Anyone have/had NASH?? I need help

Discussion in 'Fibromyalgia Main Forum' started by valleyann, Jul 21, 2006.

  1. valleyann

    valleyann New Member


    I was just diagnosed with NASH, well the doc said he was 99% sure. I was wondering if anyone has had or has NASH that I can talk to about this??

  2. findmind

    findmind New Member

    I have NASH, (non-alcoholic steato hepatitis), or "fatty liver disease".

    I think I responded to one of your other posts about this, with my very positive response to milk thistle.

    It has cleansed and kept my liver enzymes back into the normal ranges.

    The National CFIDS Foundation had a good article in one if their issues of the Forum, where they stated that it can be a side effect of CFS for some reason.

    Do you have any particular symptoms associated with it? I don't, and never did, the elevated enzymes just showed up out of the blue on a regular lab screening test.

    I did have this happen to me after I stopped smoking and gained 30 pounds in a year and a half.

    If you have any questions, just post me, ok? Don't know if I can help any more that just this; the milk thistle is all I take for my liver.

    Best to you,
  3. valleyann

    valleyann New Member

    I really appreciate you responding to my post. I remember your response to my earlier post and wanted to ask you if you had a liver biopsy to be diagnosed? My Hepatologist didn't request a liver biopsy before he diagnosed me with NASH. All he told me to do is lose weight and keep healthy and if my enzyme count doesn't go down to go see him in a year's time.

    Can he diagnose NASH without a biopsy? He said he was 99% sure that it's NASH.

    Once I have NASH, am I more suseptable to liver inflamation in the if I reverse the inflamation can it keep coming back if I don't stay healthy?

  4. IlivetocantoronXena

    IlivetocantoronXena New Member

    OMG I thought I was the only one!!!

    I got DX in 2003, yes dear you need a biopsy to confirm it.
    Nash is permanent damage all one can do is nurse your liver along. Like look out for the drugs you take, no alcohol and keep you weight under control. There is really no cure for this after it become NASH. I am five foot three inches and 144lbs never been really over weight. Not obese ever. Fatty liver disease can reverse it self and the liver can heal. If it is not address in time it progress to NASH which can not be reversed. You need a liver BX to see how much damage there is. One does not want to get the scoring of Cirrhosis that would mean end stage liver disease. I am at stage 4 which is end stage. I was so upset I thought I had been given the death sentence, I have excepted it and I am still here kicking. ONCE AGAIN THIS IS A VERY SEROUIS ILLINESS. Should need support or help please give me a holler .
    Blessings Michelle

  5. valleyann

    valleyann New Member

    Hello Michelle,

    That's what I thought (that you need a biopsy to confirm) but had mentioned Fatty Liver and NASH. He told me to lose weight and basically see what happens with my enzymes. I suppose he thinks that I have Fatty Liver and that if I lose weight it will go away.

    But he did say I think you have NASH, also called Fatty Liver...which confused me. But maybe I just heard him wrong. They said my liver is inflamed too (which would be NASH). So I guess from their perogative whatever they think I have Fatty Liver/NASH I can reverse it with diet/exercise.

    He told me to come back and see him after a year, if (a)I lose weight and my enzyme count is still high; or (b)I can't lose any weight and my enzyme count is still high.

    Also, I have to get my blood tested every 3 months to keep track of my enzyme count.

    He has asked me if I have been tested for diabetes too...did you get tested for diabetes after your DX of NASH?

    I'm just really confused about this all and I feel like I need someone who has NASH to talk to about this. I guess right now I'm in limbo and I probably wont know for a year whether it's NAFLD or NASH...that scares me.

  6. IlivetocantoronXena

    IlivetocantoronXena New Member

    Yes dear I got regular blood testing every 8 weeks.
    Fatty liver can be reverse by diet and weight loss. NASH can not. I would ask for a BX to know what you are working with, lets pray it is fatty liver. The inflammation is the liver fibrosis dear. I have and had terrible pain right under my breast doc always thought it to be my gallbladder, not it was my liver so don't let any doctor tell you one does not get liver pain, it is from the inflammation. I had ultra sounds that showed nothing, and cat scan of the stomach it showed a enlarged spleen. Primary sent me to a CA doctor before the NASH DX, I was so scared. No dear I don’t have diabetes as of today lol, though I have a double whammy both parents and all grand parents had it. I have to tell you fatty liver is different than NASH, fatty liver progress’s into NASH which can’t be reversed dear. Any thing that has to do with ones liver is very serious and life threaten, everything goes thought the liver. Please keep me posted dear. There is a liver support group message boards, chats, doctor chat. It is called
  7. findmind

    findmind New Member

    Geez, michelle, its so hard to type your screenname, lOL!~

    Anyhow, yes, ann, I did have a biopsy. I was never told it is a serious condition by the gastro docs. They just told me to have my enzymes checked every 6 mos at regular dr. follow-up.

    So, I went on milk thistle 3xday and I think I'm doing well, I forget to make sure dr. did enzyme tests!

    So, guess I'll ask for them in Sept when I go again.

    I do have some pain in liver area, but always relate it to muscles or costochondritis I have.

    I don't understand how a biopsy can tell how advanced it only grabs a teeny piece of liver, so how do they tell if it is all over it?

    I hope you get the answers you need. Think I'll check out the liver site michelle gave us!

    Best to you,
  8. IlivetocantoronXena

    IlivetocantoronXena New Member

    Yes I am sorry about my name I wasn't thinking the night I made it, I just love my horse Xena and love to canter on her it is a type of gait (running) 3 beats. Just call me Michelle that is much easier.

    The liver pain I have is not a steady pain, comes and goes and it is not a very sharp pain it is a dull ache. I to was told I had costochondritis, but it was and is liver pain. I am not so sure how they scale the damage? All I know is that the piecies they take are in different area's of the liver, they took like 6-7 pieces out of me. I believe under the micro scope they can see the inflamation and the scaring to get to the degree of the dieased liver.
    The BX hurt after the local wore off, I ended back into the er the next am due to the pain. They took a CT of the liver to make sure that the area's were not bleeding out and gave me some percocets. I have to admitt it was worth the pain of the BX to know what I was dealing with.

    I hope you both find, answers and support on the site I gave you both.

    Peace out ( isn't that what the kids say theses day's)
    [This Message was Edited on 07/22/2006]
  9. valleyann

    valleyann New Member

    Hello Michelle,

    Thanks for the good information! I was also wondering, if someone has Fatty Liver would their ALT enzymes be elevated or would that just be if they had NASH? I heard that if the ALT enzymes are elevated it means that the cells are damaged and releasing the enzyme into the blood stream, so that would mean inflammation right? That's probably why the doctor said my liver is inflamed and used the term NASH. But then why would he think it would be reversed by losing weight if it's NASH and it can't be reversed? Does this make sense to you?

    It seems as though the specialist I went to wasn't too sure whether it was Fatty Liver or NASH because he used the terms interchangeably. I wonder why he wouldn't have ordered a liver biopsy then? He must not think that it is too serious I guess.

    I think I am going to talk to my family doctor and ask her about this. Maybe she can order a biopsy? If not, I'm going to wait a year, lose some weight and then see what happens.

    If my ALT enzymes go down would that mean that I just have Fatty Liver or can they go down with NASH? I just don't want to be all excited when and if they go down and have my liver end up being damaged anyways…you know?

    I also had an ultrasound that showed up clear…so I guess they are just diagnosing me strictly on my weight, I am over weight, and my blood tests.

    Thank you for all of your help and support! I appreciate any answers you can provide me with.

  10. IlivetocantoronXena

    IlivetocantoronXena New Member

    In my earlier posting remeber how I told you there was no cure for NASH, we can only nurse our livers along, so that the disease can not further progress to cirrhosis ?
    He most likely told you to loss weight to nurse the liver along, so that there will be no further scaring/damage to your liver dear. Yes You enzymes might or might not go down. I am not sure about the alt enzymes to DX NASH. I know that the BX is the only way to DX Fatty liver or NASH
    I hope this helps you understand a little more.

  11. valleyann

    valleyann New Member

    Hi Michelle,

    Thanks very much that makes more sense to me now. I guess if I want to know anything for sure I'll have to get a biopsy done. :)

    Take care.
    [This Message was Edited on 07/24/2006]

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