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Long-Term Liver Confusion

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theravenousR
theravenousR

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.

I went to the dermatologist recently (I have health insurance now, although it's crappy), for a prescription for finasteride, since I am losing my hair. THAT elevated my liver enzymes, and seemed to bring many of my symptoms back (hard to tell sometimes if it's anxiety or not). I know it's absurd, but the fact that I can't fight my hair loss depresses me more than the thought I might be dying. The dermatologist insists I should be fine taking the medication, that my LFTs aren't THAT high. But I'm paranoid.

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. 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="">

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.>

0 likes, 17 replies

17 Replies

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  • RHGB
    RHGB theravenousR

    Posted

    The fact that you say ER, means that you are North American, and it's very difficult to advise on what is a totally different system, from the British system.

    What I would say, is that it is possible to get worse readings futher down the line from when you gave up, because your system has been affected so much. My hepatologist sent off for blood cancer tests, because I had had a blood plasma transfusion.

    I take many medications for my alcoholic years, which laster way longer than yours, from about 25 to almost 49. Are you (prescribed) any any medication since your initial visit to ER?

    • theravenousR
      theravenousR RHGB

      Posted

      No. No medications whatsoever, except for the finasteride, which is not of medical necessity.
    • RHGB
      RHGB theravenousR

      Posted

      Difficult to answer without an explanation of the tests. We are not often given test results because that is the way the system works and of course, we don't pay (directly) for it or insurance.

      Like I said, I darnk for longer than you, into my later years, but I never took drugs. medication or otherwise, never smoked or been a big coffee drinker.

      I'm going for a blood test on Thursday, and should see the doctor/nurse next week for the results, I'll see if I can get a copy of them. I take 8 prescription meds per day, though and they only ended up treating me in hosiptal because I had a massive stroke and then went jaundiced (nice shade of yellow) whilst I was there.

    • theravenousR
      theravenousR RHGB

      Posted

      Thank you. I appreciate that. Aside from your medications, are there any supplements or dietary guidelines you would recommend for healing liver damage?
  • Fireid13
    Fireid13 theravenousR

    Posted

    R you guys saying that caffeine is a big offender of the liver as well
    • RHGB
      RHGB Fireid13

      Posted

      Not really, I mentioned it twofold, one that I really took nothing but alcohol, but in the case of the OP, this may be relevant.

      "Further, drinking large amounts of caffeine may be detrimental to liver health when combined with the pain relief medication acetaminophen,"

      It's from the livestrong website, but if I post a link, the post will get moderated. It's from an article dated 8th October 2015.

    • Fireid13
      Fireid13 RHGB

      Posted

      Ok good to know thank you, do you think anyone with liver problems should not take tylenol at all. I cant take ibuprofen due to stomach.
    • RHGB
      RHGB Fireid13

      Posted

      Personally I would check, depends on the circumstances*. We have four main pain killers in the UK. Paracetamol (what you brand Tylenol), that used to be popular, but is not used so much because of effects that it can have on the liver if over used. In fact it is the number one choice of medicine to commit suicide in Britain, buy enough (off the shelf), get a bottle of spirits and away you go.

      Ibuprofen is the favourite pain killer, as it works and has little chance of casuing problems. Aspirin is taken by few these days, but was popular when I was growing up in the '70s. It is used more as a blood thinner by doctors these days.

      And then there's codeine, which is the strongest of the lot, but again that has to be metabolised by the liver and is a derivative of morphine and can become addictive.

      * In the UK, we are all registered with a local doctor and can book an appointment to see them (usually there is three or four in the surgery, so if your doctor isn't available, you could see one of the other ones, for free)

  • sunny2015
    sunny2015 theravenousR

    Posted

    OP, It seems all the doctors you went through just checked biochemical values in blood. How about some ultrasound of your liver and nearby organs including pancreas, gall bladder, bile ducts and spleen. I will be asking for Ultrasound as well as MRI. Even if you can't afford it as you could virtually save your life if there is anything sinister lurking around by diagnosing earlier.

    Its your life and you have to take care of it. So demand the MRI and ulteasound borrow money if you have too.. to find out any nodule or lesion in liver or surrounding organs.

    You are young so get on with it asap.

    Good luck

    • theravenousR
      theravenousR sunny2015

      Posted

      This is one of the things I was confused about, and was hoping someone could give some insight. At the hospital, when I was presenting symptoms of upper right quadrant pain and given a blood test which showed elevated liver enzymes, they gave me an ultrasound and diagnosed me with gallstones. Now, would that ultrasound have shown any liver abnormalities? Or were they just looking at my gallbladder to determine if I had gallstones? I know the two are connected and everything, so I've just assumed that they looked at my liver, too. But I was never told conclusively and there's really no one to ask now.

      As far as demanding an MRI, that's really not how things work here in the US (at least in my part of the country). For instance, the hospital doctor told me I needed my gallbladder removed ASAP. That was 2 years ago. When I asked my general care doctor he told me: "Your insurance won't pay to have it removed unless you're vomiting blood." And that was that. 

  • ivan3388
    ivan3388 theravenousR

    Posted

    Have you had a scan or test to check on fibrosis or cirrhosis? 

    Seems like your main problem is long term inflammation in the liver, and not able to find and treat the excact causes.

    Maybe you can consider to work on stop the inflammation in the liver first (lower your ALT level), instead of trying to find the casue. 

    Once the inflmmation stop, liver fucniton should be able to return and improve on the hair lost problem.

    This link is a reserach from PubMed about Anti- inflammation in the liver and liver protection: http://www.ncbi.nlm.nih.gov/pubmed/24050307

  • Bollyarchive
    Bollyarchive theravenousR

    Posted

    You only mention blood tests. These won't pick up things that imaging such as an ultrasound or ct scan would. You have the medical history of someone who mighty have fatty liver. 
    • theravenousR
      theravenousR Bollyarchive

      Posted

      I did say I had an ultrasound, which showed gallstones. My question is: Would the ultrasound have showed the extent of my liver damage? I mean, they didn't specifically say "We're going to look at your liver." They just said let's give you an ultrasound and oh, hey, you have gallstones, get your gallbladder removed. And I can't ask anyone to be more specific because this was at the emergency room and it was nearly 2 years ago.
    • debbie75601
      debbie75601 theravenousR

      Posted

      Same thing as me. Went to the ER for chest pain and nausea, they gave me an ultrasound, diagnosed me with Gerd and gallstones, gave me scripts, and told me to follow up with GP and surgeon. I have since had my gallbladder removed almost three weeks ago, and my blood work is coming up with High LFTs. I would have thought they would have checked this with the ultrasound too! Was told awhile ago that it could be due to inflamed gallbladder, but shouldn't be that way now, unless it takes a while for them to come down. Probably another doctor I will have to consult now. How are you doing now? Got any answers? 
  • sunny2015
    sunny2015 theravenousR

    Posted

    Mate I am not sure why doctors ain't treating you with your abnormal levels of liver you surely has some kind of liver damage whether it is fatty liver or cirrhosis you need to get a private cover that can cover your medical needs or borrow money from somewhere to get yourself treated. If you keep going this way its only gonna get it worse, the weight you are losing might be from liver damage check for full blood analysis including platelet count. 

    You need a good physician who can diagnose your condition and direct you with approprite medical care, I can't stress more you have to get this diagnosed asap, ultrasound of liver which is cheap even in third world countries if there is any abnormality detected then MRI is warranted(I would go MRI personally first).

    Personal story here, my colleague 2 yrs ago passed out at work unconscious thinking he is losing weight cos of low fat diet and exercise, he didn't know he is losing blood platelets rapidly. He got admitted to emergency department they diagnosed him as liver Ca a week later he passed away... He had diabetes and doctors couldn't control his bleeding.

    So obviously doctors failed him thinking his previous elevated enzyme were normal due to his BMI or old age whatever the reason was and didn't send him for imaging studies like ultrasound or MRI or CT, huge misdiagnosis.

    That's it for me mate, you look after yourself and keep posting here.

     

    • theravenousR
      theravenousR sunny2015

      Posted

      I just took a look at my most recent blood test and here is my platelet count:

      Platelets:

      10/1/15 - 251 x10E3/uL, Ref. 150-379

      At any rate, it's within normal ranges. I didn't know platelets were a major indicator of liver damage, and/or the possibility of cirrhosis.

      Thank you for your response. I will look into borrowing money for an MRI. Here's the problem: I have tried seeing specialists before outside of my health insurance network, and I couldn't find anyone who would accept cash patients. I don't know the reasoning for this, but it left me with the impression that I was simply at the mercy of my primary care physician and my cut-rate health insurance plan. I mean, I could probably afford an MRI (unless it's thousands of dollars--in which case I'd use credit), it's finding someone that would do it.

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