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Avatar universal

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.
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Avatar universal
i m sorry comment was for forum about the bold hep doc. forgive my language just mad.
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Avatar universal
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.
Helpful - 0
408795 tn?1324935675
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
Helpful - 0
439168 tn?1307931740
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
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439168 tn?1307931740
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
Helpful - 0
541844 tn?1244309824
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!!
Helpful - 0
Avatar universal
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
Helpful - 0
408795 tn?1324935675
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
Helpful - 0
541844 tn?1244309824
'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.)
Helpful - 0
408795 tn?1324935675
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
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Avatar universal
As medicmommy's daughter suggested:  I'm going to start with kicking em in the ding ding!  :)
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Avatar universal
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!!!
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Avatar universal
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
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Avatar universal
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.
Helpful - 0
541844 tn?1244309824
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.
Helpful - 0
217229 tn?1192762404
, 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

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Avatar universal
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
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Avatar universal
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.  
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Avatar universal
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.
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408795 tn?1324935675
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    
Helpful - 0
264121 tn?1313029456
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.
Helpful - 0
264121 tn?1313029456
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.
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Avatar universal
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.
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408795 tn?1324935675
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
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