Liver Issues

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TonyaH

Guest
Andrew was just discharged after a 5 day admit to get started on iv therapy. While there initial labs (before meds were started) showed increased liver function. This has happened before, but only after he has been on antibiotics, not before they even started. They ran a liver ultrasound while we were in the hospital and it did show an enlarged liver and spleen, but nothing the doctors felt needed treatment yet..
I was just curious as to others who have had frequent high liver function lab results and enlarged liver on ultrasound..how high were your numbers? Andrew started off like three times the normal limit for liver enzymes, GGT, alk phos, etc.,. Second lab results showed lower, but still elevated numbers. I'm just wondering if this is something other clinics would treat, or if these results are typical of a watch and wait plan.
We have a great team...just curious what others have done and what the outcome has been.
Thanks!
 
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TonyaH

Guest
Andrew was just discharged after a 5 day admit to get started on iv therapy. While there initial labs (before meds were started) showed increased liver function. This has happened before, but only after he has been on antibiotics, not before they even started. They ran a liver ultrasound while we were in the hospital and it did show an enlarged liver and spleen, but nothing the doctors felt needed treatment yet..
I was just curious as to others who have had frequent high liver function lab results and enlarged liver on ultrasound..how high were your numbers? Andrew started off like three times the normal limit for liver enzymes, GGT, alk phos, etc.,. Second lab results showed lower, but still elevated numbers. I'm just wondering if this is something other clinics would treat, or if these results are typical of a watch and wait plan.
We have a great team...just curious what others have done and what the outcome has been.
Thanks!
 
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kayers3

New member
I've had elevated liver enzymes for a while. I started on Actigall (or some version of that) when I was in about 4th grade. I can't remember my last blood work results, but my liver enzymes have plateaued out for a while now. They remain elevated but have pretty much held steady since high school I think. They do tend to go up when I get sick and then will resolve again. I was on a blood pressure medicine for a while in an attempt to control varicies and prevent a bleed. That was eventually stopped as it was dropping me too low and making me tired. Starting in early college I had to go in to get my esophagus scoped to check for varicies. I have the procedure done about once a year to make sure they aren't growing.
 
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kayers3

New member
I've had elevated liver enzymes for a while. I started on Actigall (or some version of that) when I was in about 4th grade. I can't remember my last blood work results, but my liver enzymes have plateaued out for a while now. They remain elevated but have pretty much held steady since high school I think. They do tend to go up when I get sick and then will resolve again. I was on a blood pressure medicine for a while in an attempt to control varicies and prevent a bleed. That was eventually stopped as it was dropping me too low and making me tired. Starting in early college I had to go in to get my esophagus scoped to check for varicies. I have the procedure done about once a year to make sure they aren't growing.
 
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krisgabes

New member
I have very elevated liver enzyme levels too but I can't remember what they were. I was put on Actigall when I was 12 and was told I could not play contact sports because of my enlarged spleen and liver. I was also put on a blood pressure medication at that age too but I couldn't tolerate it, it was making me dizzy as well. I have varices in my esophagus which have been monitored since I was 15 or so. My doctor always told me that my levels were okay considering my liver issues.

It wasn't until last year that it was determined that I need a liver transplant. (I'm 27). My GI tried to put me back on the high blood pressure med and now I can tolerate it well. So in my opinion I think he is doing fine for current condition and you just track it.
 
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krisgabes

New member
I have very elevated liver enzyme levels too but I can't remember what they were. I was put on Actigall when I was 12 and was told I could not play contact sports because of my enlarged spleen and liver. I was also put on a blood pressure medication at that age too but I couldn't tolerate it, it was making me dizzy as well. I have varices in my esophagus which have been monitored since I was 15 or so. My doctor always told me that my levels were okay considering my liver issues.

It wasn't until last year that it was determined that I need a liver transplant. (I'm 27). My GI tried to put me back on the high blood pressure med and now I can tolerate it well. So in my opinion I think he is doing fine for current condition and you just track it.
 
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TonyaH

Guest
Thank you both for your replies. I will have to research esophageal varices, just to educate myself. I am figuring this is just something we need to watch, but was just wondering if he should be on something now to slow any progress in the future.

Kristen, I wish you the best of luck in your transplant journey!
 
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TonyaH

Guest
Thank you both for your replies. I will have to research esophageal varices, just to educate myself. I am figuring this is just something we need to watch, but was just wondering if he should be on something now to slow any progress in the future.

Kristen, I wish you the best of luck in your transplant journey!
 
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Hardak

New member
My last yearly labs came back showing "elevated liver enzymes". Also something suggestive in my blood work saying I might be more prone to bleeding issues. So far they are just saying "recheck these again next visit,".
 
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Hardak

New member
My last yearly labs came back showing "elevated liver enzymes". Also something suggestive in my blood work saying I might be more prone to bleeding issues. So far they are just saying "recheck these again next visit,".
 
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kayers3

New member
I would ask your doctor about Actigall. In what I've read about it in the past, it is unclear how exactly is helps with liver cirrhosis, but it does. I don't know if it is more clear now as to its exact role, but you can always ask if the doc thinks it is something you should start. Good luck!
 
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kayers3

New member
I would ask your doctor about Actigall. In what I've read about it in the past, it is unclear how exactly is helps with liver cirrhosis, but it does. I don't know if it is more clear now as to its exact role, but you can always ask if the doc thinks it is something you should start. Good luck!
 
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TreasureGoddess

Member
Are any of you on Ursodial for liver functions? My son's had enlarged liver & spleen & higher liver numbers (can't remember what they were though) and they have had him on the Ursodial for two years now. I'll ask about the Actigall, thanks for the info!
 
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TreasureGoddess

Member
Are any of you on Ursodial for liver functions? My son's had enlarged liver & spleen & higher liver numbers (can't remember what they were though) and they have had him on the Ursodial for two years now. I'll ask about the Actigall, thanks for the info!
 
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PatrickM

New member
My son who is now 15 was diagnosed with liver disease when he was 12. He was diagnosed due to an enlarged spleen they found on ultrasound when they were looking at something unrelated. As soon as they realized there was liver involvement they put him on Ursodiol, which is the same thing as Actigal. These meds supposedly keep their liver function tests lower, but the liver specialist told me sometimes they make the numbers lower but they don't slow the progression of the disease. Unfortunately I don't think there is a lot you can do to slow the progression. You have to keep an eye on it, they have to check his spleen size on physical exam at the clinic and perhaps annually on ultrasound. My son also had esophageal varices which he had banded. They are like small varicose veins in your esophagus and when you band them the hope is they will go away at least for a while. He has a capsule study where he swallows a capsule that has a camera in it and it takes pictures of his esophagus to see how the varices are doing.

I would definitely ask about ursodiol/actigal. I don't see why you wouldn't go on it. We have gone back and forth between seeing a GI specialist and a liver specialist. Right now we are seeing the liver guy 1x a year. Our CF MD tries to use antibiotics that aren't metabolized in the liver. If he is using something heavy duty he checks with the liver MD.

One important thing on the spleen is that if it is enlarged it is at higher risk to rupture. If you go to evoshield.com you can buy some great custom fitted spleen protection. I make my son wear it for any sport he is at risk to get hit in the spleen in any way, baseball, soccer, snowboarding. It resembles an under armor shirt and has a pocket on the side and you custom fit this gel pad to your body and it hardens and protects you. You can ask your MD, maybe your son's spleen is only slightly enlarged so he may be ok.

I wish you the best. I never knew liver disease was something I had to worry about. UGH!

Tara
 
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bethylove

Guest
I've had an enlarged liver/spleen since I was about 11/12. I was put on Actigal (also known as Ursodiol) and that was that. My enzyme levels decreased but were still slightly elevated. They are stable at a normal level today. Although, I have since stopped taking things with acetaminophen in them and instead switched to ibuprofen. I still see elevation with acetaminophen products.

A few years back after an endoscopy it showed I had some esophageal varices. My large liver/spleen were pushing up the acid in my stomach and eroding the lining in my esophagus which led to exposed blood vessels basically. The threat is they can burst and that can be a very dangerous bleed. Typically with EV they band them. (imagine these little rubber bands similar to the ones on braces) Luckily, after being put on a strong antacid my healed naturally and 2 years later,were gone completely.

All in all, my liver issues never make me feel overwhelmed or different. It was more like, one more thing added to the list! haha. I did gymnastics, cheerleading, and participated in all the gym sports in school without taking any precautions for my enlarged spleen.

The only other thing I think I should throw out there since you mentioned Andrew was doing IV's-- when I had IV's I always make sure I have a few bags of extra saline fluid to just run to help my liver flush out the drugs. If not, they tend to elevate. =)

I wouldn't worry. Just keep an eye on the levels.
 
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lilmac7

New member
Hmm, interesting...make me want to go get checked now. I've heard of and taken a suppliment by Himalaya as preventative when I'm taking creatine for bodybuilding but I've read some real good things on it online. It might be worth a try and then get tested periodically while on it to see if it is actually doing anything. Here it is if anyone is interested http://www.himalayahealthcare.com/products/liv_syrup.htm
Edit: Oh and there's studies available to red in that link also. I just realized that. I can't say about the authenticity of thm though but I can say this suppliment seems to be talked about quite a bit in the bodybuilding forums that I've been on.
 
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LittleLab4CF

Super Moderator
From a long term perspective most CFers that have high liver enzymes. It is a common CF complaint in other words a common symptom of CF. It is the old saw of thick mucous navigating poorly through the liver. Bile is important in digesting fats including extracting fat soluble vitamins. For most CFers the gall bladder is removed at an age considered too young. I had gall bladder attacks constantly until at 32 they finally removed it. Maybe younger patients can chime in on GB removal even younger. Knowing now what I do, it could have cut down on my pancreas atrophy. Maybe not.
 
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