Re: Re: high ALTS

[Guest guest]

Dear Carole,

Wow, incredible that you could live through that! Why didn't the doctors

spot the rising LFT's? They couldn't get that high overnight. Didn't

they run any tests previous to getting those high numbers?

[ ] Re: high ALTS

Laneybeth-

Mine were 9000+ and 7000+ when I was dx. Can't remember which was

higher ALT or AST though. My total bilirubin was over 20. I guess

they don't count beyond 20? All I know is that is what my records

say 'over 20'. Funny part is, I wasn't even yellow then, it was two

days later when the numbers had dropped. Go figure - I don't do

anything normal! Wow, your the first one I have heard of on here

with numbers like mine. Have you just been that high once? I have

had three flares since, all in the same ranges as before. I am

amazed my liver works at all. Wow, it is so surprising to hear of

some one else with numbers like that. Were you ill for real long

before they Dx? I was for years actually before they picked up on

it. Before then I was 'just depressed' according to all the other

docs. I hope your numbers are no longer that bad now.

LOve,

Carole K

> hey all

> I was just wondering if any of your ALTs have ever reached 8000,

> because when I first went yellow and was diagnosed with AIH my ALTs

> reached over 8000.

> Thanks

> Laneybeth, Brisbane 20yrs

[Guest guest]

Carole and Laneybeth,

I cannot even imagine #'s like that! The highest I ever got was the 900's

and a bilirubin of 10. That put me over the edge...

Bless both of you!

Patty

-Original Message-----

From: toots_k [mailto:toots_k@...]

Sent: Monday, March 10, 2003 10:49 PM

Subject: [ ] Re: high ALTS

Laneybeth-

Mine were 9000+ and 7000+ when I was dx. Can't remember which was

higher ALT or AST though. My total bilirubin was over 20. I guess

they don't count beyond 20? All I know is that is what my records

say 'over 20'. Funny part is, I wasn't even yellow then, it was two

days later when the numbers had dropped. Go figure - I don't do

anything normal! Wow, your the first one I have heard of on here

with numbers like mine. Have you just been that high once? I have

had three flares since, all in the same ranges as before. I am

amazed my liver works at all. Wow, it is so surprising to hear of

some one else with numbers like that. Were you ill for real long

before they Dx? I was for years actually before they picked up on

it. Before then I was 'just depressed' according to all the other

docs. I hope your numbers are no longer that bad now.

LOve,

Carole K

> hey all

> I was just wondering if any of your ALTs have ever reached 8000,

> because when I first went yellow and was diagnosed with AIH my ALTs

> reached over 8000.

> Thanks

> Laneybeth, Brisbane 20yrs

[Guest guest]

Carole,

Your story is unbelievable! Having had an encelopathic come I can't believe

your body didn't shut down. Laneybeth, I worry about you also... The

prognosis once you are in a coma is not good.. The stories of diagnostic

disasters in this group are amazing. Makes me think we should walk around

with a definition of AIH with our insurance cards.

Patty

[ ] Re: high ALTS

Laneybeth,

Actually numbers that high are not common. My docs told me I was a

very unusual case for them. I had the worst ALT/AST numbers they had

all seen. They said most patients they had treated with numbers half

of mine were in serious encephalopathy or coma. They said it was a

miracle I was alive, let alone not in a coma. They didn't tell me

till two months later they had figured they would be losing me, and

they didn't expect the treatment to make any difference at the point

I was at. I was even pretty darn coherent - except for acting like I

had narcolepsy. They could be in the middle of talking or I could be

mid sentence, then instant snoring. They kept having to wake me up.

I did have a head ache like I have never had before - and haven't

since. I had to cover my eyes with a cloth, the pain was too much

with the light on. The first two docs I talked with in the ER I

don't even know what they looked like, never uncovered my face. Any

way, I still had no comprehension of how bad the numbers were until I

got on this support group. I would see people writing in that they

would have numbers like 150 or 200, and I would think that isn't bad

at all. Well then I saw everyone would be uptight over it so I asked

my doc about mine. I thought maybe he did use another system like

you were thinking. He said no, it's the same, mine were just

unbeleivably off the chart. What was more miraculous was at that

time, they did my biopsy, and it wasn't bad at all. Inflammation was

as bad as they count - a 4; but damage was only a 1 with

fibro...something. All I tuned into was there astonishment on how

little damage I showed. They did say it was inconclusive though due

to the level of inflammation, as the liver would build up scar tissue

as it decreased. Then every time I flared after that he would say it

was important to do another after infl. was gone, but when it was

would say it wasn't necessary. So four years now, a bunch of heavy

flares later I found a new doc, and he is doing it next month. Not

looking forward to the procedure, but looking forward to answers.

Found out my biopsy was one that is done through the ribs? Maybe

thats why it hurt so bad, that first sample they grabbed that they

said they couldn't use was probably my darn muscle tissue! So glad I

have a new doc to do it. He also said my old doc didn't do them very

frequently - he only did them on patients admitted in hospital, the

outpatients were done all the time by a couple of the other doctors.

So he obviously wasn't very skilled at it either. All I know is now

I am blessed with a wonderful doctor who has easily made me forget

that other guy. And he is taking things alot more seriously.

I was sick for a real long time. I can actually trace my symptoms

back to my early twenties, right after my first daughter was born.

The docs even think it was my faulty immune system that did in my

uterus and overies - had a hysterectomy at 25 years old. But the

real 'bad' feeling stuff goes back to when I was about thirty. I had

gotten pnumonia - in the summer no less - and it was like I never

recovered. My Doctor then (I lived In California then) had found my

LFT's to be elevated, and was doing further tests to see what was

wrong. But we were more concerned about my lungs because the

pnumonia came on so suddenly and seriously. So he was doing all

sorts of stuff to check for lung cancer, as I was (am) a smoker.

Then my daughter got sick, some family members were killed, and my

husband got a job offer in another state. So I just let it go for a

while. Once we got settled in here in Washington, I finally got all

of my yearlys lined up, and they found the LFT's high again. But,

thanks to insurance at the time, you never saw the same doctor twice,

so the next doc would just figure it was something I ate, and not

even order a follow up blood test. Then next year same thing, and on

and on. Was even sent by two of then to psychiatrist - because they

thought I was just depressed. Of course I was, I was so fatigued, I

slept at least 15 hours a day. Then got new insurance, found new

doctor, and second psych said same as first - I am sainest person he

has met. So he suggested something metabolic, my new doc thought I

had symptoms of menapause and tested hormones, and I had none! So we

figured that was the ticket. When it didn't help, after about 6

months, I tried to get back into see him, and he had left that

practice. So I put it off. That was in May of 1999. Continued to

go down hill, so tried to see one of the other docs in that practice,

but they couldn't get me in until mid August. Well, wound up in ER

end of July and they found out that my urine color was not an

infection. Had been to my gyno and he checked for infection and said

it must have been something I ate. Kept telling him my side was

hurting, and I keep getting this bulbous belly. He was not

concerned. ER doc ordered right tests, tech who did tests wouldn't

let my husband take me home. She wanted me going straight to a

doctor. They did that radioactive isotope thing, and my liver would

not 'uptake' it after a couple of hours and several laps around the

hospital. I credit that woman for saving my life. Wish I had gotten

her name, would love to send her a gift. But then they sent me to

OHSU, a universtiy hospital here in Oregon, they have an enormous

hepatology clinic. And those were the guys who thought I was dead

but too stupid to lie down. Phew...as you can see none of my verbal

brain cells have been damaged! So yeah it was a long time coming.

Now I just worry about my daughters. I know they say it does not

have familial tendencies, but my cousin died from " complications from

liver failure due to AIH " (and lousy doctors) They just don't put

that 'lousy doctors' part on the death certificate. So in this

family, we worry about it.

But, right now my girls are reasonably healthy. One is a severe

asthmatic (so no I never smoked around my kids) and the other seems

to have inherited my bad ovaries. But other wise they are good.

They are both of the mind that it would be wise not to wait too long

to have children. And they know to be checked periodically for the

ana/sma markers. I just don't ever want them to go through this.

Oh, and I am just on immuran 125 mgs a day. Been off steroids for

over a year now. My numbers hit true normal range for the first time

back in December. So now keeping fingers crossed cirrhosis is real

mild on biopsy. I figure I've got a 50/50 chance, after all I never

do anything normal!

Sorry so long folks. I will try harder next time!

Love,

Carole K

[Guest guest]

Carole,

It's true about a movie star or someone famous having the disease. Several

years back when Walter Peyton was diagnosed with PCS or PBC and needed a

transplant there was some publicity. His disease was also autoimmune.

Unfortunately he also had liver cancer and never qualified for the

transplant thus he died shortly thereafter. Not that I would ever wish this

disease on anyone. Many of us end up at University Health Centers where they

train Dr's. I have embarrassed many a resident when I was hospitalized

asking them about AIH. I have caused many red faces, the attending love it!

I always ask them to find out and come back and tell me.

I don't know if there is anything we can do... We are certainly active on

this listserv and have many experiences. I've often thought our experiences

would easily fill a book, everytime I think of writing it I get sick

again..., oh well, maybe someday.

Patty

[ ] Re: high ALTS

Patty,

It does seem the diagnostic disasters here are frequent with this

disease, doesn't it? My husband just heard some talk radio thing the

other day about things like AIH. He said the guy called them 'orphan

diseases' because we had no one out there really speaking for us. He

said he hates the thought of any one going through this, but that we

need a movie star to be diagnosed with it so someone might shed some

light on it. We don't think it is as rare as doctors say. WE have

met people in all sorts of places who know someone with it. Not to

mention my cousin had it. I think he is right though, we need

a 'name' to get us some air time some where.

Love,

Carole K

[Guest guest]

Good point, we can be the best teachers

Patty

[ ] Re: high ALTS

Paty,

When I was Dx I had to stay in the hospital for 8 days - they wanted

to make sure my numbers were going to continue decreasing. But I

know what you mean about getting the students. I would have a big

group come in several times a day. When the teaching doc would ask

something they couldn't answer I would do my Arnold Horshack

impression with my arm in the air " Oh! Oh, oh! oh! Me! Me! My turn! "

Then the doctor would call on me. I would give a nice educated

sounding answer, and impress them all with some witty comment. One

of them would always say something about not knowing and call them

self stupid. Then I or the doctor would explain how the patient can

very often no more about things because they live it everyday. And I

tell them I just read alot. They were all so wonderful though. And

very interested when the doctor would say to them to pay close

attention because depending on there specialty I may be the only case

they ever see. Oh to be so important. I was warned when they

transfered me there that they would be much more impersonal than the

private hospital, they were so wrong.

Love,

Carole K

[Guest guest]

Carole K.... a few years ago Fabres had a transplant due to AIH

or PBC....it got some publicity for a little while but has died off.

Walter " Sweetness " Peyton had PSC that developed into cancer and he died

because he couldn't be transplanted.

By the time I write this , others here have probably said the same thing

already.

What we need is for say.... Brittney Spears or Dubya to get it then we'd

see action.

BTW... I have some answers for your questions last week about the taste

in your mouth etc. but first do you have a strong odor of acetone on

your breath. I suspect you have Ketonosis which can be caused by liver

malfunctioning...liver disease can cause certain ordors on your breath

and affect your taste. It could also come out your pores i believe for

all you ladies with a nasty " man smell " ....yeuukkk, how icky.

I'll send some more thoughts on it in a while.

love jerry

[Guest guest]

Carole... that line about being dead but too stupid to lie

down.....reminded me of another one: " death is nature's way of telling

us to slow down "

love jerry

[Guest guest]

Laneybeth........ 8000 is a tad on the high side..... I just got my last

test results today and my numbers were 18 and 19

Just a little different from yours, but just to let me know I'm not

exactly perfect my billirubin was 1.6. You are very blessed to be

writing to us. Praying for better days ahead for you. Keep the faith.

love jerry