Re: Recommended Blood Tests

[Guest guest]

Dear " Lass "

I am so sorry that you have been diagnosed with PSC. Do you have

inflammatory bowel disease (IBD) too, ulcerative colitis (UC) or crohns?

This site can truly help answer your questions and will provide support.

The people here have much experience and knowledge and have helped me beyond

words. I am new to this group too, since June 06.

Labs results that would be important in addition to the CA 19-9 are, as you

said, liver enzymes and alkaline phosphatase, focus on creatinine,

bilirubin, (as part of a complete metabolic panel), INR, prothrombin time,

complete blood count (CBC), antinuclear antibody (ANA), mitrochrondrial

antibody (AMA), tests to rule out hepatitis and autoimmune hepatitis (A, B,

C), if they have not already been done for you. Also, I would add that due

to nutritional compromise in illness, maybe check the serum iron, total iron

binding capacity (TIBC) and B-12 levels, which if low can be corrected. You

may have had all these tests done already. If you have, then please just

disregard my message. I bet others here will add additional tests that I

have not thought of at the present.

Ask your doctor about a MELD (model for end stage liver disease) score for

you based on the results of the lab tests, specifically creatinine,

bilirubin and INR. This may help you know where you are right now in liver

compromise, if any.

Know also that many people go years without problems and/or symptoms. This

disease is erratic, and the disease will do what the disease will do,

different for eveyone with PSC. There is much hope and new advances are

coming forth in the treatment of PSC. At PSC partners you will find many

valuable sites for education and a really great brochure. Know that you are

not alone!

Sincerely,

Chris

mother of Joe (32) UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06

[Guest guest]

I was diagnosed in Aug, 98, with PSC. This came after my brother

was diagnosed with liver cancer, subsequently passing away 10 months

later at the age of 54. The doctors then went back and found out he

had PSC, then further back and found out he had ulcerative

protitis. They indicated that there was a possible link between the

ulcerative disease and PSC. My sister in law said, hey, his sister,

(me) had ulcerative colitis from the time she was 16, then had her

colon removed 20 years later. Does she still need to be tested?

They said yes, I was tested, I had an MRCP and was diagnosed with

PSC I have been on Actigall/Ursidol since that time. I

periodically have a ERCP/MRCP, liver biospies, and frequent blood

tests. Everthing has pretty much stayed the same. When I first

found this sight, I was surprised at all the complications people

were talking about this disease. I know a liver transplant is

possible in the future, but had no idea it made you so sick. I'm

not bothered by PSC at all,(although I do have an enlarged liver

illness) just bowel issues. In 86, I had surgery and now have an

ileostomy, and in April of this year, had my first issue since 86,

with my bowel. They removed my gall bladder and did exploratory

surgery to 'unwind, my small intestine. Three weeks ago, I started

having the intestinal issues again, so, obviously the 'unwinding'

didn't take so I may be looking at another surgery to remove a part

of the small intestine.

I'm glad to see the other blood tests that people have. I've had

all these blood test frequently, but not the CA19-9. Since my liver

enzymes and alkaline phosphatate test have not changed, maybe my

doctor didn't think it was necessary. FYI, my brother's enzymes and

Alk phos were always within limits.

Thanks for the info on additional blood tests.

Margaret

>

> Dear " Lass "

>

> I am so sorry that you have been diagnosed with PSC. Do you have

> inflammatory bowel disease (IBD) too, ulcerative colitis (UC) or

crohns?

> This site can truly help answer your questions and will provide

support.

> The people here have much experience and knowledge and have helped

me beyond

> words. I am new to this group too, since June 06.

>

> Labs results that would be important in addition to the CA 19-9

are, as you

> said, liver enzymes and alkaline phosphatase, focus on creatinine,

> bilirubin, (as part of a complete metabolic panel), INR,

prothrombin time,

> complete blood count (CBC), antinuclear antibody (ANA),

mitrochrondrial

> antibody (AMA), tests to rule out hepatitis and autoimmune

hepatitis (A, B,

> C), if they have not already been done for you. Also, I would add

that due

> to nutritional compromise in illness, maybe check the serum iron,

total iron

> binding capacity (TIBC) and B-12 levels, which if low can be

corrected. You

> may have had all these tests done already. If you have, then

please just

> disregard my message. I bet others here will add additional tests

that I

> have not thought of at the present.

>

> Ask your doctor about a MELD (model for end stage liver disease)

score for

> you based on the results of the lab tests, specifically

creatinine,

> bilirubin and INR. This may help you know where you are right now

in liver

> compromise, if any.

>

> Know also that many people go years without problems and/or

symptoms. This

> disease is erratic, and the disease will do what the disease will

do,

> different for eveyone with PSC. There is much hope and new

advances are

> coming forth in the treatment of PSC. At PSC partners you will

find many

> valuable sites for education and a really great brochure. Know

that you are

> not alone!

>

> Sincerely,

>

> Chris

> mother of Joe (32) UC 1987, J-pouch 1999, PSC, acute pancreatitis

03/06

>

[Guest guest]

I was diagnosed in Aug, 98, with PSC. This came after my brother

was diagnosed with liver cancer, subsequently passing away 10 months

later at the age of 54. The doctors then went back and found out he

had PSC, then further back and found out he had ulcerative

protitis. They indicated that there was a possible link between the

ulcerative disease and PSC. My sister in law said, hey, his sister,

(me) had ulcerative colitis from the time she was 16, then had her

colon removed 20 years later. Does she still need to be tested?

They said yes, I was tested, I had an MRCP and was diagnosed with

PSC I have been on Actigall/Ursidol since that time. I

periodically have a ERCP/MRCP, liver biospies, and frequent blood

tests. Everthing has pretty much stayed the same. When I first

found this sight, I was surprised at all the complications people

were talking about this disease. I know a liver transplant is

possible in the future, but had no idea it made you so sick. I'm

not bothered by PSC at all,(although I do have an enlarged liver

illness) just bowel issues. In 86, I had surgery and now have an

ileostomy, and in April of this year, had my first issue since 86,

with my bowel. They removed my gall bladder and did exploratory

surgery to 'unwind, my small intestine. Three weeks ago, I started

having the intestinal issues again, so, obviously the 'unwinding'

didn't take so I may be looking at another surgery to remove a part

of the small intestine.

I'm glad to see the other blood tests that people have. I've had

all these blood test frequently, but not the CA19-9. Since my liver

enzymes and alkaline phosphatate test have not changed, maybe my

doctor didn't think it was necessary. FYI, my brother's enzymes and

Alk phos were always within limits.

Thanks for the info on additional blood tests.

Margaret

>

> Dear " Lass "

>

> I am so sorry that you have been diagnosed with PSC. Do you have

> inflammatory bowel disease (IBD) too, ulcerative colitis (UC) or

crohns?

> This site can truly help answer your questions and will provide

support.

> The people here have much experience and knowledge and have helped

me beyond

> words. I am new to this group too, since June 06.

>

> Labs results that would be important in addition to the CA 19-9

are, as you

> said, liver enzymes and alkaline phosphatase, focus on creatinine,

> bilirubin, (as part of a complete metabolic panel), INR,

prothrombin time,

> complete blood count (CBC), antinuclear antibody (ANA),

mitrochrondrial

> antibody (AMA), tests to rule out hepatitis and autoimmune

hepatitis (A, B,

> C), if they have not already been done for you. Also, I would add

that due

> to nutritional compromise in illness, maybe check the serum iron,

total iron

> binding capacity (TIBC) and B-12 levels, which if low can be

corrected. You

> may have had all these tests done already. If you have, then

please just

> disregard my message. I bet others here will add additional tests

that I

> have not thought of at the present.

>

> Ask your doctor about a MELD (model for end stage liver disease)

score for

> you based on the results of the lab tests, specifically

creatinine,

> bilirubin and INR. This may help you know where you are right now

in liver

> compromise, if any.

>

> Know also that many people go years without problems and/or

symptoms. This

> disease is erratic, and the disease will do what the disease will

do,

> different for eveyone with PSC. There is much hope and new

advances are

> coming forth in the treatment of PSC. At PSC partners you will

find many

> valuable sites for education and a really great brochure. Know

that you are

> not alone!

>

> Sincerely,

>

> Chris

> mother of Joe (32) UC 1987, J-pouch 1999, PSC, acute pancreatitis

03/06

>

[Guest guest]

I was diagnosed in Aug, 98, with PSC. This came after my brother

was diagnosed with liver cancer, subsequently passing away 10 months

later at the age of 54. The doctors then went back and found out he

had PSC, then further back and found out he had ulcerative

protitis. They indicated that there was a possible link between the

ulcerative disease and PSC. My sister in law said, hey, his sister,

(me) had ulcerative colitis from the time she was 16, then had her

colon removed 20 years later. Does she still need to be tested?

They said yes, I was tested, I had an MRCP and was diagnosed with

PSC I have been on Actigall/Ursidol since that time. I

periodically have a ERCP/MRCP, liver biospies, and frequent blood

tests. Everthing has pretty much stayed the same. When I first

found this sight, I was surprised at all the complications people

were talking about this disease. I know a liver transplant is

possible in the future, but had no idea it made you so sick. I'm

not bothered by PSC at all,(although I do have an enlarged liver

illness) just bowel issues. In 86, I had surgery and now have an

ileostomy, and in April of this year, had my first issue since 86,

with my bowel. They removed my gall bladder and did exploratory

surgery to 'unwind, my small intestine. Three weeks ago, I started

having the intestinal issues again, so, obviously the 'unwinding'

didn't take so I may be looking at another surgery to remove a part

of the small intestine.

I'm glad to see the other blood tests that people have. I've had

all these blood test frequently, but not the CA19-9. Since my liver

enzymes and alkaline phosphatate test have not changed, maybe my

doctor didn't think it was necessary. FYI, my brother's enzymes and

Alk phos were always within limits.

Thanks for the info on additional blood tests.

Margaret

>

> Dear " Lass "

>

> I am so sorry that you have been diagnosed with PSC. Do you have

> inflammatory bowel disease (IBD) too, ulcerative colitis (UC) or

crohns?

> This site can truly help answer your questions and will provide

support.

> The people here have much experience and knowledge and have helped

me beyond

> words. I am new to this group too, since June 06.

>

> Labs results that would be important in addition to the CA 19-9

are, as you

> said, liver enzymes and alkaline phosphatase, focus on creatinine,

> bilirubin, (as part of a complete metabolic panel), INR,

prothrombin time,

> complete blood count (CBC), antinuclear antibody (ANA),

mitrochrondrial

> antibody (AMA), tests to rule out hepatitis and autoimmune

hepatitis (A, B,

> C), if they have not already been done for you. Also, I would add

that due

> to nutritional compromise in illness, maybe check the serum iron,

total iron

> binding capacity (TIBC) and B-12 levels, which if low can be

corrected. You

> may have had all these tests done already. If you have, then

please just

> disregard my message. I bet others here will add additional tests

that I

> have not thought of at the present.

>

> Ask your doctor about a MELD (model for end stage liver disease)

score for

> you based on the results of the lab tests, specifically

creatinine,

> bilirubin and INR. This may help you know where you are right now

in liver

> compromise, if any.

>

> Know also that many people go years without problems and/or

symptoms. This

> disease is erratic, and the disease will do what the disease will

do,

> different for eveyone with PSC. There is much hope and new

advances are

> coming forth in the treatment of PSC. At PSC partners you will

find many

> valuable sites for education and a really great brochure. Know

that you are

> not alone!

>

> Sincerely,

>

> Chris

> mother of Joe (32) UC 1987, J-pouch 1999, PSC, acute pancreatitis

03/06

>

[Guest guest]

I bet others here will add additional tests that I

> have not thought of at the present.

You should have a bone density measurement too. I was found to have

low bone density at 39. So calcium and exercise are important, PSC

and UC can interfere with uptake. I take 1500mg/day calcium now, and

it has 200mg vitamin D in the supplement (thanks for all who posted

about that the other day, I'm sure now that the doctor misspoke).

Also folate (1mg/day) and fish oil supplements (you'll hear more about

that here, and in the archived messages).

Martha (MA)

43, UC 1979, PSC 1992, asymptomatic

[Guest guest]

I bet others here will add additional tests that I

> have not thought of at the present.

You should have a bone density measurement too. I was found to have

low bone density at 39. So calcium and exercise are important, PSC

and UC can interfere with uptake. I take 1500mg/day calcium now, and

it has 200mg vitamin D in the supplement (thanks for all who posted

about that the other day, I'm sure now that the doctor misspoke).

Also folate (1mg/day) and fish oil supplements (you'll hear more about

that here, and in the archived messages).

Martha (MA)

43, UC 1979, PSC 1992, asymptomatic

[Guest guest]

I bet others here will add additional tests that I

> have not thought of at the present.

You should have a bone density measurement too. I was found to have

low bone density at 39. So calcium and exercise are important, PSC

and UC can interfere with uptake. I take 1500mg/day calcium now, and

it has 200mg vitamin D in the supplement (thanks for all who posted

about that the other day, I'm sure now that the doctor misspoke).

Also folate (1mg/day) and fish oil supplements (you'll hear more about

that here, and in the archived messages).

Martha (MA)

43, UC 1979, PSC 1992, asymptomatic

[Guest guest]

At my last visit, I asked about the CA19-9 test, and my hepatologist said that it's an unreliable test, that often results in false positives. These results lead them to engage in further invasive procedures that often provide more risk than benefit to the patient. Bottom line is that the University of Washington said NO when I asked for the test. Do others have different experiences? Should I demand the test? My other problem is that I'm on a maintenance plan of quarterly LFTs with visits every 6 months. My LFTs remain within a normal range, but they were also within a normal range last year when I had severe blockage (cleared via a little surgery during ERCP). I'm assuming the remaining good part of my liver (I'm at stage 2) is definitely overcompensating for the damaged part. Is this unusual? Any suggestions on how to persuade my new providers to at least do an MRCP to check for

blockages despite good blood work? Debbie in Seattle UC 1972, J Pouch 1991, abnormal LFTs 1999, PSC confirmed 2005

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

At my last visit, I asked about the CA19-9 test, and my hepatologist said that it's an unreliable test, that often results in false positives. These results lead them to engage in further invasive procedures that often provide more risk than benefit to the patient. Bottom line is that the University of Washington said NO when I asked for the test. Do others have different experiences? Should I demand the test? My other problem is that I'm on a maintenance plan of quarterly LFTs with visits every 6 months. My LFTs remain within a normal range, but they were also within a normal range last year when I had severe blockage (cleared via a little surgery during ERCP). I'm assuming the remaining good part of my liver (I'm at stage 2) is definitely overcompensating for the damaged part. Is this unusual? Any suggestions on how to persuade my new providers to at least do an MRCP to check for

blockages despite good blood work? Debbie in Seattle UC 1972, J Pouch 1991, abnormal LFTs 1999, PSC confirmed 2005

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

It is unreliable, but Mayo finds that CA19-9 over 100 has relatively

high specificity for CCA- except in PSC, where it is often elevated

due to inflammation alone. Still, if it becomes elevated, it means

more vigilance is called for, such as high res MRCP, CT, PET, and ERCP

brushings, not necessarily surgery.

I had a severe blockage in the left lobe hepatic duct sometime between

2002 and 2005, and never noticed anything. My LFTs remained the same,

and the blockage was detected by MRCP in 2005, as well as compensating

hypertrophy of the right lobe. The left is now " severely atrophied " .

It was my fault I didn't get the next MRCP in 2004, and I kick myself

because I might have been able to have it stented before it quit

working. I would strongly advocate for annual MRCP to prevent just

this sort of scenario.

The review I cited also talked about cases where there is atrophy but

no compensating hypertrophy, and they think this can happen in cases

where CCA constricts the blood supply to the liver.

Just a little ray of sunshine today...

Martha (MA)

>

> At my last visit, I asked about the CA19-9 test, and my hepatologist

said that it's an unreliable test, that often results in false

positives.

I'm assuming the remaining good part of my liver (I'm at stage 2) is

definitely overcompensating for the damaged part. Is this unusual?

Any suggestions on how to persuade my new providers to at least do an

MRCP to check for blockages despite good blood work?

>

[Guest guest]

Adding

to what Martha said, Ken’s doctor didn’t recommend he get CA 19-9

until late stage 4 – cirrhosis.

He said before that it’s pretty useless and too expensive. I think each doctor makes up his own

mind on this test.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas