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Author Topic: Update on Liver testing  (Read 278 times)

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Offline ColdHands

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Update on Liver testing
« on: February 05, 2014, 09:08:31 AM »
Hello everyone.  I have been posting on here about my liver enzymes being super high.  (When I say super high, I don't mean a few points over high normal.  I mean 5-15 times normal, so don't start googling)

I had an AMA test (anti mitochonidrial antibodies) test to check for autoimmune liver disease.  It was positive.

With my ALP and GGT being so high and this, the chances are I have Primary Biliary Cirrhosis.  There are a few more rare options, but since my mother had this disease, the chances of me having it are pretty high.  I have an ultrasound next week (it got postponed due to our weather here in Indiana) and more blood tests to verify the diagnosis.  I have been told that I am going to be referred to GI doctor (we don't have heptologists around here that I'm aware of).  I get more blood tests the same day as my US and I see my doctor on Valentines day.

Hope that this isn't yet another holiday that I will dread due to bad memories.  I have many others. 

PBC isn't a good thing to get, but it is better than some other things I could get. 

Just trying to hold on until I get a diagnosis. 

The big thing I'm worried about is my Dad.  He went through so much with my Mom and this is bothering him greatly.

Thanks for listening
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Offline Annie

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Re: Update on Liver testing
« Reply #1 on: February 05, 2014, 10:11:14 AM »
I am very glad that you posted because I have been thinking about you.  Your last post sounded that you really needed some help.  I am so sorry that your US got postponed because I am sure you are in need of peace of mind.  I don't know much about PBC as I am afraid to google anything about liver right now as I recently had a high GGT reading of 105 which has kicked up my anxiety levels majorly.  I am getting re-tested on Monday.  My Dr. says that this is caused by alcohol but as I rarely drink it makes me wonder if it something else going on more or less on the path that you are on right now.  Anyway I hope that everything works out for you.
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Offline ColdHands

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Re: Update on Liver testing
« Reply #2 on: February 05, 2014, 10:17:48 AM »
Thanks for replying, Annie. 

GGT is a very sensitive test and can be raised by medicines and even a fatty meal.  If you take NSAIDS it could cause it too.

Is your Alk Phos high too?  Thats a red flag for PBC.  PBC is a slow progressive disease (autoimmune) where my ammune system attacks the small bile ducts in my liver and destroys them.

The medicine that is given to people with this, if you respond to it, can keep you in a stage the rest of your life, slow your progression to a crawl and keep you from ever going into cirrhosis.

I'm just in the place where I don't know what stage I'm in or if I have any liver damage.  I am hoping I don't, as the meds dont' work as well once you are in later stages.

Since my bilirubin is ok, I think I'm ok, but nothing definitive yet.

I wouldn't worry about PBC in your case, but don't let tests go.  My levels were high for over 2 years and was told it was nothing to worry about and now I may have this.  I am hoping I didn't wait too long.

PBC has a genetic component, though that isn't the only way to get it.  My mom had PBC, so that is probably why I am getting it.

take care. 
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Offline Annie

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Re: Update on Liver testing
« Reply #3 on: February 05, 2014, 10:35:25 AM »
My Dr. told me that the GGT was the only enzyme that was high and because of my overanalyzing I did not ask for a copy of my bloodwork.  Of course my mind is telling me that she just didn't tell me about the others because of my health anxiety.  You know how our minds work.  I went to see a naturopath and she put me on a very healthy diet, absolutely no sugar or bad carbs and lots of vegetables and fish and chicken.  She also gave me probiotics, a milk thistle and dandelion combo, magnesium and gaba for anxiety.  She told me about a patient she had who had extremely high GGT levels and all other levels and he was able to get them back to normal by doing the above.  It wouldn't hurt to give it a try and see what happens.  She also told me no more that two fruit a day from the low GI list.  If you do have PBC I am sure that it is an early stage and that you will live the rest of your life to be very healthy.  I wish I didn't suffer from health anxiety as people around me have told me that if they had an abnormal reading they would just go about their life and not give it a second thought.  I cannot do that as it is all consuming and all I can think about.  By Monday it will be 5 weeks of healthy eating and I am hoping that this is enough time for the levels to drop.
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Offline ColdHands

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Re: Update on Liver testing
« Reply #4 on: February 05, 2014, 11:53:36 AM »
Sounds like you are doing the right things!

I plan to try to lose weight and eat healthier too, but the list of things I should stay away from was kind of daunting.  I really can't see myself staying away from all that stuff, but during the summer I can easier.

I love fruit so staying away from fruit would be hard for me!

GGT can be raised for alll sorts of reasons.  Thats why many doctors don't use it as a test.  its only used when they suspect liver issues.  Some doctors use it as a standard test though and yours probably did. 

If you want your test results they will probably give them to you.  I had mine from the last two years sent to me so I could see how long my ALP was high.  They sent to me via email.

Of course, with health anxiety you have to weight actual health concerns against just obsessing.  It isn't easy, I know
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Offline Annie

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Re: Update on Liver testing
« Reply #5 on: February 05, 2014, 12:21:19 PM »
Thank you very much for your positive encouragement.  I haven't had a physical in 4 years so that is probably why she ordered it. I have always been super conscious about my health (because of health anxiety).  I'm not overweight, only drink a couple of glasses of wine on the weekend (though none for 18 days before the test) and go to the gym 5 days a week.  I guess that is why I am worried because if it was alcohol at least there would be a reason but with no reason I think the worst.  I am glad that you are coping because I don't think I would be able to.  You seem so strong, I really hope that you don't have anything seriously wrong.  I avoid doctors and will probably avoid them more after this.
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Offline IAMHEALTHY

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Re: Update on Liver testing
« Reply #6 on: February 05, 2014, 12:32:37 PM »
Hello everyone.  I have been posting on here about my liver enzymes being super high.  (When I say super high, I don't mean a few points over high normal.  I mean 5-15 times normal, so don't start googling)

I had an AMA test (anti mitochonidrial antibodies) test to check for autoimmune liver disease.  It was positive.

With my ALP and GGT being so high and this, the chances are I have Primary Biliary Cirrhosis.  There are a few more rare options, but since my mother had this disease, the chances of me having it are pretty high.  I have an ultrasound next week (it got postponed due to our weather here in Indiana) and more blood tests to verify the diagnosis.  I have been told that I am going to be referred to GI doctor (we don't have heptologists around here that I'm aware of).  I get more blood tests the same day as my US and I see my doctor on Valentines day.

Hope that this isn't yet another holiday that I will dread due to bad memories.  I have many others. 

PBC isn't a good thing to get, but it is better than some other things I could get. 

Just trying to hold on until I get a diagnosis. 

The big thing I'm worried about is my Dad.  He went through so much with my Mom and this is bothering him greatly.

Thanks for listening

I'm surprised. You don't have nail clubbing from this?....My doc said I had slightly elevated enzymes, now I'm worried about this aswell
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Offline ColdHands

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Re: Update on Liver testing
« Reply #7 on: February 05, 2014, 01:51:08 PM »
No I don't have nail clubbing

My nails are brittle, but they have never been overly strong.

Don't freak about PBC.  Its pretty rare.  I doubt I would have it if my mom had not had it.
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Offline MOchp

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Re: Update on Liver testing
« Reply #8 on: February 05, 2014, 04:40:42 PM »
Hi, I'm glad you came back with an update. I'm sorry it's taking you so long to have the US done. If it is PBC that you have, I hope that at least it is the "take a pill a day" type and is easily controlled. It is good that one of your test levels indicates that it hopefully will be like that. Keep us updated as you find out more.  :action-smiley-065:
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