jbrule
New Member
Posts: 13 
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on May 29, 2016 18:20:10 GMT -5
Hi all,
I posted a while ago about my elevated liver enzymes. They have gotten worse, I don't know for sure if my surgery is the culprit but my feeling is that it is. I have gone off all supplements for the past two weeks and it has not helped yet. My vitamin D was high at 129, so I thought maybe I was over taxing my liver with vitamins. I had mild jaundice this week but bilirubin levels are normal as of Friday.
AST 5/13 147 5/19 67 5/27 142
ALT 5/13 211 5/19 119 5/27 152
All other tests fell into normal range all 3 times, albumin was 4.3 this last time.
I am scared, I'm not going to lie. I have found research papers talking about this happening with the DS but it's usually within a few months of surgery, not years later. I also read that if this starts to happen they recommend reversing the surgery.
I need you smart people to help me figure this out. What else could it be?
I'm supposed to get an ultrasound but I'm thinking I might ask to just go straight to an MRI. They haven't wanted to do an MRI so far. This has been going on for 2 years on and off.
I don't see how I could have fatty liver, I didn't at surgery. My cholesterol is actually too low last checked at 117. I'm waiting on my latest lipids to come back.
I need to get this figured out!!! I can't stand it any longer! My liver enzymes a few months post op were both 19!
I also don't have my gallbladder and I might have had 1 drink in the last 6 weeks. I started protein shakes after I was posting here last in September. Was doing two a day. Have stopped that as well as my vitamins. Zero tylenol use, very rare ibuprofen use. Had hepatitis tests done Friday and all came back negative.
I keep thinking of things to add. On the 13th about an hour before my labs, I had Dysport injections (basically Botox). My doctor thought that could have been part of the problem but that was 2 weeks ago.
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Post by OnMyWay2Thin on May 31, 2016 6:53:36 GMT -5
This is troubling, I would be feeling the same way. As a matter of fact, a couple months ago, my liver numbers were high but I cut out the Tylenol and it returned to normal. About to go for my blood test now and wondering if it will be the same.
I'm sure you have discussed this with your surgeon or the doctor who handles any DS questions you have. What does he or she have to say about it? I think it's very hard trying to figure it out and you're doing the right thing asking the vets on here. Keep researching and asking questions, you'll get to the bottom of this...
Please keep us posted. I'm hoping some of the individuals I consider experts on here may have some answers for you.
Kelly
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Post by Melinda on May 31, 2016 8:45:39 GMT -5
I would be concerned, too, but not too quick to blame the DS. My GI group has a liver specialist. I'd see if you can find one. For instance, I have hypothyroidism and that's a big culprit of elevated liver enzymes. Here are some others:
A wide range of health problems can lead to elevated liver enzymes.
Some common causes include:
•Adrenal insufficiency (inadequate levels of hormones released by the adrenal gland)
•Alcohol abuse
•Alpha-1-antitrypsin deficiency (a disorder caused by defective production of the glycoprotein alpha-1-antitrypsin)
•Autoimmune disorders of the liver and bile ducts, such as autoimmune hepatitis
•Celiac disease
•Diabetes
•Elevated triglycerides (fat tissues)
•Excessive use of certain herbal supplements, such as comfrey, kava, pennyroyal, and skullcap
•Hepatic steatosis and steatohepatitis, and non-alcoholic steatohepatitis (NASH)
•Infections such as viral hepatitis and mononucleosis
•Medications including certain nonsteroidal anti-inflammatory drugs, cholesterol-lowering medications, antibiotics, anti-seizure medications, and acetaminophen
•Metabolic liver disease such as hemochromatosis and Wilson’s disease
•Muscle disorders
•Obesity
•Thyroid disorders
•Tumors of the liver or bile ducts
So as you can see, there are plenty of other things that can cause it to rise. I also have auto-immune issues, such as rheumatoid arthritis. There are many things that can do this. Also, a year later, my liver enzymes can be perfectly normal. Try to find a liver specialist would be my #1 goal. Good luck!
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on May 31, 2016 12:55:52 GMT -5
I'm seeing my surgeon this afternoon. I'm hoping he might have some good answers. They won't help me unless I go in and it's an hour drive. I do plan on finding a good GI doctor as well and I'm hoping my surgeon will be willing to work with them.
Of that list so little applies to me. I have not been tested for Celiac or other autoimmune disorders yet, an ultrasound or MRI should show fatty liver or tumors. Other than that, my glucose was fine, they tested my thyroid in September, Triglycerides are 50ish.
I will definitely keep the board posted. I think it's important to share all of this info!
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on May 31, 2016 18:39:20 GMT -5
My surgeon didn't have a lot to offer me. He did say I am the first person he has ever seen with high vitamin D and that could be a sign of liver malfunction. He was going to suggest an MRI until I told him I was getting an ultrasound in the morning.
Other than that he wants me to see a liver specialist which I already have in the works. My PCP thinks I'm being a drama queen and will not order an MRI.
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Post by newyorkbitch on Jun 1, 2016 4:49:27 GMT -5
My surgeon didn't have a lot to offer me. He did say I am the first person he has ever seen with high vitamin D and that could be a sign of liver malfunction. He was going to suggest an MRI until I told him I was getting an ultrasound in the morning. Other than that he wants me to see a liver specialist which I already have in the works. My PCP thinks I'm being a drama queen and will not order an MRI. Get an MRI with spectroscopy. Do not get a liver biopsy before getting an MRI with spectroscopy. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 2, 2016 13:16:07 GMT -5
My surgeon didn't have a lot to offer me. He did say I am the first person he has ever seen with high vitamin D and that could be a sign of liver malfunction. He was going to suggest an MRI until I told him I was getting an ultrasound in the morning. Other than that he wants me to see a liver specialist which I already have in the works. My PCP thinks I'm being a drama queen and will not order an MRI. Get an MRI with spectroscopy. Do not get a liver biopsy before getting an MRI with spectroscopy. I'm just waiting to get my ultrasound results back and then I will contact my surgeon's office about ordering the MRI. My PCP said it's not warranted. I don't understand why having elevated liver enzymes on and off for two years makes it unwarranted. I can see my result report sitting in my health account but I can't view it until tomorrow and no one has contacted me. I guess I'm not dying anyway. Do you think it's possible to develop fatty liver after surgery? My cholesterol and triglycerides are low. I'm kind of baffled by what I can find with Dr. Google. |
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Post by newyorkbitch on Jun 3, 2016 21:19:09 GMT -5
Get an MRI with spectroscopy. Do not get a liver biopsy before getting an MRI with spectroscopy. I'm just waiting to get my ultrasound results back and then I will contact my surgeon's office about ordering the MRI. My PCP said it's not warranted. I don't understand why having elevated liver enzymes on and off for two years makes it unwarranted. I can see my result report sitting in my health account but I can't view it until tomorrow and no one has contacted me. I guess I'm not dying anyway. Do you think it's possible to develop fatty liver after surgery? My cholesterol and triglycerides are low. I'm kind of baffled by what I can find with Dr. Google. It is not uncommon for rapid weight loss to cause fluctuations in liver enzymes for a couple of years. It is highly unlikely, though not impossible, that you have NAFLD or NASH. Stop panicking. Wait for your ultrasound results. If you are still concerned, do not seek your surgeon's advice - your surgeon is not a liver specialist. Go see a liver specialist if the ultrasound warrants it. And look up the studies about DS and fatty liver.. There was a discussion here on this board about this subject a while back and I found them at that time, look for that discussion. ETA: I told you previously to get an MRI with spectroscopy so I guess you never did that. Go see a liver specialist. Your surgeon is not your PCP, is not a gastroenterologist. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 3, 2016 22:05:39 GMT -5
I'm just waiting to get my ultrasound results back and then I will contact my surgeon's office about ordering the MRI. My PCP said it's not warranted. I don't understand why having elevated liver enzymes on and off for two years makes it unwarranted. I can see my result report sitting in my health account but I can't view it until tomorrow and no one has contacted me. I guess I'm not dying anyway. Do you think it's possible to develop fatty liver after surgery? My cholesterol and triglycerides are low. I'm kind of baffled by what I can find with Dr. Google. It is not uncommon for rapid weight loss to cause fluctuations in liver enzymes for a couple of years. It is highly unlikely, though not impossible, that you have NAFLD or NASH. Stop panicking. Wait for your ultrasound results. If you are still concerned, do not seek your surgeon's advice - your surgeon is not a liver specialist. Go see a liver specialist if the ultrasound warrants it. And look up the studies about DS and fatty liver.. There was a discussion here on this board about this subject a while back and I found them at that time, look for that discussion. ETA: I told you previously to get an MRI with spectroscopy so I guess you never did that. Go see a liver specialist. Your surgeon is not your PCP, is not a gastroenterologist. Ultrasound was normal. I've been referred to a liver specialist (can only see them with referral, here at least). I won't be able to get in for 8 weeks. My PCP told me not to be concerned and I didn't need an MRI so i trusted him in September. In November my enzymes were normal. Now that they jumped so much I want to get to the bottom of it. I have read studies about the DS and fatty liver. I even printed them and took them with me to my surgeon. He thought it was very unlikely that I have it since I didn't at surgery and had no problems for 5 years. I did have a strange ongoing pain last night. It was in my right rib cage and felt like contractions that came and went. It went on for about 5 hours and then almost felt like it melted away. My surgeon did suggest that it's possible to have retained stones in my bile duct. Not sure if that is what that could feel like. So I have emailed my surgeon to see if he would still like me to get an MRI. He wanted me to get one of the bile ducts though, not sure if they can do both at the same time. |
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Post by newyorkbitch on Jun 8, 2016 11:46:36 GMT -5
It is not uncommon for rapid weight loss to cause fluctuations in liver enzymes for a couple of years. It is highly unlikely, though not impossible, that you have NAFLD or NASH. Stop panicking. Wait for your ultrasound results. If you are still concerned, do not seek your surgeon's advice - your surgeon is not a liver specialist. Go see a liver specialist if the ultrasound warrants it. And look up the studies about DS and fatty liver.. There was a discussion here on this board about this subject a while back and I found them at that time, look for that discussion. ETA: I told you previously to get an MRI with spectroscopy so I guess you never did that. Go see a liver specialist. Your surgeon is not your PCP, is not a gastroenterologist. Ultrasound was normal. I've been referred to a liver specialist (can only see them with referral, here at least). I won't be able to get in for 8 weeks. My PCP told me not to be concerned and I didn't need an MRI so i trusted him in September. In November my enzymes were normal. Now that they jumped so much I want to get to the bottom of it. I have read studies about the DS and fatty liver. I even printed them and took them with me to my surgeon. He thought it was very unlikely that I have it since I didn't at surgery and had no problems for 5 years. I did have a strange ongoing pain last night. It was in my right rib cage and felt like contractions that came and went. It went on for about 5 hours and then almost felt like it melted away. My surgeon did suggest that it's possible to have retained stones in my bile duct. Not sure if that is what that could feel like. So I have emailed my surgeon to see if he would still like me to get an MRI. He wanted me to get one of the bile ducts though, not sure if they can do both at the same time. Last time: your surgeon is not an internist or a gastroenterologist or a liver specialist. The reason he is not sure if they can do both scans at the same time? See my previous sentence. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 8, 2016 12:06:36 GMT -5
Ultrasound was normal. I've been referred to a liver specialist (can only see them with referral, here at least). I won't be able to get in for 8 weeks. My PCP told me not to be concerned and I didn't need an MRI so i trusted him in September. In November my enzymes were normal. Now that they jumped so much I want to get to the bottom of it. I have read studies about the DS and fatty liver. I even printed them and took them with me to my surgeon. He thought it was very unlikely that I have it since I didn't at surgery and had no problems for 5 years. I did have a strange ongoing pain last night. It was in my right rib cage and felt like contractions that came and went. It went on for about 5 hours and then almost felt like it melted away. My surgeon did suggest that it's possible to have retained stones in my bile duct. Not sure if that is what that could feel like. So I have emailed my surgeon to see if he would still like me to get an MRI. He wanted me to get one of the bile ducts though, not sure if they can do both at the same time. Last time: your surgeon is not an internist or a gastroenterologist or a liver specialist. The reason he is not sure if they can do both scans at the same time? See my previous sentence. I am not sure if they can do both at the same time, not my surgeon. Commas are important. I can sit and wait 8 weeks for my appointment or be proactive. You don't need to say anything if you have nothing to contribute |
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Post by newyorkbitch on Jun 8, 2016 12:09:17 GMT -5
Last time: your surgeon is not an internist or a gastroenterologist or a liver specialist. The reason he is not sure if they can do both scans at the same time? See my previous sentence. I am not sure if they can do both at the same time, not my surgeon. Commas are important. I can sit and wait 8 weeks for my appointment or be proactive. You don't need to say anything if you have nothing to contribute I am the single most experienced DSer you will ever interact with. You can choose to listen to me, or not. This is not an emergency. Wait to see a doctor who specializes in what you need. I had a bile duct issue, had an ERCP. I had pancreatitis too (pre-op). Wait for the liver specialist. Call every day to see if they get a cancellation. But it is better to wait. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 8, 2016 12:10:53 GMT -5
I am not sure if they can do both at the same time, not my surgeon. Commas are important. I can sit and wait 8 weeks for my appointment or be proactive. You don't need to say anything if you have nothing to contribute I am the single most experienced DSer you will ever interact with. You can choose to listen to me, or not. This is not an emergency. Wait to see a doctor who specializes in what you need. I had a bile duct issue, had an ERCP. I had pancreatitis too (pre-op). Wait for the liver specialist. Call every day to see if they get a cancellation. But it is better to wait. I am scheduled for an MRCP |
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Post by newyorkbitch on Jun 8, 2016 12:16:09 GMT -5
I am the single most experienced DSer you will ever interact with. You can choose to listen to me, or not. This is not an emergency. Wait to see a doctor who specializes in what you need. I had a bile duct issue, had an ERCP. I had pancreatitis too (pre-op). Wait for the liver specialist. Call every day to see if they get a cancellation. But it is better to wait. I am scheduled for an MRCP But no MRI of the liver with spectroscopy? Now it may be that you do the MRCP and figure it out. Or it may be that you will still need liver imaging. And maybe a liver specialist would tell you to do them both, or do the liver first - I don't know. But that's why it would be good to see a liver specialist before you start doing imaging. Also - I do not know if MRCP can be done with and/or without spectroscopy - this is something to ask. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 8, 2016 22:08:13 GMT -5
I am scheduled for an MRCP But no MRI of the liver with spectroscopy? Now it may be that you do the MRCP and figure it out. Or it may be that you will still need liver imaging. And maybe a liver specialist would tell you to do them both, or do the liver first - I don't know. But that's why it would be good to see a liver specialist before you start doing imaging. Also - I do not know if MRCP can be done with and/or without spectroscopy - this is something to ask. I am going to wait to do the imaging until I can see the specialist. There's no reason to waste the money on something I may not need. I think my surgeon thought since I had to wait so long to see the specialist and I was having odd pain, that it might be a stone in the bile duct. i did ask if I could do the spectroscopy at the same time but didn't get a response, just scheduling calling me. No one is willing to order it for me at this point. I did a self referral to another liver clinic today by sending in my records, maybe trying to get into two doctors will work out better for me. I'm trying to get my PCP to test me for autoimmune hepatitis, Alpha 1 antitrypsin deficiency and celiac but he doesn't want to. Since I'm in no danger, I will also wait for the liver specialist to decide if they want to do these tests. Thank you for the help. |
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Post by newyorkbitch on Jun 9, 2016 9:03:58 GMT -5
But no MRI of the liver with spectroscopy? Now it may be that you do the MRCP and figure it out. Or it may be that you will still need liver imaging. And maybe a liver specialist would tell you to do them both, or do the liver first - I don't know. But that's why it would be good to see a liver specialist before you start doing imaging. Also - I do not know if MRCP can be done with and/or without spectroscopy - this is something to ask. I am going to wait to do the imaging until I can see the specialist. There's no reason to waste the money on something I may not need. I think my surgeon thought since I had to wait so long to see the specialist and I was having odd pain, that it might be a stone in the bile duct. i did ask if I could do the spectroscopy at the same time but didn't get a response, just scheduling calling me. No one is willing to order it for me at this point. I did a self referral to another liver clinic today by sending in my records, maybe trying to get into two doctors will work out better for me. I'm trying to get my PCP to test me for autoimmune hepatitis, Alpha 1 antitrypsin deficiency and celiac but he doesn't want to. Since I'm in no danger, I will also wait for the liver specialist to decide if they want to do these tests. Thank you for the help. Great. Keep us posted. |
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Post by newyorkbitch on Jun 17, 2016 11:44:34 GMT -5
I am going to wait to do the imaging until I can see the specialist. There's no reason to waste the money on something I may not need. I think my surgeon thought since I had to wait so long to see the specialist and I was having odd pain, that it might be a stone in the bile duct. i did ask if I could do the spectroscopy at the same time but didn't get a response, just scheduling calling me. No one is willing to order it for me at this point. I did a self referral to another liver clinic today by sending in my records, maybe trying to get into two doctors will work out better for me. I'm trying to get my PCP to test me for autoimmune hepatitis, Alpha 1 antitrypsin deficiency and celiac but he doesn't want to. Since I'm in no danger, I will also wait for the liver specialist to decide if they want to do these tests. Thank you for the help. Great. Keep us posted. I spoke to a radiologist about this. Yes, typically when you do an MRI like this you do the liver and the bile ducts and pancreas all at the same time. And spectroscopy at the same time if warranted. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 17, 2016 23:41:50 GMT -5
I spoke to a radiologist about this. Yes, typically when you do an MRI like this you do the liver and the bile ducts and pancreas all at the same time. And spectroscopy at the same time if warranted. Thank you so much! The clinic I self referred myself to got me an appointment much faster and they are a better regarded hospital. I have an appointment on the 29th. I did have my liver enzymes tested again today and they are much improved. I have been off my supplements since 5/23. My AST is 38 and ALT is 65. These are my lowest levels since 2012 (without taking a liver detox supplement). I'm wondering if it might be the vitamin A or maybe my whey protein shakes. My albumin has also dropped which I don't like, it's 3.9 down from 4.3 but I haven't been doing those shakes! |
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Post by newyorkbitch on Jun 18, 2016 17:37:19 GMT -5
I spoke to a radiologist about this. Yes, typically when you do an MRI like this you do the liver and the bile ducts and pancreas all at the same time. And spectroscopy at the same time if warranted. Thank you so much! The clinic I self referred myself to got me an appointment much faster and they are a better regarded hospital. I have an appointment on the 29th. I did have my liver enzymes tested again today and they are much improved. I have been off my supplements since 5/23. My AST is 38 and ALT is 65. These are my lowest levels since 2012 (without taking a liver detox supplement). I'm wondering if it might be the vitamin A or maybe my whey protein shakes. My albumin has also dropped which I don't like, it's 3.9 down from 4.3 but I haven't been doing those shakes! You cannot stay off your vitamins. And you must not allow your protein to decrease. |
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jbrule
New Member
Posts: 13
Surgery Type: DS
Surgery Date: 08/2009
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Post by jbrule on Jun 18, 2016 22:26:37 GMT -5
Thank you so much! The clinic I self referred myself to got me an appointment much faster and they are a better regarded hospital. I have an appointment on the 29th. I did have my liver enzymes tested again today and they are much improved. I have been off my supplements since 5/23. My AST is 38 and ALT is 65. These are my lowest levels since 2012 (without taking a liver detox supplement). I'm wondering if it might be the vitamin A or maybe my whey protein shakes. My albumin has also dropped which I don't like, it's 3.9 down from 4.3 but I haven't been doing those shakes! You cannot stay off your vitamins. And you must not allow your protein to decrease. I know. I am off D right now on doctors orders anyway. I have not stopped my iron at all, can't do it but it isn't hurting my liver anyway. i also have been taking E. I was off calcium for a short time because I had to find one without D in it but am back on it, I know that doesn't hurt the liver. So that doesn't leave much that it could be if it's supplement related. It's the A, D, or the whey. I have read about people having liver issues with both A and whey. I have been making my own protein smoothies with greek yogurt, eggs, kefir, and milk. I have figured out that they are over 30 grams of protein. I will have to try a different brand of vitamin A or just cut back. My levels have mostly been fine in mid range, slightly low a couple of times. I can't continue inflaming my liver either which leaves me in a not great place. My Grandmother has just been diagnosed with liver cancer, that's the first cancer ever in my family. What kind of vitamin A do you take and what dosage? (or anyone reading this) I have been using Vitalady/biotech 100,000 IU per day. |
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