Anyone else?

Has anyone else found that their primary care physician ignored their elevated LFTs and other signs of Hep C?  I've brought up this subject before but today I discovered more information about just how long my doctor has been ignoring my elevated labs.  

After being dx'd with Hep C in April/May 2008, I went on a mission to try to find out more information about my past lab tests since I have had a yearly physical every year for the past 30 years.  I received the oldest records in the mail today.  The first time my LFTs were checked was in 1996 and at that time my AST was 83 and my ALT was 94. My iron was also elevated at 209 (40-180 being normal range) and my WBCs were low at 4.1 (4.3 to 11.3 being normal range).  Not a word was ever mentioned to me and it was totally ignored by the doc.  Elevated labs continued through 2006 when I was finally told that I had some mild elevations but not to worry about it.  This year I was again told I had mild elevations so I insisted on further investigation, my doctor resisted (said any further tests would be "overkill") but I demanded and received.  Yup, Hep C positive.

I know that part of the whole treatment plan for Hep C is to just move forward and not worry about when or how we got Hep C but it's hard to move on when I have this heavy feeling that I did my part to take care of my health while my doctor collected his fee but ignored my labs for the past 12+ years. Granted he didn't cause my Hep C but he sure didn't do his part in diagnosing it.  What's done to me is done but what about the other patient's who are getting the same shoddy care?  This was not some backwoods clinic...this was a top notch clinic (or so it says about itself).

I'm geno 1b with bx of G1/S1 and VL of 30,100.  I had a transfusion as an infant (53.5 yrs ago) and that's my only obvious risk.  I consider myself very fortunate to have some pretty good stats even though I'm not so fortunate to have geno 1b.  

Any opinions out there about whether or not it would do any good to write to this doc to let him know what I now know?  Do you think it would benefit future patients?  Maybe the bigger question is:  Should my elevated labs have alerted any doctor worth a lick?  Keep in mind my medical records clearly stated I do not drink alcohol and I was not on any medications.

Thanks for hearing me vent.

[FlGuy]

I think it depends on the doc.  I've referred to my PCP as 'Doc Referrral' because he takes the position of a traffic director. He and I have talked about it a few times. And, I'm very ok with it.   He's comfortable with 'not knowing it all' and freely admits it.  Being a graduate of the Medical School Of The Tropical Breezes, Caribbean Campus might have something to do with it. It's one of the reasons I prefer younger docs who realize that the medical universe is to big to be a master of it.  One the other hand, I'm dealing with type 2 diabetes and I asked him to treat me rather than going back to an endo doc's factory practice.  I feel that this issue is not so complicated right now and we spend a lot of time talking about approaches and things to do next.  Who knows, I might end up back at the Endo, we'll see.  Depends on what a knowledgeable patient is comfortable with.

[mikesimon]

It's medical malpractice in my opinion. Proving damages might be a problem but I don't think there is any question that he failed in his duty of care.  I don't know what you could write to him that would make any difference. If he doesn't know that elevated liver enzymes merit further testing then he's just incompetent. If he does know that further tests are indicated and he doesn't order them then that borders on criminal or reckless, at best. Unfortunately, what you experienced probably isn't as uncommon as we might think and hope. Nevertheless it's unforgivable and reprehensible. Mike

[FlGuy]

Mike's right, overlooking elevated tests without further follow up is inexcusable

[Texas714]

My dr. did some blood work to check for RA and noticed my elevated levels...and they weren't very high by that time...had more blood work done and that's how I found out I had it.  I think I was pretty lucky or she's pretty good.

[Marcia2202]

Just wanted to tell you my story very briefly. Mid-March I went to my GP because I had been suffering from severe fatigue and forgetfulness for two weeks. He ran a CBC on me and all counts came back normal except an ALT of 133. He had me immediately take more tests for hep b and c. (hep A he had previously vaccinated me for, so he didn't check for that)

I think this is how any doctor should react.

Marcia

[Trish77]

Do doctors belong to any sort of organization such as the AMA where you're able to file a complaint?  I'm thinking if you wrote your doc, he'd ignore it or give you some excuse.  You also might want to go see another doc for a second opinion without telling him about the other guy and see what kind of response you get there.  Now....I'm in Canada and I don't know how easy that is in the U.S.   Just tossing that out there.  What he's done essentially is deprive you of choice over the last 12 years, assuming you've had it since your transfusion, to treat if you wanted to and when it fit for you and potentially risk your life as it could have progressed to much further damage at any time during those years.  As it is, I'd suggest you get a biopsy and see what stage you ARE at.  Not trying to scare you, just suggesting you go the next step if you haven't already and get the whole picture and THEN decide how far you want to take this.  Just some thoughts.

Good luck.

Trish

[meakea]

Thanks for the responses.  It does help to know that others would find it just as upsetting as I do.

Mike, thanks for validating my thoughts.  My goal is to somehow help the next unsuspecting patient -- and I am going to do that...I just don't know how yet.  I do know that it will be a slow process because I'm going to get all my ducks in a row and gradually figure out how I can best do that with this information.  It won't, however, be a lawsuit as I have no interest in that - even if it were easy to prove damages.

Trish, I had a liver bx in May and it was G1/S1 and I had my VL checked a week ago and it is an unbelievable 30,100.  So, I am very fortunate that my stats are as good as they are.  Unfortunately, I'm geno 1B.  I'm hoping to start tx in September because I'm not getting any younger.

I watched the video "Why to Treat Now" or something like that that was posted by Marcia a while back and, according to the doctor in that video, I lost a 15-20% chance at achieving SVR because of losing those 12 years.  I think he mentioned in the video that the older you get, you lose a 1-2% chance per year.  And, not to mention, how many people could I have accidentally infected during those 12 years.

Marcia, thanks for posting that video about treating awhile back.  And, you are correct, that your doctor did it the right way.  That's what I would have expected and that's what I am glad to know does happen to most people.  I hope I'm an isolated case but, as Mike said, it's probably not all that uncommon.  

[mikesimon]

I could tell you a much worse horror story about the treatment I received. Maybe later I will. But, for now just realize that you got very bad care and your doctor is an idiot - at the very best. Mike

[Isobella]

I find this very interesting, because the first time I was told of elevated liver enzymes was 10 years ago.  The doc said it was just a little blip-nothing to worry about.  Even just before my dx, they blew the slight elevation off as being related to generic Voltaren.

I did drink alcohol.  Loved my wine!

Now here I am, all these years later, newly diagnosed this past January. Geno 1a.  I feel very fortunate that I am stage 1 grade 0.  On one hand, I wish I knew earlier and could have treated, but on the other hand, if I had been diagnosed then, I would not have been able to get my life insurance or my current health insurance.

But it does stink that there is little followup on elevated liver enzymes.  Goes right along with the practice of routinely testing for Hep A and B, but not C.  Why?  Is it because it is a "silent killer"  a slow moving animal??? Or do "they" know it ruins our insurability???

I don't know...but I do know that I will never be younger or healthier than I am right now, so I am looking forward to starting tx as soon as possible.

I wish you the best with your tx!

Isobella

[jdwithhcv]

Like you, I did some reading in my old medical records and was shocked to learn how long I had elevated liver enzymes (since 1979!!!).  Not only did my PCP not address that issue, he subsequently prescribed 2 extremely liver toxic antifungal drugs without doing any of the recommended monitoring of my liver enzymes.  I owe my life to my cancer surgeon who saw something alarming on an abdominal CT scan and alerted me to scarring on my liver.

Needless to say, I found a new PCP right away.

jd

[R Glass]

I had a mild Heart Attack (What ever the Hell That Means” about 6 years ago. They patched me with stints. I went in for Blood work every 6 months. I was told every time my Liver Enzymes were elevated. I thought, no big deal. I didn’t know what HCV was. He didn’t have me tested until they were extremely high (about 1.5 years ago). I couldn’t believe out of the gallons of blood that was taken, no one bothered to have me tested for Hepatitis.

[jdwithhcv]

As my new PCP says of the specialist, for many of them the "ist" is silent.

[meki]

""Any opinions out there about whether or not it would do any good to write to this doc to let him know what I now know?  Do you think it would benefit future patients?  Maybe the bigger question is:  Should my elevated labs have alerted any doctor worth a lick?  Keep in mind my medical records clearly stated I do not drink alcohol and I was not on any medications."""



Isobella and jd --- and Everyone..

All of you know I went about 10 years with just "slightly" elevated ALTs ASTs....

I don't know that you can actually blame a doctor --- I mean come on.

He/She just prescribed medication for something or other because I was sick. So most things CAN raise the ALT/ASTs

So since they weren't astronomically high - they were ignored.

HOWEVER --- someone NEW coming in noticed them.

Doctors are only human folks with a lot more knowledge about SPECIFIC things.

They see people EVERY day with thousands of things wrong with them...

For them to be able to find ONE THING -- with ONE PERSON --- is often difficult.

You cannot blame them

Personally - I wish --- that there was a mandatory blood test yearly for everyone... to find all the KNOWN diseases...

If they could develop more disease locators --- then there would be more people who would know they were sick sooner.

Anyhow - love ya all.

Meki

[meakea]

I find all of your stories quite interesting and I truly appreciate you all sharing your stories.  What do you think it will take to get Hep C declared a routine test?  If the true number of Hep C positive people were known (instead of their estimates), maybe it would do something to add funding for research for better tx.

Interesting questions by Isobella:  "Is it because it is a "silent killer"  a slow moving animal??? Or do "they" know it ruins our insurability???"   Isobella, personally, I feel there might be a lot of truth to the fear of insurability thing but then, again, I don't know if the docs really care about our insurability.  I do know that my first GI doc cautioned me about having my adult sons tested because he said: "If the insurance companies get a whiff of this, it might not be good."  Of course, I'm not taking that advice and I am instructing my sons to GET TESTED!

[meakea]

Meki, I appreciate what you're saying, I do.  I guess what it boils down to for me is that I know that my doctor sees a lot of patients that have a lot of things wrong with them but when he sees ME I expect that his total attention is on me when he is being paid for his time spent with me.  When he knew that I had had a transfusion, my LFTs were elevated, my iron was high and my WBCs were low...and he still ignored it all?  I will not go back to him.

Routine testing for Hep C would solve a lot.

[R Glass]

I’m sorry but, I don’t buy it.
After so much blood work was done and the enzymes were always “slightly elevated”, at what point does the flag go up and they find out why?
When we go to the Doctor, we trust them to do their job. If we cannot trust them, then why bother going to see them at all?
If I build a building and it is “shoddy work,” I cannot use the excuse “I am only Human,” I am held accountable
So yes. I do blame them.

[sierranvgrl]

I can totally relate to your experience. I was having some heart problems and ended up in the hospital in late Jan My ALT/AST's were 410/249  and my primary care doctor NEVER even mentioned it. I got a referral to a cardiologist (I had just turned 39 and could not control my BP ) and found out that I had several rounds of lab work with elevated liver enzymes that were continuing to escalate. Not only that, but my doc released me from the hospital with no referral, no  change in meds, no idea what was wrong, and my BP was 189/127. My cardiologist got me into a GI doctor within 3 days and HCV type 1a was confirmed in mid April and I started TX Monday. I don't mind that my doctor didn't know what the diagnosis was, I DO mind that he never mentioned it to me at all. Well, that is not true. Once his office received the request for my medical records from my new PCP, they called and wanted to me to come in.  I am thankful that my cardiologist was insistent on me finding out what was wrong. I am still trying to get my lab work from a surgery in spring 07 and a hospital visit in Jan 07. My guess is that they were elevated then, but I can't say for sure. It is certainly frustrating. I am just grateful that one of my doctors got me on the right path and that this didn't continue to go on undiagnosed any longer.  

I am learning to be aggressive about my health care now and will get copies of everything. I am paying and arm and a leg for medical care and I will change doctor's in a heartbeat of they ignore my concerns. It was a hard lesson, but I am glad I learned it!  Take care and good luck with TX.

[fretboard]

I would write to your insurance carrier or maybe the Medical Board of the State that you live in.  It seems to me that quite a few ppl find out that they have HepC way too late, when all it would have taken would have been the correct blood test to find out in the first place.  Maybe doctors are encouraged by the upper echelons to dissuade tx or further blood tests to save on expenses.  Yes, maybe not a conspiracy or anything of that magnitude, but surely something has to be going on that isn't above board.  I found that even when I had already been diagnosed as HepC positive I was encouraged to put off tx.  The truth is I was still under the influence of toxins that I shouldn't have been using, so I couldn't have gone thru tx under those circumstances anyway.  I have an appointment next week to get a starting date, hopefully.  My GI seems to be on my side now that he knows I'm serious about going thru tx.  I didn't clean myself up until after I became toxic at the end of 2002.  My case doesn't matter and isn't a good example as far as finding doctors who wanted to tx me at a time when I couldn't be responsible.  With that said I have run across ppl who have said that their doctors told them to wait until they were a stage 3 b/c the tx was so rough.  That's just ridiculous, even doctors can't tell in advance how bad the sx's are gonna be for just an average person with average health stats.  Personally I didn't have a problem with being diagnosed, but I'm sure there are thousands who do.  Good luck with your tx plans.  God Bless      

[motheroffour]

Unfortunately I think if a patient is otherwise healthy and active, does not have a history of alcohol abuse or IV drug use and is asymptomatic for anything else some docter's might just not worry about a slight elevation in the numbers.  My husbands numbers elevated  ever so slightly 2x over the course of  twenty years and then returned to normal on a recheck.  His Hep C was not diagnosed for many, many years and by then his liver was quite damaged.  I think many docters are much more aware today of the damage that Hep C can do than they were even 5 years ago.  Remember 20 years ago it didn't even have a name and docters thought it wasn't a "big deal".

[fretboard]

Meakea had a transfusion so you would think that his doctor would have tested him especially with the elevated bloods.  The whole point of this thread is that doctors need to be proactive instead of not worrying just because the person never had a problem with drugs or alcohol.  I just feel that primary care physicians need to get on the stick when it comes to the possibility of someone having HepC.  If your blood levels are elevated, maybe they should just run the tests.  I think alot of it has to do with the whole stigma involved with someone having HepC and purely incompetent doctors.  God Bless  

[DB 0]

I didn't have a physical or checkup with blood work for about 30 yrs.So 3 yrs ago at 53 yrs old I went to the VA and had a physical.A primary care giver type nurse was in charge and said every thing was fine.Went back for another physical over a yr later,had a real doc this time.He looked at my blood work from the first one and asked if I had hep.My ALT/ASTs were elevated.I said no way.He ran the test and called me a week later,you have hepc.I haven't seen or talked to him since.I am going in for my 6 month pcr next month,und at 3 months.When I go in I plan on getting an app.for a physical,I plan on thanking him PROFUSELY for possibly saving my life.

[Kristina538]

It must be all a horrible shock to you at the moment and you're justified in feeling badly done by.  I was dx in 1993 and since my first tx, started taking copies of all bloods and trying to note which ones I should watch for (bilirubin, albumen, alk phos, alt/ast).  My Dr found I was Vit D deficient and Vit B12 deficient about 5 years ago but told me it wasn't liver related;  if he had explained that it could have been I may have pushed to get on tx earlier.  However, I have a wonderful new PCP now whose young and 'LISTENS' to me :-).  
I note that you said "think how many people I may have infected in that time".  Please try not to worry; it's not an easy disease to pass on and if it's any consolation,  2 ex-boyfriends (pre-diagnosis) of mine were tested and came back all clear. The last survey I read of 13 HVC positive people whose partners had a mean average of 144 years living together, there were only 2 partners that were positive for HVC, both of whom had a history of unsafe drug usage.  There was much more panic about transmission in 1993 than now.  
Good luck with you tx - onwards and forwards; I'm glad your damage is reasonably minimal at this point.  Insurance has been one of my annoyances since dx also, and I chose not to share, but also not to bother with mortgage life insurance etc.  Having borrowed against my house a couple of times for renovations I'm pleased;  I've also managed without health insurance but have some automatic health insurance through my job.   I do wish however, I had got personal health insurance and declared, as I've had a number of other things that could have been paid for that weren't related to my hep!!!!    I share when necessary (dentists,dr's etc) and these days it's a lot easier as more professionals are 'in the know'.

[meakea]

I've read all of your posts with great interest and it's sad to know there have been so many similar situations.  I does, however, give me incentive to continue to use my information to try to change the way the docs around here are ignoring signs of Hep C. I think my new GI doc or his nurse assistant might give me some suggestions or help with this.

I wish you all well and thank you all so much for sharing your stories with me.  I continue to pray for a better and faster tx for Hep C...sooner rather than later!

[Isobella]

I not placing blame with the doctors.  I just find it interesting that sometimes something so seemingly  benign -my doctor referred to my slightly elevated enzymes as a "blip"-is sometimes much larger.

Who knew.  Or maybe I misunderstood what the word blip meant.  To him it meant "follow up immediately with a hepatologist!!!!"  To me it meant nothing to worry about!  :-)

Bottom line, I feel fortunate to now know.  I feel fortunate to be able to tx and clear (said with hopeful confidence) while I am still youngish and otherwise healthy.

I also had my daughter tested.  Regardless of the insurance issue.  I admit I am paranoid about that having worked in the industry for years.  Thank goodness we purchased her life insurance when she was an infant!

Best to all in the journey to SVR!!

Izzy

[mikesimon]

I really wasn't suggesting that you file a law suit. I was merely characterizing your doctor's behavior.
I am in disbelief that some members don't find blame with your doctor. That stuns me.
You said: "The first time my LFTs were checked was in 1996 and at that time my AST was 83 and my ALT was 94."
To put it in perspective I believe that, if these values had shown up on a blood test prerequisite to the issuance of "whole life" insurance policy on you, the insurance company would have declined to insure you. The people who bet on this stuff would have seen something wrong here and your doctor definitely should have too.
Mike

[meakea]

It's all good, Mike...I knew you weren't really suggesting such.  I'm with your way of thinking when it comes to doc should have seen something wrong...it's what we pay them to do.  It's one of the reasons I went for a yearly physical...to have peace of mind that my doc had an opportunity every year to make sure I was well...not for him to take expensive tests and then just stick the results in my file.  If he wasn't going to take the results seriously he could have saved me and my insurance company a lot of money by just not ordering the blood tests.

I'm feeling much better after a lot of very interesting responses.  Misery loves company???, not really, but knowing people understand my feelings helps tremendously.

[pigeonca]

Over the years, my insurance agent has tried to get cheaper life insurance for me, and every time I've been declined.  Since I was pre-diabetic for years (now I am full-fledged diabetic), I figured that the physical exams the insurance companies gave me showed high blood sugar, hence the rejections.

After I was diagnosed with hcv, I asked my agent if insurance companies tested for that.  He said yes.  So why didn't they tell me?  He said they were not obliged to unless I asked why I was turned down.  I hadn't asked because I just assumed it was the pre-diabetes.  

First of all, I think everybody should be tested for hcv, along with their tests for blood sugar, cholesterol, etc.  And insurance companies should be required to report the reason for turning down potential customers.  After all, they have this information; shouldn't we get it as a matter of routine?

By the time my ALT went up, I had had hep c for long enough that I was at Stage 2, Grade 2.  In other words, the liver damage had been going on for years.  The doctor should have known, and the insurance companies did know but didn't tell me.  There ought to be a law.

[jdwithhcv]

Yes, I CAN blame my doctor.  In 1992 he prescribed Lamasil and Sporanox for me without doing any liver function tests.  The manufacturers of both those drugs state very clearly that liver function tests are necessary before prescribing these drugs, and that it is necessary to monitor those levels throughout the course of treatment.  My doctor also had my lab results from prior bloodwork (from 1979 on) showing elevated liver enzymes.  If he had done his job properly I could have sought treatment for Hep C long before I got to stage 2/3.  

So I can blame my doctor, and I do.

jd

[meakea]

pigeonca:

Wow...I'm appalled that the insurance company knew and didn't tell YOU.  "They aren't obliged to tell unless asked..."  That's just...(fill in the blank because I'm speechless)...!

jdwithhcv:  

The blame to your doctor is well-placed.

[fretboard]

My doctor won't prescribe me Lamisil at all, for the reason of being HepC positive.  I guess some doctors just don't know any better and that's a shame.  On a different note, if insurance companies decline potential customers b/c they could be HepC positive or have high ALT and AST levels then maybe they should be legally told to pass that information over the the potential customer's doctor.  If an insurance company denies someone for being HepC positive don't they have to provide that information to CDC and the State's Public healthcare system, just like doctors are required to do?  Maybe there should be some legislation done to make sure there's not a broken link in the system.  I don't know if there are safeguards in place currently or not.  It seems to me that if doctors and insurance companies aren't willing to test everyone who has questionable blood levels.  Then maybe they (doctors) should look at their link to CDC and maybe if that patient had ever been denied insurance then maybe they need further testing or tx.  Just a thought and there may already be something in place, I don't know.  later  

[meakea]

I just got to thinking...do you suppose the life ins company has some sort of an agreement with health ins companies NOT to tell people (unless asked) in order to save the health ins companies tons of money by keeping you off tx?

[DB 0]

Studies show that vietnam era vets have a 5 xs higher rate of hepc than the regular pop.
is the motto for vets with hepc.Is the VA waiting till the problem just  fades with time?

[fretboard]

If an insurance company denies someone for being HepC positive, don't they have to provide that information to the CDC and the State's Public healthcare system just like doctors are required to do?  Anyone?

[meakea]

Good point!  The local health dept knew about my Hep C and called me within days of my dx.  Why wouldn't life insurance companies be bound by the same standards concerning infectious diseases?

[GSDgirl]

My GP ran a hep panel 9 years ago (I didn't pay attention to what blood work was performed)  It was positive for hep C but he didn't tell me.  My liver enzymes were elevated always for the last 8 years but I did drink (too much) He should have told me but I also should have paid attention and asked,  So is it my fault or his that I didn't know for so long?

Denise

[meakea]

No question:  HIS FAULT!

[fretboard]

His fault, if you ask me that's just another way that doctors avoid txing somebody.  If they don't tell you then you're not gonna as for tx.  There may not be a conspiracy not to tx HepC patients, but there is certainly a hidden agenda on somebody's part.  Whether or not it's intentional we may never know.  Glad you made the SVR list GSD.  God Bless

[virgocharm]

i think most doctors are just ignorant of the readings. because this is new since late 1990s when it hit the fan. just like with us.  but still and all,, they have had enough time to go back to school,sort -of-say. they get paid by us,we have faith in them to take care of us.

[alagirl]

FlGuy - "Doc Referral" - you crack me up sometimes. ;)

I tell all my doctors my philosophy on doctors at the first appt just to make sure they have a sense of humor.  But it also clearly advises them of my expectations for my care.  My philosophy is that doctors are highly skilled, high priced contract labor.  But I tell them they should be flattered since I chose them out of all the other docs out there.

Seriously though, I am always amazed that people let doctors treat them in degrading ways.  If your doctor won't do tests for you and won't refer you owe it to yourself and your health and to your family to get one who will do the job.  Be insistent, but most importantly don't stay with a doctor, especially as your primary, unless he honestly seems to be invested in your health.  

I don't think its ok at all for docs to ignore your labs, but they do it.  On some of the older dates - I was just trying to think.  Hep C wasn't even tested for in the blood supply until 1992 so I wonder if doctors were as cognizant of it before that time?  I'm not sure as I didn't ever worry about it until the last year or so and my enzymes were always very very low prior to getting the acute infection.  It does underscore the importance though of getting a copy of all of your labs, testing, x-rays, and keeping them central with you so that you can have a good life medical record and also so that if you see something they missed you can ask about it sooner rather than later.

None of that excuses bad doctoring of course, but it just seems like you have to be so proactive.  I do think they are responsible to see the obvious things with all of their patients or you wouldn't waste the time and money seeing them in the first place.  

They should test everyone with elevated enzymes and everyone with RA these days for hepc in my opinion.  In fact, I wish they would extend that to kidney issues and some of the other ai issues.  It kind of ***** that consumers have to turn themselves into experts in all of these different areas of life because some of the experts won't do their jobs.

[alagirl]

If he didn't document in your chart that he told you it came back positive that could be actionable legally in my opinion.  I mean hell, why get the test done in the first place?  I'd get a copy of your entire chart to see what he says about that in there before deciding what to do with him.

I really think there are a lot of good talented people out there in medicine, but you have to work a little to find them sometimes.  Insofar as doctors and medical staff though I have to say my entire hep thing with very very few exceptions was handled with a lot of care and consideration by a huge number of medical staff since I was hospitalized so much and went to the ER so much and had so many different types of tx related specialists and procedures.  I ran into one bad doc when I had my port put in -he gave me a big scar and made me cry while I was under the twilight anesthesia, so I switched him out for a better one.  But mostly, I have to say they went out of their way.  They even gave me blood in the ER locally once so I wouldn't have to transfer to Huntsville that night.  

I have noticed that over the years the more I personally know about the medical situation I am seeing the doctor for, the better my care is.  Usually when I see the doctor I already know what's wrong with me, I'm just requesting a fix of some type and I'm asking the doctor for confirmation and for advice on how to fix it, etc.  I think that probably has helped me receive better care than say, twenty years ago when I would go in and just say I feel bad, or I hurt here and here, or, I have terrible fatigue.  It kind of helps focus my doctors a little more.

[fretboard]

You've brought up some good points, unfortunately for you you have had to educate yourself about various other conditions besides HepC.  With that said quite a few ppl have no reason to think they are in incompetent hands until they've already gone to a dangerous levels in stage and grade of their HepC.  The CDC should have known from the Aids epidemic that had just happened years prior to HepC and they should have learned from that.  The AMA should have also done something to educate PCP's.  The Medical Board's which oversee's the State's medical quality assurance program and licenses doctors could have done something as well.  Heck someone could have passed legislation to make sure that all doctors had at least taken a continuing education course which would have at least given them (PCP's) a realistic view of the many ways that patients can contract the HepC virus and how to tx it.  Instead of the view that it's a drug addicts disease.  It would be super if everyone had a personable relationship with their doctors, however with the many "cattle call" type of medical care establishments not everyone has the opportunity to become personable with only one doctor.  There appears to be at least a couple of elements missing and I don't think it's really a lack of any one person not pushing for better healthcare for themselves, although I know this happens.  Sure that's one ingredient which should be included in seeing a doctor, but I think the bigger picture in need is a complete overhaul in the way HepC is reported and comunicated to the various doctors and agencies involved.  The lack of insurance company's to educate their doctors about this HepC situation is shameful.  I read alot of the newsletters that are distributed thru Blue Card insurance about diabetes, heart conditions, cholesterol etc.  I haven't seen one word written  about HepC.  You think it's because of the stigma, I know what I think.  God Bless    

[meNtoby]

I was first more freaked out over my pancreas and possible pancreas cancer when I heard elevated liver enzymes this May.  THAT is exactly how they find that unknown creeper as well. Thankfully, with my mom, they immediately checked her out when she had elevated enzymes and caught her cancer early. Unfortunately, pancreas cancer is still very difficult to cure, and she passed away from it. But I had an entire year with her that I WOULD NOT HAVE HAD if her doctors had blown it off.

Proactive is a word that cannot be stressed enough when it comes to each one of us, and our health.  I can hardly believe friends who will let an obvious tumor, or symptom of something serious go on and on, either because of fear, or ignorance.  I used to tell the doctor my symptoms and hope for the best. Unfortunately, it took them 8 years to properly diagnose me in the 80's and start operating, but that was before the internet, or I would have found it myself.

I'm with alagirl, you have to keep the doctors on their toes these days, and ask intelligent questions so they know their SOP will be scrutinized, at least!  And hey, DBo, yes, I think the VA is waiting until the problem DIES with time.  Too many vets are not being told about their stats as well, can you imagine?

Enough ranting, just had to vent too, sorry,
C.

[meakea]

There has been an ad in our local newspaper over the course of the past few months that is directed to Vietnam era vets...it tells of the high percentage of Hep C amongst them and advises them to get tested.  It's a very positive sign that someone is trying to get the word out...it's not enough but it's a start and I was pleased to see it.

My own brother is a Vietnam vet and he has never been tested...even with the recent knowledge that he grew up with me most likely having Hep C during those years.   I told him of the ad suggesting that Vietnam vets get tested and I think he'll do it at his next yearly physical.  

[mdhatton]

Atleast I know I am not the only one that feels like they have a meat market crew called Dr.'s.  They take tests for the $ then forget you. NEXT.
I have a 13 yr. olsd that they did test on 7-9-08 and the lab called the DR. according to chart 30 min after we left because it was a stat. I still have not heard from the Dr.
I left 4 messages. A nurse and Resident called me and told me the Dr. would call me that Evening. That was Fri.  The Dr. emailed me and told me he would call me that evening. It is Sunday and still have heard nothing. I accidentally got the results when I went to get his chart Thurs. but I am afraid to speculate to much because he is very sick right now. I do know the AMMONIA Level got upto 71 during his test. Normal is no more than 33.
I do not know what to do but wait until tomorrow.
I asked my son about E.R. but he knows as well as I do that they are a joke.
One time I took him to the E.R. and at that time he could not walk and had a severe Migrain. The nurse asked him what he thought they could help him with they were just the EMERGENCY ROOM. After that unless he thinks he can take no more he will not budge to the E.R.
My post is the on that says ADVICE. I would appreciate anyone that would read it that might have an idea.
Thanks
mdhatton

[meki]

, Jul 12, 2008 09:38PM
My GP ran a hep panel 9 years ago (I didn't pay attention to what blood work was performed)  It was positive for hep C but he didn't tell me.  My liver enzymes were elevated always for the last 8 years but I did drink (too much) He should have told me but I also should have paid attention and asked,  So is it my fault or his that I didn't know for so long?

Denise "


HOLY COW!!!

Are you freaking serious?

That would be a lawsuit in my hands.

Nothing personal - but that's cha-ching right there.

Not telling you? What the heck?

OMG --- go get yourself an attorney right the heck now.

If you can prove it --- you have a weighty case on your hands.

But still folks - I stand by my original.

Docs are human. There are A BILLION diseases out there - if not more.

How can they be so specific as to Hepatitis C is definetely the problem?

Fatigue --- how do you find it?
Anemia - how do you find it?
Aches and Pains - how do you find them?


The only reason we are so aware of it -- well -- it's because we're HCV people...

We have it --- so we have LEARNED ABOUT IT.

But there are so many other things(diseases) that we can have that have the same symptoms....

So many of those things that can be chalked up to "STRESS"... To working too many hours... To being too "unhealthy" in this day and age of McDonalds.

It's hard to be perfect...

I agree that HCV testing should be done consistently with everyone.

But it took ME getting HCV to realize that.

Doctors are NOT Gods..

They are just like you and me...

Some of them get lucky - and they can "sense" what is wrong with you.

Some of them are just awful --- and can't hit a cold on the nose.

But they ARE human.

(However - Denise -- your doctor is NOT human --- he's a moron.)

Hugs to all of you.

Meki

[springfever]

I discovered I had hep c by reading my own file while waiting for the doc in the exam room.  I was left alone in the room with my file, by his partner.  I looked for test results done a couple of months before and saw positive for hepatitis c.  I thought 'hmm' cause I had no idea what it was.  Googled it at home and have been in a state of shock since.  

I heard and read that many people are not refered to specialists by their primary care physicians.  Dr. Dieterich mentioned the stats in the video.  I think it was about 40%.  Don't recall for sure.  He didn't say if patients were informed or not, just said not referred to specialists.

It's interesting to me that people in this thread with elevated enzymes went untested for hep c for years.  My doctor tested for it because of my elevated enzymes, but then kept the results to himself.  Could it be that some doctors don't want to know, so they will not be obligated to reveal??

I'll never know for sure, but in my mind, I think my GP withheld the information on purpose.  He had been my doctor for 20 years and I have it in my head that he was being protective of me.  I wish he could be frank, but I know that could never happen for fear of law suit.  Or, maybe it was simply a clerical error.

But despite the life altering dx of hep c, it is our right to know so we can make our own decisions.  Decisions that would be so much easier if we could just cut through the carp, have all the info on the table, and not worry about doctor's motivations...specialists and all.

[Wilko1956]

Girl; I just got diagnosed and the tons of dumb ***, good for nothing Doctors, have told me the same thing for twenty plus years. "You have elevated liver levels...no big deal...it must be the meds." they would say to me. Full check ups and yearly testing is the only way to find out where you are health wise. I was diagnosed recently by a clinic run by students three blocks from my house. It is a University program run by Doctors to train students. So those top notch high paid jerks really didn’t have a clue, didn’t care, or both/ Mind you in this day and age you need to know everything about your personal heath because you can't trust Doctors. So my suggestions to one and all is make a file of all your records, scan them and save them as attachments on a paid email in case of loss by fire, flood, etc. Also teach your family members to do the same. For me it's too late. Whatever road I take medically from now on will not change the damage to my liver.

[medicmommy]

I haven't read all the wonderful responses to your post, but to add my response to your question...(as my daughter would say),the blow-off just makes you want to "kick them in the ding-ding!" I too have had the experience, and ended up switching Drs because I knew I was sick, and couldn't get the message across that something was wrong!  -A good thing I did...The hep C was small potatoes compared to what was going on at the time..Stick to your guns sister!  It can be frustrating, but you are the best advocate for you! (((((((((((((((((((((((HUGZ)))))))))))))))))))))                                    ~Melinda

[meakea]

After reading the many responses, it's obvious I am not the only one...in fact, there are far too many of you who have a similar story and even worse stories than mine.

Isobella, jdwithhcv, R Glass, pigeonca, GSDgirl, springfever, Wilko1956, medicmommy, to name a few:  I'm sorry for the experiences you had.

GSD girl...and to think your doc knew and didn't tell you...shameful.

Pigeonca...and to think your life ins company knew and didn't tell you...also shameful.

Thanks for sharing your stories.  I still believe there is something I can do, at least locally, to wake up the system.  I'm working on it.

And last, but NOT LEAST:

DB 0:  Thank you for your service to our country!!!

[meakea]

As medicmommy's daughter suggested:  I'm going to start with kicking em in the ding ding!  :)

[fretboard]

That's a messed up story you have there, I don't see how he was being protective of you, but it happened to you and you have your reasons to believe that.  If I had a story like that to tell, I would get copies of my medical records and get his a$$ in trouble.  That's health information which could lead to death if not taken care of, even if it's a death from liver cancer, it all starts with the HepC.  Some ppl take a ho-hum attitude about the whole subject and say it's up to the patient to be proactive.  Although that's true to an extent, what about a case like yours?  Maybe he was being protective of you, in my mind it's highly unethical to withold such information.  It's like a big circle these stories keep taken me into, conspiracy or hidden agenda?  Either way ppl with HepC are getting the sh!t end of the stick.  And as being one with HepC, it really infuriates me.  God Bless

[springfever]

'messed up' is right.

I really shouldn't second guess other people's motivations.  I'm usually wrong.  And I can concoct some whollopaloser conspiracy stories....  But, I'm usually wrong.

I looked at Dr. D's video again and saw that 51% of people diagnosed are not referred to a specialist by their primary care doc.  He said those doctors either don't understand the significance of the disease or don't know that it can be treated successfully.

So whether the info is withheld or just downplayed, most doctors don't send us on for treatment, my ex-doc included.

I won't be kickin ssa over it, now.  It's not my nature and my energy is directed toward learning more and taking care of myself.  I think with our increasing numbers, this trend will end soon.

Also interesting that only 10% of those diagnosed actually get treated.  (Hep C is forcing me to do math against my will.)

[fretboard]

Can you or anyone else direct me to that video, whatever the reason is for doctors neglecting to refer out to a specialist is a huge problem.  Maybe I'm wrong to think that its a cost cutting measure altogether, hidden agenda, conspiracy.  Yeah anyone send me the link to that video as I really need to watch it, I'm starting to doze off right now so I'll have to tune in tomorrow.  Good luck with your pursuit towards SVR.  later

[meakea]

I believe this is the video Springfever referred to.  It's the one I referred to earlier in this thread...so I assume it's the same one:

http://www.mssmtv.org/player_alf/player.php?id=alf_2007_01

[springfever]

http://www.mssmtv.org/player_alf/player.php?id=alf_2007_01

Marcia2202 told me about this video.  Loaded with information.  
I would entertain all theories about why docs don't refer out.  But, pursuing the money trail is probably gonna get you closer to the truth.

Thanks for the SVR heads up, but I'm not actively pursuing it...yet.  With geno 1a and other things, my odds suck.

Good luck to you!!

[AshleyBaker]

Hi. I wasn't diagnosed with HCV, but I have hepatitis, nonviral. I have a family member + for HCV. There is a member here that I was talking to at the recent FL lunch in and we were talking about how our doctors blew us off when we were symptomatic. My experience with my "top notch" hospital was horrible. They too ignored me. My liver enzymes have been elevated for the past 5 years. This same facility denied I had gallbladder problems and not to worry about my hepatitis symptoms. I was furious and fired them. I went to a new GI specialist who referred me to an out of network surgeon. My gallbladder surgery was emergent and it was found to be full of sludge and very congested. A liver bx was done and found to have portal inflammation and fibrosis.

The "top notch" in network hospital was wrong about my gallbladder as well as my liver. God works in mysterious ways. We are currently trying to figure out if it's autoimmune hepatitis since I have an active primary autoimmune disease process or fatty liver since I was overweight (more than now and currently loosing). So more testing. Works for me.

If you're gut tells you that the doctor you're seeing isn't right, GO to someone else and get a 2nd opinion. I did and I think it saved my life.

Hepatitis is NOT something to blow off no matter how much of an elevation you have.

Best wishes,

Ash

[AshleyBaker]

So since doctor's are only human and can make errors...or misjudgements, does that mean that I should just settle with being blown off? I'm not blaming anyone. I work as a liver transplant nurse and I have come across a lot of "baby" docs (in training) as well as a lot of not-so-good docs. Yes, docs make mistakes and misjudgements all the time. That doesn't mean that someone should settle for just one opinion. Not ALL doctors know everything.

I have a very rare autoimmune disease called Sjogren's Syndrome. One doctor who I changed from says it's nothing other than some of the meds I'm on. Had I not known any better, I would have believed him. But I know better since all my autoimmune markers are positive and elevated.

I think the point here is that people have a right to a second opinion. The medical community is congested with more and more sick people. There are not enough doctors, nurses, and other medical professionals to keep up with the growing population...and remember, the baby boomers are retiring now and are all at the age where they need more medical care, so we are seeing a surge in people who need medical care.

With that said, because the doctors are overworked with more patients, more than likely not only are mistakes going to happen, but things will be overlooked. I see it all the time. And not all doctors know everything there is to know about a particular disease process. Believe it or not, a lot of doctors are clueless about HCV.

Like I said in another post, if your gut says go elsewhere, GO. It's your life, live it to the fullest.  ;-)

Ash

[fretboard]

I just watched that movie, a special TY to Marcia as well.  Everyone who hasn't watched that movie should, especially if you haven't gone thru tx yet.  It's very informative on why you should tx now and not put it off.  I won't go on and on about it, but I think it is by far  the best that I've ever seen and it should be required for all doctors to watch before renewing their license.  Like a continuing education course.  I'm serious about that, with all the information that Dr. Dietrich gave in his presentation everyone can learn something new.  later

   http://www.mssmtv.org/player_alf/player.php?id=alf_2007_01

[virgocharm]

i remember when i found out i had hep by my primary doc. she referred me to this bigtime henry ford hospital. dr. will not say name. will say it was a woman. she had the nerve to ask me what i was doing there for. i said for a consultation.her dumb but, ask me that, after i told her my doc sent me. i knew then i might have a problem. i was positive. so she sat me down, pulled my charts, told me what i already knew. took blood again,waited few weeks for results, and to find out genotype. nothing came in the mail.,mind you, she was using all those big time words. did nt break shyt down. dtill waitin. finally i called, i guess it was the nurse, or secretary, gave me my genotype. thats all. did nt get no lab reports or nothing. i m like , i dont like this hep doc. ok , she called me back in, saying something bout, they did nt draw enough blood, had to do it over again. 5 tubes . i did. still did nt get no results in mail.  my question is, how she gonna give me a genotype, if i had to do it over again beforehand. i wasnt satisfied with her. so i said ,i would wait and find someone else.. that hospital,is the only hospital that takes my insurance. it has other hep docs. so my primary doc insists that i go back. o k, i call and make an appt. i tell secretary i want a different hep doc. she saids i have to see same one. told her i am not satisfied with her. she says write down questions i have, and ask to see whos over her. can you believe that. i still dont want her.

[virgocharm]

i m sorry comment was for forum about the bold hep doc. forgive my language just mad.