Liver Disease and Confusion

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theravenousR
New Member


Date Joined Feb 2016
Total Posts : 2
   Posted 2/27/2016 10:46 PM (GMT -6)   
I posted this in another forum, and, due to its length, I am copying and pasting with an update at the end discussing my most recent doctor visit. Much appreciation to anyone willing to read and comment:

Hello, everyone. I apologize in advance for the long post. I have been dealing with liver problems for the past 2 years, and time has only served to give me more questions and fewer answers. I have seen numerous doctors and specialists, and each has given me contradictory information, or no information at all. I hope that by turning to other sufferers, I might shed a little light on my issues.

For years I was addicted to painkillers and alcohol. I am a 28-year-old male, and from years 18 to 26 I put my body through a hell of a beating. I am under no illusions that my problems are anything but self-created. I had a BMI of 32, ate junk food and energy drinks, got zero exercise, drank beer every day, smoked cigarettes and popped pills.

In 2014 I began having symptoms consistent with liver failure. I became extremely fatigued, had trouble getting up in the morning, trouble staying awake, and yet I couldn't sleep properly. An odd combination. The right side of my abdomen felt . . . strange. I began having pain, itchiness, and nausea while eating. Also some mental fogginess/lightheadedness and irritability.

I went to the emergency room because I didn't have health insurance, and was diagnosed with elevated liver enzymes after a blood test and gallstones after an ultrasound. The doctor seemed to think my elevated LFTs were a result of excessive acetaminophen consumption, and that my values would return to normal upon abstinence.

Fast-forward to now. I have a BMI of 23.7. I haven't touched alcohol or pills in 2 years. I eat a diet so healthy that I am routinely mocked  by friends and family (lighthearted mocking). I take daily vitamin and milk thistle supplements, and eat all the foods supposed to help the liver: garlic, lemon, avocado, grapefruit juice, spinach, broccoli, walnuts, etc. I exercise daily and sleep . . . as well as I'm able. Physically, I feel remarkably better.

But my last blood test showed higher elevations of liver enzymes than that day at the hospital. To my touch, my liver feels enlarged; significantly so. ANY prescription medication seems to cause my liver to enlarge further, and I am overly sensitive (again, so it seems) to large quantities of protein.

I have been told everything from: "Your liver is fine," to "One more sip of alcohol and you'll need a liver transplant, which is a death sentence because your insurance doesn't cover elective procedures." Most healthcare professionals I see are simply confused or dismissive. No one has told me, even in basic terms, what diet or exercise regime to follow. I have been told more times than I can count to quit alcohol--which I have done long since. I guess they don't believe me, but the fact that my results make them think I'm still drinking when I know I'm not terrifies me. 

The single bad habit I haven't yet kicked is smoking (that and too much coffee). The only explanation I'm left with--pure self-diagnosis here--is that my liver is irreversibly damaged. Of the signs and symptoms indicating cirrhosis, the only one I seem to possess is Terry's nails (my fingernails are white with the band at the edges). But one symptom is enough, I guess.

Here is a summary of my bloodwork by date:

ALT(SGPT):
8/12/14 - 186 IU/L, Ref. 0-44
10/13/14 - 102
10/1/15 - 92
11/12/15 - 147, Ref. 9-46

AST(SGOT):
8/12/14 - 104 IU/L, Ref. 0-40
10/13/14 - 49
10/1/15 - 69
11/12/15 - 62, Ref. 10-40

Bilirubin, Total:
8/12/14 - 2.0 mg/dL, Ref. 0.0-1.2
10/13/14 - 1.6
10/1/15 - 1.8
11/12/15 - 1.4, Ref. 0.2-1.2

Alkaline Phosphatase:
8/12/14 - 104 IU/L, Ref. 39-117
10/13/14 - 113
10/1/15 - 119
11/12/15 - 145, Ref. 40-115

I have twice been given the hepatitis panel; negative both times. I was vitamin D deficient, but have since reached normal ranges due to supplements. The only other abnormality to note is:

TSH:
10/1/15 - <0.006, Ref. 0.450-4.500

A shockingly low number, and the first time it was outside normal ranges; on my most recent test, it was normal again. T4, Free(Direct) has always been normal. I almost wonder if this was a mistake or fluke. And I have no idea how or if the thyroid is affected by the liver.

Again, sorry for the long post, but I wanted to be thorough. Any comments or advice would be much appreciated. My doctors are evasive and contradictory, and my low-class health insurance means I get shuffled between new doctors repeatedly, with large gaps between visits. I just don't know who else to talk to.

UPDATE: I finally had an appointment with the new PCP I was given. After a quick inspection, he confirmed what the other doctors never told me: My liver is very enlarged. "Hanging down where it shouldn't be," is how he described it. He sent me for blood tests and an ultrasound. I am awaiting the results of the ultrasound, but here are the blood test results:

2/15/16:
ALT - 36, Ref. 0-44 IU/L
AST - 27, Ref. 0-40 IU/L
Alkaline Phosphatase - 73, Ref. 39-117 IU/L
Bilirubin - 2.0, Ref. 0.0-1.2 mg/dL

For the first time in nearly two nears, apropos of nothing, my enzymes are with normal ranges -- except for the bilirubin. I don't know what that means, but instead of feeling relieved, I feel even more panicked. The only other portion of the blood test that was abnormal was my cholesterol -- and it was low. Really low.

Cholesterol, Total - 99, Ref. 100-199 mg/dL
Triglycerides - 105, Ref. 0-149 mg/dL
HDL Cholesterol - 27, Ref. >39 mg/dL
VLDL Cholesterol Cal - 21, Ref. 5-40 mg/dL
LDL Cholesterol Calc - 51, Ref. 0-99 mg/dL

Now, I have had an extremely low-fat diet for the past year and a half (new doctor, as usual, didn't believe me, assured me I would have high triglycerides, and told me what to expect from my "new" low-fat diet), but these numbers kind of scare me, considering what I've read regarding advanced liver disease and the liver's ability to produce cholesterol.

I'm baffled as to my suddenly normal liver enzymes. I've had fasting blood tests before, of course, but the only thing I did differently for this one is not smoke for 12 hours leading up to it. No one ever told me to avoid smoking before a blood test, and everything I've read says smoking should have no effect on blood tests -- except for blood-nicotine level, of course. I just wanted to see if it did anything. And now I'm more confused than ever. The only other thing I did differently was quit my milk thistle supplement a few days before the test. Felt like it wasn't doing anything anyway, so why bother?

My liver is, of course, still grossly enlarged. I swear its size affects my breathing, but that's likely psychological. I wait with trepidation for my ultrasound results -- but who knows if I'll get any answers? Just wanted to see if any other liver disease sufferers had any input. I know none of you are doctors, but I'm so tired of not being helped by my doctors than I need additional input. Thank you so much for anyone who read this essay!

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/28/2016 10:36 AM (GMT -6)   
Hi theravenousR,
Welcome aboard and a big congrats on 2 years of sobriety!
As I recall (I'd have to look it up) the differential diagnosis for hepatomegaly (enlarged liver) has a dozen or more causes/conditions.
By far and away the most common cause, particularly with respect to your history, is alcoholic hepatomegaly. The ultrasound results should give you some, maybe a lot of info re: firming up a diagnosis. It'd be nice if your doc had ordered a fibroscan...a newer, high-tech ultrasound that can differentiate tissue density with much more specificity than the ordinary us and thus tell a great deal about liver staging...fibrosis/cirrhosis, etc.

As I said, congrats on stopping the pills and booze and on getting back to a normal BMI. It's also great news that viral hepatitis has been crossed off the "ugly list".
Too early to know for sure but you're young and living a healthy lifestyle. Chances are that your liver will recover, at least partially.
It sounds like you've got a decent doc and can work with him/her.
BTW, just to give you a little background...I'm a 67 yo male and a recovering addict myself (almost 30 years now).
Anyway, let us know about the us results and anything else...results, questions, problems or if you just need to vent.
Hang tough and keep the faith.

_________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system beat it.

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/28/2016 11:16 AM (GMT -6)   
Hey again the ravenousR,
I forgot to mention your thyroid labs...yeah, most likely it was a fluke. The chances that you were extremely HYPERthyroid, based on your history are remote at best.
Do you happen to have the T3 level when you got the flakey TSH? Your thyroid function is defintely related to liver function. Again, I'd have to look up details, but T4 (inactive "thyroid hormone") is converted to T3 (active "thyroid hormone") in various tissues...the liver being responsible for a decent amount of this conversion. But again, your TSH indicated a severely overactive thyroid and nothing in your history points to this as credible, so I'd chalk it up to a lab error. This whole thing can get very complicated in a hurry...it actually starts with a TRH (thyrotropin releasing hormone) secreted from your hypothalamus which, in turn, stimulates your anterior pituitary gland to pump out more TSH. This is why the endocrinologists get big bucks...lol.

theravenousR
New Member


Date Joined Feb 2016
Total Posts : 2
   Posted 2/28/2016 12:09 PM (GMT -6)   
Thank you very much for the response. Regarding the T3 level at the time of the very low TSH, it wasn't included in the blood test, only the T4 was, and that was 1.5 ng/dL, Ref. 0.82-1.77. My most recent blood test showed the following: Tsh 1.260 uIU/mL, Ref. 0.450-4.500; Thyroxine (T4) 9.5 ug/dL, Ref. 4.5-12.0; T3 Uptake 26%, Ref. 24-39; Free Thyroxine Index 2.5, Ref. 1.2-4.9; Triiodothyronine (T3) 134 ng/dL, Ref. 71-180.

I guess a large part of why I'm so discouraged is the sheer length of time that has passed since I've quit toxic substances and started a healthy lifestyle. I read about other people's liver enzymes falling back to normal within weeks of quitting -- and that's usually after DECADES of abuse. Unless, of course, irreversible scarring has occurred; and that's my concern.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4793
   Posted 2/28/2016 8:53 PM (GMT -6)   
trR,

I wrote a long post earlier and it zoomed off into the cloud I guess. So, welcome again. I am the partner/caregiver for my papalama, who has been through a lot: alcoholic cirrhosis, Hep C, and liver cancer. He had a liver transplant after a horrible spiral into "near death" called End Stage Liver Disease...not a good place to be. BUT...he is 67 and doing well. His liver isn't perfect, but he is enjoying his retirement, playing some golf, and glad to be alive. He has had children, a career, all the normal stuff, even with the liver goiing down hill.

Liver disease takes a long time to do you in. I think your committment to a healthy life style will have saved your life. If your liver is not completely cirrhotic, and I can't imagine with your labs that it is, you should see recovery over time. Look at my papalama....it took 40 some years of daily excessive drinking AND the virus to do his liver IN!

But it takes time. Stay on your track and something else will get you in the end! Drink lots of water and that should settle your creatinine down. And be very careful with tylenol. That stuff can be worse than snake venom to a bum liver.

Do your labs regularly in case something "else" pops up. I'd ask you doc about whether there is anything to the increasing Alk Phos...

Congrats on saving your own life...

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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