Thoughts on finding cause of Jaundice - Liver & Pancreas Disorders Message Board

nobody1627 · 12-08-2006, 09:04 PM

Hi.

I thought I might try posting here to see if anyone has any thoughts on what might be causing my jaundice; and, the treatment I have received to date. Anyone with thoughts or ideas feel free to post them.

I'm a 37 year old male who has been active and pretty much completely healthy my whole life. About three years ago I would say I was in near "top" physical condition; but, with a new family and impending marriage and financial concerns the last 3 years I haven't been as active as I had been for the past 15 years; but, I would still rate my general health status as "above average".

I'm 6-0 tall, probably about 225 (but maybe about 12% bodyfat). I rarely drink and haven't used any illegal drugs. About the worse thing I've done in the past is use a few different "dietary supplements" in my workouts, the worse being things like ephedra, dabbled a bit with a couple of the "prohormones" that popped up into the weightlifing scene a while back, and used a few of the more "cutting edge" dieting supplements (but all of those date back at least 3 years, many longer).

Well, right about two weeks ago, I got a bit of a bad stomach-like flu that had been going around. Mostly stomach aches, a bit of vomitting, and diaria.

Right about the time I was getting better I noticed my urine started to turn very "frothy" and dark which, after 15 years of working out, was very strange for me (even with eating pretty clean and using vitamins regularly, my urine usually was always a very light yellow). Right after that, my feet started itching very badly; and, than other parts of my body slowly. My bowel movements started to turn very white in color with a very light texture; and, right about the end of November, I slowly started to notice my skin turning yellow.

It took a couple days; but, eventually I turned quite yellowish. Not a dark yellow; but, enough for people to notice. I waited a couple day, a bit just to see if it might turn around as quickly as it came; but, it didn't. It progressed to the point it is now (yellowish, some yellow in the eyes, lots of itchiness, occassional upset stomach, and the same urine/bowel symptoms, some tiredness but primarily probably from not sleeping well due to the itching than anything else).

Never had any liver problems before, no family history, no pain.

So, I went to the doctor this Tuesday and she didn't have a lot of solid ideas yet. A bit surprised, she rushed through blood tests and gave me a ultrasound on my gall bladder immediately. She was off Wednesday and Thursday told me that the tests were still inconclusive.

The ultrasound was a bit off as I didn't have time to prepare for it and had eaten within a few hours of the test; but, from what could be seen nothing seemed out of order. She said the liver scores from the test were a bit elevated; but, nothing so much out of the order as to indicate the liver wasn't working anything too much out of the ordinary given that I currently am in a jaundiced state.

She said that the pattern of the bloodwork seemed to indicate a "blockage"; but, that the blockage (if that is the problem) is from the bile leaving the liver rather than exiting it; and, from what I can get from how she described it, much of the contents of the liver being pushed back up into the body rather than leaving it due to the blockage (hence, jaundice symptoms).

She next ordered a MRI or a cat scan (MRI I think). I got the pictures taken at a hospital (my doctor works at a primary care office); and, I was told a GI specialist would review them, talk to her, and then me. Well, I waited after and a nurse just told me to go home afterward, that things were ok for the moment, and the doctor would call me Thursday.

Well, yesterday (Thursday), she called and said the MRI didn't show anything out of the ordinary; and, that combined with the rest of the bloodwork, still indicated a blockage of some sort, perhaps in the liver itself, or in the draining parts that were not shown well in the MRI (things like Hepatitis, etc. were ruled out).

Well, it took a day to get my records together and now early next week I am supposed to go to a GI specialist who is going to do something called a ERCP test (or something close to those initials). It is the test were they shoot your liver full of a dye and use a probe to trace the patters of entry and exit into the liver to find any sort of blockage.

Well, now I have to go another couple days jaundiced, sick, and uncomfortable without any clear answers waiting for a third group of doctors to take a look.

Well, my question is, does all this seem like its going as it should? It seems ok; but, the time spent waiting makes me a bit uncomfortable; and, it seems like there might be more they aren't telling me. I am the type of person who would rather know as much as totally possible than to be kept in the dark about what might still be out there. From what I can gather, my liver tests and stuff seem to indicate the liver isn't the problem; but, could it still be (I mean like some type of liver cancer or something)? Is a blockage likely to be some sort of closed tube or obstruction like a stone that has dropped low; or would it be like a tumor or something?

What should I be looking for at my appointment Monday or Tuesday with the GI doctor and what questions should I be asking. Is there something this could be that the doctors aren't commenting on or aren't focusing on right now?

I've got two small kids and am a bit worried; and, want to do everything I can to get this treated as fast as I can to hopefully get better soon. Thank you to anyone who takes time to read and reply.

feelbad · 12-09-2006, 07:57 AM

rather ***arre story to say the least.do you have all copies of all testing including radiology reports and most importantly blood work?If not,start gathering these up from any place and anyone who has ansd will be seeing you in the future.having this stuff just for your own personal records really really is vital for many reasons.also very helpful to have for refference or if you should have to go to an ER or something or are traveling(obviously always take a copy with you)I was a bit confused further up where you mentioned "from the bile leaving the liver rather than exiting it"?? was that a typo or something since it didn't make too much sense to me.just wondering.

a blockage of bild ducts somewhere could be causeing your particular types of symptoms.the thing is,when my son was actually in liver failure and the day he was Dxed,he was already down to only having about 20% of his liver function left but STILL showed absolutely NO signs of actual jaundice yet.i just always assumed when there was a liver problem,it kind of was automatically there ya know what i mean?his did not actually show up UNTIL he developed pancreatitis along with blocking of his bile ducts.sooo,i am thinking you may have that bile duct blockage?does that sound like what they may have been talking about with you?an ERCP really IS a wonderful test to try and identify your type of blockage,really.my then 12 year old son had to have many many of these done just to try and place a tube into his rock hard liver and into the actual bile duct to try and drain an infection from it.his interventional radiologist(this is the type of doc that will be doing your particular ERCP)said it was like tryingto shove a straw into a rock.not good.

I think once you get that ERCP done,they will be able to tell you a bit more about whats actually going on.it could be any number of things including some sort of a stone.but you will know much more than you do now once it is completed.do you know what your actual bilirubin numbers are?they have to be up there in order for your body to actually show jaundice.something is preventing the liver from ridding it of the old red blood cells,which will show up under the skin as jaundice.this would be called bilirubin,or the bili level.your AST,ALT and the alkaline phosphatase are also the big labs that will tell how your liver is really functioning.you really DO ned to get a hold of your lab sheets to see whats up there,and of course,allother medical records,including all clinic notes made by all docs you have seen and will be seeing.

it sounds like from what you have told me here that your docs are probably telling you pretty much everything they know at this point.from what you explained,it all makes sense to me.i am not a doc of course but have had some experience with this crap because of my sons issues.all you can really do at this point is wait unfortunetly,but you can start gathering medical records.i have all my many medical records from all of my many medical issues as well as my sons.it really IS good practice to just keep your own stuff.i can;t even count the number of times i have had to go back into my own records to check a date or reread an MRI report or some other thing.these would have all required alot of phone calls and other crap if i had not had them all here.anyone who has any sort of actual Dxed medical condition espescially needs to keep on top of all your records.

i hope all goes well for you,really.hopefully the blockage can even be cleared during the ERCP and you wont have to actually require any other treatment.it all depends on whats actually causing the block.please keep me posted on things,K? if you have any other questions,just holler.good luck,Marcia

nobody1627 · 12-11-2006, 12:32 AM

Hi. Thank you for the kind thoughts and input. Yeah, I'm not sure exactly what the doctor meant by the bile being "thrown back up" into the body rather than excreted either, I'm thinking maybe she was trying paint a simple picture of the situation so that I could visualize it as a means of explaining the situation (the idea that a blockage is preventing things that need to be put out of the body from exiting). I'm not sure. My first doctor was Chinese. Her english was good; but, I think a few things in her explaination were lost due to a few language issues (plus the fact that she tended to talk a bit rapidly).

This is the first time I would say I've really had something go wrong with me. I'd LOVE to have copies of my records. I didn't know I could get them actually. I mean, I know it is possible to get them in certain situations, it just seem that most regular doctors I've ever dealt with (including this last one) have been very guarded in explaining things too much above and beyond the basics. I've kind of thought doctors giving up records is something they don't like to do; but, if it isn't, I definitely will see what I can do. I believe the GI specialist is supposed to get a packet on me, perhaps I could get some of the info at my next appointment.

I have a lot of hope for the procedure this week, I'm am so tired of the crazy itching especially. If this doesn't do it, I'm not sure where we go next. I'll keep all interested with updates ...

Elev8edLFTs · 12-11-2006, 02:31 AM

Hello may I first say that I completely and totally understand your frustration and worry. I have been healthy my entire life until a strange rash appeared on my hands and feet causing doctors to think I had hepatitis so after blood tests my enzymes came back extremely high. This was in August, after a biopsy, mri, ultra sound, blah blah blah still no answer they saw a few fatty spots on my liver but that was all, this is December and still no one can tell me what is going on. At least your doctors seem to have some sort of idea what may be wrong. Its the waiting and wondering that is so hard to deal with...I feel for you truly I do and hope everything comes back okay. Keep us posted and take care of youself

feelbad · 12-11-2006, 09:28 AM

the docs really don't have a whole lot of say in you being able to access your own medical records.if you want them,you are entitled to them.so far,in all the years i have been gathering mine,i have never ever been charged any sort of fee,but i know i have spoken with others on various forums who have had to pay.it all depends on where you live i guess.but in most cases,espescially if this is the first time you are asking for records,you should not have to pay any fees.but like i said,every place is different.but they would still be worth the money to have these in your possession,really.they are that important when you are dealing with a condition such as yours.

all you have to do is just call every place that has seen you,any docs,any testing facilitys or hospitals for surgerys,any place.ask them to just send you out a release of information form to obtain your medical records.they will know what it is.they send that out,all you do is fill out a few simple questions,sign it and send it back,and they do the rest.in around a week or so,your records from that particular place will be sitting in your mailbox.its that easy,really.

most docs offices have actual companies who come in about once a week just to copy off medical records for people who need them for various reasons.believe me,you should not have any problems what so ever in getting all of your records.then like every six months or so depending on how often you are seeing any particular doc,just call them and ask them to send out the new stuff.the release is good for one year,then you just have to fill out another one like the first time.very easy stuff.

i wish you luck on your ERCP and hope they can help you right then so you don't have to keep coming back for whatever they decide you need to do.please let me know how you are doing,K?marcia