How often/When is endoscopy necessary?

[eureka254]

Hi folks, was wondering, is an endoscopy considered "routine maintenance" with active HCV?

Is it usually recommended to be done on a regular basis?  I was under the impression that varices were a concern only in situations of portal hypertension.  Would a doctor recommend endoscopy in the absence of portal hypertension?  (My husband who has HCV is questioning how necessary this test is.)

Or, is it just routine course of "clearing to start treatment" kind of test?  For those are starting/started/had treatment, was this part of pre-treatment work-up?

Thanks for any input.

[HectorSF]

Hello.

I can only tell you what I know based on my own experience. Your doctor has the facts in this case. You should call his office and communicate your questions and concerns to him/her as soon as possible as this is important information for BOTH you and your husband to know regarding your husbands health and future HCV treatments!

Has your husband already had a liver biopsy? What were the results? Stage? Grade?
What were the results of his AST and ALT, and platelet levels?

From my own experience, an endoscopy would USUALLY be performed if it was thought that the patient MAY have advanced liver disease such as stage 4 cirrhosis. (Note: There are other condition which can cause varices too). Portal hypertention, along with splenomegaly (an enlarged spleen), and esophageal varices are all signs of advanced liver disease. ****I don't want to scare you here, so again it is very important to communicate your concerns to YOUR DOCTOR who know all the facts about your husband's condition.****

By looking at the esophageal varices using endoscopy they can tell if they exist and the degree to which they are enlarged. If they are found, it is also helpful to put a patient on a beta blocker as a preventive measure to prevent future bleeding.

How varices are formed:
Normally, blood from your intestine, spleen and pancreas enters your liver through a large blood vessel called the portal vein. But if scar tissue blocks circulation through the liver, the blood backs up, leading to increased pressure within the portal vein (portal hypertension). This forces blood into smaller veins in your esophagus, stomach and occasionally your rectum. The excess blood causes these fragile, thin-walled veins to balloon outward and sometimes to rupture and bleed. Once varices develop, they continue to grow larger.

Cirrhosis also affects the chances of clearing the HCV virus. So if you husband is going to have HCV treatment it is important this is discussed BEFORE stating treatment.
Please communicate your questions and concerns to YOUR DOCTOR.

If you have further information on your husband's condition let us know are we can be more helpful.

All my best to you and your husband!
Hector

[JennyPenny]

Endoscopy is recommended in hepatitis C patients who are stage 4 (cirrhosis). They used to recommend this test yearly but after a few negative endoscopies, many docs suggest having them done every 2-3 years.

[eureka254]

Thanks for the info!

Hector:
Unfortunately, my husband's liver pathology revealed 'mild inflammation and cirrhosis' (confirmed w/trichrome and reticulin stains, that would correlate to Grade II/Stage IV, as I understand it), so he IS what you'd call 'advanced liver disease'.  However, his last 6 months of  AST/ALT levels have been high end of normal.  Platelet levels may not be pertinent as he's on anti-platelet meds for cardiac issues. (He's already on beta-blocker meds, too, so if they DO find varices, what would they recommend then, I wonder?  Guess we'll cross that bridge if we get to it...) Luckily, spleen is not palpable on exam, and he appears not to have any extra-hepatic complications at this time.  My husband feels like somewhat of a guinea pig at times, though -- it's hard to submit to all this 'testing' when you don't "feel" sick!

[viaduk]

I resisted  my doc's recommendation of endoscopy for a while, and when I finally agreed to it, we found several large varices. I was immediately put on nadolol  and have had several endoscopies since that time where the varices were banded.  We were able to clear all the varices over the course of about 2 years, and  I had a couple of negative endoscopies since then.  The last one, done this past Friday, after a one year break,  was also negative for varices and the doc recommended follow up in one year.

I am so relieved that the varices appear to be under control, and am happy that I listened to my doc's advice and had the scoping.   By the way, ask the doc if he/she will do it under sedation.  I have it under anesthesia, but also had it done while awake and drugged with  demerol.  For me, being "out" is definitely the better way to do this.

Good luck.

[HectorSF]

Thank you for the additional information. I’m sorry to hear that your husband’s liver disease has progressed to cirrhosis.

Since your husband has Stage IV (cirrhosis) liver disease it IS routine for your husband to be examined for varices. Varices can be a life threatening complication of cirrhosis. This is nothing to take lightly! It is not something you want to find out after the fact. After a first bleed. It is much better to know about it now when preventative measures can be taken. I’m glad to hear his spleen is not enlarged and that he is not showing signs of decompensated cirrhosis.

"My husband feels like somewhat of a guinea pig at times, though -- it's hard to submit to all this 'testing' when you don't "feel" sick!"
I'm sorry your husband "feels like a guinea pig" but does he understand how very serious Stage 4 liver disease is? Unless he can slow down or stop the advancement of his cirrhosis, possibly by clearing the Hep C virus,..in time he will need a liver transplant to continue to live. I am in a similar position, so I understand the gravity of his situation and am deeply sorry to have to be the bearer of bad news.

I understand what you are saying about your husband "not feeling sick". I also felt great before being diagnosed with cirrhosis. I had no outward symptoms. The only indication of my cirrhosis was a low platelet count and slightly elevated AST and ALT. The biopsy told the true extent of the condition of my liver. It was quite a life changing shock I can tell you. That is the insidious thing about liver disease. You can feel good right up to when your liver loses it ability to function (decompensation).  
I don't know if your husband had a heart attack or not but if you think about it...the day before a person has a heart attack they feel fine, might believe they are healthy and normal. But the heart disease that causes the heart attack has usually been developing over decades (like liver disease). Unfortunaetly it takes that first attack to realize everything is not as it might have appeared on the outside.

You want to have your husband examined so both you and he can get the best treatment possible and avoid if possible his liver disease progressing any further. If and when (I hope never) your husband's cirrhosis goes from compensated to decompensated all these tests now will appear to be trivial.

Please speak to your doctor about your concerns and educate yourselves about cirrhosis so that you both will choose the best treatment options available.

Please keep posting as there are many caring and knowledgeable people here who will be glad to help you in any way they can.

I wish you both all the best.
Hector

[HectorSF]

Here are some website addresses you might find helpful in learning more about cirrhosis.

http://www.liverfoundation.org/education/info/cirrhosis/

http://www.emedicinehealth.com/cirrhosis/article_em.htm

http://healthguide.howstuffworks.com/cirrhosis-in-depth.htm

Cirrhosis and Chronic Liver Failure:
Part I. Diagnosis and Evaluation
http://www.aafp.org/afp/20060901/756.html

Part II. Complications and Treatment
http://www.aafp.org/afp/20060901/767.html

Cheers!
Hector

[eureka254]

viaduk:

Thanks for sharing your personal experience and advice! He's already postponed the procedure once, unfortunately...  and, I'm sure my husband would prefer to be 'out' too, so maybe that'll make the procedure less intimidating!

Hector:

Ironically, it WAS a near heart attack that led my husband to go see a doctor for the first time in over a decade... as you can imagine, he's neither fond of nor confident in the medical community in general :P.

Unfortunately, he's not a much a practicitoner or believer of 'preventative' measures, either, and though I believe in doing whatever is possible to extend his health, he's not nearly so pro-active on his own behalf.  (He operates mostly in 'denial' mode about his conditions -- I have to remind him daily to take meds, go to doctor's appointments, and he complains that I ask too many questions @ the doc appts, etc.)  Sometimes it's a good thing, because he really lives life to the fullest instead of obsessing about his illnesses, but since he avoids thinking or talking about the gravity of his conditions, it can be frustrating.  

I'm a realist and I'm very aware that ESLD may not be far away, but he's of the 'I'll believe it when I see it" attitude.  And, unfortunately, with HIPAA, his docs nurses fuss with me and make me jump hoops everytime I try to call with questions, and often the doc will call my husband back instead.  (Guess they'd rather talk to the patient who has very few questions and demands, instead of the nagging wife who asks all kinds of questions and wants copies of everything.)  

BTW:  You mentioned portal hypertension can lead to rectal bleeding as well... is a colonoscopy indicated too, w/cirrhosis?  Or is that more a rare occurence?

I do a lot of reading on this forum, and the support and information here is just phenomenal. Thanks, and God bless.

[HectorSF]

Yes rectal bleeding also can happen as the pressure builds up. I believe esophageal varices are more common and a better indicator of the complications due to cirrhosis which is why it is routine to have them examined when cirrhosis is present.

There are many people who like to ignore their illness. It is not uncommon. Unfortunately just because we choose to ignore something, it doesn't mean it doesn't exist.

I'm glad you are there to make sure he is doing what he needs to do and keeping the nurses hopping!


Do take care of yourself.

Hector

[viaduk]

Your husband is indeed lucky to have you looking out for him.  Please let him know that an endoscopy under sedation is  really not uncomfortable at all.  The anxiety of having someone run a scope down your throat is the toughest part of it, but once he has it done he'll see that it is really no big deal.  Under sedation, you  go to sleep and wake up a few minutes later  and it's done.  If he does have varices and they band them, he may have to lay off solid food for a day or two, and he may have a sore throat afterwards.

As Hector points out above, ignoring  a disease does not mean it is not there...  And varices are one of the things that should definitely NOT be ignored.  It's good that he has been taking beta blockers all along.  For many people with varices, this is the first choice of treatment anyway, so he may be indirectly dealing with  the varices IF he does have any.

Take care.

[eureka254]

Thanks... your responses gave me some fresh prespective and info, and my husband DID finally undergo the procedure yesterday.  

He was still very anxious and gave the nurses and docs quite a time -- (when posed history questions he was monosyllabic, and when asked why he was undergoing the procedure, his curt response was "the doctor told me to.")  But when they started sedation it was a different story.  He started talking... and talking.. and talking... and talking more...

He came back to recovery snoring, and the nurse explained that apparently when the Versed started to kick in they couldn't get him to STOP talking -- even when the endoscope was introduced.  They triple dosed the Versed and still he was chattering away... so they added 50ml of Benadryl to the mix.  Out like a light lol.

So we spent quite a bit of more time at the procedure than expected (he finally woke up almost 3 hours later lol), but it went well, overall.  Scope showed 'trace' varices, but nothing that was dangerous at present, thank God.  Same time, next year, they tell me.

Thanks again for your inputs.

[HectorSF]

Good news!!!

Glad he got checked out.
Thanks for the update!

Hector

[viaduk]

That is great!  Hope he didn't give away all the family secrets... :)

[eureka254]

LOL... wondered about that myself... when I asked the nurses what he said, she just grinned and said... "oh, you know, just talking..."  (sheesh, now I'm thankful for HIPAA  lol)

[stevenNYer]

Love your post comment of the endo.  Had to borrow some of it for one of our threads at the B forum:

http://www.medhelp.org/posts/show/447649

[willing]

thanks for sharing your husband's information.  I'm about to have my 1st endoscopy and am not clear on what the "results" are: photographs of detected  varices?   a narrative summary? what gets entered into the medical record?

Also, was his absence of spleen enlargement confirmed by ultra-sound or only based on its not being palpable on exam? From recent posts from stage3/stage4s it seemed an enlarged spleen  generally accompanies portal hypertension - but your experience indicates this is not always the case( I've gotten very different results regarding  the stage of my fibrosis from bxs/fs/blood-marker tests and so am looking for indicators that reliably indicate  stage 4/cirrhosis)

[eureka254]

Unfortunately, we were given neither pics nor text at the time, but we're due to meet with the Hepatologist in 2 weeks, and my understanding is that we'll get the report then (I am under the impression that it will be written summary, but I'll ask about pics when the time comes.)

My husband actually has had no evidence of enlarged spleen by all criteria: phys exam, Ultrasound or CT scan.  There was no evidence of portal hypertension, either, on scans (hmm... but should we presume mild undetected portal hypertension because of the presence of 'trace' varices?).  The difficulty and uncertainty (as I'm know you're struggling with some) is that, in my husband's case, there was no 'evidence' of cirrhosis on scans, either, so go figure. From my experience, the biopsy is the best we have ... but even there, I tend to think there is more 'sampling error' than is admitted to.

My husband's definitive diagnosis of cirrhosis Stage 4 was based on a 13x6x3 cm piece of adipose liver tissue removed at resection (left lobe removal) so in his case, gross and microscopic pathology had lots to work with, so there's no question.  (I didn't post in your other thread about F3/F4, because I thought this was probably not really a great help to you... my husband seems to be rather atypical in that most of his bloodwork in the past 9 months has been high normal, too, so I think it sorta further reinforces your doubts about reliable indicators, rather than removing them. )  

Wishing I could be more helpful. ~eureka

[willing]

thanks for the update - all a bit puzzling. In the context of fibrosis, it's not clear to me how varices can develop in the absence of portal hypertension ( I thought they were basically a response to the increased pressure). The definitive test for portal hypertension seems  to be based on measuring pressure in the portal vein. I'll ask about this when I have my pre-endoscopy appointment, but from what I've read this measurement  is not standard practice.  Possibly, in certain individuals tension can develop without visible effects on spleen/vein dimension; your visit with the hepatologist may  clarify. The bx sample definitely seems large enough to support the diagnosis on its own and the trace varices would provide at least one confirming indicator even if  the blood  and us/ct scan results  don't.

The images in the article on the tomography-based technique Mike716 posted a while back
http://www.ncbi.nlm.nih.gov/pubmed/18098299
certainly support the view that the degree of fibrosis can be very heterogenous throughout the liver -   I share your suspicions about  sampling error.

[Deb_c430]

Some serious good info here.

Willing I had endoscopy in Nov,  (it was fine)  they did give me pictures.  It was no big deal at all. I went to sleep woke up all done!  

Deb

[foofighter]

Yes, this is a subject that I am going back and forth on. I have had a couple recommendations to be safe and do it and a couple saying maybe not that big a rush.

Also here is a bit of discussion I had with HR, and his response in all caps. I try to glean info from all my reports and I still end up not knowing what to do. My doc's office got this report and they had no concerns. Have never ordered an endoscopy in spite of the stage 4.

To HR:
I noticed that on Feb 1 of 2007 my doc ordered an ultrasound that had my portal vein flow at 24 cm/sec but they have not checked that again. The CT they did last month says "a few splenic varicies" and one of the impressions said "Splenomegaly, findings could indicate portal venous hypertension."

Maybe a portal vein flow of 24 cm/sec was not that good and they just didn't say anything.

From HR:
NOT A WELL DEFINED PARAMETER IN EVALUATING PORTAL HYPERTENSION, ALSO FLUCTUATES A LOT.

So there is one more thing that won't tell you anything... portal vein flow. And apparently splenic varicies is something that is not a red flag either.

How do they check portal vein pressure? Also until this last CT, my imaging studies always just said borderline splenomegaly.

FF

[willing]

deb: thanks - always good to know what you're walking into.

ff: yeah - I think we have something in common in the sense that our fs came out  worse than other indicators. BTW, I owe you an apology; when you posted your results I meant to congratulate you on getting the test done, not on the results.

Here's a recent review of diagnostic methods:
http://www.****.gov

I'm not sure what's specifically involved in directly measuring the pressure,  but in principle it seems straightforward. Here's an older '54 surgery article complete with a picture of the manometer on the guy's stomach.

http://www.pubmedcentral.ni****.gov

Hopefully, technology has improved. I think HR's comments may indicate that cm/sec as measured by US may not be that reliable. (The comment on my last US was "normal monotonous hepatopetal flow" with no flow measurement).

However, I would think both the CT-detected spleen enlargement and the splenic varices would be consistent with the fs - did your doc's office give any explanation why they didn't think these were not cause for concern?

[foofighter]

I wasn't told about the results. They sent a letter saying, tests are fine, we will let you know about the Vertex trial. I read the CT impressions and my bummer bloodwork after I picked up my records for HR before the Fibroscan.

They pretty much blow off every concern, question, suggestion, you name it. I am scheduled to meet the head man at a university liver and transplant clinic at the end of June. It may turn out that my first guy is right and that there is no reason to be concerned, but maybe not. I will finally have that second opinion that everyone has ALWAYS told me to get.

Don't like the sound of that old test. Maybe they don't measure it anymore. I don't think I have ever read of anyone here having a test for it. Just that they know they have it because they were diagnosed with varicies and have a spleen that is "all blowed up."

Yeah, I think I have accepted all the results that have contradicted my biopsy as accurate. It will be interesting to see if my new guy has me treating so fast it makes my head spin, or if he will have me wait as I TRY to lose more weight. Has been really hard as I have been super gut sick which is scary and also really sad.  Exercise, which would help my depression and my weight, I just can't get up to do.!

Just started feeling better yesterday, thank goodness. And hopefully the last snow of the season will be tomorrow. Looking forward to getting outside to do some walking and gardening.

Finally--here comes the sun!

[Deb_c430]

When I had mine they put me to sleep, he also told me he would fix anything then and there  while I was asleep,   any variances and so on.  

They also gave me color pictures and a menu of what it meant, (the colors)  

Foo, you do need to advocate for yourself, I know it is hard,  I have never done a trial.  

Anyway good luck

Deb

[willing]

ff: I'm glad the world's looking a bit better and that you're set up with another dr.  My hunch, based on your results so far, would be to get ready to jump in with soc and possibly alinia, unless the new dr can find a convincing alternative explanation for those varices.

Here's some follow from the last post. Not sure why the  mh censors in their infinite wisdom have decided that some links to pubmed citations are not safe for viewing, but the pubmed ID for the  link above is 15646423

Diagnosis and treatment of portal hypertension.
Dig Liver Dis. 2004 Dec;36(12):787-98.

(you can type the pmid in the pubmed search dialog to access the article).

Direct measurement of portal vein pressure (HPVG) seems the "gold standard" for assessing portal hypertension. However, while accurate,  it appears to be rarely used:

"The pros of HVPG are that it is a safe and reproducible procedure: when a correct technique is used, the coefficient of variation of the method is 2.6 ± 2.6% . However, at present, HVPG measurement is not applicable on a routine basis, because it is invasive, relatively expensive and requires highly trained personnel."

They go on to discuss, pros and cons of the US and endoscopy, the latter being the technique most commonly used.

Discussion of a  study from last year
http://www.ncbi.nlm.nih.gov/pubmed/17464984
comparing FS/TE (which they called LSM - liver stiffness measurement) with HPVG found pretty good agreement:

"In this issue of HEPATOLOGY, Vizzutti et al.[21] aimed to evaluate the role of transient elastography in predicting clinically significant portal hypertension, as measured by the HVPG and endoscopic evidence for varices. Sixty-one consecutive patients with clinical or histopathologic evidence of cirrhosis underwent transient elastography after an overnight fast, followed immediately by direct measurement of HVPG in the hepatic hemodynamic laboratory. Among individuals without prior histologic examination, a transjugular liver biopsy specimen was obtained. Subjects proceeded to undergo an upper endoscopy the following day, with a laboratory profile obtained within one week of study enrollment. Within this cohort, a positive correlation between HVPG and liver stiffness measurement (LSM) was observed (r = 0.81). The sensitivity and specificity of LSM in diagnosing clinically significant portal hypertension, as defined by HVPG 10 mm Hg, was 97% and 92%, respectively, using a cutoff threshold of 13.6 kPa. The negative predictive value and sensitivity of LSM in predicting severe portal hypertension (HVPG 12 mm Hg) was also favorable at 91% and 94%, respectively. However, similarly to the HVPG, its ability to predict and distinguish between grades of esophageal varices was poor, suggesting a plateau effect in which further increases in liver stiffness are not reflected in the development of late complications of portal hypertension."

It sounds like short of actually seeing varices on an endoscopy/ct , fs of 14 or above may be the best indicator.

[merryBe]

I don't know how often you should go.... but my doctor said I became very talkative while going under....some folks loose all inhibition.......
which has happened to me before....I usually tell jokes in these instances..rattle off medical questions...., or in this case would have sang the roto- rooter song....which means I won't be back for a while!!!!!!!. Blush.