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:
8/12/14 - 186 IU/L, Ref. 0-44
10/13/14 - 102
10/1/15 - 92
11/12/15 - 147, Ref. 9-46
8/12/14 - 104 IU/L, Ref. 0-40
10/13/14 - 49
10/1/15 - 69
11/12/15 - 62, Ref. 10-40
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
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:
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:
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!