@geedle12, My elevated liver functions alerted my PCP to refer me to a Gastroenterologist (GI) to establish a cause. After checking/ruling out - medicines (RX and, over the counter ), alcohol or illegal substances, hepatitis, HIV,..... My GI thought that AIH was a possibility due to some autoimmune family history. So he started to treat me with prednisone. I don't remember how long, but when there was no improvement in my liver function labs, he contacted a liver specialist and the next step, based on the pattern of my lab numbers, was that I should be tested for rare disease called Primary Sclerosing Cholangitis (PSC) which might have autoimmune properties. The diagnosis was made with ERCP, dye, and images. After this diagnosis, my labs were stabilized to every 3 months.
Do you have any other autoimmune conditions?
Your doctor is doing monthly blood tests and this will allow him to see right away whether you are out of remission. Has he provided any health information such as healthy eating, physical activity, avoidance/limiting alcohol, avoiding over the counter medications...?
@geedle12, My elevated liver functions alerted my PCP to refer me to a Gastroenterologist (GI) to establish a cause. After checking/ruling out - medicines (RX and, over the counter ), alcohol or illegal substances, hepatitis, HIV,..... My GI thought that AIH was a possibility due to some autoimmune family history. So he started to treat me with prednisone. I don't remember how long, but when there was no improvement in my liver function labs, he contacted a liver specialist and the next step, based on the pattern of my lab numbers, was that I should be tested for rare disease called Primary Sclerosing Cholangitis (PSC) which might have autoimmune properties. The diagnosis was made with ERCP, dye, and images. After this diagnosis, my labs were stabilized to every 3 months.
Do you have any other autoimmune conditions?
Your doctor is doing monthly blood tests and this will allow him to see right away whether you are out of remission. Has he provided any health information such as healthy eating, physical activity, avoidance/limiting alcohol, avoiding over the counter medications...?
Hello, Yes I have had every test under the sun, including liver biopsy. I also have Hashimoto's under active thyroid. My gastroenterologist couldn't figure out why my AST and ALT levels were high. I endured tests for 3 years. After testing for 3 years my gastroenterologist referred me to a doctor who specializes in autoimmune hepatitis at University of Colorado Hepatology Department. She started me on Budesonide which has brought my AST and ALT levels down to normal. I get blood test 1x a month, eat healthy, exercise, no alcohol. The only OTC drugs I take are calcium. I have never had overt symptoms i.e. feeling ill at all.
@luserm1, I was diagnosed with Primary Sclerosing Cholangitis (PSC) after doctor performed an endoscopic retrograde cholangiopancreatography (ERCP). Dye aided to get images of my biliary tree showing the telltale signs of scarring and blocking of my bile ducts.
So- I learned that I had a progressive liver disease. There was some scarring in my liver that was identified by liver biopsies. The term cirrhosis was never used until later.
After my initial 'shock' at the diagnosis, I was really comforted and impressed at the depth of knowledge that the liver specialist had. My home GI continued to monitor me, and he frequently consulted with the liver doc.
When you see the liver specialist?
I welcome any questions.
Rosemary
@rexsan20, The ERCP procedure and diagnoses for PSC that you are referring to occurred almost 20 years ago. It was my gastroenterologist (GI) who consulted with another doctor (a liver specialist) as part of his ongoing search for a diagnosis for my liver disease. The GI referred me to the liver specialist; the liver specialist okayed my GI to perform the ERCP locally; I returned to the liver specialist for the diagnosis and consult; the liver specialist released me to my GI who monitored me while continuing to consult with the liver specialist. And when my liver disease progressed to cirrhosis, I was referred to my regional liver transplant center.
My doctor wants me to have a cat scan with radioactive contrast every six months for my liver. I am curious about the ultrasound your doctor is asking for. I told my doctor no to radioactive contrast testing. Another doctor also wanted a cardiac stress test with radioactive contrast. One of these doctors said I would be dead before the radioactivity builds up enough to harm me but research states that even one of these tests leaves you with as much radioactivity in your body as some Hiroshima survivors. Do you have more information on what ultrasound your doctor recommends?
My doctor wants me to have a cat scan with radioactive contrast every six months for my liver. I am curious about the ultrasound your doctor is asking for. I told my doctor no to radioactive contrast testing. Another doctor also wanted a cardiac stress test with radioactive contrast. One of these doctors said I would be dead before the radioactivity builds up enough to harm me but research states that even one of these tests leaves you with as much radioactivity in your body as some Hiroshima survivors. Do you have more information on what ultrasound your doctor recommends?
@mayo99824, I'm not sure who you have directed your question to.
I have not any cat scans for my liver, but I have had an ERCP (Endoscopic Retrograde Cholangiopancreatography) . It involves a sedation and a scope is passed through the esophagus. A dye is injected in the biliary tubes to get an image of the bile ducts, specific to diagnosis of a particular liver disease- Primary Sclerosing Cholangitis (PSC). I don't think this is what you are referring to.
Each kind of test/scan is for a specific piece of information. Have you asked your doctor if there is any other test that would achieved the same purpose since you object to the dye? Do you know why he wants that particular test?
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@geedle12, My elevated liver functions alerted my PCP to refer me to a Gastroenterologist (GI) to establish a cause. After checking/ruling out - medicines (RX and, over the counter ), alcohol or illegal substances, hepatitis, HIV,..... My GI thought that AIH was a possibility due to some autoimmune family history. So he started to treat me with prednisone. I don't remember how long, but when there was no improvement in my liver function labs, he contacted a liver specialist and the next step, based on the pattern of my lab numbers, was that I should be tested for rare disease called Primary Sclerosing Cholangitis (PSC) which might have autoimmune properties. The diagnosis was made with ERCP, dye, and images. After this diagnosis, my labs were stabilized to every 3 months.
Do you have any other autoimmune conditions?
Your doctor is doing monthly blood tests and this will allow him to see right away whether you are out of remission. Has he provided any health information such as healthy eating, physical activity, avoidance/limiting alcohol, avoiding over the counter medications...?
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Like -
Helpful -
Hug
3 ReactionsHello, Yes I have had every test under the sun, including liver biopsy. I also have Hashimoto's under active thyroid. My gastroenterologist couldn't figure out why my AST and ALT levels were high. I endured tests for 3 years. After testing for 3 years my gastroenterologist referred me to a doctor who specializes in autoimmune hepatitis at University of Colorado Hepatology Department. She started me on Budesonide which has brought my AST and ALT levels down to normal. I get blood test 1x a month, eat healthy, exercise, no alcohol. The only OTC drugs I take are calcium. I have never had overt symptoms i.e. feeling ill at all.
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Helpful -
Hug
1 ReactionWhat is the name of the liver doctor?
@rexsan20, The ERCP procedure and diagnoses for PSC that you are referring to occurred almost 20 years ago. It was my gastroenterologist (GI) who consulted with another doctor (a liver specialist) as part of his ongoing search for a diagnosis for my liver disease. The GI referred me to the liver specialist; the liver specialist okayed my GI to perform the ERCP locally; I returned to the liver specialist for the diagnosis and consult; the liver specialist released me to my GI who monitored me while continuing to consult with the liver specialist. And when my liver disease progressed to cirrhosis, I was referred to my regional liver transplant center.
Are you experiencing a liver condition?
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Helpful -
Hug
1 ReactionMy doctor wants me to have a cat scan with radioactive contrast every six months for my liver. I am curious about the ultrasound your doctor is asking for. I told my doctor no to radioactive contrast testing. Another doctor also wanted a cardiac stress test with radioactive contrast. One of these doctors said I would be dead before the radioactivity builds up enough to harm me but research states that even one of these tests leaves you with as much radioactivity in your body as some Hiroshima survivors. Do you have more information on what ultrasound your doctor recommends?
-
Like -
Helpful -
Hug
1 Reaction@mayo99824, I'm not sure who you have directed your question to.
I have not any cat scans for my liver, but I have had an ERCP (Endoscopic Retrograde Cholangiopancreatography) . It involves a sedation and a scope is passed through the esophagus. A dye is injected in the biliary tubes to get an image of the bile ducts, specific to diagnosis of a particular liver disease- Primary Sclerosing Cholangitis (PSC). I don't think this is what you are referring to.
Each kind of test/scan is for a specific piece of information. Have you asked your doctor if there is any other test that would achieved the same purpose since you object to the dye? Do you know why he wants that particular test?