, what test are they using? It can be flying under the testing radar, it could be that they can't type your strain for some reason, who knows. Does this mean you do not know your genotype? You are in LA, see if you can get a doctor to get you the ULTRA QUAL test from NGI, NGI is in LA. You should have no problem finding a top notch Hep C doctor/expert there. I'd strongly encourage you to see a Heptologist rather than a GI,unless that GI has a lot of Hep C patients and is "up" on the latest developments in the management of this disease. Ask them, find out how many patients he sees with HCV. Best thing you can do is find the best doctor you can who is expert in the field of your disease and also to learn all you can about the disease and become an expert yourself so you will know the right questions to ask.



There is a LOT of misnformation out there and many doctors who either do not know much about it or what they do know is outdated. You have to seek out someone who is works with a lot of Hep C patients. You are right to listen to your body, it is trying to tell you something. I know, the doctors often play it down and tell you not to worry if you don't have symptoms (yet) but Hep C should be monitored extremely carefully, the fact that you haven't had a biopsy is a big concern. Normally ALL genotype 1 are given a biopsy on diagnosis, maybe part of your problem is that they aren't able to determine your viral load or your genotype? Not enough info to know. I don't know what test you had. Your new liver doctor can work at getting you genotyped and getting a viral load, this does happen to some people that it can not be determined but it does not mean therefore your disease is "mild" My LFT's were "slightly above normal" yet my liver was being ravaged by the virus. I, like you, picked this up somewhere, a surgery, the dentist,a manicure or some how but not from past drug use or needle use, that I know for sure. The stats show about 40% of people with this virus got it some other way than drug use. Many doctors don't know that either.



Anyone Hep C positive should avoid alcohol, it ha th epotential to cause viral flares and escalate damage, ANY alcohol. Be very careful of medication if you take any, OTC ones too. I know some docs say it is ok to drink a "little" while Hep C positive but no one knows that for sure, in fact studies show that alcohol can be like "fuel to the fire" of Hep C. Particularly if you have increased pain for days after consuming it, I'd tay away form it.



I did eventually find out I had Hep C and also had substantial liver damage (early cirrhosis) You are so right! They ome doctors DO want you to wait until you are displaying symptoms! Ridiculous as that is. Be glad you know you have this "silent killer" disease as it is called. I'd do some research on "extra hepatic manifestations" of Hep C. Bear in mind being positive for this virus puts you at higher risk for other illnesses. Be aware that Hep C is NOT a liver diease, it is an immune system disease and can affect your body in many ways, not just your liver although the virus "likes" liver tissue. Liver problems can be very sneaky, you are smart to keep trying to get definitive answers and to be proactive in trying to get those answers. Please visit the Hepatitis board on MedHelp, lots of info. there. There is even a doctor there, goes by the name of hepatitisresearcher who can probably guide you in getting the proper test to get a viral load, he knows all about PCR/DNA tests, he INVENTED one and also was one of the doctors who started NGI. He participates on the hepatitis board, you can also browse the archive there for info. and links to pertinent studies. You might post there and see if others in the LA area can recommend a good Hep C doc in LA. Im north of you in anta Barbara.

You are right to want to have a biopsy to determine the status of your liver. There are more blood tests that can help to determine your liver status too. Have you had a