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264121 tn?1313029456

Really Stymied Folks

As time goes on, I will be able to bring you folks more info on this developing situation, but for now, this is what I've got.  And I find the situation to be fairly perplexing.  I'm looking for thoughts and ideas from the rest of you as to what could be happening here.  I have a good friend and she has a friend (who is only an aquaintance of mine),  I'm getting kind of sucked into this because she feels I know about medicine and perhaps I told her that I used to be hep c + (I honestly don't remember).  

At any rate, her friend is male, and roughly late 40's to about 50.  He is perhaps 75 lbs overweight and fair complected.  He is a little different.  He seems to have perhaps, bipolar disorder and possibly aspergers.Some days his behavior is quite normal and some days he is quite difficult to interact with.

Anyway, for the past couple of weeks at least he has been experiencing severe upper abdominal pain.  Almost certainly conclusive for gall bladder issues due to location.  He has no insurance, but we do have a clinic here and he was able to get in to see someone and have it removed.  Turns out, the gall bladder was quite bad at the point they removed it, it made the pain quite understandable.  Here's where things get odd.  He was out of it, so they talked to my friend, as she is literally his only medical contact.  He has no family.  They told her that he has cirrhosis of the liver.  Which terrified her.  They took a biopsy, which they have sent off to God knows whom and whether these individuals have the resources to check all of the things that should be checked on biopsy.  It should be noted that my friend insists that her friend both DOES NOT DRINK and HAS PREVIOUSLY BEEN TESTED FOR HEP B AND C and does not have either.

Well huh.  If this is the case, then I have to start considering things like primary biliary cirrhosis, autoimmune hepatitis, (whether or not his physician just misdiagnosed a fatty liver as hep - the gentleman is quite overweight), that sort of thing.  PBC and autoimmune happen far more often with women, so that would be odd although not impossible.  PBC would also be rather bad.  Not a lot of good options for dealing with that one.  It would rather explain the development of the problems with his gall bladder and biliary system though.  He is a rather effeminate gentleman.  It wouldn't utterly surprise me if he were to get a disease usually reserved for women.

I guess at this point I cannot advise them further until I receive the biopsy results.  All I can do is find a good hepatologist nearby to ensure that they are at least in good hands throughout this process.  This is in South Alabama.  Anyone have any insights on this for me?
7 Responses
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264121 tn?1313029456
Well I KNOW I can't possibly conclusively diagnose the guy myself, hence the sentence that the best thing I can do for him is to get him to a good hepatologist.  Still, it would be completely against my nature not to try to figure it out before he gets formally diagnosed.  Geez.  I always like a good puzzle.  I mean, the guy wakes up from surgery, and next thing he knows he's being told, "We got the gall bladder, and Oh yeah, you have cirrhosis."  

His surgeon referred him to some sucky gastro at our equally sucky local hospital.  I would drive an hour not to go there even if the only thing I needed was a shot for a migraine.  I made the mistake of going there once for a cbc.  It should have been a simple blood draw.  I ended up with an ekg and some male nurse's finger up my butt even though I told him I had a macrocytic low epo anemia of 20 years standing and I had just had a normal haptoglobin as well as a normal colonoscopy.  I said there was no way I was losing blood.  He insisted on the finger probe.  

So the least I can do for my friend is to get HER friend referred to someone who actually knows something about medicine.  I'm going to at least try to get him over to one of the better hepatologists at the closest teaching hospital.

Also, I agree that (should he be correct about his non-hep B/C status)  theoretically there is a laundry list of diseases that could cause his cirrhosis (if that's even been diagnosed correctly).  I'd already considered both Wilson's and hemochromatosis.  I carry one of the genes for hemochromatosis - being heterozygous is really not that rare - but it apparently contributed a little bit to my vast iron storage during all of my transfusions while treating (according to my hematologist - I didn't know that one gene would matter).  

I'm thinking though - after reading the responses and doing some additional research - that the most likely thing in his case is some type of cryptogenic cirrhosis caused by diabetes/obesity, or NASH, something of that nature.  I'm hopeful that I can get him referred to a hepatologist at a better hospital at the outset so that he can be properly diagnosed.  I'm afraid that I either won't be able to get his doctor to refer or that he actually will want to stay local as opposed to driving an hour.  If that happens my friend is just going to have a nervous breakdown...  Whatever happens medically, she will be taking care of him, even if she has to move him in with her.
Helpful - 0
419309 tn?1326503291
Being a hepatitis community I think we instinctively gravitate to hep and the more familiar conditions when discussing what can cause cirrhosis, but as some others have pointed out, there are many other disease states that can lead to cirrhosis.  

There are many possible causes, certainly some that could be a result of environment or exposure, but there are a myriad of genetic possibilities too:  hemochromatosis, or if he has odd behavior, you could consider Wilson's, or alpha-1 antitrypsin or some other in-born error in metabolism -- it's such a wide field of possibility it's like shooting the moon.  Not to mention there are cases of cryptogenic cirrhosis for which not even medicine and science can fathom.  

All the same, best of luck to this fellow, and hope his docs can find a cause and cure.
Helpful - 0
Avatar universal
Yep, if he doesn't drink alcohol then I would guess cirrhosis is from NAFLD.
Helpful - 0
Avatar universal
What the past 2 posters said.

Check out "Supersize Me."
http://en.wikipedia.org/wiki/Super_Size_Me

Morgan Spurlock experiences high LFT's in just weeks, high triglycerides, etc.  His gastro warns him to stop the McDdiet because the outcome could be potentially dangerous.  You can draw your own conclusion what years of overeating could achieve.  I also recall a child getting some of the tests that we......we with liver disease get; overeating can net you the same results that the virus may.

Agreed; get checked out by a pro.

willy

Helpful - 0
568322 tn?1370165440
He's overweight.  Perhaps the damage happened from NAFLD.  Also, he's probably insulin resistant and IR can make the damage advance faster.

But as Hector says, best to leave the diagnosing to a doctor.

Co
Helpful - 0
446474 tn?1446347682
He needs to see a doctor to get properly diagnosed and then treated if appropriate. There are many diseases that can cause liver cirrhosis. To try to guess what it is is a waste of time. I understand you want to help but the best way to help is to help him find the best medical services that are available.

My advice is to stop trying to diagnose him based on 2nd and 3rd party information. Having hepatitis C doesn't make a person a doctor or any kind of medical professional I'm afraid. Even a doctor can't diagnose someone based on hearse and guessing.

Good luck.
Hector
Helpful - 0
264121 tn?1313029456
Also, I wanted to say that I almost hope that his previous testing was wrong and that he does have hcv.  It's one of the only ways I can think of that he can get treated and at least somewhat have his liver improve at least somewhat afterward.  With some of the other options, there is no ability to treat his liver other than getting a transplant.

So it is so odd that I say this, but having hcv may be his best option.  Even though it appears that this will not end up being the case.  This may be the first time I have ever actually wished for someone to have hcv.
Helpful - 0
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