New patient - non-viral hepatitis, can it flare up again?

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Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 3/10/2016 11:59 PM (GMT -7)   
I wish I had found this forum a couple of months ago!

Late last year, I started getting headaches and had them daily. I was taking ibuprofen, paracetamol, codeine or voltaren daily (not at the same time!). I rarely need to take medication for anything. Then about a week later when I was back at work, I was so exhausted I couldn't make it through the day. I had to nap at work and I have never done that before. I also woke up in the middle of the night later that night, shaking violently and uncontrollably. Fevers were shocking, hot and cold. Muscles were tired, my appetite was gone and I could eat nothing for days. Went to the doctor and had some blood tests which showed I have hepatitis. After more tests, it was determined that I had non-viral hepatitis. Ultrasound showed a liver lesion of unknown pathology, multiphase CT scan showed that it didn't appear cancerous, but they still aren't quite sure what it is and recommended another ultrasound in 3 months. The location is amongst the major veins/arteries that lead in to the liver, so impossible to biopsy without a GA. CT also showed my spleen was approaching the upper limit of the normal range.

It's a couple of months on and I had been doing much better. My last blood test results, the inflammation had decreased (not sure of the readings). But this week I have been feeling more tired than usual, my appetite has been a little bit off at times, my muscles are tired at times and today I've had a stitch like pain in my liver region. I don't feel as bad as i did a couple of months ago (I had 2.5 weeks off work and slept day and night for most of that - I couldn't even function). I've also been getting mouth ulcers on the inside of my cheeks.

Work has been pretty stressful lately, my workload has increased dramatically in the last couple of weeks. I am trying not to let stress get to me, because I don't think being stressed is going to help me in any way and I don't want to have a relapse in my recovery. I have no idea whether stress could contribute. No cause could be found in my case but the doctor suspects any number of viruses has started this.

Is it possible that non-viral hepatitis can just flare up again? My GP seems to think that the inflammation will just decrease until it eventually disappears. He hasn't referred me to a hepatologist as the last results showed a decrease in inflammation. If they had jumped up, he would have sent me straight to the specialist. I'm really not sure whether the symptoms I've been getting this week are related or if I'm just run down. There is no planned follow up with my GP, no further blood tests planned, just need to see him for the ultrasound referral next month, or make an appointment with him if I'm having problems.

The results at their worst were
ALT 188 U/L (normal range <30)
AST 609 U/L (normal range <30)
ALP 128 U/L (normal range 20-105)
GGT 79 U/L (normal range <30)
Albumin 34 g/l (normal 38-50)

These seem quite high compared to other results I've seen in this forum?

Bilirubin/Protein/Globulin all with normal range.

It has been a really scary time for me. I never get sick, I don't even drink alcohol so to have a liver problem is such a shock to me. There is very little information available about non-viral hepatitis.

I guess my questions after all that are:
Can non-viral hepatitis flare up? Can stress impact recovery?
Could my weird symptoms lately be part of the hepatitis or just stress related?
Seeing as though it's the weekend I'll just rest and see if I improve, and if not I'll go back to the doctor next week.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 3/11/2016 4:35 PM (GMT -7)   
hi,
what are your #s now!!!!

you need further evaluation, and i would ask for a fibroscan. your #s, with a inverted ast/alt, are symptoms of possible damage occuring. are you drinking alcohol???

your ?,can non viral hep flare? until they diagnose the source of inflamation, then YES!! stress less and take care of yourself. get back to us
best to you

Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 3/11/2016 7:26 PM (GMT -7)   
Thanks for your reply!

I'm not sure of the #s now, the dr's receptionist said 'he wasn't too concerned with the numbers' but if I wanted to find out what they were, I'd have to make an appt mad this isn't my usual dr's surgery, so I'm thinking I may go to my usual dr because they do tell you results over the phone without having to make an appt. getting time off work to go to hear some numbers is just pretty inconvenient, as much as I like the dr.

I don't drink alcohol. Previous to this my alcohol intake was 1-2 drinks a year, in my youth there was binge drinking involved but those days are far behind me. I just don't see the appeal in alcohol anymore. I'm 33 and female, forgot to add that in my original post.

It is frustrating not knowing the cause. Dr asked if I'd been in contact with pesticides or poisons. I wonder if possibly it's hair dye? I do have one energy drink every day, dr said that wouldn't be the cause. Also didn't think it was the painkillers I'd been taking for headaches as I was only taking 2 a day maximum. I did test positive for EBV but it's not a current infection (no idea when that happened!?).

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 3/16/2016 9:21 PM (GMT -7)   
LouJay,

Welcome to the HW Hepatitis forum. We are patients and caregivers affected by the spectrum of liver diseases. Do I understand correctly that you have been referred to a liver specialist now? That is important. I thought they ruled out viral hepatitis. Go to the Search tab on the blue line above these posts and put in the key word Auto Immune Hepatitis and see if you find symptoms and lab values more like your profile. With AIH we see much higher liver function values. With AIH there are different tests that should be run in your case. You own body attacks the liver. And the flare ups are episodic. If you are in a remission period the labs will look normal.

I will send an email to members who are dealing with AIH and they may pop in here and look at your posts.

In addition I am assuming you are in the UK as you mention paracetamol, which is not sold in the US. It is best to keep those types of meds to a minimum as they are processed by the liver and there are cases where patients have had liver failure from taking too much anti inflam meds.

I am not an AIH expert. My partner has had a rough time with Hep C, Alcoholic Cirrhosis and Liver Cancer. He was so very sick he qualified for a liver transplant 5 years ago. And treated for Hep C in 2014. He is quite well now...though not good as new! He STILL gets tired easily.

Best to you and welcome aboard.

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.

AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 3/16/2016 10:32 PM (GMT -7)   
Hi Loujay

As you are finding out lots of things seem able to send liver readings out of kilter. There are a number of autoimmune liver diseases where our own bodies attack the liver or bile ducts for example plus viruses, fatty liver, medication etc etc Diagnosing liver disease can be difficult.

There is no single test for autoimmune hepatitis. Some of your readings are similar to those commonly found in people with autoimmune hepatitis but others are not. Given that the high readings have been going on for some time I would recommend you ask your GP for a referral to a specialist. They can do a full work up and narrow down the possibilities. It may be at the end of the day everything settles down and they never find the cause - but if it is something like AIH then the earlier you start treatment the better.

Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 3/16/2016 10:35 PM (GMT -7)   
Hi Mama Lama, thank you for your reply! I'm sorry to hear your partner's health struggles, but glad to hear he is finally on the mend. Hepatitis is awful, I had no idea how rotten it could make people feel.

I had wondered about AIH, but my doctor is certain it is not that. He ran a whole heap of specialised blood tests to check, but the last couple of times I'd been to the doctor, the results weren't back and I gather I'd have heard if they were abnormal (he called me immediately when LFT showed hepatitis). I didn't even know you could get hepatitis without a letter attached, I've tested negative for the viral heps. I haven't been referred to a specialist, but rather he was monitoring and sending me for LFT bloods. But since the last one a few weeks ago, I'm not actually sure what I'm meant to be doing. Seems like something that should be checked regularly until it returns to normal? I guess in that sense, I feel like I've been lost in the system - not knowing what I should be doing or when to go back to the doctor. I've been doing better the last few days, I still get exhausted but I can still function (which at my worst, I couldn't).

I suspect that the cause of it all could be diclofenac (or what we call Voltaren which is an anti-inflammatory medication), yet I've taken it previously for a broken rib and never had an issue. I'd just love to know the cause so I can avoid it!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1116
   Posted 3/17/2016 10:44 AM (GMT -7)   
loujay,
what kind of dr are you seeing??? unless your liver enzymes have come down close to normal, and your dr can easily explain your suspicious imaging results, i would demand immediate referral to a specialist..

dont know your laws about medical records, but in the US, you cant withold a patients records, tests, imAging etc...

Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 3/17/2016 7:27 PM (GMT -7)   
Hi ppm guy, I've been seeing my GP - a regular doctor. I'd wondered whether I should go to my regular clinic for a second opinion, and I think I may. Not knowing what the lesion is is a bit of a concern, if it's an area of inflammation, could that turn cancerous? So many questions but not many answers - it seems I'm in the clear for now because the appearance of the lesion is not indicative of cancer.

In Australia, medical records belong to the practitioner who made them, but I can request a copy. It's not that they are withholding them, but unwilling to divulge the results without me making an appointment. That's why my regular clinic is good because you can call up for the results and speak to the practice nurse who will tell you the results over the phone. All I got told was 'dr isn't too concerned at this stage'...she wouldn't tell me the levels. I just think there should be some kind of follow up and regular blood tests, not be left to me to decide what I need to do because I have no idea!

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 460
   Posted 3/20/2016 3:46 PM (GMT -7)   
Hi Loujay: Just ask for records, I have quite a file full. It some how helped my mental status to have them. I have also collected all my liver scans and MRI.
I also have a small tumor on my liver ,so they do a CT scan or MRI , blood work, ... every 6 months I have almost the exact symptoms as you . The same diagnosis Cryptogenic ESLD. Some of my problem is the encephalopathy due partially to the high ammonia levels in my blood. I did have hep A when I was about 6 years old.
Please excuse my mistakes.
I was listed for transplant for about 3years . Then I was told I no longer qualified because my meld score is usually below 10. But I have to continue going to the clinic 600miles away .
I was given 48hours - a possible 5years. That was 10 years ago. That's when I decided join my friends here at Healing Well in 2006. You may understand how I began my journey. Hope I can be some help. Just remember "The Greatest is Love" [ lavender ]
[ june17 ] yeah yeah

Post Edited (lavendar) : 3/23/2016 4:01:04 PM (GMT-6)


Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 4/5/2016 1:54 PM (GMT -7)   
Just thought I'd update:
Went to my usual GP clinic yesterday. The doctor ordered copies of all my blood tests and went through them all, called last night to let me know she wants me to have more tests in addition to the LFT (which she said I should be having regularly until my liver returns to normal). She also gave me a referral to have another ultrasound. She wasn't too concerned about the liver lesion, but was very concerned about the inflammation (she didn't think it was related to the lesion) and how much it jumped up in a week at the start of it all. Having my blood tests today, interested to see what else she wants to test me for (I had A LOT of tests through the last doctor). She said that my fatigue and tired muscles will persist until the results return to normal. So glad I went to see her, there is very little chance I will slip through the system at this clinic as I did at the other. Seeing her again next week.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 4/9/2016 5:12 PM (GMT -7)   
My guy's "lesion" became cancer. It would bear watching that lesion.

Sandia
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 4/10/2016 2:10 PM (GMT -7)   
Sandia, I'm so sorry to hear this. It is something I worry about, especially if it's an inflamed area - doesn't all cancer start out like that? And the location is a very difficult spot. I will be sure to have my regular ultrasounds to keep an eye on it.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 4/10/2016 6:55 PM (GMT -7)   
Mike's started as a shadow and gradually to a lesion and so forth. Keep an eye on it because there are treatments if it doesn't get too far. It may be nothing. Monitoring it would be the best thing for now. Now just breath and don't think worse case scenario.

One step at a time!

Sandia

Loujay
New Member


Date Joined Mar 2016
Total Posts : 15
   Posted 4/11/2016 10:01 PM (GMT -7)   
Great news, a cause has been found - Cytomegalovirus (CMV). A blood test showed a recent infection of CMV, which can cause liver issues, and symptoms similar to that of glandular fever. Explains a great deal. My liver function has returned completely to normal which is a HUGE relief. Still to have my ultrasound to check out the lesion.

Thank you to all of you for your support and advice, it really means a lot that you have shared your experiences and I wish all of you well, and I hope that someday someone going through the same thing as I did, feeling terrified and confused will find this thread and this wonderful, supportive community, and get the answers they are desperately seeking.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2358
   Posted 4/12/2016 8:14 PM (GMT -7)   
Wow that was nice of you to come back and let us know! Wish you luck! Stop back in once and a while!!
There is no pit so deep that He is not deeper still... Corrie Ten Boom

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4806
   Posted 4/13/2016 3:21 PM (GMT -7)   
does cmv return as a chronic thing with flare ups? I don't know too much about this...on tablet...sorry for format. ml
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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