RE: annual tests

[Guest guest]

Given my experience I recommend seeing a

gastroenterologist or hepatologist who is knowledgeable about PSC. To

really see what’s happening with PSC, either an MRCP or an ERCP has to be

done.

Joe

PSC & UC –

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of skomula

Sent: Monday, February 23, 2009

12:14 PM

To:

Subject: annual

tests

Hello, My husband is due for his annual blood work next

month but I see

on here that there are test he doesnt get and should he be. He is just

seeing a family dr. The tests he gets are ALT, Alk, AST and bilirubin

which she says are slightly high but hasn't changed since 2007, should

he have other tests or are these enough to keep track of the psc. He

hasn't had any issues with illness or anything yet just fatigue which

he has had for over 10 years. All the other tests are normal except for

cholesterol. He is having his annual colonoscopy as well and is suppose

to go in twice a year for blood work but he is tough to get to the

doctor.

Also can you live without ever having any episodes or illnesses of psc

or will it eventually happen.

thanks

skomula MN

[Guest guest]

There are no black and white answers, I’m afraid. It

is very dependent on disease progression and symptoms.

That being said (I’ve been asymptomatic since 2001), I get:

Liver panel tests every 6 months - hepatic function panel (protein,

ALT, ALK, AST, bilirubin, albumin) and hemogram panel (WBC, RDW, RBC, platelets,

hemoglobin, hematocrit, etc.). The first is for PSC, the second mostly

for UC (I think). I also get an annual colonoscopy.

When I was first diagnosed, I got the above blood tests

quarterly plus annual liver ultrasound and annual bone density scan (DEXA

scan).

I’ve never had a liver biopsy (many have). I’ve

only had ERCPs “for cause” – never had an MRCP.

Joe is correct – he needs to see a hepatologist or GI who

specializes in hepatology.

The best family doctor is the one who knows his/her limits.

I have to say I’ve been more impressed with the female GPs than males in

that regard.

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of skomula

Hello, My husband is due for his annual blood

work next month but I see

on here that there are test he doesnt get and should he be…

[Guest guest]

There are no black and white answers, I’m afraid. It

is very dependent on disease progression and symptoms.

That being said (I’ve been asymptomatic since 2001), I get:

Liver panel tests every 6 months - hepatic function panel (protein,

ALT, ALK, AST, bilirubin, albumin) and hemogram panel (WBC, RDW, RBC, platelets,

hemoglobin, hematocrit, etc.). The first is for PSC, the second mostly

for UC (I think). I also get an annual colonoscopy.

When I was first diagnosed, I got the above blood tests

quarterly plus annual liver ultrasound and annual bone density scan (DEXA

scan).

I’ve never had a liver biopsy (many have). I’ve

only had ERCPs “for cause” – never had an MRCP.

Joe is correct – he needs to see a hepatologist or GI who

specializes in hepatology.

The best family doctor is the one who knows his/her limits.

I have to say I’ve been more impressed with the female GPs than males in

that regard.

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of skomula

Hello, My husband is due for his annual blood

work next month but I see

on here that there are test he doesnt get and should he be…

[Guest guest]

There are no black and white answers, I’m afraid. It

is very dependent on disease progression and symptoms.

That being said (I’ve been asymptomatic since 2001), I get:

Liver panel tests every 6 months - hepatic function panel (protein,

ALT, ALK, AST, bilirubin, albumin) and hemogram panel (WBC, RDW, RBC, platelets,

hemoglobin, hematocrit, etc.). The first is for PSC, the second mostly

for UC (I think). I also get an annual colonoscopy.

When I was first diagnosed, I got the above blood tests

quarterly plus annual liver ultrasound and annual bone density scan (DEXA

scan).

I’ve never had a liver biopsy (many have). I’ve

only had ERCPs “for cause” – never had an MRCP.

Joe is correct – he needs to see a hepatologist or GI who

specializes in hepatology.

The best family doctor is the one who knows his/her limits.

I have to say I’ve been more impressed with the female GPs than males in

that regard.

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of skomula

Hello, My husband is due for his annual blood

work next month but I see

on here that there are test he doesnt get and should he be…

[Guest guest]

Hi! I see that some other people have already answered some of your questions,

but I thought I'd chime in, too. I would agree with the others that you really

need to find a doctor knowledgeable in PSC, preferably a hepatologist or a

gastroenterologist if a hep isn't available. Family doctors just aren't trained

to deal with the issues PSC brings forward.

As far as testing goes, it sounds to me like perhaps his bloodwork should be

taken more frequently, but I'm not a doctor and don't truly know the answer to

that. It seems though that he should be regularly checked for his liver levels,

vitamin levels, calcium intake, etc. It's great that he's getting an annual

colonoscopy, but there may be other things that are important too and only a

doctor trained in PSC can really tell you for sure.

You also asked about whether or not somebody could go through life with PSC and

never experience any symptoms. I don't really know the answer to your question.

PSC (as I'm sure you know) is so incredibly different for all of us. I'd love

to think that's possible though!

Best of luck on everything!

Sandi in VA