the good the bad and the ugly-Ultra sound is useless

mild vent, and chance to hear other warnings, horrors, or get aquainted tales.

even though my enymes were "slightly elevated for years, and I had  exaustion, fatigue, sweats, brain fog, and R. Quadrant pain my doc did not test for Hep C for years, and argued with me repeatedly that I was fine because "your ultra sound showed nothing.:

be  persistant.  after 7 years of fatigue fevers and pain, could I get an "I'm sorry". NOPE.
It took a different doctor with a BRAIN to see the most common blood disease.

my biopsy came back- grade 1 stage 3/4....spleen/liver both enflamed/enlarged-.Viral load 1.4 mil.

DON"T settle for ultra sound, or even Cat scan, or "well, lots of things can cause elevated enymes and a brush off".
get a biopsy and the right blood work AND the right doctor.

I'm 2 weeks into treatment and so all this has me really peeved right now.
Don't want it happening to anyone else.

does anyone else have a major warning for newbies.

[jmjm530]

I'm guessing your first doctor wasn't a  (liver specialist) or if he was, you should report him because not only did he not test for Hep C when you presented elevated enzymes, but he apears to be relying on an ultrasound to gauge liver damage when that is not its primary purpose. For that, you need a needle biopsy, or a Fibroscan to be sure.

So my major warining for those new here is to get yourself evaulated by a liver specialist (hepatologist) if at all possible. I'm sure some gastro's are also very good, but sometimes you don't know that in advance and at least with a hepatologist the odds will be more in your favor that they know at least a modicum of what they are doing.

Good luck with treatment and thanks for shaing your story so others can benefit.

-- Jim

[charm27]

I know the " major warning" sign is "all of us being here in the first place. We are the sign .
My opinion is once diagnosed with HCV you should go for a biopsy (especially if you've been aware
or have had signs such as high enzymes etc.... I wish everyone would have to be tested for this crappola illness..it should be the way it is..in my mind anyway. Would sure help alot of folks get well with something they didnt know they have in the first place!


The Very Best Of Luck.

[merryBe]

thank you! I did all that NOW, but it was after pressing for years, SHE even tested me for lyme and other exotics, but never went beyond ultra sound for the abdomen even though I kept insisting it was either my gall bladder or liver, based on the pain.

I got a specialist referral,out of her, FINALLY, after 2 trips to emergency, and all the right tests, but it was only after knocking my head against the dismissive wall and seeing 10 other specialists trying to figure out what YOU ARE RIGHT, the right test in the first place, would have detected in a heartbeat.

I also learned I had pituitary dysfunction, also common to HEp C people, which makes treatment very bad, becuase you basically age way beyond your years, and do not repair tissue without normal levels...I was 20 percent of normal, and so now I take growth hormone shots just to reach normal level....but this I had to diagnose on my own, my doc argued this could also not be the case "as it is rare"....turns out, thats a lie too!! It's common among Hep C and head injury people and I'm both. (went through a windshield. It's also common for downwinders (lived in Nevada and had 1000 nukes tested just north of me). So there's several things that can lead to this.

Thanks to the right doc AND THIS FORUM, I'm on tx now, but it was hell getting here. Most people out there with cronic (chronic) fatigue, fibromyalgia and a host of other things are going to find out at autopsy, or not, that what was causing it all was the HEP C.

Maybe they're thinking folks will die before "the epidemic" is common news...so they won't have to spend billions more on treating all the hippies. Or so that sobody will want transfusions....who knows.      sounds cynical, but, if you think about it.......what else is floating in blood that they can't test for yet???  Just a thought..

trouble is, I don't know whether I got this Pituitary defibiency from plasma 25 years ago, or using in my teens 35 years ago, but I had a severe spinal injury from a dar wreck, and so needed pain meds just to move, no lifting allowed ever, and so I never told my doc I had once used, figuring they'd just assume I like pain meds, which I don't. Don't use, stopped all that in late 60's. But you don't dare tell doctors you EVER did anything, or you will get no relief for anything. At least, that's the general perception, and with good cause.

[merryBe]

don't know mr. Liver history but here's mine for Manny and others.

[lanceyt]

hey, just want to share same situation. i am a filipino, working in japan right now. i experienced symptoms of hepatitis, join pain, quadrant pain, fatigue and etc. i consulted a doctor and he conducted a blood test because i request to. my ALT is high 103 and AST is 39. he referred me to an internist and i asked for a hepatitis test, but the doctor insisted to conduct an echograpy (ultrasound) rather than hepatitis test.  the result was normal but i continuesly experience all the symptoms that is why i insisted for HEPA TEST. so right now, i am waiting for the result. this saturday, i think i will have the result. i am hoping and praying that is negative even though i am experiencing worst symptoms of liver problems.

[merryBe]

sorry you have to go through this. be sure and get an RNA viral load test at the same time. Otherwise, you could get back a false negative, and walk away thinking you don't have hep.
FAL negs and pos happen daily with the main test, so ask for the Viral load, RVA, it's the only one that can say for certain if you have the disease.
you can also read a positive, but be viral free, if you were ever exposed and made your own antibodies and cleared it.
then you are left wring your hands for 3 weeks waiting for the right tests to be done.

why put people through that. We insisted all three be done at once. and docs went along.
turns out my son was pos. but was neg for visir....Imagine how we'd all here, you have it, but now, you cleared it at birth.  
so have both tests together, it's the only sure way to know whats really happeneing, and give more peace of mind than to wonder...was the test right...or, if it come back pos....then how bad am I....two weeks waiting means  BAD.
hope that helps

[froggydan]

For me,the guilty one isn't the ultrasound, but your doctor was becauz he didn't do a simple blood analysis ! Ultrasound and fibrotest (+actitest) are now both important+accurate and may sometimes even replace a needle biopsy (invasive), its only when you have low counts like stage 1 that their'not as accurate...My generalist (doctor) was also a lame one that didn't ask for a blood analalysis when he should have...and now i'm on stage 4 (cirrhosis) tryin' to get to stage 3.

[merryBe]

sorry you are going through it too!!  They did the same with me, in emergency, said, oh you just have excess acid, sent me home with some acid blockers.

I knew it was wrong and so finally made it to a gastro, who found nothing at either end, and so did the liver test and sent me on to the liver guy.

I just don't get why it should be taking so long for so many docs to recognize this when all signs are there.It's mind boggling. If it is THE most common blood disease, you would think there would be more general knowledge than there is about it.

[merryBe]

very sorry to here you too are in this mess, my biopsy was 3 samples, but all right quadrant, and my lf quad is worse, so I suspect stage 4 there, the bx read stage 3/4/

you know when it gets to this point vause one of my fantasies is, could I talk my doc into removing my lower ribs to relieve pressure.  such fun.

needle biopsy is risky but so is not knowing.

ALL PAY ATTENTION...when my hepatologist saw my Viral Load, 2.4 mil, he said, oh you may be too focused on your hepatitis (because I asked about trials and teleprivir) but as soon as he saw my bx he said you should treat NOW.

so the only way to get an accurate reaction from docs is to have the most definitive process.
If I read one more "doc said no big deal" I'll scream!!
especially because at any point one can go from stage one to stage 4 in a year even NOT drinking or using.
Unless someone is has anemia or is hemophilia I'd for sure say do a biopsy.
the samples are very slender, but will show whether YOUR body is repairing as fast as the virus is damaging or not. A real picture is worth a thousand images in this case. It may change one day, but this is still what all the literature is pointing to as one person said: still the gold standard.

[susan400]

I am reading a fascinating book that I checked out from the library.  It's a best seller titled, "How Doctors Think", by Jerome Groopman,M.D.  It's excellent.  He goes into all the cases where these doctors screw up and talks about how their thinking in those particular cases either makes or breaks the outcome and he talks about the whole 'thinking outside of the box' issue.  It's very easy reading for lay people, but I've been glued to this book the past few days.  I only get to keep it out for a week, since it's still on the best seller list and those books have to be back in sooner.  But, I'm sure you can also either buy it on line or in a book store.

Susan

[nygirl7]

Different tests for different things.  The ultrasound will tell you if you have any growths but the biopsy will tell you what stage you have.  both are important to have - they just serve different functions completely.

[Willy50]

I don't think there's proof that "ultrasound is useless".  I think you lose people when you make statements like that.  I would agree that it isn't the ideal tool for testing for HCV.... : )  I think the real central idea of your thread is that you didn't receive good work from your doctor.  LFT's, an antibody test or other bloodwork might have served to diagnose you much sooner and at a much lower cost.

Unfortunately some doctors are good; some are only so-so.  I think that's one reason that reading up on boards such as this can hekp us.  We become more discerning customers about our health care.

best,
Willy

[nygirl7]

My doctor made me have both tests.  Unfortunately when the tech told me my ultrasound was "perfect" I MISUNDERSTOOD what that meant and thought i was just fine with no fibrosis. I've seen MANY other people make that same mistake...and refuse the fact that they then needed to followup with a biopsy.

I think doctors need to explain this better - they are different things completely.

[mikesimon]

Your post demonstrates why I advise people to never ask a question of a tech or listen to them or even study their expression when they are administering a test. I once had a tech comment that there might be something wrong with my bile duct. I was crazy for 4 days until my Sister, who is in the field, admonished me never to listen to a tech and to put anything she said out of my mind. I saw my surgeon a few days later and he said that my bile ducts were fine - there was no evidence of anything amiss on any of the tests. That did it for me. I won't even ask the radiologist anything about the biopsy sample aside from whether it is of adequate sample size. I have learned through all of the procedures I have had  - always wait for the expert to tell you what's going on and don't listen to anyone else and if a tech blurts something out simply ignore it completely - even if it sounds good. The trouble with technicians is that they don't know what they don't know - that's why they're techs. Mike

[Myown]

I have several of these stories. I think we all do, but the latest is a tech that told me my liver looks great (Ultra Sound) but then told me I should put myself on a liver transplant list because I might need a transplant in 20 years if I don't clear the virus. Last year he told me my liver looks great and that I should go get tested to see if I still have hepatitus (hepatitis) rather than go thru tx by mistake.  

[Willy50]

I can't remember the percentage (LOL!!) but I've heard that a large percentage of what doctors tell us (or the average patient) during our meetings with them goes in one ear and out the other.  It's not true for all of us but it occurs for a variety of reasons; doctors are in a hurry, use big words, we are in pain, fearful, and perhaps still back on the last sentance trying to decipher what they meant when they are laying some other new bit of info on us that we may also only partially understand.

Even if we had transcripts we still might need clarifications and explanations.  I think if we go in there understanding what they are doing, why, and what the possible outcomes and implications of what they will tell us we have a far better chance of understanding and recalling the info.  I think when we are just so ignorant that they don't have the time to explain it all they just shift to; "just do this, you don't need to understand why."  

We also have some obligation to attempt to learn about our disease, symptoms, and treatments.  They don't have time to tell us everything; that's not their job.  

best,
willy

[Myown]

I agree with everything you said. But even if we have a bit of an understanding - the remembering is still hard. I bring my husband into the room with me for an extra pair of ears but the only thing he knows about hep c is that his wife has it and not to use my toothbush,,,so having him as an extra set of ears doesn't help. My ex holistic doc tells every patient to bring copies of the labs that she has and to also never show up without a tape recorder. I liked that cause I would go home a listen to everything she said and look up stuff on the computer to get a better understanding. The crazy part is that she was the doctor I was seeing when I was trying to figure out why I had some symptoms going on - prior to hep dx. When my liver enzymes came back slighly elevated on 2 occasions she said " well their slightly raised but I don't think its anything to worry about."  I played that part of the tape over and over one day for a little while wishing it were true. Thank God I pressed for the Hep C test.

[jmjm530]

That's nothing. I had tech "bless" me or something after a scan. LOL.

[Willy50]

Myown wrote; " ....well their slightly raised but I don't think its anything to worry about."  I played that part of the tape over and over one day for a little while wishing it were true. Thank God I pressed for the Hep C test. "
-------------------------------------------------------------------------

That same exact thing happened to me.  I was approved for life insurance, but at a higher rate due to elevated liver enzymes.  When I went to the doctor to find out and to get a HCV test they pooh-poohed me but agreed to it even though it wasn't likely.  The only problems was that they then also neglected to tell me about the results.  The CDC called me about 8 months later with the news. : (

I've had mixed results with these doctor types.  : )

By the way..... I seem to have become an amalgam of a few other members.  : )  In another thread today Willing and Willows were confused with one another.  Next possibility is "Willyows"; sounds like a breakfast cereal.

Willy

[Myown]

That's nothing. I had tech "bless" me or something after a scan. LOL.
---------------------------------------------------------------------------------------------------------------------------------
LOL The blessing worked though,,You are SVR!  

[jmjm530]

Boy, did I set myself up for that one :)

[Myown]

LOL sorry for calling you "Willing50."  yeah I'm real good at remembering what the doc said - I can't even remember a members name - sorry.

CDC called you 8 months later - unreal!

We should all write a book.

[Myown]

I like Willowys50 though so I may just call ya that. LOL

[Myown]

I still called you "Willing"  LOL

[mikesimon]

I can beat that. When I bled out the first time my absolute idiot of a doctor diagnosed me as having alcoholic cirrhosis. He didn't even look at my blood work.  All he heard from me was that I drank 4 beers a day. Anyway, the next day this doctor came into my hospital room and asked me and my Father to join hands with him and he began to pray for me. My Father was a doctor and the look he gave me spoke volumes and every word screamed out "we need another doctor now!" I got another one who did read the blood work and diagnosed me as having HCV. I was uninitiated into the world of malpractice before that time but I got educated quickly. So techs aren't the only ones we have to be careful about. Mike

[Myown]

Anyway, the next day this doctor came into my hospital room and asked me and my Father to join hands with him and he began to pray for me.
------------------------------------------------------------------------------------------------------------------------------------
And you are SVR also,,I had the non -praying techs and doctors and I am not SVR..soooooo there.

[Myown]

Boy, did I set myself up for that one :)
-----------------------------------------------
Yes ya sure did. LOL

[Tallahassee]

So interesting...  I remember seeing once in our local newspaper "Tallahassee Democrat" a story about one Family Doctor... the photo was taken in front of her office with framed message on it ... something about "the power of prayer"...  I could not believe my eyes!  If people desire to pray they go to a church, not to a Dr.!

Yes, we need to write a book ... it should be fascinating!!

[mikesimon]

It couldn't have been the 4.5 years of treatment I endured. If prayer was that powerful you'd think I might have cleared just a tad earlier. Amen and Amen! .Mike

[Myown]

Perserverence is all over the bible isn't it? What about Job? I like the way you say Amen. I think you are finding God.

[Myown]

I should have said "patience" not perserverence,,,but both actually fit.

[mikesimon]

You are one to talk with that tiny little treatment you did. Not a lot of perseverance there. Practice what you preach. Mike

[Myown]

I was going to say that about myself, but I wanted to let you say it cause I know how you like to say things like that. I forgive you my son.

[Myown]

I'm using collidal silver now anyhow. Maybe I'll try images or visions or whatever you call it. And maybe yoga too. I heard hep c virons hate yoga. Maybe I'll svr in the middle of a yoga class.

[mikesimon]

Thanks dad. Mike

[Myown]

hardy -har harrrrrrr..