Re: Alkaline Phos/GGT Levels

[Guest guest]

>

> My family hesitates to consider that I have PSC although ERCP

> diagnosed me a year ago. I have no symptoms and just had a recent

> physical that indicated I was healthy on all accounts, EXCEPT:

>

> My Alkaline Phosphatase level is still elevated = 166

>

> My GGT level is elevated = 141

>

> My Total Bilirubin is .8 (normal)

>

>

> Deborah,

It is good that you are going to a specialist for confirmation.

Second opinions are always wise. However don't be surprise to have

your diagnosis confirmed. People have a tendency not to consider

that you have a potentially life threatening illness when you may

look and feel healthy. But your ERCP and liver enzymes do point to

PSC as a likely cause. I too have had slight to moderately elevated

liver functions (primarily alk phos and GGT) for many years and

finally had a confirmatory ERCP (and liver biopsy). Since being on

URSO for nearly a year and a half my liver enzymes have been

completely in the normal range -- they had never been that stable

prior to the URSO. I am hoping that it all means that I we are in the

very early stages and will remain quiescent for a long time. I for

the most part am fairly healthy with very few symptoms of PSC

dominating my life. However, I do have fairly severly active

ulcerative colitis that for now is my main health issue.

Again, get that 2nd opinion and feel grateful that you are relatively

healthy for the time being. This group is great for getting lots of

useful info, even if you aren't in dire need of it at the time. I am

glad for the learning curve and know that when I really need it the

info will be here.

Good luck to you and keep us posted!!

[Guest guest]

Deborah,

I can't begin to know why your family might not accept the fact (or possibility) that you have PSC. I might take a guess though. Ten years ago my sister was diagnosed with breast cancer. She successfully completed chemotherapy and radiation treatment and was disease-free for six years. Then the cancer returned. This time it had metastasized to her liver. She fought the cancer for another three years and last Nov. 7th she lost the battle. My parents knew that she had cancer, but they always believed that she would beat it. Up until shortly before her death, they refused to accept the inevitable. In fact, my mother couldn't even grieve for a long time because of it. Now, there is hardly a day that goes by that she doesn't call to check on me. She talks with me frequently about the possibility of my own death. I think that now she regrets not talking with my sister about her death and her feelings.

What I am suggesting is that the thought of their dear Deborah having this serious, possibly life-threatening disease might be too much for them to accept. But then again maybe it's something else.

I quit work a little over a year ago because my health had deteriorated to the point that I couldn't do my job any more. (I'm still fighting to get Social Security Disability). I see some of my old co-workers on occasion and they say the stupidest things to me, like, "How are you enjoying retirement?" Now I know they wouldn't say that to someone that had cancer. I also know that they don't dislike me. I think they are just ignorant about my illness and haven't taken the time to understand it. I know that our members have dealt with all different reactions from family and friends. Some can't/won't believe it. Some don't believe we are really sick--we don't look it. Some have actually lost ties with family and friends.

In the early stages of this disease it can be difficult to diagnose and when you don't feel sick, it's got to be hard to believe you're sick yourself, much less convince your family. Personally, I was so sick for so long, and it took a long time to be correctly diagnosed that I thought I might be dying at times. My dx came as a relief. Now that's ironic.

Whatever might be happening with your family, I'm positive that you will feel better having that second opinion. Good luck with your ERCP. I am going in for my sixth one on Tuesday. Last year, I got pancreatitis even though I received antibiotics through an IV before hand. Might I recommend that you ask your doctor about having prophylactic anitbiotics. Take care, let us know how things go and ask any questions. Someone will have an answer.

Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

Alkaline Phos/GGT Levels

My family hesitates to consider that I have PSC although ERCP diagnosed me a year ago. I have no symptoms and just had a recent physical that indicated I was healthy on all accounts, EXCEPT:My Alkaline Phosphatase level is still elevated = 166My GGT level is elevated = 141My Total Bilirubin is .8 (normal)I am waiting for a second opinion w/ a liver specialist in Albany(January) that I trust more than the original doctor who diagnosed me. Until then, I'd appreciate your thoughts.Deborah

[Guest guest]

Deborah,

Off and on, I've had trouble accepting my illness precisely for the

reasons you mention. Except for itching, I was mostly symptom free

from diagnosis in 1994 until early this year. I had a few bouts of

minor jaundice, but that was it. I was only diagnosed because my

liver enzymes were high when I gave blood the end of 1993. Once on

Urso, my labs got close to normal. Even after stopping urso for 14

months (in order to get in a research study), my labs kept improving

until early this year. Then my labs went from normal to crazed in a

week. Within a couple months, I was on the transplant list and I was

basically disabled. The biopsy I had in 94 showed the beginnings of

cirrhosis and the imaging done earlier this year suggested the

cirrhosis had advanced significantly, along with some minor ascites

and enlarged spleen. Remarkably, the direct cause of my acute illness

earlier this year receded until I felt basically normal again by the

middle of September. Since then, I've had only intermittent symptoms -

- even my itching comes and goes (though only with medications. I am

shocked to see my lab results now -- the last two sets were in the

normal range. This is especially weird/scary considering the day

before the transplant office saw my normal labs, we were choosing

possible dates for a living donor tx.

This is an odd illness, especially when urso changes the labs so all

looks well. Even though I feel well now and my labs look good, I have

PSC with cirrhosis that is gradually ... ever so gradually

progressing.

We can remain hopeful though. As some have mentioned, there are some

on this list that have gone 30 years without a tx. Each year that

goes by, medical advances are made that make transplants and

immunosuppression more successful. At some point, there likely will

be effective treatment for PSC, especially those diagnosed before

substantial cirrhosis is present.

Second opinions are important, too. The doctor who diagnosed me was

not a specialist and, frankly, he didn't know much about this

disease. When I saw a specialist, he tentatively concurred with my

diagnosis, but the ERCP was done with too little contrast and the

biopsy slides were prepared sloppily. All the tests had to be done

again to confirm the diagnosis (I certainly hope this is not

necessary for you).

My thoughts and prayers are with you.

Philip

PSC '94. Itching daily since '93 when they thought it was cat

allergies: I had no cats, but they guessed I picked up the allergens

walking into a class or something. Better doc: PSC.

Waiting for Tx since 6/03, though labs & sx improved since then. Live

donor on standby if and when sx return.

Age 30, married 9 years, 3 children (8,4,1). PhD candidate, clinical

psychology. Hobby: Singer (w/ master's in opera) and church choir

director.