@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?
Hi everyone, I would strongly suggest caution with turmeric. Natural turmeric (kitchen root you peel and cook) is fine, but beware of turmeric suppléments : potentiated with pepper - thus really assimilated - they strongly relieve joint pains, but made my ALAT jump in one week from 50 to 1200. Stopping the supplément allowed my ALAT to fall to 800 in only 3 days. Had to double my medication to rebalance my ALAT. My doctor (Internal medicine Professor) wanted to write a paper on it when he noticed such paper had already been published. We decided to ban turmeric supplements, and since then, apart from magnesium which I deeply need to to medication depletion, I stay away from supplements. I have AIH type 3 since 2017. When I took turmeric I was treated with Cellcept (Mycophenolate Mofetil) plus Prednisone after I became suddenly intolerant to Azathriopine (missing one day of treatment was enough to trigger the immediate vomiting after intake of the pill).
Now happily under Tacrolimus (1mg every 12 hours) (couldn't bare anymore the mood effects of Cellcept and Prednisone, I was too jumpy, and easily angry).
Best of luck to everyone.
Hi everyone, I would strongly suggest caution with turmeric. Natural turmeric (kitchen root you peel and cook) is fine, but beware of turmeric suppléments : potentiated with pepper - thus really assimilated - they strongly relieve joint pains, but made my ALAT jump in one week from 50 to 1200. Stopping the supplément allowed my ALAT to fall to 800 in only 3 days. Had to double my medication to rebalance my ALAT. My doctor (Internal medicine Professor) wanted to write a paper on it when he noticed such paper had already been published. We decided to ban turmeric supplements, and since then, apart from magnesium which I deeply need to to medication depletion, I stay away from supplements. I have AIH type 3 since 2017. When I took turmeric I was treated with Cellcept (Mycophenolate Mofetil) plus Prednisone after I became suddenly intolerant to Azathriopine (missing one day of treatment was enough to trigger the immediate vomiting after intake of the pill).
Now happily under Tacrolimus (1mg every 12 hours) (couldn't bare anymore the mood effects of Cellcept and Prednisone, I was too jumpy, and easily angry).
Best of luck to everyone.
@agathe, I would like to send you my belated Welcome to Mayo Connect. I don't usually visit this Support Group because I am a liver/kidney transplant recipient and spend most of my time in the Transplant Support Group. I am glad that I saw you post! You shared your experience with Natural tumeric and as a result made the suggestion to use caution about using certain supplements.
This is such an important message! I am happy that you were able to work with your health care provider and determine a plan that works for you!
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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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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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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?
-
Like -
Helpful -
Hug
1 ReactionHi everyone, I would strongly suggest caution with turmeric. Natural turmeric (kitchen root you peel and cook) is fine, but beware of turmeric suppléments : potentiated with pepper - thus really assimilated - they strongly relieve joint pains, but made my ALAT jump in one week from 50 to 1200. Stopping the supplément allowed my ALAT to fall to 800 in only 3 days. Had to double my medication to rebalance my ALAT. My doctor (Internal medicine Professor) wanted to write a paper on it when he noticed such paper had already been published. We decided to ban turmeric supplements, and since then, apart from magnesium which I deeply need to to medication depletion, I stay away from supplements. I have AIH type 3 since 2017. When I took turmeric I was treated with Cellcept (Mycophenolate Mofetil) plus Prednisone after I became suddenly intolerant to Azathriopine (missing one day of treatment was enough to trigger the immediate vomiting after intake of the pill).
Now happily under Tacrolimus (1mg every 12 hours) (couldn't bare anymore the mood effects of Cellcept and Prednisone, I was too jumpy, and easily angry).
Best of luck to everyone.
-
Like -
Helpful -
Hug
2 Reactions@agathe, I would like to send you my belated Welcome to Mayo Connect. I don't usually visit this Support Group because I am a liver/kidney transplant recipient and spend most of my time in the Transplant Support Group. I am glad that I saw you post! You shared your experience with Natural tumeric and as a result made the suggestion to use caution about using certain supplements.
This is such an important message! I am happy that you were able to work with your health care provider and determine a plan that works for you!
I hope you continue to do well ❤️
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Like -
Helpful -
Hug
1 Reaction