Re: Biopsy results

[Guest guest]

Geri,

I got the result of my laparoscopy liver biopsy today. There is no evidence

of cirrhosis. There is fatty infiltrate. They dont know why bile acids are

high. Bile ducts looked ok. They dont know what is causing my symptoms.

NOW WHAT???????????????? arrgggggg

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] H Pylori

>Date: Tue, 03 Aug 1999 10:35:54 -0700

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>From: Geri Spang <spangs@...>

>

>Hi Barbara,

>I don't think that my doctor had H Pylori in mind when did the endoscopy

>because he isn't aware that I've had recent problems with nausea and

>slightly increased stomach pain (not bad enough to mention most of the

>time.) I was mainly wondering if this is a routine biopsy done in

>conjunction with an endoscopy or if it was done because he found an ulcer

>and wanted to rule out H Pylori. I did a little Internet search on it and

>it sounds like a manageable problem, compared to some of the things

>everyone else has to deal with - but I don't have it anyhow!!! On the

>other hand, it was interesting because others who are having nausea and

>other stomach problems might find their answers through H Pylori tests. I

>had no idea there were so many oddball conditions lurking out there until I

>was diagnosed with AIH then started in with this group.

>Take care,

>Geri

>

>---------------------------

[Guest guest]

,

I remember reading something thats sounding alot like

what you have, that the bile acids are high. It wasnt

AIH, but maybe PBC.Id look into that, and definitely

get a second opinion from a doctor that can tell you

what it means.\

Good luck

Elena

--- susan johnson <shireen42@...> wrote:

> From: " susan johnson " <shireen42@...>

>

> Geri,

>

> I got the result of my laparoscopy liver biopsy

> today. There is no evidence

> of cirrhosis. There is fatty infiltrate. They dont

> know why bile acids are

> high. Bile ducts looked ok. They dont know what is

> causing my symptoms.

> NOW WHAT???????????????? arrgggggg

>

> J

>

> >From: Geri Spang <spangs@...>

> >Reply- onelist

> > onelist

> >Subject: Re: [ ] H Pylori

> >Date: Tue, 03 Aug 1999 10:35:54 -0700

> >MIME-Version: 1.0

> >From errors-165537-4674-shireen42 Tue Aug 03

> 10:39:31 1999

> >Received: from [209.207.164.233] by hotmail.com

> (2.1) with ESMTP id

> >MHotMailB970745200C4D82197C5D1CFA4E90DCF0; Tue Aug

> 03 10:39:31 1999

> >Received: (qmail 30249 invoked by alias); 3 Aug

> 1999 17:38:55 -0000

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> >From: Geri Spang <spangs@...>

> >

> >Hi Barbara,

> >I don't think that my doctor had H Pylori in mind

> when did the endoscopy

> >because he isn't aware that I've had recent

> problems with nausea and

> >slightly increased stomach pain (not bad enough to

> mention most of the

> >time.) I was mainly wondering if this is a routine

> biopsy done in

> >conjunction with an endoscopy or if it was done

> because he found an ulcer

> >and wanted to rule out H Pylori. I did a little

> Internet search on it and

> >it sounds like a manageable problem, compared to

> some of the things

> >everyone else has to deal with - but I don't have

> it anyhow!!! On the

> >other hand, it was interesting because others who

> are having nausea and

> >other stomach problems might find their answers

> through H Pylori tests. I

> >had no idea there were so many oddball conditions

> lurking out there until I

> >was diagnosed with AIH then started in with this

> group.

> >Take care,

> >Geri

> >

> >---------------------------

[Guest guest]

Okay, the results are in and we are more confused than we were before. The

results showed no inflammation in the liver. Recap - my husband had

ulcerative colitis and during a colonoscopy to diagnose the UC, they

perforated his colon. They had to remove the colon and after a few

surgeries, they reconnected him. 8 years later, he goes to ER with upper

right quad pain and one episode of vomiting. While at the hospital, his eyes

turn yellow and his enzymes levels are above normal.

They did an endo to look for signs of PSC, they didn't find any. They

checked for all the heps, but nothing showed up. Now, after the biopsy

showed no signs of inflammation, they want to do another endo and go further

into the ducts to once again rule out very early signs of PSC. His enzyme

levels have not been elevated since that one time. He feels fine and is not

on any meds.

Any ideas or comments?

Jackie

(land)

[Guest guest]

Jackie,

That is so wierd! I'm glad his biopsy was negative though! I wonder if it

could have been something like a gallstone? Maybe blocking the bile duct or

hepatic duct temporarily until it passed? I'm looking at a diagram, and it

seems like a good guess to me! That would explain the pain, enzymes and

jaundice maybe? Actually, I have no idea, but it LOOKS possible to me!

I'm glad he's feeling better, and hope he continues that way! You take care

of yourselves and let me know if they come up with anything more.

Love ya,

(AIH)

[Guest guest]

Hey :

They did an ultrasound to check for gallstones originally, but didn't see

anything. Is it possible to pass a gallstone without a trace?? He also

works with pesticides, but since he has returned to work with no elevation in

enzyme levels, the doc has ruled out the pesticides. My hubby has a bad

habit of chewing his fingernails. You think it's possible he could have

gotten some chemical on his hand, then accidentally ingested it causing this

short lived rise in enzyme levels, pain and jaundice?? He was also taking

extra strenth tylenol after 4 hours for several days. They checked him for

tylenol toxicity, but his blood levels didn't show a high amount of tylenol

toxicity.

I'm glad the docs are being so thorough, but after being told PSC was ruled

out (at least for now), it's hard to try and swallow the fact that they want

to look deeper to see if there are early, early, early signs of it way down

some bilary tree somewhere.

Anyone out there with PSC who might help shed some light on symptoms??

Jackie

(land)

PS. , what diagram were you looking at?

[Guest guest]

Jackie,

I guess your guess is as good as mine! Is that procedure he has to go

through painful? I was just looking at a diagram of the liver from my Merck

Manual. Does he have any symptoms at all? Here's a site for you:

<A HREF= " http://gi.ucsf.edu/ALF/info/infopsc.html " >Click here: Primary

Sclerosing Cholangitis</A>

Love ya,

(AIH)

[Guest guest]

In a message dated 11/6/01 4:36:47 AM Pacific Standard Time, jeanette_cuk@... writes:

Hy Harper, I don't think my specialist would have told me about the cirrhosis if i hadn't mentioned it to him. My last biopsy was 6 months ago and i don't think he would have ever told me.

Jeanette UK

To me, that approach is outrageous and reflects a distinctly outmoded view of the relationship between doctor and patient. Obviously, he doesn't view you as part of the "team." I hope you are in a situation that allows you to state your objections, strongly.

Harper (AIH dx 5/00)

[Guest guest]

Rhonda,

I am sorry you have AIH, but I know sometimes it's better to

finally know what's wrong so you can have a game plan. I had almost

identical results and the doctor put me on 40 mg. of predisone as

well. About a month ago he added immuran, actually the generic for

it, azathioprine, 50 mg. I also take ursodiol, 1500 mg. a day. I

always pray when I have tests that the results will be accurate and

definitive. I hate it when you go in for tests and they bring more

questions than answers, I call it medical limbo. Anyway, Rhonda,

please let me know if you need a shoulder to cry on. Yesterday, I

had a good cry, somedays it hits you differently. I had a good day

today, I overdid so tomorrow I better be a little more careful.

Rhonda even though I haven't known you long, you have become a

treasured friend.

Love,

Ruth

> Well, it's now official...I have AIH. I heard from my dr. today and

> he said the results from this biopsy is radically different from

the

> one I had in Nov. I have AIH and there is fibrosis around the

> portals. He is starting me on Prednisone 40mg per day immediately.

> Is that a normal dose?

>

> I guess I'm happy to finally have a diagnosis, but not real happy

to

> be sick and have to have a diagnosis. Anyway, just thought I'd

share

> the info. Thanks for your support!

> Rhonda/TN

> AIH

[Guest guest]

Rhonda, glad you are finally not in limbo anymore with the problem. Now you can fight the fight with us. You are in excellent company!

debby

[ ] Biopsy Results

Well, it's now official...I have AIH. I heard from my dr. today and he said the results from this biopsy is radically different from the one I had in Nov. I have AIH and there is fibrosis around the portals. He is starting me on Prednisone 40mg per day immediately. Is that a normal dose?I guess I'm happy to finally have a diagnosis, but not real happy to be sick and have to have a diagnosis. Anyway, just thought I'd share the info. Thanks for your support!Rhonda/TNAIH

[Guest guest]

Rhonda,

I can't remember if I started on 60 mg's or 40 mg's. I think they started me

on 40 and then increased the dose because LFT's weren't coming down. I was

in such a fog then it's hard to remember. I also am very tall 5ft 11 inches

and weighed at the time 150 lbs. Now thanks to prednisone got up to 180 but

as they taper am back down to 170. If I remember correctly I think my

Hepatologist who is probably 5ft 5 inches and weighs about 120 pounds soaking

wet said I probably should have been on a higher dose to start off because I

am the size of most men. So 40 mg's sounds about right.

[Guest guest]

Rhonda, Welcome to the 'club' membership is a dubious honor. One way to look

at the situation is that you now have a diagnosis and can proceed to treat

it.

In my experience 40 mg is an OK place to start, Some Dr's like 50. My

experience is a week at each level then a 5mg drop. My Dr. always repeated

labs after 2 weeks to make sure they were 'normal' then continued the 5 mg

drop until I hit 10 mg then he switched to 2.5 drops until I was off. It

takes a while. You will have lots of enery & feel graet for a while (except

for the irritability, remember we are messing with hormones here) then

sluggish and achy. My wishes es.

Patty (Miami)

AIH 80, Tx 1997

[ ] Biopsy Results

Well, it's now official...I have AIH. I heard from my dr. today and

he said the results from this biopsy is radically different from the

one I had in Nov. I have AIH and there is fibrosis around the

portals. He is starting me on Prednisone 40mg per day immediately.

Is that a normal dose?

I guess I'm happy to finally have a diagnosis, but not real happy to

be sick and have to have a diagnosis. Anyway, just thought I'd share

the info. Thanks for your support!

Rhonda/TN

AIH

[Guest guest]

My 21 year old daughter just relapsed with AIH and was started on 40 mg. a day also. So it must be typical. Hopefully you will be able to go on a lower dose soon!! Hang in there things usually do get better!!! You just need to take care of yourself and get as much information and make the best decisions for yourself.

GG

[Guest guest]

Sharon, this is really GREAT news! I am truly happy for you! Keep up the great work and wish the rest of us the best.

Debby

[ ] Biopsy results

I wanted to let you know the results of my biopsy which occurred on September 30. As you might remember, I was originally diagnosed with AIH in 1986. My ALT and AST were in the 500s at that time. The biopsy report at that time stated "Chronic active hepatitis, moderate to markedly active with portal-central and portal-portal bridging necrosis and prominent lobular component." I was treated with Imuran and Prednisone, but went into remission three times, the latest in 1995. I have been on no medication since 1995, but have had bloodwork every 6 months which was normal. However, on July 30, my ALT and AST were high (139 and 65). After waiting almost 2 months to find a new hepatologist, I finally had my biopsy on September 30. The doctor called yesterday to say it showed minimal inflamation and minimal portalization. He wants to follow me and watch the trend over the next months. He is prescribing Actigall, a nontoxic bile salt, but no other steroids or other meds. I will continue to have bloodwork every 2-3 months and will see him every 3-4 months. I am happy to be able to report my good news to this group. I hope that many of you will have equally good results. Of course, we still don't know the reason for the rise in the ALT and AST, but I'm glad to know the liver has seemingly not been affected. Sharon

[Guest guest]

I'm so glad to hear your good news keep it up and stay healthy,......... L

[Guest guest]

Well , congrats! A good liver biopsy! Wonderful....it is what we all strive for! Have you been on treatment with Imuran or prednisone? Just wondering. Sometimes the labs can be off, but the biopsy is the best test!

Good luck...debby

[ ] biopsy results

I got my biopsy results today. My liver is normal. Dr thought for sure from my labs that I had AIH ( ANA 1:1280, alt 84, enlarged liver on ultrasound) and tested negative for lupus and other lupus related autoimmune disorders. Could it be that I have it and there is no damage done yet? He is repeating enzymes and ANAs this week and in 3 months and seeing me in 3 months.what else could have caused those elevations? S

[Guest guest]

.

Congratulations! Don't have any ideas. I just know normal liver is good!

Hope it stays that way. The high ANA may indicate some other autoimmune

syndrome, but you obviously know that.

Patty

[ ] biopsy results

I got my biopsy results today. My liver is normal. Dr thought for

sure from my labs that I had AIH ( ANA 1:1280, alt 84, enlarged liver

on ultrasound) and tested negative for lupus and other lupus related

autoimmune disorders. Could it be that I have it and there is no

damage done yet? He is repeating enzymes and ANAs this week and in 3

months and seeing me in 3 months.what else could have caused those

elevations?

S

[Guest guest]

I haven't been on anything. This all (labs) just started in November

and took this long to get this far. I'm going to a different lab for

my new tests. Just would like to know what's up.My Dr told me the ANA

would not be false at the level it is.

> Well , congrats! A good liver biopsy! Wonderful....it is

what we all strive for! Have you been on treatment with Imuran or

prednisone? Just wondering. Sometimes the labs can be off, but the

biopsy is the best test!

>

> Good luck...

[Guest guest]

Laurie's Doctor told her that the liver could actually have up to 40% more

damage than is indicated by a liver biopsy. He stressed to us that the

results of the blood lab work is more reliable. I do not know if this is

true, but if the liver biopsy is " underestimating " the amount of liver

damage present (if any) this would support the doctor's statement.

Greg in Sidney, OH (Laurie's husband)

[ ] Re: biopsy results

> I haven't been on anything. This all (labs) just started in November

> and took this long to get this far. I'm going to a different lab for

> my new tests. Just would like to know what's up.My Dr told me the ANA

> would not be false at the level it is.

>

>

>

>

> > Well , congrats! A good liver biopsy! Wonderful....it is

> what we all strive for! Have you been on treatment with Imuran or

> prednisone? Just wondering. Sometimes the labs can be off, but the

> biopsy is the best test!

> >

> > Good luck...

>

>

>

[Guest guest]

,

What tests did they do to rule out lupus? I'm copying some info from the Lupus Foundation of America.

http://www.lupus.org/education/diagnosis.html

There is a list of 11 criteria to diagnose lupus. You have to have 4 or more of the symptoms to suspect lupus.

Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose. Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status. Currently, there is no single laboratory test that can determine whether a person has lupus or not. To assist the physician in the diagnosis of lupus, the American College of Rheumatology (ACR) in 1982 issued a list of 11 symptoms or signs that help distinguish lupus from other diseases (see Table 2). This has recently been revised. A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.

Table 2The Eleven Criteria Used for the Diagnosis of Lupus

Criterion

Definition

Malar Rash

Rash over the cheeks

Discoid Rash

Red raised patches

Photosensitivity

Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers

Ulcers in the nose or mouth, usually painless

Arthritis

Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis

Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder

Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic Disorder

Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic Disorder

Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear Antibody

Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic Disorder

Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).

RE: [ ] biopsy results

. Congratulations! Don't have any ideas. I just know normal liver is good!Hope it stays that way. The high ANA may indicate some other autoimmunesyndrome, but you obviously know that.Patty-----Original Message-----From: oldwoozie [mailto:gsldrmoose@...] Sent: Tuesday, March 11, 2003 9:14 PM Subject: [ ] biopsy resultsI got my biopsy results today. My liver is normal. Dr thought for sure from my labs that I had AIH ( ANA 1:1280, alt 84, enlarged liver on ultrasound) and tested negative for lupus and other lupus related autoimmune disorders. Could it be that I have it and there is no damage done yet? He is repeating enzymes and ANAs this week and in 3 months and seeing me in 3 months.what else could have caused those elevations? S

[Guest guest]

....your labs don't show damage, just what is going on at the

moment....you could have it and that was just a flare or you could have

been exposed to an element or drug that caused your liver enzymes to

spike. If your labs are up next time perhaps a biopsy would be prudent.

remember....no news is good news.

love jerry

[Guest guest]

I'm sorry ....i see you already had a biopsy....my bad. In that

case forget I opened my stupid mouth. And yes you could have it and no

damage has been done yet, but you definitely should keep on top of it,

before there is any damage...

Excuse my other reply I thought you had only labs to go on till I

re-read your post.

love jerry

[Guest guest]

,

sounds like he covered everything. The only reason I asked is that the first rheumy I was sent to basically blew my symptoms off. He finally told me, "Well, you have some sort of autoimmune system disorder, but we're not going to give it a name at this time." I decided that sounded sort of stupid to me, so I went to a different rheumatologist. Based on the tests I'd already had done (labs and a skin biopsy) and the exam done by his resident, he walked in the door and said, "Well, you know you have lupus, don't you?" I told him, that no, I didn't know that and he just said, "well, you do but for now it seems to be mild, let's see if we can keep it that way." That was in Oct 96. A lot of the symptoms I have now were not present at the time I was diagnosed but I did have 6 of the 11 - I think - I'm not looking at the list right now, so it might have only been 5. Oh, I was never tested for the lupus anticoagulant or the anticardiolipin antibodies until I switched to a new rheumy in July. Ends up I do have the lupus anticoagulant (50% of people with lupus have either one or both). These cause a 50% increased risk of blood clots, strokes, and heart disease. I'm now on coumadin for life in hopes of preventing those.

I don't have a clue what could cause such a high ANA if it's not lupus or AIH.

W

[ ] Re: biopsy results

> ,> What tests did they do to rule out lupus? they did (if I copied these correctly): c3, c4 compliments; anti dna ds antibody; sjogren antibody; sm & rap antibody; conti (?) ena antibody; anti cardiolipid antibody. All were in normal range.I only have 1 criteria of lupus: the high ANA. The Rhuemetologist appointment lasted over an hour and a half between physical exam and medical and family history.

[Guest guest]

Rogene, I'm at a loss for words regarding the test results - but I

want to say this much, I will keep you in my thoughts and prayers.

You are such a strong, wonderful, interesting person, and I just

know that you will get past this hurdle. Just as you've been there

for me, I will be there for you.

Sis

>

> I guess you could say I failed the test . . . the mass

> in my breast is malignant . . . a lumpectomy is in

> order.

>

> There are further tests in the works that will

> determine how aggressive the cancer is and if it

> responds to hormones. Plus, they are doing a PET scan

> to see it there are any other sites! . . .

>

> The doctor recommended that we postpone our vacation

> and take care of this . . . Better safe than sorry!

>

> I'm open to considering ANYTHING that can cure this

> thing! . . . But I'm not going to wait around to see

> if it works before having a lumpectomy!

>

> My hubby has been fantastic! I can't imagine going

> through this without him!

>

> Accepting all prayers!

>

> Rogene

>

[Guest guest]

Thanks Sis . . .

I'm committed to getting through this . . . The doctor

asked me if I wanted a prescription for anxiety . . .

I told him I'd be OK, but my family could use one! . .

..

I wish I hadn't told my family about it . . but we

were to have seen them last week, so I couldn't say

nothing! . . .

I just wish I could take all the worry away from them!

Hugs,

Rogene

[Guest guest]

Oh Rogene,

I am so sorry to hear this! I am shocked actually! I think there

have even been some suggestions by some doctors that breast implants

have reduced the incidence of breast cancer, so I just did not

expect this. When will you have the other tests done? I hope that

the PET scan comes up empty for anything else, and that will be my

prayer.

I am sorry that you have to postpone your vacation. You need to

take care of this one, Rogene, and a lumpectomy sounds like a good

start.

I can offer you some websites to look over for suggestions on

dealing with breast cancer, and some books to read. I have already

determined what I will do if I get cancer, so I will share that

information with you gladly. Take what you like and leave the rest!

I am so glad to hear your husband is being so good to you! We need

our men, don't we? I will pray for your healing, Rogene.

Love,

Patty

>

> I guess you could say I failed the test . . . the mass

> in my breast is malignant . . . a lumpectomy is in

> order.

>

> There are further tests in the works that will

> determine how aggressive the cancer is and if it

> responds to hormones. Plus, they are doing a PET scan

> to see it there are any other sites! . . .

>

> The doctor recommended that we postpone our vacation

> and take care of this . . . Better safe than sorry!

>

> I'm open to considering ANYTHING that can cure this

> thing! . . . But I'm not going to wait around to see

> if it works before having a lumpectomy!

>

> My hubby has been fantastic! I can't imagine going

> through this without him!

>

> Accepting all prayers!

>

> Rogene

>