RE: labwork

[Guest guest]

Dear :

It's tough when you are still in the diagnostic phase of illness. It sounds

to me like he wanted you to go off of all your meds and herbs to see if that

was what was affecting your liver. Some people get serious liver problems

from different medication, and some herbals can cause damage, too. He needs

to know that before proceeding with your treatment. It might be that if your

labs have returned back to normal, he might take a different course of action

to treat you. He still might decide on the biopsy one way or another to find

out the extent of the damage. The best thing to do is to try to take as good

care of yourself as you can before you go in again. Take care and good luck!

Kathy (AIH)

Seattle area

[Guest guest]

Thanks Kathy! I appreciate that...I just don't get it though...why wait? If

only ONE number dropped and all the others stayed in the 200-300 ranges which

are 4 and 5 times the norm....why wait? I just hate not having any energy.

I have a 7 year old son and he is wondering what is happening to his

mom....that isn't fair! I am normally a go getter and full of life! Another

thing I have noticed is that people talk about weight a lot on here.....I

weigh 100 lbs...I lost 58 lbs last year and nobody could figure out why.....?

Is that abnormal too?

[Guest guest]

Dear :

As liver labs go, the 300s are high, but only 'medium' high. For example,

there are some in the group who've had labs in the 500 to 600 range and the

1000 range. At my worst, my labs were 2500 and 2700. Then there are others

whose labs never get even as high as yours are. He is probably waiting

because some drugs can linger in the system for days or even weeks. That is

more than likely why he is waiting. He wants to make sure that all of the

stuff that you were taking is out of your system. I forgot to ask how long

you have to wait. You might have said, but I missed it.

Were you dieting to lose that much weight? If not, that could indicate a

serious problem, too. I know it's rough to have to deal with a small child.

My daughter is 8 now, and was 3 when I was my sickest. It's hard to explain

why Mom doesn't feel like doing the things that you usually do. I watch TV

with my daughter and read out loud to her. I save my errands for the times

when I have help so that I don't have to worry about her while I'm doing

them. I also get her to help me with things. I've tried to make it seem as

fun as possible for her to help out. At this age, they are still pretty

enthusiastic about helping. Mine clears the table, helps me empty the

dishwasher, helps me pick up and I'm often asking her to get things for me.

She doesn't mind. I always make sure to say please and thank you so that it

doesn't sound like I'm demanding. I don't push it, though and sometimes I

just have to let the house go. It gets a good once over once a week or so

and then just some minor picking up the rest of the week. My daughter even

helps me with the laundry. The most important thing is to keep it as fun a

possible for them. It's all in the tone of voice. I sometimes say things

like, 'could you do me a favor?' Most kids are happy to. They love to feel

like they're helping. Hope this helps.

Kathy (AIH)

Seattle area

[Guest guest]

can we instant message?

[Guest guest]

Kathy,

Do you know anything about Dopamine levels? Mine have been HIGH!!! \\

Thanks...

Yakima

[Guest guest]

:

I know of one web site that has different support groups for auto-immune

related diseases. The URL is www.talkcity.com

Hope you find the answers you need : )

Debbie

AIH

Michigan

[ ] LABWORK

>From: MONZ18@...

>

>CAN ANYONE OUT THERE HELP ME WITH THE LAB WORK? MY NUMBERS ARE SOOO FAR

OUT OF WHACK AND IT IS JUST DRIVING ME CRAZY? I AM NEW TO ALL OF THIS AND I

AM JUST STARTING OUT, SO I WASN'T ON ANY OF THE MEDS YOU ALL TALK ABOUT.

THEY HAVE HOWEVER STOPPED MY HIGH BLOOD PRESSURE, MY BETA BLOCKER, MY

DIURETIC AND MY HERBS TO REDO THE LAB WORK SINCE ONE OF THE NUMBERS DROPPED

FROM THE 300'S DOWN TO 15...I JUST DON'T UNDERSTAND ENOUGH! THE DOC WAS SO

SURE I HAD AIH LAST WEEK AND NOW I AM WAITING AGAIN UNTIL THIS WEDNESDAY TO

REDO MY BLOODWORK AGAIN SO HE CAN DO THE BIOPSY THAT HE SAID HE WAS GOING TO

DO LAST FRIDAY! SINCE I HAVE BEEN OFF MY MEDS, 4 DAYS NOW, I WANT TO SLEEP

ALL THE TIME, MY EYES HAVE CIRCLES AROUND THEM AND I HAVE NOOOOO ENERGY! I

HAVEN'T EVEN GONE TO WORK! ANY SUGGESTIONS OR IDEAS? ALSO.....ARE THERE

ANY LIVE CHAT ROOMS OUT THERE FOR LIVER SUPPORT? ANY INFORMATION WOULD BE

APPRECIATED! THANKS!

>

>

>MONICA

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

[Guest guest]

,

Are you as close to Portland as you are to Seattle? If you can't see

someone very quickly at UW, you might check into the U of O in Portland.

You do need to be seen by at least a Hepatologist and there aren't many of

them around, especially in smaller cities like Yakima. Also, even slightly

high readings for Lupus and Rheumatoid Arthritis should be further

investigated, but I think you would want to see a top notch Rheumatologist

about those diseases. Will your local doctor give you a referral to

specific specialists or are you on your own? I have contacts in Portland

who might be able to help (my daughter is a Claims Manager for a large

medical center in Portland and has access to lists, etc., if I can get her

to take the time to answer an e-mail.) Kathy in Seattle knows who you

should see there, but it took her a long time to get an appointment. It

doesn't sound like you should wait.

The way things were done for me was that I had my biopsy in Las Vegas and a

Hepatologist from San Francisco interpreted the slides and the labs. A

month later, the results were evaluated by the Liver Transplant Center at

Scripps in La Jolla, and they concurred. My GI doctor in Las Vegas thought

I had PBC but he wasn't reluctant to say that he simply wasn't an expert in

Hepatology.

Take care,

Geri

PS: I don't even know what dopamine is or does!

[Guest guest]

GERI,

Yes, I am equally as close to Portland. I am scheduled to see my

rheumatologist on the 28th. I have been seeing her for 4 years now and she

is the one who diagnosed with me fibromyalgia. She tells me EVERYTIME she

does my blood work that I am " borderline " for lupus and RA. I was getting

injections every 3 months (5-7 injections) in my shoulders, hips and back due

to the severe pain. I am just afraid that the GI is going to tell me

everything looks good again and a few years down the road I will end up

sicker than sick! I have a 7 year old son to take care of and this is scary

for me. I just want to make sure I can still coach his basketball and

continue being active with him rather than feeling crappy now and again only

to find out they could have done something sooner. I have never heard of a

hepatologist. I don't think there is one here in Yakima. I just know that I

feel like I it has taken forever to redo this blood work which I am on way to

do in about half an hour.

Something else I want to know about is the reflux thing. My primary care dr.

told me I have that too. She had the paperwork in front of her to tell me

about it, but I was so angry at her for telling me she thought all of this

may be " stress related " that I left before I could get an explanation. Can

you tell me about it?

Today is the worst yet....I have been vomiting all morning and I have only

had water!! I will be glad once I get this blood work taken care of and they

give my my meds again! This is my 5th day without them and I am feeling it

big!

Thanks for all your help!

[Guest guest]

GERI,

Well, I just came from doing my labs. I am not feeling the greatest today.

I got copies of what dropped last week, looks like it is the ast, but my alk

phosphate and ggt is still elevated....any ideas on that?

thanks!

[Guest guest]

KAY,

I don't know...I don't think so. I think right now they are still trying to

decide whether to do the biopsy or not! I have to call tomorrow again to

find out what my results were. What is PBC and are its symptoms similar to

AIH?

Thanks!

[Guest guest]

, I forget - did they test you for PBC?

KayK

Well, I just came from doing my labs. I am not feeling the greatest today.

I got copies of what dropped last week, looks like it is the ast, but my alk

phosphate and ggt is still elevated....any ideas on that?

[Guest guest]

......ARE THERE ANY LIVE CHAT ROOMS OUT THERE FOR LIVER SUPPORT? ANY

INFORMATION WOULD BE APPRECIATED! THANKS!

There's one on the website

[Guest guest]

from what Ive read..alk phos and ggt represent the

biliary system of the liver. those are the ones which

are always elevated on my reports.

Jody

--- Kay Kuerston <kkuerstn@...> wrote:

<HR>

<!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0

Transitional//EN " >

<HTML><HEAD>

<META content= " text/html; charset=iso-8859-1 "

http-equiv=Content-Type>

<META content= " MSHTML 5.00.2614.3500 " name=GENERATOR>

<STYLE></STYLE>

</HEAD>

<BODY bgColor=#ffffff>

<BLOCKQUOTE

style= " BORDER-LEFT: #000000 2px solid; MARGIN-LEFT:

5px; MARGIN-RIGHT: 0px; PADDING-LEFT: 5px;

PADDING-RIGHT: 0px " >

<DIV><FONT face=Arial>, I forget - did they

test you for

PBC?</FONT></DIV>

<DIV><FONT face=Arial>KayK</FONT></DIV>

<DIV> & nbsp;</DIV>

<DIV>Well, I just came from doing my labs. & nbsp; I

am not feeling the greatest

today. & nbsp; <BR>I got copies of what dropped last

week, looks like it is the

ast, but my alk <BR>phosphate and ggt is still

elevated....any ideas on

that?<BR><BR><BR></DIV></BLOCKQUOTE></BODY></HTML>

------------------------------------------------------------------------

<pre>

Please support the American Liver Foundation!

1.) To subscribe send e-mail to

-subscribeonelist

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<HR>

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>

=====

Jody Compton

Dance like no one is watching. Love like it will never end.

In search of answers..

[Guest guest]

,

I thought Yakima was equal distance from Portland and Seattle. I don't

know much about the medical community in Portland anymore, though as I

said, I could possibly find out from my daughter. Or my sister-in-law who

is an RN at St. 's Hospital. But, University of Oregon Med. Center

has a good reputation and might be easier to manage than UW. (Personally,

I love Portland and though I lived in Seattle for almost 20 years, maybe

more, I don't care much about it.) Portland is a " warmer " city in more

ways than one.

If your Rheumatologist says you're borderline for Lupus and RA, what does

she do about it? Nice to inform but better to take action. I've never

had injections nor have they been suggested, but I confess that I tend to

forget to mention pain when I see a doctor. Partly because when I'm up

and around the pain decreases considerably.

There probably isn't a Hepatologist in Yakima. However, the Liver Disease

and Transplant departments at either U of O or UW might have an outreach

program that sends Hepatologists to Yakima on a scheduled basis. Both UCLA

and UCSF have that kind of program to cover Nevada and parts of California

where there are no major medical centers. Your best bet would be to call

the universities and ask them if they have something like that and

alternatively, if they can refer you or see you. You might need a referral

from your current doctors, but not all med centers are rigid about that.

Scripps took me without a referral because I faxed all of my lab reports

and medical records to them and let them decide if they should and would

see me.

I don't know much about reflux. My mother-in-law has it and she has been

very ill with symptoms similar to what you've described. Hers is under

control now through diet and other changes like sleeping with her upper

body elevated and not eating after 6:00 PM, with frequent small meals all

day. She also takes Prilosec but I don't know what else. She had

considerable pain, vomiting and diarrhea before they started treatment.

Reflux, I understand, can become very severe but not always. With your

other complications, I would be concerned about it.

This " stress " business is a pain in the fanny and a physician's cop-out a

good part of the time. That's another way of saying " I don't know " .

Stress is a normal part of life and people in good health weather massive

stress and get along fine. People with chronic disease, on the other hand,

usually are negatively affected by stress. So, you might say, failure to

treat your medical problems has increased your stress, thus increased your

problems. So, the doctor is right in a roundabout way. Stress can have an

negative, physical effect on your body and even precipitate life

threatening conditions. But, few physicians are that versed in these

complexities, or if they are, they fail to consider them.

Vomiting all day and the inability to hold down even water sounds very

dangerous to me. Can you go to a local ER? That might be a good idea.

They will run tests independent of whatever has been done in the past and

sometimes a new view can be to your advantage. But, it's a grab-bag.

Maybe you'll get the right attention, maybe not. I've seen some horrifying

ER flubs and some great reactions.

I hope that by the time you read this you've had some serious medical

attention for whatever's going on.

Take care,

Geri

[Guest guest]

,

I don't know much (like almost nothing) about the meaning of the various

lab values. Others in this group are very knowledgeable and I hope someone

can answer your questions.

My labs were elevated in October 1997, a month before I was hospitalized.

They caused a (true blockhead) doctor in Las Vegas to order an ultrasound,

which showed a greatly enlarged gallbladder, but he took that to mean I

didn't have a heart condition (don't ask me why this was relevant to

anything) and did nothing more. I frantically located another doctor who

ran the same tests, elevations were similar, though by then my feet were so

swollen from edema I could hardly find a pair of shoes to wear and it was

painful to sit upright. A CT scan confirmed everything shown in the

ultrasound and by mid-November I was hospitalized and had a liver biopsy,

ECRP and a tap of the abdominal fluid (to check for bacterial infection)

the next day.

I was diagnosed with AIH very quickly and my labs were never as high as

those you've related. I don't know if I just ended up with a great group

of doctors or if my symptoms were too typical to doubt the ultimate

diagnosis. The original diagnosis was PBC, changed to AIH by the first

Hepatologist I saw (from UCSF.)

I guess my roundabout point is, if your labs are elevated, it would

indicate the need for an ultrasound and/or a CT scan now - not just a

review of previous tests. Have you had one since you've been so sick

recently? I'm only basing what I'm saying on the reactions my doctors have

to changes in symptoms.

My GGTP is always elevated. Has been for two years. Alk P usually is. I

think it indicates liver damage but not necessarily active inflammation but

someone else would have to tell you what it really means. My doctors

always says, " Your elevations are to be expected. We already know you have

liver disease. " But, they also know how serious it is because they did a

biopsy.

Could be the delay in getting a biopsy is because they can't schedule a

quick appointment. At first, the earliest they could get me in was three

weeks in the future. Only when they worried I might be going into liver

failure did they take me in on an emergency basis. I hope by now some of

the bits and pieces are falling into place for you.

Let me know if you're feeling better.

Take care,

Geri

[Guest guest]

JODY,

SO WHAT DOES THAT MEAN IF THOSE ARE ELEVATED?

THANKS...

MONICA

[Guest guest]

Jody,

But, have you been diagnosed with anything?

[Guest guest]

Monz, I have been scared by docs three times. I have a shadow on my lung,

docs were sure I had lung cancer and wanted to crack my chest open. I

refused. After a neeled biopsy of lung it was decided it is not cancer!

Meanwhile I was making preparations for dying.

Second time docs saw spots in my liver and spleen and were sure I had liver

cancer. Again I started to think in terms of my final days on earth.

The third time is this liver disease thing. First they said I had pbc and

would need a liver transplant. Well, that sure scared me! Then they said

it is just fatty infiltrate. Now they are saying could be NASH. What an

emotional roller coaster.

J

>From: MONZ18@...

>Reply- onelist

> onelist

>Subject: Re: [ ] LABWORK

>Date: Thu, 21 Oct 1999 22:20:50 EDT

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>

>Well, the nurse just called, she said that my liver function tests dropped

>back to normal except for one and she woudn't tell me which one. Oh and

>the

>lab FORGOT to run one test, so the dr. asked for that one and he wants to

>see

>me to discuss this and see what is next....I AM SOOO ANGRY! HE scared me

>last week and now is telling me I am NORMAL? That doesn't explain how I

>feel!!!

>

>Any suggestions or thoughts?

>

>Thanks!

>

>

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

[Guest guest]

Well, the nurse just called, she said that my liver function tests dropped

back to normal except for one and she woudn't tell me which one. Oh and the

lab FORGOT to run one test, so the dr. asked for that one and he wants to see

me to discuss this and see what is next....I AM SOOO ANGRY! HE scared me

last week and now is telling me I am NORMAL? That doesn't explain how I

feel!!!

Any suggestions or thoughts?

Thanks!

[Guest guest]

just part of the inflammation process. Thats all I

know about it really..I just know it indicates the

biliary system..sorry I dont know more

Jody

--- MONZ18@... wrote:

> JODY,

>

> SO WHAT DOES THAT MEAN IF THOSE ARE ELEVATED?

>

> THANKS...

>

> MONICA

>

>

------------------------------------------------------------------------

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to

> -subscribeonelist

> 2.) To UNsubscribe send to

> -unsubscribeonelist

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> -digestonelist

> 4.) Normal e-mail format send to

> -normalonelist

>

<HR>

<html>

>

=====

Jody Compton

Dance like no one is watching. Love like it will never end.

In search of answers..

[Guest guest]

Jody,

<<From: Jody Compton Subject: Re: LABWORK

from what Ive read..alk phos and ggt represent the

biliary system of the liver. those are the ones which

are always elevated on my reports.

Jody >>

Isn't GGT the same as GGTP? Not sure because different labs show different

terminology sometimes. anyhow, to my knowledge, my bile ducts are okay, yet

my GGTP is always elevated. I assumed that this just indicated liver

damage, but maybe not? I do lose track of what these things mean since

there is such a broad range in values, depending on which type of liver

disease or even which type of AIH we have. Alk P I've never understood.

My brother, however, who had pancreatic cancer, had elevated Alk P for a

long time before his disease was diagnosed and when the VA was claiming

that he had a " minor " ulcer. I thought that Alk P indicated inflammation?

I need a cheat sheet.

Take care,

Geri

[Guest guest]

SUSAN,

THANK YOU FOR SHARING YOUR EXPERIENCES. MY PROBLEM NOW IS THAT TWO OF THE

NUMBERS ARE STILL ELEVATED BUT I FEEL LIKE TOTAL CRAP....DON'T KNOW WHAT THEY

ARE GOING TO DO NOW....STILL WAITING FOR THE DR TO CALL AND TELL ME WHEN TO

COME IN AND WHAT HE THINKS IT MIGHT BE. THE WAITING IS THE WORST!

THANKS AGAIN!

MONICA

[Guest guest]

Barbara,

Thanks for the info. I am waiting for the dr. to call....supposedly I am

supposed to come in so he can discuss my labwork with me. Also, the lab

forgot to process one so he had to reorder it....I am impatiently

waiting....the brown around my eyes seems to have gotten worse...I am getting

tired of people telling me I look like s---!!

Anyway...thanks again!

[Guest guest]

,

I was reading back over your e-mails earlier in the week. You can really

be pleased that the test results are back to normal. It may be that one

of the drugs or herbs you were taking was damaging your liver and now

that you have stopped taking it, some of the numbers are back to normal.

ALT and AST values are usually the first to return to normal, indicating

that the liver is no longer being damaged. You would still have some

numbers abnormal and feel bad because your liver is still damaged and

needs time to recover.

Anyway, that's my two cents.

MONZ18@... wrote:

>

> From: MONZ18@...

>

> Well, the nurse just called, she said that my liver function tests dropped

> back to normal except for one and she woudn't tell me which one. Oh and the

> lab FORGOT to run one test, so the dr. asked for that one and he wants to see

> me to discuss this and see what is next....I AM SOOO ANGRY! HE scared me

> last week and now is telling me I am NORMAL? That doesn't explain how I

> feel!!!

>

> Any suggestions or thoughts?

>

> Thanks!

>

>

>

>

[Guest guest]

Hi ,

I hate to say it sounds` like liver failure to me same symptoms I had. Blood

work was way off and screwey. I went to the emergency room three times and

sent home saying I had hepatitus. The 4th visit to ER and a different

hospital found my problem not really any time to soon because I damned near

died while they made up their minds. Plus it took 2 years of me not feeling

ok to find why I slept soo many hours, let us know what happens? Good luck

Gayle