Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Dawn, You can't really gage your illness by how high others' numbers are. My numbers AlkP, and GGT go up or down a few hundred in a month's time. There is no correlation to how sick I feel. GGT almost doesn't count because so many other things can affect it. ALKP shows how much blockage you have a a given time. ALT and AST show death of liver cells. AST is particularly sensitive to time of day, physical activity, and many other things. Once the liver is cirrhosed someone's AST and ALT might drop as they closer to tx. Mine have always run higher than some of the others and there are a few that have them continually higher than mine. Real danger items like amonia, creatinine, ascities, PT, turning yellow (and staying that way mean a lot more. Unfortunately, they have discovered that even though some people run low LFTs the disease can still be progressing at a rapid pace. This is a difficult disease to live with. We feel like we are always waiting for the other shoe to drop. don't worry too much over a upward trend over several months time. I'll run 800 ALP for several months, then drop down to 350-600 range for awhile ALT AST will be up around 330 350 respectively and then down in the med to high 100s-200s. Cheryl ID 50, PSC '01, UC '00 Re: Lab Question > Mine have always fluctuated some but have never risen this much or > this steadily. I figure I am progressing. Since I have small duct > PSC I have been progressing slowly but this lasy year I have become > much more symptomatic. My June biopsy said stage 1-2 and my levels > were much lower. I was just trying to get a feel for wwhat some of > your LFt's were so that I had a clue how high mine really all, so > thank you all for the feedback. > > DAwn > > > > > > mine are higher than that........mine tend to go up and down but > lowest has been in the 4 hundreds for ALP....started out at 562 I > think....and last one was 429 or something like that.....mine bili > was up to 2.4 in January and in Feb was down to 1.....so they go up > and down.... > > CJ > > psc 2-08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Dawn, You can't really gage your illness by how high others' numbers are. My numbers AlkP, and GGT go up or down a few hundred in a month's time. There is no correlation to how sick I feel. GGT almost doesn't count because so many other things can affect it. ALKP shows how much blockage you have a a given time. ALT and AST show death of liver cells. AST is particularly sensitive to time of day, physical activity, and many other things. Once the liver is cirrhosed someone's AST and ALT might drop as they closer to tx. Mine have always run higher than some of the others and there are a few that have them continually higher than mine. Real danger items like amonia, creatinine, ascities, PT, turning yellow (and staying that way mean a lot more. Unfortunately, they have discovered that even though some people run low LFTs the disease can still be progressing at a rapid pace. This is a difficult disease to live with. We feel like we are always waiting for the other shoe to drop. don't worry too much over a upward trend over several months time. I'll run 800 ALP for several months, then drop down to 350-600 range for awhile ALT AST will be up around 330 350 respectively and then down in the med to high 100s-200s. Cheryl ID 50, PSC '01, UC '00 Re: Lab Question > Mine have always fluctuated some but have never risen this much or > this steadily. I figure I am progressing. Since I have small duct > PSC I have been progressing slowly but this lasy year I have become > much more symptomatic. My June biopsy said stage 1-2 and my levels > were much lower. I was just trying to get a feel for wwhat some of > your LFt's were so that I had a clue how high mine really all, so > thank you all for the feedback. > > DAwn > > > > > > mine are higher than that........mine tend to go up and down but > lowest has been in the 4 hundreds for ALP....started out at 562 I > think....and last one was 429 or something like that.....mine bili > was up to 2.4 in January and in Feb was down to 1.....so they go up > and down.... > > CJ > > psc 2-08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Cheryl, Thank you and that's what my point was. Every one has their normal. I have been doing this for a very long time, what is currnetly happening is abnormal for me. I was seeking nformation to get a feel for what some others ranges are. just to get an idea. I know I am progressing, not a big deal, I don't worry about that. I have a life and I don't worry about what will happen next. I've been sick since I was 13 and I am 40 noew so I am used to that part. Norms change and I have found that many of today's doctors (for lack of a bette way of saying it) don't think outside of the box so well, so I try to gather information from oher who actually have experience to formulate a big picture. I don't have the luxary of living in an area where the medical personell have a lot of experience with PSC so it's my responsibility to do the research and be on top of things. My INR is high creat is is on the low side but still normal. but it always has been. They say amonia may never be an issue for me because of other health issues and electrolight problems that I have, who knows I can't find any research on this topic. As of my last biopsy in June I am no where near chirrosis yet. I know when I see the Hepatologist in 2 weeks I will be sent for an MRCP, he wants to see me first, doesn't make sense to me, we will be discussing this, because I think I should have the films for the appointment. Depending on the results of it a CT, they don't like doing those on me because I am allergic to the contrast. I can't have ERCP due to too much scar tissue at the base of the billiary tree and the intestinal track from adhessions, scope won't pass through. Any way it's all pretty cut and dry but as an informed consumer I can take better can of myself and am better prepared to talk to my physicians. By having an idea what other people who also have this disease's norms are then I can ask questions of my physican that are directed at me and my current symptoms. I hope hat make sense. I stopped worrying a long time ago about the unknown, I only have today and worrying steals that from me because it makes me live in the future. 3 cancer scares taught me that. Dawn > > > > > > mine are higher than that........mine tend to go up and down but > > lowest has been in the 4 hundreds for ALP....started out at 562 I > > think....and last one was 429 or something like that.....mine bili > > was up to 2.4 in January and in Feb was down to 1.....so they go up > > and down.... > > > CJ > > > psc 2-08 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Cheryl, Thank you and that's what my point was. Every one has their normal. I have been doing this for a very long time, what is currnetly happening is abnormal for me. I was seeking nformation to get a feel for what some others ranges are. just to get an idea. I know I am progressing, not a big deal, I don't worry about that. I have a life and I don't worry about what will happen next. I've been sick since I was 13 and I am 40 noew so I am used to that part. Norms change and I have found that many of today's doctors (for lack of a bette way of saying it) don't think outside of the box so well, so I try to gather information from oher who actually have experience to formulate a big picture. I don't have the luxary of living in an area where the medical personell have a lot of experience with PSC so it's my responsibility to do the research and be on top of things. My INR is high creat is is on the low side but still normal. but it always has been. They say amonia may never be an issue for me because of other health issues and electrolight problems that I have, who knows I can't find any research on this topic. As of my last biopsy in June I am no where near chirrosis yet. I know when I see the Hepatologist in 2 weeks I will be sent for an MRCP, he wants to see me first, doesn't make sense to me, we will be discussing this, because I think I should have the films for the appointment. Depending on the results of it a CT, they don't like doing those on me because I am allergic to the contrast. I can't have ERCP due to too much scar tissue at the base of the billiary tree and the intestinal track from adhessions, scope won't pass through. Any way it's all pretty cut and dry but as an informed consumer I can take better can of myself and am better prepared to talk to my physicians. By having an idea what other people who also have this disease's norms are then I can ask questions of my physican that are directed at me and my current symptoms. I hope hat make sense. I stopped worrying a long time ago about the unknown, I only have today and worrying steals that from me because it makes me live in the future. 3 cancer scares taught me that. Dawn > > > > > > mine are higher than that........mine tend to go up and down but > > lowest has been in the 4 hundreds for ALP....started out at 562 I > > think....and last one was 429 or something like that.....mine bili > > was up to 2.4 in January and in Feb was down to 1.....so they go up > > and down.... > > > CJ > > > psc 2-08 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Dawn, I need to apologize. I came across sounding like a know it all. I just keep seeing the worst side of myself all the time lately. It would be nice if I could just blame it on being in pain and being sick all the time. But as I see it. All these health issues are stripping me down to what I really am, a person who is impatient and cross. I continually find myself backing up and apologizing. Which is not bad that I can at least acknowledge it, but I'm sure I am a very difficult person to live with. Anyway, I am actually quite interested in what other people's numbers are relative to mine. I also am far away from any good doctors. I am going down to SLC to begin (what for me) will be the long road to being listed. I'm too sick for the GIs an hour away, but not ready to be listed. I do have cirrhosis, but don't think it is too awful yet because I respond well to diuretics. I've never had the luxury of an easy diagnosis or doctors close at hand who know anything. I was told I'd be better off driving an hour away in a medical emergency than go to the local ER because they aren't equipped to handle my problems. I'm sorry that you have been sick so much of your life. You must be exhauted from being your own advocate before you even came of age. Take care, all my good wishes for you and yours, Cheryl Re: Lab Question > Cheryl, > > Thank you and that's what my point was. Every one has their normal. > I have been doing this for a very long time, what is currnetly > happening is abnormal for me. I was seeking nformation to get a feel > for what some others ranges are. just to get an idea. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Dawn, I need to apologize. I came across sounding like a know it all. I just keep seeing the worst side of myself all the time lately. It would be nice if I could just blame it on being in pain and being sick all the time. But as I see it. All these health issues are stripping me down to what I really am, a person who is impatient and cross. I continually find myself backing up and apologizing. Which is not bad that I can at least acknowledge it, but I'm sure I am a very difficult person to live with. Anyway, I am actually quite interested in what other people's numbers are relative to mine. I also am far away from any good doctors. I am going down to SLC to begin (what for me) will be the long road to being listed. I'm too sick for the GIs an hour away, but not ready to be listed. I do have cirrhosis, but don't think it is too awful yet because I respond well to diuretics. I've never had the luxury of an easy diagnosis or doctors close at hand who know anything. I was told I'd be better off driving an hour away in a medical emergency than go to the local ER because they aren't equipped to handle my problems. I'm sorry that you have been sick so much of your life. You must be exhauted from being your own advocate before you even came of age. Take care, all my good wishes for you and yours, Cheryl Re: Lab Question > Cheryl, > > Thank you and that's what my point was. Every one has their normal. > I have been doing this for a very long time, what is currnetly > happening is abnormal for me. I was seeking nformation to get a feel > for what some others ranges are. just to get an idea. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Dawn, I need to apologize. I came across sounding like a know it all. I just keep seeing the worst side of myself all the time lately. It would be nice if I could just blame it on being in pain and being sick all the time. But as I see it. All these health issues are stripping me down to what I really am, a person who is impatient and cross. I continually find myself backing up and apologizing. Which is not bad that I can at least acknowledge it, but I'm sure I am a very difficult person to live with. Anyway, I am actually quite interested in what other people's numbers are relative to mine. I also am far away from any good doctors. I am going down to SLC to begin (what for me) will be the long road to being listed. I'm too sick for the GIs an hour away, but not ready to be listed. I do have cirrhosis, but don't think it is too awful yet because I respond well to diuretics. I've never had the luxury of an easy diagnosis or doctors close at hand who know anything. I was told I'd be better off driving an hour away in a medical emergency than go to the local ER because they aren't equipped to handle my problems. I'm sorry that you have been sick so much of your life. You must be exhauted from being your own advocate before you even came of age. Take care, all my good wishes for you and yours, Cheryl Re: Lab Question > Cheryl, > > Thank you and that's what my point was. Every one has their normal. > I have been doing this for a very long time, what is currnetly > happening is abnormal for me. I was seeking nformation to get a feel > for what some others ranges are. just to get an idea. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Cheryl, Thanks, but no need to apologize, it's easy to come across wrong when we don't feel well. I often have trouble getting my thoughts across to other people. Reading your post helped me to see that I wasn't getting across what I wanted to say, So I guess we helped each other. I hope you find a good Dr. soon. My closest " good " doctor who really knows much is almost 4 hours away in Pit. My Signficant other and I were discussing a possible move to Florida today. My License easily transfers to Florida, and the pay scale for what I do is better in Florida, so we may consider moving closer to Mayo. We both have a lot of family down there. I just shouldn't be this darn hard to get your medical needs taken care of!!! Dawn > > Dawn, > I need to apologize. I came across sounding like a know it all. I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Thanks Dawn. I know I shouldn't care so much, but I do want people to like me. those darn childhood insecurities! I also get kind of confused because I belong to two different support groups and I might forget who is who. Cheryl Re: Lab Question > > Cheryl, > > Thanks, but no need to apologize, it's easy to come across wrong when > we don't feel well. I often have trouble getting my thoughts across > to other people. Reading your post helped me to see that I wasn't > getting across what I wanted to say, So I guess we helped each > other. I hope you find a good Dr. soon. My closest " good " doctor > who really knows much is almost 4 hours away in Pit. My Signficant > other and I were discussing a possible move to Florida today. My > License easily transfers to Florida, and the pay scale for what I do > is better in Florida, so we may consider moving closer to Mayo. We > both have a lot of family down there. I just shouldn't be this darn > hard to get your medical needs taken care of!!! > > Dawn > > > > > > Dawn, > > I need to apologize. I came across sounding like a know it all. I > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.