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Re: fatty liver diseaseFrom: Amy (anonymous@obgyn.net)Fri, 22 Feb 2002 21:57:59 -0600 (CST)
At Wed, 20 Jun 2001, Amy wrote: > >Okay, I haven't been here at all in prolly a yr, but o well. Anyway I >was told today that I had fatty liver disease and I was going to have a >liver biopsy so they could see how bad it was. Well I couldn't find >hardly anything about it on any site, since I don't drink. I just >remember reading a while back about it and it said that endocrine >disorders can maybe cause it, however, that was only one place I found >it. I am having so much trouble finding anything about this, even my >mom (who is a nurse) couldn't find anything about it in any of her >medical books. Well I know I read some of you had fatty liver, but does >anyone have fatty liver disease? (wishing there was a forum somewhere >for that, but so far I havent' found one). >Well, my history here is that I did have hepatitis A and mono about a yr >and a half ago, but I've been diagnosed with PCOS for about 2-2 1/2 yrs. >I just lucked out that I found out I had PCOS I guess, since I am not >sexually active so therefore me being infertile never came up, only that >I have a diligent dr who takes me seriously did I find out I had this in >the first place, and now that I have something wrong with my liver. >Anyways, (I tend to go off on tangents, sorries) I went to the dr last >august cause I was sick to my stomach for a while and they did bloodwork >and my liver enzymes came out way high. So they did a sonogram of my >liver and my spleen and then they did the SAME things this past jaunuary >and the liver enzymes came out high, and so did an elevated liver >function test and I had fat in my liver and both it and my spleen are >enlarged. I am still waiting to actually have the biopsy done, but the >dr is fairly confident that's what I have because he did all my other >bloodwork to check for other things and those came out normal. Anyways, >I just remember getting the most help from this site no matter what the >heck was wrong with me, whether or not it had to do with PCOS. You are >more supportive than any other site I've seen so far. >If you can help then please reply, information or good sites or if you >have it yourself, any of those would help me A LOT. Thanks!!! :) > >PS wow this is long, heh
-- Hey this is Amy again and well I hadn't been here oooo in quite a while, so I thought I'd let you know what they said about this. I did finally find a site with a message board today, the only problem it isn't for only NASH, it's for any gastro disease. But anyway, I had my liver biopsy done and they confirmed fatty liver disease. They have given me urso (experimental with this disease), told me to lose weight and take vitamin E (not quite sure why that). Well since then it's taken me quite a long time, the day I went in for my biopsy in july I was 243 lbs and now am 210, so I guess that is an improvement, but I haven't lost anything else since the beginning of the yr. I have now found far more reasearch on this disorder amazingly even from a yr ago when they told me I might have it. They said I had fat in my liver and that it was inflammed, hence steatohepatitis or non-alcoholic steatohepatitis since I don't drink. Now FINALLY they are finding that insluin resistance is common in people with this disease which would make me wonder about most of the people here. But anyway, the latest research I've gotten with this is one metformin has been known to completely eliminate fatty liver in mice at least (I don't know how it would work on the disease since it isn't the same in severity), but still interesting since that is one thing prescribed for PCOS. O and yes I found something else on people with NASH actually creating alcohol in their bowels with this disease done by john hopkins university, it is interesting to me at least. Now all of that is interesting, but what I'm having a hard time with is... that my enzymes were over 600 and if people I know ask about me and what the dr said (because they knew I had a biopsy) and I tell em I have fatty liver disease, they'll say I have fatty liver and they have no pain, no swelling, no jaundice and their enzymes are like as one girl said 118. They think o it's no big deal when my dr told me very specifically because of the severity of mine and of being so young as I am, I may actually need a liver transplant. It is just irritating I think when people just kinda take it as a no big deal, nor do they understand the reason I get sick so often is directly related to my liver as both my pcp and gi dr told me. They think I am making up the disease just because they have never heard of it. (sound familiar? ran into that with pcos too) Then I was getting so irritated from all that and no one taking me seriously at all, until my cousin tells me that some friends of hers daughter was 16 and died from NASH because it went untreated and unrecognized until it was too late. By the time hers was treated her liver was 4-5 times the size it is supposed to be. So I'm not taking this news very well either, but at least someone out there understands my concern. She told me that couples dr had told them that people likely to die from this get it younger (maybe because the older you are you have more health problems that you could die from??? I don't know). I am so frustrated I want to scream, I go back to the dr soon (both the pcp and the gi) and maybe they can tell me if all this work has done any good at all. I am thinking I may have to start my own site with my own board just for that disease so I can get some help there. But anyway sorry if I ramble, don't make sense or am emotional, but I just met this girl two days ago that has had 13 liver biopsies and a liver transplant and she knows people with this same disease as I have (even though it's not what she has) and she seemed to think my gi dr was a horrible one for various reasons I don't want to get into, but it's making me question how seriously I need to take this and if I should change drs. Thanks for listening to my complaints.
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