How to Find a Good Doctor

I am trying my best to stay with the doctor now seeing me for HepC. Will put aside his arrogance and "greater than thou" opinions of himself, but as of yesterday the lab that did my PCR testing indicated the doctor's office had these results since Feb. 27. When I saw doctor March 5, he said he did not have. Called lab and they faxed over to doctor again, but still haven't heard from office, no return phone call. I realize he's got a busy practice (according to his words), but I'm getting frustrated.   How does one go about getting a referral to a doctor specializing in this disease.  Perhaps I should know, but I'm at a loss right now on what to do, which way to go. I really would like to know if my viral load has come down.  also doctor said my WBC was not too low.  It showed on lab work to be 2.7.  Lab says the range is 3.8 to 10.8.....so is 2.7 too low?

[jmjm530]

Keep calling the office and ask to speak to the nurse. If they only take your message, keep calling back. Be nice but persistent. If that doesn't work, be not so nice but persistent. Tell them you want to speak to the doc and/or know your blood test results right away. Tell them to fax it to you, or better yet, tell them you're coming in to pick it up. In any event, you should always get your ownh copies of all labs and reports. Where do you live? Maybe someone here knows a good liver specialist (hepatologist) in the area.

FWIW, the results haven't been in your doctor's  office all that long. Most of the time, I had my results faxed directly to me from the lab and got them before my doctor did. Often amused myself in the office having them scurry around for the results when I had them in my back pocket. Occasionally, they would say the results weren't in yet and then I'd tell them that mine were faxed this morning and they should call the lab for their copy. Moral of story -- always a good idea to track your blood results with the lab first. WBC 2.7 is fine.

Be well,

-- Jim

[Kalio1]

If it was me, I'd just ask the doctor's office for a referral for a "second opinion" to a Heptologist. Or, you can look into all the Heptologists in your area and check their credentials and then ask the new arrogant doc for a referral to the one you choose. You might want to check with your ins. company to see which docs are covered for you.

Sorry about the doctor snafu. That must be really hard to deal with while on treatment. Very bad form for that doctor to just up and disappear on his patients, Im curios as to what the REAL story is there.

As to your records, maybe the doc you were seeing took off with them? The whole thing seems strange to me, the last thing you need on tx! Hope it works our soon.

[jmjm530]

Forgot you were the lady whose doctor "bailed" out. I thought you and your husband planned on just showing up at the doctor's office today and getting to the bottom of the matter. I thought that was a good idea, but maybe I'm mixing you up with someone else.

-- JIm

[Lilla]

yes, I am the one who showed up at doc office with my husband and conveyed our concern over first doctor vanishing etc.   I just got my HCV RNA result faxed to me by doctor office.  Can you interpret, as doctor's office has not, only a copy of results.
Prior to Tx HCV RNA Quantitative PCR 1840000 (<50 IU/mL)
           HCV RNA  6.26  (<1.70 Log IU/mL)

  Most recent PCR testing:
    HCV RNA Quantitative PCR  135 (<50 IU/mL)
    HCV RNA   2.13 (<1.70 Log IU/mL)

I'm at a complete loss to know what all this means. Thank you 100X.

[Lilla]

For a laugh (maybe), I was faxed results of someone else's blood work along with mine. Glad I pay attention to some detail.

[jmjm530]

It appears that you have a viral load of 135 IU/ml. This means the virus is still detectible but it is over a four-log drop from pre-treatment. What week of treatment was the blood drawn? What genotype are you? Did the office tell you how they're going to cover your transition from one doctor to another? Leaving you in the lurch like this is almost criminal.

-- Jim

[Lilla]

thank you so much for your responses; I've called the doc's office and asked for someone to call me and interpret this reading.  My blood work was taken at the end of my 3rd week on Pegasys/Riba (2 days before 4th shot)  I am Geno 2b.   No, they did not tell me how they'd cover the transition from one doc to another. After my husband got thru verbalizing his dissatisfaction with the whole bunch of 'em, we were assigned to the head doctor of the firm (originally he was the one I had been referred to by my general doctor, but was given to the other doctor that left).  While I think the latest doctor is a good one, his office doesn't know "who's on first".   A nurse called me from the office this morning & identified herself and asked if I'd started treatment yet.  I said "yes I have and you gave me the first injection". Perhaps they don't write this stuff down, or they faxed that to someone else. I gotta start laughing at some point.

[jmjm530]

That would be considered your week 3 test. What you ideally would have wanted -- especially with those numbers -- is a week 4 test which should have been taken the day before your fifth shot. I assume that has already past. What week are you now on? In any event, try and take another viral load test the day before your next shot -- or even the day of your next shot, just before the shot. I'm more familiar with geno 1 protocols than geno 2's, but if you're still detectible at week 4, and depending on how much liver damage, etc, -- you might want to extend a little. But again, don't know all the geno 2 protocols. While you're trying to figure out whether to stay with this group, do try and find another liver specialist if possible as a back up. Where do you live? Maybe someone knows a good liver specialist in the area.

-- Jim

[jmjm530]

I would then plan on getting your bloodwork done Monday morning and take your shot AFTER the blood is drawn. Friday would be OK but not as close to the end of the shot cycle as ideal.

If Florida is like most other states, you will need a prescription for a viral load test. All your doctor -- any doctor -- needs to do is give you an rx with "Heptimax" written on it, along with a diagnosis code. Alternatively they can fill out a Quest Diagnostics requistion form. Or, fax or call in the test if that is allowed in Florida. Quest has drop in center in many locations, so best to go to their site, locate the closest center to you, then call them and confirm what I've said in terms of what you will need. You can find the Quest locator on the blue bar on the left:

http://www.questdiagnostics.com/?gclid=CMCbr_uo44oCFRnSIgodMSvPwg

If you don't mind the trip, best person in Florida to see is Dr. Eugene Schiff or someone else in his office. I've heard the name "Jeffers" or something mentioned as well who works in his office.
http://www.med.miami.edu/med/hepatology/chief.asp

If the trip sounds workable, best to call office and ask to speak to a doctor directly or a nurse, not the person who answers the phone. Explain to them that your doctor left his practice mid treatment and you are basically left out in the cold. I'm sure if you plead your case, they will take you in right away.

All the best,

-- Jim

[Lilla]

I live in SW Florida, Sarasota area---doctor's nurse just called me and said I should have next viral load at week 12, but go for CBC every 4 weeks (or next one at week 8).  I do shots each Monday early AM, so I try for blood work on Fridays. I can't thank  you enough for your help with interpreting all this stuff.   You mentioned Heptimax testing (Quest is on my ins.plan)...do I need the doctor's authorization on this or can I ask for that next time?

[susan400]

Lila,

I found out about my Dr. in Lakeland through somebody (don't remember who) at this site, about 2-1/2 yrs ago.  He's not a hepatologist because there are none of those anywhere in the near vicinity to me.  He's a gastroenterologist who has a special interest in Hep C.

Susan

[jmjm530]

For your next viral load test, definitely ask for something more sensitive than what they gave you. You want something like Quest's "Heptimax" which goes down to 5 IU/ml. LabCorp has another test just as good. Your test only goes to 50 IU/ml, which is OK but there's no reason you shouldn't have the most sensitive test available, especially since it appears you missed the week 4 test. You want to know that ALL the virus is gone within our best detection limits.

-- Jim

[GoofyDad]

Not to add to you woes, but as long as your are getting your dander up, it would appear that they instructed you to go in for your 'week 4' test a week early. Standard Geno 2 protocol calls for testing at weeks 4 and 12.

Had you been lucky and undetecable at week 3, it would have turned out better than testing at week 4, because you would know with near certainty that you were also undetectable at week 4. So in that circumstance the week 3 test would have provided more information. Unfortunately that's not the way it played out.

Some very informed docs would tell you that a geno 2 who didn't clear by week 4 might warrant extra scrutiny and possible adjustment to treatment plan. Unfortunately there isn't much if anything published on week 3 tests, and you're left without knowing whether you were UND at week 4 or not.

Personally, I would pitch a fit. I would ask whether that was considered a week 4 test, and when Bimbo nurse answered in the affirmative I would politley ask her to count backwards to see when the week one test would have been. Based on this logic it would be just before your first shot.

In the unlikely event that she responds that it was a intentionally given as a week 3 test, I'd ask what that was all about?

Try googling this, quotes and all

"genotype 2"  "week 4"  test

Now try this

"genotype 2"  "week 3"  test

You will of course find that testing very rarely occurs at week 3.    

[Lilla]

thank you for your post; to be very honest, I don't really know why I went in for the test at week 3 other than my doctor (who is now no longer) said "here is order; go get blood work at end of week 3; come see me one week after".  I made appt for 9 days after blood drawn, but as mentioned, doctor left practice. I just don't know if this is the standard for medicine, but it seems I've had to pursue and question everything with regard to tx so far, and I do believe we need to be in charge of our own health, but I feel as though I'm second guessing the medical field.

[Kalio1]

You feel that way because that is exactly the position we are put in with HCV. The opinion on treatment course varies widely from one doctor to the next. Many have no clue what the latest treatment regimens or testing dates even are, and then you have to deal with their individual opinions on the subject. There is no real consensus. One doctor will say you don't need to test until week 12 while others, more current in their understanding of the disease will want a 4 week test. I've seen people have to fight just to get the 4 week test, others who can't get their doctors to even order it. It's ridiculous. That is why educating yourself and coming to your informed decisions about your care are so vital with this disease. That and gettting the best possible doctor on the case who has a lot of experience with Hep C and is up on the latest developments are the two best tools you've got to fight this thing.

Please let us know what your 3 week test results were when you get them. I don't think there is a big dif between a 3 week test and a 4 week test if you tested at the end of week 3, that's close enough. Just be sure and do your PCR tests BEFORE your shot, or on the last day before it is due again to get the most accurate results.

Sorry about the fiasco with your doctor up and leaving you holding the bag, I hope it turns out you end up with a silver lining ending with a better doctor who is more knowledgable who you can have confidence in.

[Lilla]

thank you for your help. I got a referral from an orthopaedic doctor I saw recently to an infectious disease doctor who specializes solely in Hep C.  I am faxing my records to him, and will get appt.  My PCR pre-tx was 1.8 mil/6.26; after 3rd week at the end, it was 135/2.13. AST & ALT readings were under 35 and before treatment they were 5 to 6X normal.  Main reason I am going to switch doctors is because the last doctor did not tell me when to get next blood work, did not interpret my PCR to me, didn't take my weight, bp, etc. (normal stuff you usually get when you have an off.visit), and nurse called me wanting to know if I'd started treatment yet, and she was the one who gave the first injection. Thought they wrote that type of thing down.  It goes much further than that as well.

[Kalio1]

Sadly your experience is not unusual. HCV patients seem to be the unwanted step child of the disease world.

You are smart to proactively pursue your health care, Im sure your efforts will pay off in the end. Tx is hard enough as it is without having to deal with a blow like that. Hang in there.