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-   -   All other liver tests normal - but bilirubin is high?! Confused! (https://www.healthboards.com/boards/hemochromatosis/982631-all-other-liver-tests-normal-but-bilirubin-high-confused.html)

Brad521 06-02-2014 09:13 PM

All other liver tests normal - but bilirubin is high?! Confused!
 
Hi all,
I am 29/M. Former drinker, on meds for an inner ear condition (xanax/betahistine)

I recently had a bad attack of vertigo and ended up in the ER. They ran a battery of tests, and all of my LFTs came back normal EXCEPT a rather high bilirubin level both in blood and urine. I have been urinating dark a couple days. Even an ultra showed absolutely nothing. Yet I come home, go online and consult Dr. google and high bilirubin says liver failure?! :eek:

I am so confused. Is this the end, or could this be anything else?

quincy 06-03-2014 10:02 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
What other tests aside for an ultrasound have you had done?

Did you have direct, indirect and total bilirubin tests?

What exactly were the levels? There's elevated, high and HIGH like off the charts.

Curious about your vestibular condition...were you officially diagnosed with something specific?

q

Brad521 06-03-2014 11:57 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
[QUOTE=quincy;5294903]What other tests aside for an ultrasound have you had done?

Did you have direct, indirect and total bilirubin tests?

What exactly were the levels? There's elevated, high and HIGH like off the charts.

Curious about your vestibular condition...were you officially diagnosed with something specific?

q[/QUOTE]

Not sure, I had both blood and urine tested, both were high. Not off the charts, just high. Maybe about a third higher? I don't have the sheet on me at the moment.

I have Meniere's Disease. It's horrible.

Also: My symptoms have been mostly cramping/pain in the general liver area.

quincy 06-04-2014 08:12 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Yes, I hear from people I know as well as what I've read that Meniere's is horrible to live with. I have BPPV (since 11 years old in 1966), and in 1999 I had it in both ears for almost 3 years 24/7. It was a tough time. I don't have lots of attacks now, but when I'm "off", it sure affects my functioning.

Just as an aside, I heard from a friend that stinging nettle tea helped him with some of his symptoms. I think only 1 or 2 cups a day max...but I'd have to check what's recommended of that type of tea.

There are some possibilities for the high bilirubin and not the others...if you have a copy of your results (which you should for all blood and other tests for research), make a list of questions to ask the doc.

I'd advise for now to not do "exploratory" such as ERCP or liver biopsy without reason. Before all of those, I'd suggest an MRCP which is an abdominal (liver/gallbladder/pancreas) with contrast MRI.

Hang tough...I can relate to your fears, and it isn't an easy thing with no answers.

When do you see your doctor next?

q

Brad521 06-04-2014 11:19 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
[QUOTE=quincy;5295101]Yes, I hear from people I know as well as what I've read that Meniere's is horrible to live with. I have BPPV (since 11 years old in 1966), and in 1999 I had it in both ears for almost 3 years 24/7. It was a tough time. I don't have lots of attacks now, but when I'm "off", it sure affects my functioning.

Just as an aside, I heard from a friend that stinging nettle tea helped him with some of his symptoms. I think only 1 or 2 cups a day max...but I'd have to check what's recommended of that type of tea.

There are some possibilities for the high bilirubin and not the others...if you have a copy of your results (which you should for all blood and other tests for research), make a list of questions to ask the doc.

I'd advise for now to not do "exploratory" such as ERCP or liver biopsy without reason. Before all of those, I'd suggest an MRCP which is an abdominal (liver/gallbladder/pancreas) with contrast MRI.

Hang tough...I can relate to your fears, and it isn't an easy thing with no answers.

When do you see your doctor next?

q[/QUOTE]


Yeah, I am looking into one of those nettle tea things, I hear they help.

I see my GP tomorrow. having an Ultrasound this friday on my abdomen (yes another one lol) and seeing an internal medicine guy Sunday. I'm trying really hard not to google and automatically convince myself that my liver is failing at 29 and that I am dying. I also suffer from generalized anxiety disorder, so it's a really bad combo :/

So far, two different GPs do not think it's outright liver failure, so that is a bit comforting, but I am bad at listening to doctors, and have trust issues.

It's really ****** waiting for all of this. I just want an answer at this point, no matter how dismal that answer is. I'm regretting every sip of alcohol and every prescription med I have put into my body.

I do believe that I'll get answers by next week. I just hope the results aren't too bad :(

quincy 06-04-2014 09:52 PM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Hi...yeah, the liver disease possibility is always scary. I have Ulcerative colitis and it was suspect that I had Primary sclerosing Cholangitis. It's more than likely I have primary biliary cirrhosis since the autoimmune level for that is positive. But, the MRCP shows some physical showings of PSC. Once I was put on URSOdiol, my levels dropped to normal (except the AMA which is still positive). Do I have one, the other or both? don't know for sure.

I refused any invasive testing unless I turned yellow (this was in 1998, many years before the MRCP came available). So far, I've had 2 MRCPs done and the second one showed no progression..so that's good.

As for your readings, you need to make sure you've had all the pertinent blood testing done. As well, I would think that an MRI would be the best bet for you. That does an all around visual of the area...
It could be that you have stones or even sludge in your liver that are causing the high bilirubin.

Since you are going to be seeing an internist, hopefully more thorough tests will help narrow down what's going on. An ultrasound will do a more thorough study of the gallbladder, liver and surrounding area to check if there's any changes since the last one.

Having GAD is tough, and I know that worrying can make your mind go endlessly to the worst possible scenario. You have a lot to deal with. Been there, truly.
The best thing for me is to seek information and create a list of what tests are being done, why and if they're needed. Make a list of questions and be very proactive in getting the answers.

The worry or not worrying or hoping for the best doesn't change the actual outcome of what's going on. The fact that only the bilirubin is high doesn't seem like liver failure to me.
As well, liver disease doesn't mean a death sentence.

unless you were a total binge drinker or consistent addict, try not to punish yourself too harshly. The liver is actually a hardy organ. It is possible you were fighting an infection or viral infection that you got over.
Did your doctor do only one series of blood and not another of the same tests?

Are you yellow? is your urine consistently dark? and are you having problems with your stool movements or gastro problems?

Hang tough....I know there are possibilities that aren't good, but you don't have enough answers as to the why high bilirubin and no other LFTs.

Let me know how your appointment goes with the GP.
As well, make sure you get a copy of the actual results of the ultrasounds by the expert who reads them from your doctor.

q

ladybud 06-05-2014 12:27 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Brad, if your liver enzymes are normal, the high bilirubin would suggest either an obstruction of bile, like from gallstones or blockage of a duct, or it could be related to breaking down too many red blood cells, called hemolysis (less likely). I am sure the internist will get to the bottom of this, and if it is a gallstone or stricture in the duct, that is treatable. If no structural cause for the high bilirubin is found, be sure they do tests to check for hemolysis. That is related to autoimmune disorders, of which Meniere's is one, and sometimes people have more than one autoimmune disease. Please keep us posted on how you are doing. A HIDA scan is also a good test for checking out gall bladder disease.

Brad521 06-05-2014 04:44 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
[QUOTE=quincy;5295255]Hi...yeah, the liver disease possibility is always scary. I have Ulcerative colitis and it was suspect that I had Primary sclerosing Cholangitis. It's more than likely I have primary biliary cirrhosis since the autoimmune level for that is positive. But, the MRCP shows some physical showings of PSC. Once I was put on URSOdiol, my levels dropped to normal (except the AMA which is still positive). Do I have one, the other or both? don't know for sure.

I refused any invasive testing unless I turned yellow (this was in 1998, many years before the MRCP came available). So far, I've had 2 MRCPs done and the second one showed no progression..so that's good.

As for your readings, you need to make sure you've had all the pertinent blood testing done. As well, I would think that an MRI would be the best bet for you. That does an all around visual of the area...
It could be that you have stones or even sludge in your liver that are causing the high bilirubin.

Since you are going to be seeing an internist, hopefully more thorough tests will help narrow down what's going on. An ultrasound will do a more thorough study of the gallbladder, liver and surrounding area to check if there's any changes since the last one.

Having GAD is tough, and I know that worrying can make your mind go endlessly to the worst possible scenario. You have a lot to deal with. Been there, truly.
The best thing for me is to seek information and create a list of what tests are being done, why and if they're needed. Make a list of questions and be very proactive in getting the answers.

The worry or not worrying or hoping for the best doesn't change the actual outcome of what's going on. The fact that only the bilirubin is high doesn't seem like liver failure to me.
As well, liver disease doesn't mean a death sentence.

unless you were a total binge drinker or consistent addict, try not to punish yourself too harshly. The liver is actually a hardy organ. It is possible you were fighting an infection or viral infection that you got over.
Did your doctor do only one series of blood and not another of the same tests?

Are you yellow? is your urine consistently dark? and are you having problems with your stool movements or gastro problems?

Hang tough....I know there are possibilities that aren't good, but you don't have enough answers as to the why high bilirubin and no other LFTs.

Let me know how your appointment goes with the GP.
As well, make sure you get a copy of the actual results of the ultrasounds by the expert who reads them from your doctor.

q[/QUOTE]

Hey hey,
I have had dark urine several times this week. Haven't at all yesterday though. I'm currently on a 'cleanse' - plenty of lemon water, nothing but veggies and fruit, no meat or anything and NO alcohol or meds. I started feeling 'foggy' a couple weeks ago and it scared me so I completely modified my diet in accordance. The only other weird thing on my blood test was that my iron was triple what it should be.

I won't lie, in the past I have drank my fair share and partied a ton, but I always tried to dial it back. I had a four month period of really heavy drinking though, so we'll see where I stand. I don't think I'll be touching alcohol again after this scare, though.

I will request an MRI for sure. Should I ask for a liver biopsy?

Brad521 06-05-2014 05:15 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
You know Ladybud, it's weird. For years people have been suggesting autoimmune issues - but I have no idea what to ask for regarding testing! I also have been breaking out in hives randomly the last year, and I already have Celiac (which I understand is in fact autoimmune)

quincy 06-05-2014 09:07 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
OK, so you do have other issues happening such as gastro...celiac (that's a big one). You have high iron...another big issue, Hives??!! (see it's important to add those too).

Autoimmune liver disease, yes it's possible as Ladybud suggested....different game. Some of your blood testing should be geared toward that, however.

Please don't go on a specific diet of only veggies and fruit. For one, they can be high in vitamin C and iron...(both of which aren't good if you have high iron stores).
As well, if it includes spinach, that's high in oxalates which can cause kidney stones.

Yes, Meniere's is in the high belief that it's autoimmune, but the triggers and other possibilities of you having some dizziness from high iron should be taken into consideration. As well, one can have Meniere's and another vestibular issue, so if you have seen an ENT, maybe get in with a specialist who might be able to make sure it is Meniere's. It's not uncommon for misdiagnosis to happen or assumptions that it is only one thing and ignore other possibilities/causes of some of your dizziness.

Have you been tested for allergies? Have you seen an allergist?

Your body's in an overload situation, and with autoimmune, it can become a slippery slope for a while.

I wouldn't suggest a liver biopsy at this point because it's invasive. The internist should first set up other testing before it's a necessity.


Please keep us updated on the process if you're up for it.

q

ladybud 06-05-2014 09:33 AM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Brad, the additional info is helpful! Excess iron is stored in liver, and high alcohol consumption can increase iron stores but there is also a hereditary problem called hemochromatosis that you should be checked for. How high was your iron and did they measure ferritin or transferrin saturation or just serum iron? A CT scan of liver would help determine iron overload, as well as ferritin, transferrin saturation on blood tests. There are DNA tests available too for hemochromatosis. How high was your bilirubin? That is essential to consider. Hives can be part of autoimmune conditions. If you can post your specific test results, it would help. Be sure you are not taking any iron supplements or vitamins with iron as well. No liver biopsy should be done until further blood tests are done, and a biopsy may not be needed at all.

Brad521 06-05-2014 12:50 PM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Update: Nine vials of blood came out of me and an abdo ultra today. Results in 3 days. Testing for all autoimmune stuff, Lupus, Lyme Disease (docs suggestion, *shrug*) Hemochromatosis, full metabolic and liver panels, and a CBC. Apparently I'm gonna get six pages of results. Also the ultrasound was very thorough.

I will keep everyone updated. Fingers crossed! I'd like to live past 29 :/ lol

quincy 06-05-2014 03:39 PM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
Well, the point is that your doctor's taking this seriously.
A relief to hear. A white-knuckle clencher for a while.

Sounds as though much has been covered with the this testing session....if anything shows up, there will probably be another testing depending on what the possibilities of anything positive would be.
Think flow-chart process.

Please make sure you get a copy of all the results....for your files and research.

I'm curious if you are and what what supplements you're taking at this time....

thanks for the update!!

q

Brad521 06-05-2014 04:02 PM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
I'm not taking anything at the moment, save tumeric and a B complex. I have mixed feelings about milk thistle, and I don't think the science is conclusive on it yet.

Weird thing I noticed - whenever my blood is taken, for whatever reason I feel a hell of a lot better.

brosko 06-05-2014 04:25 PM

Re: All other liver tests normal - but bilirubin is high?! Confused!
 
If you feel better after your blood is taken I think this is a sign of a iron overload as the only way of getting rid of excess iron is through blood loss.


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