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Posted 6/17/2008 3:26 AM (GMT 0)
I know hepatitis generally refers to one of 3 viruses, A,B, and C. But i was wondering if you could help me out with any other causes.  I have had symptoms of liver malfunction for a while now: nausea, loss of appetite, joint and muscle aches, fatigue, right upper quadrant pain, pale colored stools (occasionally), and COMPLETE intolerance to alcohol.  I have repeatedly tested negative for Hep a,b,c over the past year, but still symptoms persist.  I also took an ANA test to rule out Lupus (and i think my doctor said possibly autoimmune hep, although all cases of autoimmune hep don't necessarily have positive ANAs) and that test was negative too.  I've also tested neg for mono several times.  I'm positive though my problem is my liver, is there anything else you could think of, anymore test i could take?  I really want to get to the bottom of this and hoepfully cure whatever it is, b/c its really affecting my life/work/school and I just feel so isolated, i just want a diagnosis!  Please anyone if you have info on something, anything that could be causing my problems, please let me know!! I'm really appreciate it.
Posted 6/17/2008 3:28 AM (GMT 0)
Also forgot to mention that liver enzymes, ALT and AST, are within normal ranges, although the last time i took the tests my ALT went from 11 to 26... and the symptoms are getting more intense...... any thoughts?
Posted 6/17/2008 3:43 AM (GMT 0)

Pennie, welcome to the forum.  We are not doctors or diagnosticians.  Since you have repeatedly tested negative for hep A, B, C, it is unlikely that you have those types of hepatitis.  There is also hep D, E, F, G.  I don't know what the specific tests are for those, or even the symptoms, but I know they exist.  You might want to ask your doctor about those.

Since I have chronic, active hep C, I can tell you that there are rarely the symptoms you describe with this type of hepatitis.  The main symptoms are fatigue and elevated liver enzymes that remain elevated over 6 mos. or more.

Do you have any risk factors for hepatitis; i.e., IV drug use involving needle sharing, close contact with someone who has hepatitis, etc.?  Have you seen a hepatologist (liver specialist?)  Have you had a liver study with CT scanning?

If I were you, I think I would try to find a really good hepatologist and insist on having some liver studies done aside from blood work.  There are other causes for liver disease aside from hepatitis.  Or it could be something entirely different, such as gall stones.

Good luck in finding a diagnosis!  I know it can be difficult.  If you have a teaching hospital near you, you might try to find a hepatologist through them.

Connie


ETA:  I see from your profile that you have posted at the HIV-AIDS forum as you thought that might be what you had, since you apparently had exposure a year or more ago.  Obviously, if you have tested negative for HIV, then that is not your problem.

Post Edited (hep93) : 6/18/2008 8:05:00 PM (GMT-6)

Posted 6/17/2008 5:20 AM (GMT 0)
No i've tested negative for HIV too, infact every test i've taken for everything has been negative... (which is a good thing, but i just want to find something i can fix, you know?) My only real risk is unprotected sex a year ago with this guy, who says he has none of those, i know he does drugs (mainly just weed that i know of) but i dont know if he's ever used IV drugs?? I've had a CT and it was normal as well as an abdominal Xray, normal too, and they've ruled out gallstones as well, I had an abdominal sono and a HIDA scan for gallstones... all normal...
I sincerely wish i could see a hepatologist and talk to him about all this, but unfortunately no one is willing to refer a pt to such a specialist without elevated liver enzymes or some type of abnormal test, and mine haven't been, although i think the fact that my ALT is going up and my symptoms are getting worse would be enough to warrant seeing a specialist, but apparently not, and without a referral, insurance won't pay for anything so that kinda puts me in a bind...
Posted 6/17/2008 4:20 PM (GMT 0)

Hi Pennielane,

Welcome to healingwell!

I am only a caregiver not a patient, seems to me that if  Dr's. have ruled out Hep/HIV you are a lucky person as this is not the diseases of choice to contract. Normal ALT and AST usually range from 0-55 and 0-40 according to what yours is 11-26 you are still within normal range and even with a flu bug or viral infections your counts can rise. I hope you have had your Vaccine shots if not go to your local Health Dept. they will retest you and start you on a series of shots for free! My son Wil's ALT usually range about 248 sometimes higher, He has Chronic Hep B cirrhosis (2002) is when we found out. He contracted thru chemo or bloodtransfusions in 1987-1988 he had AML leukemia He is now 22 yrs.old. Get a second opinion even third if your not satisfied. Good luck and know that we are here for you! Please let us know how you are doing and what you find out!

Take care!

Toni

Posted 6/17/2008 4:37 PM (GMT 0)
yea ive had all my shots, and the test for HepB showed i have immunity to HepB... im pretty sure since ive tested several times that i dont have HepA-C, but i worry this is some other virus/infection/something affecting my liver.... and i dont know if its going to go away, id just like to get it figured out before it becomes a serious issue, you know? i dont want to find out 10 years from now that i have serious liver damage when there is something i could to to fix it now.. :( but since my enzymes are in the nl range no one is really taking the rest of my symptoms too seriously.....
Posted 6/17/2008 4:37 PM (GMT 0)
thanks for your support by the way, its nice to have someone that will listen to me about all this!
Posted 6/17/2008 8:42 PM (GMT 0)
Pennielane,

 If you have tested neg. and had your shots I would say your pretty safe. Now Hep A is from like food poisoning you would be hoovering the porcelean thrown  but, you will fine. Your Dr. any Dr. for that matter would have caught this if you were positive for Hepatitis regardless of the letter. and Hep B and C is the more difficult virus its spread threw contaminated blood sharing needles ect. go to top of page and put in HEP B or C and read about it,  the symptoms can be related to many different illnesses STD, MONO, LEUKEMIA just a few. My suggestion again if your not satiafied with the results get 2nd opinion go to HEALTH DEPT. or  Hospital Emergancy Room they will test you. Good Luck! Don't Dwell on it so much and be Thankful you are neg. as this is a torturous disease. How old are you?

Toni

Posted 6/18/2008 9:09 AM (GMT 0)
Pennielane;

As Toni said there are many illnesses that can effect the liver, to make a long story short I was suspected of having Wilsons Disease which affects the liver. I did not have Wilsons. My ALT AST had been checked on a regular basis every 6 months for the past 25 or so years due to hypertension , and they had been normal. I had no pain no symptoms . When they did MRI, CTscan, X-rays etc. everything came out normal . Till they did the biopsy and found out I have ESLD and seem to have had it on going for many years. I don't drink , have never done drugs of any kind. Except prescribed. So in the end they call it Cryptogenic Liver Disease which means it is unknown. Now my only choice is to eat right take care of myself get checked every three months and just waite like every one else. (Life Stinks===Mel Brooks===My Favorite Movie) Actually life becomes more meaningful when you realize we are here but for a moment. Take care seek a second opinion mine came from a gastrointerologist. Keep Posting june
Posted 6/19/2008 2:09 AM (GMT 0)
Obviously, I meant to write "since you tested NEGATIVE for HIV" instead of positive. I've edited my post.
Posted 6/19/2008 3:04 AM (GMT 0)
June-
why would they suspect you have some sort of liver disease if you had no pain or symptoms or elevated enzymes?? why would they do a biopsy with no symptoms or abnormal test results??
what is ESLD and Wilson's??
and does hypertension cause liver problems? i have hypertension too...
Sorry for all the questions... im really intrigued why they thought you had a liver disease with no supporting evidence, please could you share your story with me if you dont mind... id really like to hear it
as for me, im going to see this doctor next week who seems to really care about his patients, i have a 2-hour block of time all to myself :) no more rushed doctors visits, so hopefully he'll be some help for once... hes not really a gastroenterologist or anything, but i went to one of those already and she did a CT scan, abdominal sono, and ran tests for liver enzymes, she also did a HIDA scan and upper endoscopy test to look for ulcers - all neg, after that she just kinda said there was nothing wrong with me, although i know there is she just doesn't want to look any further, but i have hope with this new dr. so who knows!

btw Toni, im 20
Posted 6/19/2008 9:32 AM (GMT 0)
Tony, After writing out almost my life history. My post got lost. So I will just answer your questions quickly. Wilsons disease is I believe hereditary, it is associated with high levels of copper in the blood. ESLD is End Stage Liver Disease. Which as the nurse practioner so sensitively put it "THE END". Hypertention does not cause liver disease, although the medication I have take for it over the past 25 years probably has not helped.

After having my recurring night terror I ran into a closed door and knocked myself out . Ended up in hospital where they found that my ammonia levels were extremely high . Was there for a week. Sent home with med to lower ammonia. And monitored for six months.
My ammonia levels continued to fluctuate giving me encepalopathy each time. So they did the biopsy at that point. Here I am on the Waiting Game. I'd be glad to answer any of your questions. After losing, my thought out, last lost post. Im kinda bummed out. Take Care Let me know how the next appointment goes. Don't stop asking questions till you get an answer. Although I don't have one yet. june
Posted 6/19/2008 6:10 PM (GMT 0)

Hello, Pennielane,

     I'm sure June was directing her post to you and your questions.

 My reason for asking your age is this. My son Wil is 22yrs.old and from what I understand is the reason he contracted HEP B was from his chemo and/or bloodtransfusions in 1987 as he had AML Leukemia. Unless, you have been contaminated with tainted blood at an early age of your life or had any type of childhood diseases or you drink alcohol on a daily basis you should have had a vaccine shot around your 7th grade year as it is mandintroy.You are testing neg. for Hepatitis then you should be pretty safe and THANKFUL. I'm not trying to say there is nothing wrong with you as you are the only one that knows your body.Asking questions and getting knowledge is very important with whatever is or may be.

We did not find out Wil had hep b until he was 16 yrs. old and we went for our 10 yr. anniversary check up as he was in remmission from AML for 12yrs Wil was not sick 1 day not even flu and to this day he is not experiancing any pain however, he has many other syptoms. We were told at our apt. there were many side effects to the chemo and transfusions. He passed every test they put him thru. Then Dr. informed us from his blood test he had Chronic Hep B (aprox. 12 yrs.) and they would have to do biopsy to confirm liver damage. The Dr's. started him on a medication called interferon, biopsy confirmed his liver was at a stage f3 which is borderline cirrhosis of the liver. If they had told us many years earlier we could have controlled this ugly disease and their lack of would not be our emergancy as Dr's. are saying he is in ESLD and will need a transplant to live. but, for now it is a waiting game you see the people we care for on this forum will get very sick and there is nothing we can do except  to make them comfortable and hopefully give them all the love support and care we can. Dr's. informed us in Sept. 07 that by the end of  08 Wil will need that liver transplant and he would be in intensive care before he get's it litterally on his deathbed. So please take care of yourself and keep us posted on how you are doing.

Huggs and Smooches,

Toni

Posted 6/20/2008 8:40 AM (GMT 0)
Sorry Tony, I was referring to Pennie: But as you said we are all here to help support each other. As I mentioned to Pennie I lost my first post, along with my trainofthought and got all confused.

Well it's good to hear what the story is about wil. I really believe he got the disease from a transfusion , otherwise there is no other way a child could get it, and to have that much damage he had to have had it on going for years. I've read your posts but somehow got the idea that Wil was your husband. Wow what a shock it must be for all of you especially since he has already been through so much. I will be praying that he gets his transplant soon.


As they told me I probably had it for many years. Since it never showed up on blood work ,which I had mentioned : blood work done every six months for about 25 years because of my blood pressure.

. I never knew till my ammonia level went totally out of control. My husband said , for about 2 years prior to that I had acted rather strange and confused at times. He just thought it was the stress of work . I was reaching my retirement from work. And I was very anxious. I am prone to Anxiety Attacks, am in chronic pain from arthritis, which I was finally diagnosed for during eveluation. Osteoarthritis, Osteoperosis , and Degenerative arthritis. Plus other medical problems. Now Cryptogenic liver disease. I do not have A-B-or-C have antibodies for A , was sent for vaccine for B and as we know there is not yet a vac. for C. I did have A as a child but you can get that from sharing an apple with someone who has it or playing in contaminated soil or water (in my case most likely mud.
Posted 6/20/2008 9:05 AM (GMT 0)
Continued: I don't believe they had vaccines for hep when I was young.

How is Wil feeling these days, besides dissapointed. Is he in college. Has he been for any lab work. What is his Meld Score? Has he spoken to his transplant coordinator?

Seems to me my coordinator forgot about me once I was eveluated and accepted on the list. I have more contact with my Insurance (nurse scocial worker) She happened to call me today to see how I was doing. I got more answers from her than I get from Dr.s. She told me that recent studies show you can get a recurrance of hep A if you had a severe case as a child and than have some other trama that sort of gets the virus going again. like I had gallbladder surgery later on in my 20's. It was severly infected along with my appendix.

Since they don"t check for Hepatitis or Ammonia level when you are there just for regular reasons. It can , if you don't have symptoms, go on undetected for many years. As is the case with myself. And probably Wil if he is that severe. Hope I did'nt repeat myself too much . That is one of my symptoms. Drives my husband nuts!!!!! june
Posted 6/20/2008 5:58 PM (GMT 0)
Hello June,

  I do understand as I get confused and frustrated and I am not the sick one! It is really hard as a mother not to be able to help your children when it comes to their health. Yes, I am almost positive he contracted Hep B thru bloodtransfusion however, the Dr's. won't come out and say that. In his reports when he was first diagnoised they refer it to a BIOCHEMICAL reaction from his chemo. I'm sure that's so we wouldn't sue for malpractice as he had an adult leukemia at 16months old and on experimental drugs at that time PLUS,they did not test for Hepitis only HIV. What bothers me is at 6 yrs. old we were told he was in remmission with the AML and did not need to return for 10 yrs. He even had his Hep vaccine at 13 yrs.old and was literally not sick a day in the 10yrs. time frame at 16yrs.old 180lbs 5'11 he was a chunkymonkey and very healthy.

  At our anniversary 12 yrs. in remmission 2002 Dr's. floored us with the potential side effects. Why would'nt they have contacted us within that 10 yr span to atleast worn us of the probability? My feelings are these Dr's. have made him worse they dropped the ball twice now. In the past 5 years i have seen Wil just deteriate away he is  now 6'1 140lbs. No insurance will pick him up and of course SSI and Medicaid are no help at this point that is the dissapointing part. Yes, he was refferred to transplant coordinator 3 months ago but, she stated since he has no insurance that we would have to come up with atleast 400,000.00 for the transplant (IT IS ALL about THE MONEY AT THIS POINT!!!) His MELD has been steady at and 9 for 6 months now but, they found 2 lesions on his right anterior and posterior lobe which they check him every 3 months to make sure it doesn't become cancerous! Wil has always had an upbeat attitude, and say's I worry enough for us both so he doesn't have too! He has excepted that one day we all must go and God is the only one that knows when that will be as he has beat the leukemia, he will beat this as well! I have always told him God has a reason why you are still here and one day we will know what that reason is! My moto, Our moto is live everyday as if it will be your last, love, laugh and treat everyone that you meet the way you would like to be treated! I am a very lucky Mom to have such great caring kids and I have 4 of them! Anyway Wil, opted to do early graduation from Highschool because he was sick his senior year.

He was Lt.Crn. in ROTC with a dream of joining the Airfoce but, that kinda got shot down! So, he works with his father at his pool store and he has his own pool cleaning route. I know he would love to be in coulinary art school as he loves to cook! He just doesn't have an apitite, and is always tired and has complained lately of stomache, back and leg pains which comes and goes.  He has been sick with bronchitis alot so far this year and I can see signs and symptoms and surely pray they don't get worse. But, from reading alot of the horror stories I'm very afraid! Thank you for listening as I ramble on. I did notice you are up early or late whichever may be the case, Wil is an insomniac as well. Take care of yourself and know you are in our prayers as well!

Huggs and smooches,

Toni

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