nobody1627
12-09-2006, 12:04 AM
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.
:)
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.
:)
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feelbad
12-09-2006, 10:57 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
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, 03:32 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 ...
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, 05:31 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 :wave:
feelbad
12-11-2006, 12:28 PM
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
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
Lenin
12-12-2006, 10:58 AM
Nobody,
You are describing a textbook case of HEPATITIS A. It comes on fast with vomiting, food intolerance, jaundice, itching, coffee urine...and in worse cases WHITE stools. You probably casught it in a restaurant...salad bars are suspect...it passes via the fecal oral route...dirty hands.
Take it easy and drink NO alcohol, and with rest it will subside within a month...I sufferend only two weeks. (Actually started dry-heaving when I walked by a hot dog stand...oh, the smell of GREASE.) I forced 2 eggs per day to avoid protein starvation but STILL lost almost 30 pounds in 2 weeks. So force SOMETHING down...NOT fat though. There is nothing you can do but wait it out and avoid starving. Don't drink any booze for the next year! :(
"Backing up into the bloodstream"...
What she is describing has to do with the normal function of the liver to remove dead red blood cells. It uses these dead cells to make bile. BUT if the liver shuts down as it does with HepA, this dark brown material called Bilirubin builds up in the blood until it spills over in the kidneys onto the urine, darkening it.
Conversely, the ABSENCE of the bilirubin in bile and thus stools makes them WHITE. That scenario, along with yellow skin (from the same bilirubin) is JAUNDICE.
You will be left IMMUNE to Hep A and it will show up as antibodies for life...so back to the salad bar! :D:D
You are describing a textbook case of HEPATITIS A. It comes on fast with vomiting, food intolerance, jaundice, itching, coffee urine...and in worse cases WHITE stools. You probably casught it in a restaurant...salad bars are suspect...it passes via the fecal oral route...dirty hands.
Take it easy and drink NO alcohol, and with rest it will subside within a month...I sufferend only two weeks. (Actually started dry-heaving when I walked by a hot dog stand...oh, the smell of GREASE.) I forced 2 eggs per day to avoid protein starvation but STILL lost almost 30 pounds in 2 weeks. So force SOMETHING down...NOT fat though. There is nothing you can do but wait it out and avoid starving. Don't drink any booze for the next year! :(
"Backing up into the bloodstream"...
What she is describing has to do with the normal function of the liver to remove dead red blood cells. It uses these dead cells to make bile. BUT if the liver shuts down as it does with HepA, this dark brown material called Bilirubin builds up in the blood until it spills over in the kidneys onto the urine, darkening it.
Conversely, the ABSENCE of the bilirubin in bile and thus stools makes them WHITE. That scenario, along with yellow skin (from the same bilirubin) is JAUNDICE.
You will be left IMMUNE to Hep A and it will show up as antibodies for life...so back to the salad bar! :D:D
liver99
12-14-2006, 09:43 PM
I agree with Lenin, I would go back to the Dr and insist on repeat or new Hep. tests. If they poo poo you, then tell them forcefully that you want the new blood tests done, if they still refuse tell them you will get a second opinion and do it. It's you liver and your life. Be persistant. Once you get the test find out from the lab, not the doctor, how long the results will take and then call everyday until you get an answer. With doctors offices they think if you don't call you don't care, and often the dr doesn't get the results in front of them as fast unless you call call call. Be persistant.
nobody1627
12-15-2006, 11:05 PM
Hi.
Well, I went to the GI specialist and she decided against the ERCP at this time. Instead we went for a liver biopsy. Had that done yesterday (Thursday).
It pretty amazing in a way. Once the doctors were ready to start the procedure until it was all finished took all of about 4 to 5 minutes. A bit of "ouch"; but, all in all not too bad; and, no real measurable pain or soreness to speak of today. Most of the time spent in the hospital was preprocedure and about 2 hours of recovery. The biospy itself was so quick.
So, now we wait. Some (maybe all of the) results are expected by monday afternoon. In the meantime, I'm saving 24 hours worth of urine in a medical jug to test for the presence of copper. Interesting. This GI doctor seems to really be doing an excellent job looking at all the possibilities; and, getting the tests done. From that perspective I feel pretty solid about things. Its funny, when the doctor doing the biopsy came in, the first thing he said to me was that the same thing had happened to him 15 years ago. He developed jaundice and had it for about 3 weeks. They had trouble finding a cause and his went away before they ever located anything. That sort of illness is sounding pretty ok right now, especially since I'm going on about 15 or 16 days jaundiced now.
Anyway, by monday afternoon there should be a lot more info to work with.
Anyone else find it strange that, in this day and age, the medical community still doesn't do much on the weekends? For example, my first doctor takes wednesdays off as well as the weekends, leaving 4 days a week to do tests and process information. With the need to get tests scheduled often times at different locations; and, the time needed to get back results, it seems like there is a lot of downtime where, I guess, I'm just supposed to sit and be sick (and - as of yet - untreated).
Obviously they have told me if I get any worse to go to an emergency room; but, I haven't gotten any worse except to slowly feel like, after each passing day, I'm a tiny % worse in all ways. Not really the best of feelings when you aren't even sure exactly how sick you are.
For example, this is the second weekend where nothing much happens and I just have to sit sick. I know it could be worse; but, it is tough because if someone was available to finish the liver processing saturday, I could perhaps even be getting some treatment by saturday evening rather than monday evening. With the size of the medical community now, it would seem like there would be more of a push for 7 day a week treatment (other than emergency). Some younger doctors and staff could be available to work weekends; and, processing of tests could continue over weekends with primary doctors kept in the loop. Crazy idea? Maybe so ...
I did get a presciption to help with the itching and I'd say it gives me about 80% to 85% relief. Wonderful help, anyone with the same symptoms should not wait another day to get it ...
Thank you to all posting and reading! I'll update when I get more ...
Well, I went to the GI specialist and she decided against the ERCP at this time. Instead we went for a liver biopsy. Had that done yesterday (Thursday).
It pretty amazing in a way. Once the doctors were ready to start the procedure until it was all finished took all of about 4 to 5 minutes. A bit of "ouch"; but, all in all not too bad; and, no real measurable pain or soreness to speak of today. Most of the time spent in the hospital was preprocedure and about 2 hours of recovery. The biospy itself was so quick.
So, now we wait. Some (maybe all of the) results are expected by monday afternoon. In the meantime, I'm saving 24 hours worth of urine in a medical jug to test for the presence of copper. Interesting. This GI doctor seems to really be doing an excellent job looking at all the possibilities; and, getting the tests done. From that perspective I feel pretty solid about things. Its funny, when the doctor doing the biopsy came in, the first thing he said to me was that the same thing had happened to him 15 years ago. He developed jaundice and had it for about 3 weeks. They had trouble finding a cause and his went away before they ever located anything. That sort of illness is sounding pretty ok right now, especially since I'm going on about 15 or 16 days jaundiced now.
Anyway, by monday afternoon there should be a lot more info to work with.
Anyone else find it strange that, in this day and age, the medical community still doesn't do much on the weekends? For example, my first doctor takes wednesdays off as well as the weekends, leaving 4 days a week to do tests and process information. With the need to get tests scheduled often times at different locations; and, the time needed to get back results, it seems like there is a lot of downtime where, I guess, I'm just supposed to sit and be sick (and - as of yet - untreated).
Obviously they have told me if I get any worse to go to an emergency room; but, I haven't gotten any worse except to slowly feel like, after each passing day, I'm a tiny % worse in all ways. Not really the best of feelings when you aren't even sure exactly how sick you are.
For example, this is the second weekend where nothing much happens and I just have to sit sick. I know it could be worse; but, it is tough because if someone was available to finish the liver processing saturday, I could perhaps even be getting some treatment by saturday evening rather than monday evening. With the size of the medical community now, it would seem like there would be more of a push for 7 day a week treatment (other than emergency). Some younger doctors and staff could be available to work weekends; and, processing of tests could continue over weekends with primary doctors kept in the loop. Crazy idea? Maybe so ...
I did get a presciption to help with the itching and I'd say it gives me about 80% to 85% relief. Wonderful help, anyone with the same symptoms should not wait another day to get it ...
Thank you to all posting and reading! I'll update when I get more ...
nobody1627
12-15-2006, 11:19 PM
Hi. I forgot. Well, I know I got a test for hepatitis A when I originally went to the doctor (around the 4th) because, when I went for my appointment a week later the doctor specifically mentioned that they had all the results for the hepatitis test - except for the hepatitis A test.
Well, when she left I heard her ask one of her assistants to call and see why the results of the HA test were not in my packet (and to get them if they were missing).
From there, after my appointment, the doctors took TEN vials of blood testing; and, I'm pretty sure retesting for hepatitis was one of the many tests they were to run; and, I'm sure the result would be back by now (4 days later); but, I will definitely ask.
Actually, talking to the doctor who was doing the biopsy, I believe I remember his mentioning that there were a couple of other lesser common types of hepatitis that they stain the liver for after a biopsy, so, hepatitis isn't totally out of the question yet ...
Thanks guys!
Well, when she left I heard her ask one of her assistants to call and see why the results of the HA test were not in my packet (and to get them if they were missing).
From there, after my appointment, the doctors took TEN vials of blood testing; and, I'm pretty sure retesting for hepatitis was one of the many tests they were to run; and, I'm sure the result would be back by now (4 days later); but, I will definitely ask.
Actually, talking to the doctor who was doing the biopsy, I believe I remember his mentioning that there were a couple of other lesser common types of hepatitis that they stain the liver for after a biopsy, so, hepatitis isn't totally out of the question yet ...
Thanks guys!
nobody1627
12-15-2006, 11:27 PM
I have been losing weight throught the first 16 or 17 days of this. I would say it probably is 1/3 fat weight, 1/3 muscle weight, and about 1/3 fluids.
I'm not sure what I was weighing when I started, so I cannot say for sure how much weight I've lost total; but, I know over the course of week 2 I lost about 7 or 8 pounds, so, I certainly seem to have that symptom.
During the first 6 or 7 days, I wasn't that hungry; but, actually, my appetite has been pretty good mostly sense then. I seem on many days to eat a lot; and, for the most part, despite what is going in, not much is coming out the back end.
I'm wondering where the food is going, because my weight is going down too? Just another part of this strange illness that has me a bit confused.
I'm not sure what I was weighing when I started, so I cannot say for sure how much weight I've lost total; but, I know over the course of week 2 I lost about 7 or 8 pounds, so, I certainly seem to have that symptom.
During the first 6 or 7 days, I wasn't that hungry; but, actually, my appetite has been pretty good mostly sense then. I seem on many days to eat a lot; and, for the most part, despite what is going in, not much is coming out the back end.
I'm wondering where the food is going, because my weight is going down too? Just another part of this strange illness that has me a bit confused.
Lenin
12-16-2006, 11:17 AM
nobody,
HepA is the most fulminant of the Hepatitises (funny word.) It feels horrible, but is fast and furious leaving little damage behind. It almost always causes jaundice from liver shutdown.
The OTHER Heps (like B through God-knows-what today) are more subtle, rarely causing jaundice but destroying the liver over a VERY long time. Some can cause cirrhosis or cancer after many years.
But if it isn't HepA I will be very much surprised. I think they might have rushed that biopsy a bit.
Remember though, your liver is VERY much compromised during jaundice. The most exhausting thing you should do is watch television or read.
When you feel better, DON'T overeat. From personal experience I can tell you, the fast weight gain can be STARTLING:dizzy: :dizzy: !
HepA is the most fulminant of the Hepatitises (funny word.) It feels horrible, but is fast and furious leaving little damage behind. It almost always causes jaundice from liver shutdown.
The OTHER Heps (like B through God-knows-what today) are more subtle, rarely causing jaundice but destroying the liver over a VERY long time. Some can cause cirrhosis or cancer after many years.
But if it isn't HepA I will be very much surprised. I think they might have rushed that biopsy a bit.
Remember though, your liver is VERY much compromised during jaundice. The most exhausting thing you should do is watch television or read.
When you feel better, DON'T overeat. From personal experience I can tell you, the fast weight gain can be STARTLING:dizzy: :dizzy: !
andy19096
12-16-2006, 03:03 PM
Have your docs considered Gilbert's Syndrome? Give it a google. Nothing serious, but causes persitent jaundice.
nobody1627
12-16-2006, 04:57 PM
I thought about Gilberts too, especially since I had read that it often shows up for the first time after a serious bout with a cold or flu. I will ask and I'm sure (hopefully) it has to be one of the things they are looking for. I took a look at urine tests for copper (and the relationship between copper and jaundice); and, that would seem to be a pretty remote possibility.
But, since we are looking at it, most of the more common causes must be ruled out; but, I'm not totally sure. I'm ready for monday and it is only saturday afternoon, ughh! Itchy last night like crazy too, ugh!
Thanks guys!
But, since we are looking at it, most of the more common causes must be ruled out; but, I'm not totally sure. I'm ready for monday and it is only saturday afternoon, ughh! Itchy last night like crazy too, ugh!
Thanks guys!
razz123
12-16-2006, 10:34 PM
Do you have a low-grade intermittent fever.
I have had 2 bouts of jaundice in the last 10 years.
The most recent one was 5 years ago. I had all your symptoms and a low-grade intermittent fever....went to the Doctor a week after it started. They did a LFT and my liver enzymes came back elevated. After that they ran a number of tests (short of liver biopsy) and all came back normal. After about a month, I got better and all the liver enzymes went back to normal. Also, my CBC at that time of Jaundice clearly showed elevated Lymphocytes which would mean a Viral Infection.
Unfortunately, in the past two years...my total billirubin always comes back as elevated (around 2.2) though the other liver enzymes have been normal. My Doctor is just ignoring is as Gilbert's but I am trying to push him to do further investigations because of the 2 jaundice episodes in the past.
I have had 2 bouts of jaundice in the last 10 years.
The most recent one was 5 years ago. I had all your symptoms and a low-grade intermittent fever....went to the Doctor a week after it started. They did a LFT and my liver enzymes came back elevated. After that they ran a number of tests (short of liver biopsy) and all came back normal. After about a month, I got better and all the liver enzymes went back to normal. Also, my CBC at that time of Jaundice clearly showed elevated Lymphocytes which would mean a Viral Infection.
Unfortunately, in the past two years...my total billirubin always comes back as elevated (around 2.2) though the other liver enzymes have been normal. My Doctor is just ignoring is as Gilbert's but I am trying to push him to do further investigations because of the 2 jaundice episodes in the past.
nobody1627
12-18-2006, 10:27 PM
I'm not sure if I've had a fever. A couple of times I've felt I might; but, both of the thermometors in our house have been used by the kids (in the way a two year old gets their temps taken), so I haven't been able to test myself.
Funny thing is, I've been seen by four different sets of doctors and I can't remember ANY of them taking my temperature. It seemed a bit wierd to me (the physical examination part of all of my visits has been pretty limited: blood pressure, some pushing on the stomach, one looked in my mouth, listening to the chest, that has been about it); but, I have supposed they would check it if they needed that info.
Well, got the preliminary results from the liver biopsy and from what the initial look shows, my liver appears pretty much ........... normal!
Yeah, I was glad to hear it too. Liver always appeared to be the worse case, so, I was happy to hear it appears to have checked out ok.
They apparently are still staining for a couple of things, including something called Wilson's Disease which has something to do with copper metabolism.
So, good news is the liver appears to be strong, bad news is that they still don't know what is wrong with me. I'm gonna' get another week of blood tests tomorrow, mostly I think to see if things are getting better, worse, or the same. I am gonna try to get some more numbers; but, I do remember my bilruibin level being 33.0 last week, so, at least a week ago, it was sky high.
I've read about a lot of people who have gotten jaundiced only to see it go away, I'm hoping so; but, I'm wondering if, in these cases it really got "bad", I mean, was it full fledged jaundice (the kind where pretty much every other person you meet notices you are so yellow they ask you about it, crazy itchiness, yellow eyes, etc.), or was it like a "jaundice light"?
I'm only asking because we are having such a hard time finding an answer. I'm going on about 19 days jaundiced and I appear to be mostly in a holding pattern. If it was going to be a quick turn around kind of thing shouldn't I be seeing some improvement in my overall condition after 19 days if that was the case?
Thank you guys all again!
Funny thing is, I've been seen by four different sets of doctors and I can't remember ANY of them taking my temperature. It seemed a bit wierd to me (the physical examination part of all of my visits has been pretty limited: blood pressure, some pushing on the stomach, one looked in my mouth, listening to the chest, that has been about it); but, I have supposed they would check it if they needed that info.
Well, got the preliminary results from the liver biopsy and from what the initial look shows, my liver appears pretty much ........... normal!
Yeah, I was glad to hear it too. Liver always appeared to be the worse case, so, I was happy to hear it appears to have checked out ok.
They apparently are still staining for a couple of things, including something called Wilson's Disease which has something to do with copper metabolism.
So, good news is the liver appears to be strong, bad news is that they still don't know what is wrong with me. I'm gonna' get another week of blood tests tomorrow, mostly I think to see if things are getting better, worse, or the same. I am gonna try to get some more numbers; but, I do remember my bilruibin level being 33.0 last week, so, at least a week ago, it was sky high.
I've read about a lot of people who have gotten jaundiced only to see it go away, I'm hoping so; but, I'm wondering if, in these cases it really got "bad", I mean, was it full fledged jaundice (the kind where pretty much every other person you meet notices you are so yellow they ask you about it, crazy itchiness, yellow eyes, etc.), or was it like a "jaundice light"?
I'm only asking because we are having such a hard time finding an answer. I'm going on about 19 days jaundiced and I appear to be mostly in a holding pattern. If it was going to be a quick turn around kind of thing shouldn't I be seeing some improvement in my overall condition after 19 days if that was the case?
Thank you guys all again!
razz123
12-19-2006, 06:25 PM
Is your Direct or Total Bilirubin high ?
High Indirect (Unconjugated) bilirubin could also mean too much destruction of RBCs in spleen, bone marrow etc (Hemolysis) which could in turn be due to multiple causes.
Just throwing out an idea...not sure it applies in your case.
Also did the doctor do a routine CBC on you...if so..was anything remarkable.
High Indirect (Unconjugated) bilirubin could also mean too much destruction of RBCs in spleen, bone marrow etc (Hemolysis) which could in turn be due to multiple causes.
Just throwing out an idea...not sure it applies in your case.
Also did the doctor do a routine CBC on you...if so..was anything remarkable.
Lenin
12-26-2006, 12:59 PM
I've read about a lot of people who have gotten jaundiced only to see it go away, I'm hoping so; but, I'm wondering if, in these cases it really got "bad", I mean, was it full fledged jaundice (the kind where pretty much every other person you meet notices you are so yellow they ask you about it, crazy itchiness, yellow eyes, etc.), or was it like a "jaundice light"?
For me, with HepA, I was furiously nauseous, only vaguely yellow in my eye-whites if you looked HARD, skin looked normal and only slightly itchy, Urine was DARK cofee after 3 days of "flu-symptoms"...a week later my stools turned bone white and that lasted about 3 or 4 days. As they darkened, and my urine lightened I started to feel fine...and BEAUTIFULLY skinny! :D
I think my bilirubin went to 105...but that's vague, it was 30 years ago.
For me, with HepA, I was furiously nauseous, only vaguely yellow in my eye-whites if you looked HARD, skin looked normal and only slightly itchy, Urine was DARK cofee after 3 days of "flu-symptoms"...a week later my stools turned bone white and that lasted about 3 or 4 days. As they darkened, and my urine lightened I started to feel fine...and BEAUTIFULLY skinny! :D
I think my bilirubin went to 105...but that's vague, it was 30 years ago.
Lenin
12-26-2006, 01:06 PM
I've read about a lot of people who have gotten jaundiced only to see it go away, I'm hoping so; but, I'm wondering if, in these cases it really got "bad", I mean, was it full fledged jaundice (the kind where pretty much every other person you meet notices you are so yellow they ask you about it, crazy itchiness, yellow eyes, etc.), or was it like a "jaundice light"?
For me, with HepA, I was furiously nauseous, only vaguely yellow in my eye-whites if you looked HARD, skin looked normal and only slightly itchy, Urine was DARK cofee after 3 days of "flu-symptoms"...a week later my stools turned bone white and that lasted about 3 or 4 days. As they darkened, and my urine lightened I started to feel fine...and BEAUTIFULLY skinny! :D
I can't remember my serum bilirubin values...it was 30 years ago and I never kept the report (I've learned SINCE! :D) But I DO know that the degree of JAUNDICE is directly proportional to serum bilirubin.
For me, with HepA, I was furiously nauseous, only vaguely yellow in my eye-whites if you looked HARD, skin looked normal and only slightly itchy, Urine was DARK cofee after 3 days of "flu-symptoms"...a week later my stools turned bone white and that lasted about 3 or 4 days. As they darkened, and my urine lightened I started to feel fine...and BEAUTIFULLY skinny! :D
I can't remember my serum bilirubin values...it was 30 years ago and I never kept the report (I've learned SINCE! :D) But I DO know that the degree of JAUNDICE is directly proportional to serum bilirubin.
nobody1627
12-26-2006, 05:30 PM
Hi everyone, sorry it has taken so long to get back, holiday run around and all. Especially with all of this health stuff, getting focused on the holidays was pretty hard.
Ok, starting at the end of last week the doctor put me on a high dose of anti-inflamatories. I'm taking 60 MG of prednisone once a day. I think the idea is that perhaps something just has my liver inflamed enough to keep it from working right; and, if the inflamation can be brought down, perhaps the liver will start working better on its own.
I think that is it. I'm not totally sure; but, I think that is the plan. Actually, I think they sort of just ran out of ideas on what to look for, so, they are trying this. So far, it appears to be helping some; but, the results have been SLOW. Urine has lightened up the last couple days; and, the bowel movements, despite being pretty painful, have gotten much more brown in color (both with are good signs I think). Also, though it hard to tell because it is so subtle, I think my color is a bit less yellow. All in all, I'm not sure I feel a ton better; but, perhaps a bit. It will be interesting to see what my br level is now, as that should tell me more if we are really getting anywhere of if we are just still in a holding pattern.
Thanks all! Will update when I get some more info; but, right now we are just in a "wait and see" mode I think ...
Ok, starting at the end of last week the doctor put me on a high dose of anti-inflamatories. I'm taking 60 MG of prednisone once a day. I think the idea is that perhaps something just has my liver inflamed enough to keep it from working right; and, if the inflamation can be brought down, perhaps the liver will start working better on its own.
I think that is it. I'm not totally sure; but, I think that is the plan. Actually, I think they sort of just ran out of ideas on what to look for, so, they are trying this. So far, it appears to be helping some; but, the results have been SLOW. Urine has lightened up the last couple days; and, the bowel movements, despite being pretty painful, have gotten much more brown in color (both with are good signs I think). Also, though it hard to tell because it is so subtle, I think my color is a bit less yellow. All in all, I'm not sure I feel a ton better; but, perhaps a bit. It will be interesting to see what my br level is now, as that should tell me more if we are really getting anywhere of if we are just still in a holding pattern.
Thanks all! Will update when I get some more info; but, right now we are just in a "wait and see" mode I think ...
nobody1627
01-02-2007, 05:37 PM
This prednisone is a bit of some nasty stuff. Makes me a bit jittery (anxious sometimes too maybe), makes sleeping harder; and, I'm not sure I've ever felt more hungry on a consistent basis as while on the first part of the dosing schedule 60 mg (now at 40 mg).
Also, despite eating, it seems to have made slightly worse the weight loss. However, more of this weight loss seems to be muscle canabalism. I am pretty sure it will come back when I get well, it is just a matter of when that will be.
Well, as for getting better, it appears to be helping; but, the results are pretty slow. Last check my BR level was about 20 from a high of 34 the week before. Better, yes, still high, yes. For the first couple days I would say I was feeling about 2% better each day; but, since then I would put the improvement at about 1% a day ... which means, at this rate, it is going to take awhile to recover.
Just would like to get this itching under control, over a month of itching constantly, without the itching meds I am pretty sure I wouldn't have made it (even though it doesn't totally contol the itching by an means). This certainly will be something I never forget.
Well, guess that is the update for now, it would be nice if there was something else that could be added to the prednisone to speed things along. Anyone have any suggestions for the doctor, I'd love to hear them?
Also, despite eating, it seems to have made slightly worse the weight loss. However, more of this weight loss seems to be muscle canabalism. I am pretty sure it will come back when I get well, it is just a matter of when that will be.
Well, as for getting better, it appears to be helping; but, the results are pretty slow. Last check my BR level was about 20 from a high of 34 the week before. Better, yes, still high, yes. For the first couple days I would say I was feeling about 2% better each day; but, since then I would put the improvement at about 1% a day ... which means, at this rate, it is going to take awhile to recover.
Just would like to get this itching under control, over a month of itching constantly, without the itching meds I am pretty sure I wouldn't have made it (even though it doesn't totally contol the itching by an means). This certainly will be something I never forget.
Well, guess that is the update for now, it would be nice if there was something else that could be added to the prednisone to speed things along. Anyone have any suggestions for the doctor, I'd love to hear them?
Muzkmkr
01-03-2007, 07:01 AM
I have read your post and I can identify with your frustration. I went through the same thing 10 years ago. You may want to ask your physician about the possibility of PBC, otherwise known as Primary Billiary Chirosis. Don't let the chirosis part scare you....any disease of the liver is considered hepatits or chirosis. I had the same symptoms....but the main one is itching. You can be prescribed Questran for the itching and it helps. I had every test in the book and the deciding factor was the ERCP. Biopsy confirmed the stage of the disease and for me, it indicated it was very early stage. The ERCP is not bad as far as pain, etc....and very conclusive. I was put on a drug called Actigal and it has worked wonders. Actigal is primarily given to people with gallstones, to dissolve them. The disease, in my case, is a slowly progressive disease, hence the word "primary". I say, in my case, because I am not a doctor and don't presume to know everything. Keep in mind that your doctor will put all the facts together to arrive at his/her diagnosis. I have not been jaundiced, so I really can't give you any insight into that. Hopefully you are seeing a gastroenterologist for your problem. PBC is not common. I went to a doctor in Webster, TX (close to Houston) and I was his only patient with PBC. My primary problem, apart from the itching, was that I had pain when I ate....after about 30 days on the Actigal, I could eat whatever I wanted. Blood tests about every 6 months are done to monitor the liver function and while my liver function tests are still on the high side, they are stable. Also, I have been told that this in no way indicates that you have or will have cancer. While some people may at some point be a candidate for a transplant, it is all very individual, so please relax and calm down. Keep me posted on what the doc says. Good luck!
Muzkmkr
01-03-2007, 07:13 AM
Nobody,
Sorry if my post seemed out of order. I am new to this message board stuff and didn't realize that i was reading your original post without all the other ones after! DUH! I really used to be a blonde! Hope the information I gave you helped. Will be looking for an update.
Sorry if my post seemed out of order. I am new to this message board stuff and didn't realize that i was reading your original post without all the other ones after! DUH! I really used to be a blonde! Hope the information I gave you helped. Will be looking for an update.
gudewan
01-04-2007, 11:02 AM
I dunno what your situation is now, But I wanted to recommend that you look into changing your diet. The average HEALTHY american diet still includes food that wreck havoc on the liver, gall bladder, pancreas, etc. Western medicine tries to cover up symptoms with pain relievers and other quick fixes without trying to stop the reasons it started in the first place or clean or renew what you have left.
Look into foods that help the liver, greens and other plants, and consider a NO cholesterol diet. Just cause you don't get fat from eating meats, eggs or diary doesn't mean they aren't hurting you or clogging something up. Same with the pancreas and simple carbs. Also, I am concerned that the weight training shakes or supplements you are taking maybe not the best thing to keep doing. Our bodies aren't make for supplements, shakes and pills, and who knows what they are leaving behind or what games they are playing with your vital organs.
Look into foods that help the liver, greens and other plants, and consider a NO cholesterol diet. Just cause you don't get fat from eating meats, eggs or diary doesn't mean they aren't hurting you or clogging something up. Same with the pancreas and simple carbs. Also, I am concerned that the weight training shakes or supplements you are taking maybe not the best thing to keep doing. Our bodies aren't make for supplements, shakes and pills, and who knows what they are leaving behind or what games they are playing with your vital organs.