Elevated Enzymes & Fatty Liver on US. Lost My Mind & Ended Up in the Hospital

07-09-2017, 01:53 PM

Hello,

I know that no one here is a doctor, and I'm not looking for magical words. Just something perhaps comforting bc I have literally lost my mind over this. I didn't sleep more than 2hrs in 3 days and I think had like 500 calories and maybe a glass of water in the same time.

I ended up at the emergency room a few nights ago when I just broke. It was way more than the panic attacks I'd been having. They were going to inpatient me to an off-site psych place, but then decided to just let me go home. I have been able to sleep and eat a little since coming home, but I am barely holding myself together.

I just don't know what all this stuff means for me and sending messages to my dr that takes days back and forth isn't helping.

I would be so very much appreciate if some might take some of their time to help me understand/cope better than I have been.

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I'm a 41yr old female. I'm considerably overweight (40 BMI), which is a constant struggle with PCOS. I've lead a very sedentary life after tearing the cartilage in both knees a few years ago, but I should have found something that didn't hurt, rather than throwing up my hands and sitting on my ***.

I have pretty severe anxiety. I didn't used to be bad at all until a few years ago when I was convinced I died after sinus surgery. (I likely passed out or simply feel asleep, but I was utterly convinced I died and was unable to sleep for days at a time afterwards. It flares now and then under stress.) My dr thinks it caused PTSD and health anxiety. I was given Xanax to take as needed.

I don't drink. I don't smoke. I don't use drugs. I don't have any heath problems really until this liver stuff. Well, yeah maybe I do, but it's something that was just being looked into right before the liver stuff came into focus.

Starting late April, I had a month-long bout with abdominal issues I've never had before (bloating, quick to feel full, loss of appetite, frequent BMs, some heartburn.) By the time I got into see the gastro doc (took a month), the symptoms had abated. I literally only saw him for 3 mins. He didn't do any sort of exam. He told me I had acid reflux and to take this pill he was giving me for a month and come back. I was terribly disappointed in that whole experience.

My primary doctor had run blood work on May 1st, and although my liver enzymes had been elevated, they were still within so I guess she didn't say anything. I guess the gastro doc didn't think much of it either bc he didn't say anything either.

May 1st:
ALT (15-78 U/L) = 72
AST (9-44 U/L) = 45
ALP (37-127 U/L) = 90
Bilirubin Total (0.0-1.2 mg/dl) = 1.1

The previous time my blood work had been done was in June 2015.
ALT = 26
AST = 22
ALP = 94
Bilirubin Total = 1.2

So, you can see the ALT and AST a considerable elevation from what it had been previously.

I had a routine physical on July 3rd. The enzymes had increased slightly more.
ALT = 82
AST = 45
ALP = 81
Bilirubin Totoal = 1.3

This time she flagged it and left me a message she wanted me to come back in two weeks for a retest.

I Googled why enzymes would be elevated. I read about NAFLD and NASH. NASH sent me out of my mind. I kept having panic attacks my Xanax wasn't helping with. I couldn't sleep. I kept having the thought of if I sleep; I'll die like happened back a few years ago. I was a mess. I called the office and BEGGED for a liver ultrasound now rather than making me suffer like this for 2 more weeks for a retest which will probs just lead to an ultrasound anyway. I also told them I started to have right quad pain in the last few days that wasn't going away.

So, she ordered it and I went that night for blood work (not sure why the blood work, it had only been a few days since I had it) and a full abdominal ultrasound. I was hysterical at the test and the tech felt so bad, she tried to calm me saying that she didn't see anything so bad...only some gallstones and a fatty liver. (I guess she thought I was worried about cancer, but oddly I wasn't. It's NASH that is terrifying me.)

Well, after hearing for sure I did have a fatty liver, I lost my freaking mind. I couldn't get NASH out of my head. I don't (no one does) want to end up on some liver transplant list in a few years with end liver disease.

I can't convey to you the just true utter terror this has struck in me, and my anxiety meds aren't helping. After coming home from the ultrasound, I lost it. I ended up at the emergency room when I started to scare my husband. This was more than a typical panic attack. I begged them to please sedate me so I could sleep. I was so exhausted. I had only had like 2hrs in 3 nights. They gave me fluids bc I was dehydrated, something to calm me, and called a social worker to work with them in putting me into some off-site inpatient place.

Maybe I'm being a baby, but I truly can't help it. I wouldn't do this to myself if I had a choice. I know I'm being irrational at times, but that doesn't make it stop.

Anyway, they decided not to inpatient me and sent me home. Whatever they gave me finally allowed me to sleep. I've been able to eat since then, but my appetite is definitely diminished.

I have immediately changed my diet, and started to walk a bit. My exercise tolerance is pretty low, so I'll have to work up to more and more steps. I walked 2.5 miles yesterday, but I think that's maybe pushing it after having sat for so long and I really still haven't been eating too much. I don't want to make this worse and I've read you can do if you lose too much weight too quickly.

My doctor finally personally called me after her nurse (who is a sweetheart) found out I had been in the hospital. My doctor tried to tell me that sooooo many people have fatty liver and this is a new condition for me, since there was no indication of it back in 2015. She said that's good bc it wasn't much time to cause damage. She said fatty liver is almost always reversed with a healthy died and exercise. She said my levels are only slightly elevated, so it's not a dire concern right today. She said if she had been worried that of course she would have said so, but she really isn't at this time, even after the ultrasound. She said she hoped that seeing my gastro doctor next week to talk about things in more detail will make me feel better.

She said the pain I'm having in my side and back and even the elevated enzymes could easily be from the gallstones seen on ultrasound. She kept saying try not to worry and that she'll do what she can to help get me into some behavioral therapy for my anxiety bc it's clear the meds alone aren't enough.

I had a panic attack while talking to her. She's asked me to try to calmly tell her what I'm so scared of. I told her NASH. It's literally terrifying me. She tried to calm me with rational things like it's such a small chance and all that, but really... she can't know right now if I have it or not, so I really couldn't be calmed very much.

I've been barely holding it together. I don't see the gastro until the Thursday of this upcoming week. That's like an eternity to someone with severe anxiety. I really don't know how I'm going to manage until then.

I've been trying to hold onto the fact that gallstones (bc that's a relatively easy fix, right?) could cause my enzymes to be elevated, but ALP is commonly also. In my case it's not.

Shortly before both tests I had VERY, VERY bad back pain that radiated out from under my right shoulder that I had no idea the cause of. The last few days I've had this dull, but constant ache at my right waist level (reaches a little to the front and back.) Off and on for weeks/few months, I get this bit sharper pain in my right side that didn't last, but I was chalking it up to poor posture. Does that seem to be gallbladder related bc of the stones?

How really worried about all this should I be? I'm hoping hearing from real people will help.

Thanks <3 and sorry so long.

07-09-2017, 07:00 PM

Dear Heather,

It's time to get your mind back!

Many, many people have NASH. I have it and I am fine. It is there, and it is not killing me. My gastro group is monitoring it and they say so. All fatty liver means is that some fat has accumulated in your liver, so yes you might want to reduce simple carbs and bad fats from your diet and exercise more.

I have fatty liver from getting Hep. C 35 years ago from a transfusion. I had Hep C 15 years before it was discovered when I had blood work done because of gall bladder issues. There were no liver symptoms at all. I was able to take Harvoni and the Hep. C is now 100% gone. I'm still working on reducing the fat that had accumulated in my liver (and the rest of my body). But I was and still am fine.

My opinion from what you wrote is that you are no where close to being in dire circumstances. From what you wrote, there is absolutely no reason for the fear gyrations. TRULY! You only feel as scared as you are because of what you tell yourself. Even your doctors tell you it is not a serious concern and that you are fine.

But, hey, if this news motivates you to eat in a more healthy manner and to exercise, then just consider that you now have motivation, you know? Motivation out of concern for bettering your health is GOOD. The docs don't want you to think you should ignore the fat and go on as usual. But it's not a death sentence.

In fact you are using up energy you need for healing. Breathe girl, breathe! Slow, even breaths. It's too bad that there are so many commercials and ads out there giving incomplete information scaring the wits out of us. Turn those thoughts off and listen to what your doctors and nurses are saying: that you are fine.

Maybe you will need the gall bladder removed. I needed mine removed. It is rather typical for females more than for males. The GB surgery was not a big deal and I felt a lot better afterward even before completely healed. Side pain is not unusual, though mine was a stabbing pain in the upper back. The way laparoscopic gall bladder surgery is done now the healing is fast. We just watch what we eat for a period of time and allow the system to heal. Some need to change their diet for awhile. But it's nothing to be overwhelmed about, believe me.

Terrifying yourself over what might someday happen is NOT GOOD. Not eating enough calories is NOT GOOD. It saps your strength and feels awful. Please stop that. Yes, you can stop. Doing that is punishing your body. Be kind to your body by learning the facts and then doing what is needful for health. Starving your body just makes it hold on to fat! Please, use this news to motivate you to change your diet to reduce simple carbs and sugars and eat all you want of healthy fresh or steamed vegetables, fresh fruit and low fat meats like chicken and pork, turkey, fish.

As you look at the facts and make yourself breathe slow even breaths and tell yourself that "I can do what is needed", the fear will fade away. Fatty liver is is not unusual, esp. in this age of carbs from sugar, grains, high fructose syrup added to practically every pre-prepared 'food' that is sold. Read your labels and watch what you eat, esp. when eating out . Take care of your body. That's it.

I hope this helps.

Love,

07-10-2017, 08:14 AM

How are you doing Heather?

07-10-2017, 10:40 AM

Hi, YaYagirl

You really don't know how appreciative I am that you took the time to respond and are concerned. It means a lot to me, thank you so much <3

Well, I'm certainly better than the night I ended up at the hospital, so that's a plus. But I feel like not that strong of a wind could just push me right over. I'm trying, but with my anxiety being high and not under control...it's hard.

It's upsetting when you see results and sometimes don't understand what they mean, but your doctor is obviously busy and can't talk to you. Like today, my doctor posted my latest labs and the ultrasound results to MyChart. When she called me the other night bc her nurse was worried about me, she verbally told me that my LFs hadn't changed, but I can see they did. They are slightly more elevated, including the bilirubin.

ALT (15-78)
6/1/2015 (26), 5/1/17 (72), 7/3 (82), 7/6 (89)

AST (9-44)
6/1/2015 (22), 5/1/17 (45), 7/3 (47), 7/6 (50)

ALP (33-127)
6/1/2015 (94), 5/1/17 (90), 7/3 (81), 7/6 (82)

Total Bilirubin (0.0-1.2)
6/1/2015 (1.3), 5/1/17 (1.1), 7/3 (1.3) 7/6 (1.5)

It's very, VERY scary to me that they went up, even a little. I know it doesn't mean I'm in immediate danger. I know that. I can at least be rational about that part.

She made a note that the gallstones may be the cause of the elevated values, but based on what I read, it seems more likely not being that the ALP isn't elevated and there were no signs of cholecystitis on the ultrasound.

I am a "planner" in daily life. I have been since I was a kid. Short term, long term doesn't matter. My mind is always thinking of a plan (and plan B, and plan C).

My mind isn't thinking about today. My mind is going to next year, 5 yrs, 10 yrs. I know that if I do have NASH, it's not an immediate threat today, but it's the future that is truly terrifying me right now bc unlike NAFLD, you can't reverse NASH. You can only hope it doesn't progress, or progresses slowly.

My undergrad and grad schooling was all bio, anatomy, phys, micro, etc. I know enough to read and understand the medical articles. I wish I didn't. It's not helping at all, but yet I'm compelled to read them.

I've barely read anything in the last few days, but the mental damage was already done. The info is already now in my head. And because of my anxiety, which is far from being under control, I just keep fixating and then I get so worked up.

NAFLD is not ideal, but I know that you can pretty much turn it around with losing weight and a healthy diet (which I already started), but it's the NASH version of it that terrifies me.

You said you have NASH. You have that for sure, rather than "just" NAFLD?

Can I ask if you had a biopsy or one of those special scans to confirm you did have NASH? How long ago? How are your liver tests? Is your case one of slow fibrosis progression? (You can answer me in private message if you'd rather not post it in public.)

I'm afraid to go on a board specifically for NASH. I got a glimpse of some posts when I first started reading all about this last week. No doubt, I'd end up back at the hospital.

I hope I'm not being annoying or a pain, and ofc you're not obligated to continue talking to me, but it has been comforting to talk to another person about the issue who has been there herself.

Thanks

07-10-2017, 03:02 PM

Dear Heather,

You're very welcome. I'm not always available, but I will check on you.
I'm glad to chat with you about this, tho of course not glad that you are so upset.

I am a planner too.l. I care way too much about detail. Even my art teacher told me art is not photography. That should reveal the facts about me.

Actually, the liver can rebuild itself. Human theories are not set in stone. The fact is the body is made basically to self-preserve. I had slow fibrosis progression and now tests are showing no progression. For now. it can change. If it does I will deal with it.

First - GIRL. You must get a grip. Knowing some information does not equal that you are in a dire circumstance. Not at all. And, for that matter, panic is never healthy and it doesn't make for healthy decisions. You were not struck by a cobra. :no-no: You simply learned that your body could be healthier.

All NASH means is there is some inflammation in the liver. Yes my fatty liver was discovered by a puncture test and scans also show a little cirrhosis. That is not a death sentence. It means for me, no alcohol, and I avoid unnecessary medications etc. I do admit I eat too much sugar, the worst thing for me to do. I'm working on that. But my scans and tests do not show further progression of the disease. I'm fine. I'm sharing this so you can see an example that you can have these test results and be fine too....I did not say perfect, as no body is perfect. I said fine.

There are people living with this all of the time. I am 68 years and had Hep C 34 years, not counting the one year I have been Hep C free. I don't do thing to compromise my liver further, and it functions just fine. I expect to die from a ripe old age. I would be more concerned if I had untreated low thyroid (mine is well treated). And I am now on a trial of B12 injections, because I have a lot of nerve problems.

Information is good for learning how to better take care of ourselves. Making yourself a wreck because you understand that the body "could" get sick or sicker isn't all the information there is out there. How about the fact that the body can usually heal itself when we make changes. C'mon now girlfriend!

You can change your self-talk. I'm not at all making light of what you feel, I am taking it very seriously. because what you say to yourself leads to what you do for yourself.

I have been hit by a truck, had a dangerous self-inflicted poisoning episode, a terribly abusive upbringing, lost the only supportive person in my life at age 5 and have had several other broken bones and daily deal with things I won't even add to the list. I have been severely depressed and anxiety ridden. I have moments still, but I choose not to let myself live there.

I'm not saying it's easy to deal with everything life throws at us; I know life is hard. What I am saying is we can change our minds and choose to dwell on the positives. I am proof of that. I also have at least 50 years of studying the body and mind and how it works that stands behind my confidence. I'm not at all an expert or a doctor. But one thing I know is the human being is made to be able to stand up and live without overwhelming, crippling fear. Sometimes we just need encouraged.

The body responds to the psyche. Not in a la-la weird way. The body is made in a way that it 'knows' how to heal itself. Yes we need to make healthy decisions with whatever info we learn...and you can keep on making healthy decisions. There is no need to lie down and die from terror; you can make healthy choices and help your body to heal and survive. I am proof of it.

Sometimes the medical profession scares us more by trying to help is feel OK. Maybe you need to ask the nurse to not call you unless you are in trouble and need to get in to see the doctor. (???)

And, yes by golly get more info about your gall bladder which I think is the source of your issues more than anything else. Some docs are lackadaisical about the gall bladder and we have to kick their behind a little so to speak.
You do need to take care of things, but panic mode is extremely unhealthy and can interfere with healing and even with getting proper diagnosis. Signs of cholecystitis do not always show on the ultrasound. These things are definitely not set in stone.

How about this...before you fear ask the DOCTOR (not the nurse) whether you should be afraid. Then believe him/her. The nurse made a note that the gallstones may be the cause of the elevated values. Trust that direction. Don't look for ways to dismiss it. Don't try to be your own doctor.

Love,

07-10-2017, 04:38 PM

YaYagirl

What a tough lady you are! and you sure have been through a lot. I'm sorry you have, but it's such an encouragement to hear that in spite of it all, you're still here and doing well.

I had to call around a bit but I was able to find a very nice counselor who can take me on as a new patient starting tomorrow. I am very happy, bc obviously I need to learn some coping skills with this anxiety. It's become WAY too much for me to manage on my own.

You're absolutely right about worrying not being good for you. I also know that not eating or sleeping well isn't good for your health and healing. I hate that I know that, yet find it so hard to control the panic I feel.

I go to the gastroenterologist on Thursday, so I guess there isn't much I can do before then. Wait, that's not true. I can STOP reading liver stuff on the internet!! I'm sure the focus will be on my liver and gallstones even though it was only meant to be my 1st follow up appointment from a referral to see if I maybe had acid reflux.

I'm a little concerned bc I only saw him for no more than 5 mins (not kidding) my very first visit with him. I'm hoping that he'll make a point to take more time and answer the questions I have.

My PCP just returned a message from the day after she told me the ultrasound found I had fatty liver. I just read it before reading your reply, so after reading both, I'm feeling considerably more positive. She said that since mine was found early, she doesn't think we have too much to be worried about. And she said I have to stop reading the internet.

It's hard bc I'm a person that likes to know everything about everything, but I think at this point it's doing way more harm than good, so going to stop right now.

Thank you so much for coming back and checking in on me. Again, I really do appreciate your time and concern. I think it means even more bc you're a stranger if that makes sense?

Thanks <3

07-10-2017, 06:52 PM

Heather,

YEP! That does make sense. Friends & family can seem like they owe or want something without meaning to. It's clear that you do already know everything I had to say. So yes, do stop that research for now and give yourself a break, sweetie! You deserve it!

Thanks for the compliments. I'm very thankful that sharing with you has been enough encouragement so you can relax some and see what you need to do. You are alright! and you will continue to be alright. Whatever comes your way you are up to dealing with it. Everyone has stuff to deal with and I am thankful I can relate to you if it helps you in any way.

Started out that the only way I could handle anything was to be mute and 'invisible'. I was give Elavil and I took it one time and didn't like that woo-woo feeling so I told the doctor no thanks, and never took anything else.

In my 30's I had an excellent therapist that treated me like a normal person and he showed his normal responses. I learned every person has stuff to deal with; that I was not weird or 'different', I just wasn't opening up about it even to myself. The effect of therapy made me realize I was normal for the things I had been through, so I was able to stop getting on my own case and let myself grow up. I knew I was reasonably intelligent and gifted and could decide for myself. I always was a reader and researcher, as that's something I could do by myself. It wasn't courage that saved me. I was the supreme wimp inside, though no one else knew it. I excelled at school and tested at the top 5 % of the state. But all that didn't help me. Learning to forgive myself, others and even my own body is what saved my life.

Be thankful for the body that you have. It will be more relaxed and responsive to healing and restoration. The main thing in my opinion is to tell yourself the truth. Fear is not based on facts so much as worry over 'what ifs'.

I will check in on you here.
Hugs and love,

Elevated Enzymes & Fatty Liver on US. Lost My Mind & Ended Up in the Hospital

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