Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole.... I really hate to say this but all of your symptoms are indicative of advanced liver disease. A virus would tend to make your WBCs rise not drop... The imuran would lower your WBCs. Spider veins are relatives to red palms in that they may be caused by hormone imbalances. They and red dots (petechiae) are common signs of liver disease. (the petechiae are small hemorrhaged vessels near the skin and do have other causs -such as autoimmune disorders) I don't have to be a hep. to tell you that the large liver is also a sign of liver in distress and the swollen belly could be ascites, which is caused by portal hypertension which could also lead to varices...have you ever been checked for them by endoscopy? Low grade fever can also be a symptom of liver disease. Your LFTs mean nothing .. in fact if you had advanced cirrhosis you probably would have normal values. I'm not a hepatologist either but I have run the gammet (sp?) of liver disease from fatty liver to end stage cirrhosis... so my experience should mean something. You'd better check the framed documents on his wall. At least he put off ordering more imuran which would probably lower your wbcs some more. When was your last biopsy? (theres that word....shudder) Maybe it's time to see how much damage has been done and a test for ascites and and an endoscopy would seem to be in order, too. ..... I'll send you my bill.... love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Jerry- Wouldn't I have other 'things' in my LFT's other than AST and ALT out of wack with advanced disease? I thought the albumin and total bilirubin would be abnormal in that case. Haven't had a bx since first dx in 10/99. This new guy isn't too concerned either. We were supposed to order the bx at my last visit weds., but said he wanted to wait til I was on a theraputic dosage of immuran, since I was at my best all around on the 150mgs. Didn't want to do it then question the amount and have to poke me again in three months. The liver is large, but not hardened so he isn't too concerned about it. Never been scoped for the verices. Do worry about them at times. Don't know if related, but I get nose bleeds and throat bleeding rather frequently since last time on steroids. Went to visit relatives out of town this weekend and had a killer nose bleed. Thought I was gonna have to get it fixed in the ER - went on for over an hour bleeding heavy. Needless to say was quite nauseas after wards. Poor niece thought it was her cooking! Jerry, I don't know what to think any more. I go to these guys telling them what is going on, and they act like it is no big deal. This was only second time seeing this hep., and was really hoping I had found a winner. I keep telling them that I have felt like shit since the day they diagnosed me. That is why I quit my meds on my own the first time. (Sorry about the language but they really get me ticked any more - and it is thee language I used with them) I had symptoms of this disease for years, was even sent to a shrink twice cause they thought it was just depression. (When they find out how my dad died, they just assume I am a chip off the old block.) But I will be very honest, I felt better before diagnosis. And if I didn't know I will go into another bad flare, I would drop the drugs again. I am frustrated beyond being calm any more. I went into that visit last week, with all of my symptoms. Nose bleeds, red spots, spider veins, fire red palms, low grade fever, fatigue worsening, still having right quad pain, loss of appetite - but with my numbers normal, he says its not the liver. I don't know what to do, I can't twist the guys arm and make him look closer. Then because I am 'humerous' when I am in there they think I must not be feeling too bad. Well hell, if I don't have my humor I'd go plain crazy. I told him I want to get a bx done soon because I am scared of what is going on in there, after going so long with out a look-see. He says not to worry, everything looks good. Maybe I should keep looking for another hep, I don't know. I wanted a 'second opinion' from him, which I thought would include a bx. Who knows, I just don't know what to think any more. If there is some big damage in there when they do finally bx, I am going to be one ugly patient. I thought though I would have indicators of advanced disease in my blood work. I also thought my WBC would be higher with a virus, but he said no. So now what do I do? Love, Carole K > Carole.... I really hate to say this but all of your symptoms are > indicative of advanced liver disease. A virus would tend to make your > WBCs rise not drop... The imuran would lower your WBCs. Spider veins are > relatives to red palms in that they may be caused by hormone imbalances. > They and red dots (petechiae) are common signs of liver disease. (the > petechiae are small hemorrhaged vessels near the skin and do have other > causs -such as autoimmune disorders) I don't have to be a hep. to tell > you that the large liver is also a sign of liver in distress and the > swollen belly could be ascites, which is caused by portal hypertension > which could also lead to varices...have you ever been checked for them > by endoscopy? Low grade fever can also be a symptom of liver disease. > Your LFTs mean nothing .. in fact if you had advanced cirrhosis you > probably would have normal values. I'm not a hepatologist either but I > have run the gammet (sp?) of liver disease from fatty liver to end stage > cirrhosis... so my experience should mean something. > You'd better check the framed documents on his wall. At least he put off > ordering more imuran which would probably lower your wbcs some more. > When was your last biopsy? (theres that word....shudder) > Maybe it's time to see how much damage has been done and a test for > ascites and and an endoscopy would seem to be in order, too. ..... > I'll send you my bill.... > > love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Hey Jerry! If I had little weeds growing out of my head maybe they would pay attention! Love, Carole K > Ruth....I'll look but I don't know.....It is usually described as tiny > pinpoint red dots. I think Carole should seek another opinion...those > are all signs of liver disease if not cirrhosis.... > We must be careful not to confuse petechiae with those ceramic animals > who have weeds growing out of thier backs... > > love jerry > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 In a message dated 1/16/03 4:34:56 AM Eastern Standard Time, toots_k@... writes: I wanted a 'second opinion' from him, which I thought would include a bx. Who knows, I just don't know what to think any more. If there is some big damage in there when they do finally bx, I am going to be one ugly patient. Wow Carole, I would call someone right now and get a second opinion. Please do it now. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Well you are right....the albumin might be down some but the nose bleed is not a good sign.... I used to get them too and I was definitely sick IT may be indicative of your inability to clot. Have you had a PT or a PTT What are some of your other panel values? Loss of appetite is not a good sign either. I'm going to send something on cirrhosis and lab tests.. Throat bleeds hmmm? Do the name esophogeal varices mean anything to ya? Check your stool (don't we all) If it is unusually black with a tarry like consistency thats blood, also if when you were nauseous did you throw up something that looked like coffee grounds? that's blood too....these are sure signs of varices. He can thump your belly or do an imagery test to check for ascites. If the liver starts to get hard it will shrink but that's due to cirrhosis.... I jst can't believe tat with all these symptoms you present he doesn't do anything but feel your liver ( that is all he feels isn't it) Listen nobody but nobody is a bigger joker than I in medical settings especially with my gastro but that didn't stop him from thouroughly checking me out. He is so thourough that he suspected my marrow cancer just from looking at my monthly blood tests and calling me on the phone and set up an appointment with a hemotologist-oncologist for me. Your doctor better start listening, you know your body better than he, I don't care if he is a doctor. I also thought that a viral infection would increase your wbcs. Maybe the guy just is playing that " what would you know ..I'm the doctor, you're just an ignorant woman " I don't know but I was always under the impression you white count would rise when the body was attacked by invaders, that,s what they are there for. Don't know what to tell you. No. I'm going to tell you just what I told Bert....watch your Freaking language gosh darn it...I'm a grandfather for pete's sake.. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Then you would be a Chia-pet not petechiae. And they would sell you on TV during christmas... Hey Jerry! If I had little weeds growing out of my head maybe they would pay attention! Love, Carole K > Ruth....I'll look but I don't know.....It is usually described as tiny > pinpoint red dots. I think Carole should seek another opinion...those > are all signs of liver disease if not cirrhosis.... > We must be careful not to confuse petechiae with those ceramic animals > who have weeds growing out of thier backs... > > love jerry > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole, I never had any indicators other than the AST and ALT (SGOT & SGPT) nor had I been scoped when the varacies blew and the liver went. I did have one episode prior to that... it was ugly. I was also out of town, I was at my parents home . I went to the grocery store with my nephew After parking we started walking to the store. All of a sudden I felt horrible. I sat down on a curb and threw up. I felt bad for my 7 year old nephew. People were walking in and out of the store. I had no idea at the time I was vomiting blood. It was red but I had cranberry juice and raspberry yogurt for breakfast. I just didn't know at the time. I never mentioned it to the Dr. Only in retrospect do I realize what had happened. (This was pre-liver support group). Be careful & follow=up. Patty [ ] Re: any one know? Jerry- Wouldn't I have other 'things' in my LFT's other than AST and ALT out of wack with advanced disease? I thought the albumin and total bilirubin would be abnormal in that case. Haven't had a bx since first dx in 10/99. This new guy isn't too concerned either. We were supposed to order the bx at my last visit weds., but said he wanted to wait til I was on a theraputic dosage of immuran, since I was at my best all around on the 150mgs. Didn't want to do it then question the amount and have to poke me again in three months. The liver is large, but not hardened so he isn't too concerned about it. Never been scoped for the verices. Do worry about them at times. Don't know if related, but I get nose bleeds and throat bleeding rather frequently since last time on steroids. Went to visit relatives out of town this weekend and had a killer nose bleed. Thought I was gonna have to get it fixed in the ER - went on for over an hour bleeding heavy. Needless to say was quite nauseas after wards. Poor niece thought it was her cooking! Jerry, I don't know what to think any more. I go to these guys telling them what is going on, and they act like it is no big deal. This was only second time seeing this hep., and was really hoping I had found a winner. I keep telling them that I have felt like shit since the day they diagnosed me. That is why I quit my meds on my own the first time. (Sorry about the language but they really get me ticked any more - and it is thee language I used with them) I had symptoms of this disease for years, was even sent to a shrink twice cause they thought it was just depression. (When they find out how my dad died, they just assume I am a chip off the old block.) But I will be very honest, I felt better before diagnosis. And if I didn't know I will go into another bad flare, I would drop the drugs again. I am frustrated beyond being calm any more. I went into that visit last week, with all of my symptoms. Nose bleeds, red spots, spider veins, fire red palms, low grade fever, fatigue worsening, still having right quad pain, loss of appetite - but with my numbers normal, he says its not the liver. I don't know what to do, I can't twist the guys arm and make him look closer. Then because I am 'humerous' when I am in there they think I must not be feeling too bad. Well hell, if I don't have my humor I'd go plain crazy. I told him I want to get a bx done soon because I am scared of what is going on in there, after going so long with out a look-see. He says not to worry, everything looks good. Maybe I should keep looking for another hep, I don't know. I wanted a 'second opinion' from him, which I thought would include a bx. Who knows, I just don't know what to think any more. If there is some big damage in there when they do finally bx, I am going to be one ugly patient. I thought though I would have indicators of advanced disease in my blood work. I also thought my WBC would be higher with a virus, but he said no. So now what do I do? Love, Carole K > Carole.... I really hate to say this but all of your symptoms are > indicative of advanced liver disease. A virus would tend to make your > WBCs rise not drop... The imuran would lower your WBCs. Spider veins are > relatives to red palms in that they may be caused by hormone imbalances. > They and red dots (petechiae) are common signs of liver disease. (the > petechiae are small hemorrhaged vessels near the skin and do have other > causs -such as autoimmune disorders) I don't have to be a hep. to tell > you that the large liver is also a sign of liver in distress and the > swollen belly could be ascites, which is caused by portal hypertension > which could also lead to varices...have you ever been checked for them > by endoscopy? Low grade fever can also be a symptom of liver disease. > Your LFTs mean nothing .. in fact if you had advanced cirrhosis you > probably would have normal values. I'm not a hepatologist either but I > have run the gammet (sp?) of liver disease from fatty liver to end stage > cirrhosis... so my experience should mean something. > You'd better check the framed documents on his wall. At least he put off > ordering more imuran which would probably lower your wbcs some more. > When was your last biopsy? (theres that word....shudder) > Maybe it's time to see how much damage has been done and a test for > ascites and and an endoscopy would seem to be in order, too. ..... > I'll send you my bill.... > > love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole, I'm not a Doc but the spider veins are a classic symptom of the blood backing up because it is not flowing normally through the liver, so is the acites in your belly. The #'s may be down because of the Imuran, I am of the impression that the Imuran can lower the WBC count also [verify this point, I never took imuran]. You may well have a virus but your liver seems to be participating. Do you see a hepatologist? Patty [ ] any one know? Hello all! I went to my hep last weds. Was supposed to increse immuran another 25 mgs, but now have been put off due to low WBC's. The doc says he thinks I have a virus, and that may be the cause. He also thinks the increased spider veins and pin point red spots are caused by the virus. I don't as they started quite a while ago, but hey who am I to question his knowledge. My question is if it is just the virus causing all of this, how long before I should see the spider veins and dots disappearing. For that matter how long do I put up with this 'virus' before I go back to the doc? This stupid fever has been going on for almost two weeks now. Just a low grade one 99.9 to 101.9, comes and goes through out the day. And while I have all y'alls attention I have another question. My liver has been giant since this all started. My numbers have now been in or darn near in normal range for over a year now. When does this puppy shrink down? It and the swollen belly are the only things keeping me in a size 14 rather than a size 10. Any one have any idea? Thanks! Love, Carole K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Dear Carole, I believe that low WBC count is also a side effecto of immuran for some people. Also the spider veins and pin point red spots are caused by AIH according to my drs. and what I've read. You're fever is a concern - have they checked for acities and infection hiding there, etc. With the meds we are on, it's not uncommon to run a fever with no other symptoms because those are masked by the immunosupprent meds. I am surprised with your heps answers. You may have to run of some current info for him. And don't let that fever go up without getting it checked! Rest and take care, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole, If you figure it out let me know. I too could fit into a size 10 before all this liver stuff. Now I think the only thing that will fit in a size 10 is my stomach. I hate to be so vain but having always been thin it is a "bear" to feel so uncomfortable. My stomach is as large as it was the day both of my kids were born. Now I'll stop complaining and get on with things. Happy birthday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole, I agree with Jerry and Ruth. I have all of the same problems you mentioned. Red spots, nose bleeds spider veins, red palms and feet. I have also had 2 variceal bleeds. My Hepatologist says my liver disease is moderate to severe. Check it out. See another MD. Don't ignore these symptoms. My LFT's have stayed under control on low dose Prednisone. Jerry is correct, the cirrhosis is a totally different problem which can cause problems itself. Yes, we know the cirrhosis is a result of the AIH, but because the AIH may be well controlled does not make the cirrhosis go away. It will always be there. Worried about you here in VA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Carole, Patty is correct. This is one thing my Hepatologist told me to be aware of when running a fever. They said that a normal WBC for a health person would be elevated, however a person who was on the immunosuppressants that we take my have an elevated WBC which would still fall in the "normal values". This did not mean our WBC wasn't elevated. It would be for us, but still fall into normal lab values for most healthy people. Hope this info helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 , I think I'm just going to have to suck it up and throw them away. It really kills me but I'm beginning to act like my grandmother did. She lived in an old house and had each bedroom closet full of different size clothes. Towards the end she forgot which room had the small clothes it so we just went in and moved them out. I bet she had clothes from 50 years ago. As I am only 46 I guess my assortment doesn't run back that far but I'm beginning to think a lot like her so before my family gets rid of them, I guess I'll do the nasty deed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 > Carole, > I too could fit into a size 10 before all this liver stuff. Now I think the only thing that will fit in a size 10 is my stomach. > > Dearest Carole and , What is a size 10? I haven't seen that size since birth. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Hey Carole, If you're 5 foot 11 inches tall, I have a whole wardrobe of things that will fit you. I don't think I'll ever get back into them. At this point, I don't really care too much. Too tired to have much of a life other than working and sleeping. In my dreams I see those size 10's, along with a 29 year old who could set the world on fire. Now when I look in the mirror I see a very tired 45 year old who looks like the Goodyear Blimp. Hey, but the positive side of all of this is I can still look in the mirror and see her, right. Hang in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 , Maybe we need to go to the surgeon together then. My tummy is the only thing that isn't a size 10. I have no rear end to speak of what so ever! What this steroid stuff does to us is a real bummer. I myself was always a 'chunky kid'. After I had my second daughter I weighed 222 lbs. I set it in my head I was going to have a body that I could wear a bikini in. (Though I never would wear one - my skin looks like seersucker material with all the stretch marks!) I lost all of the wieght, down to 145 lbs and wearing a 6/7 for the first time ever in my life. Kept it off for a long time, til I started feeling yicky. I tried to lose the extra 20 I had put on, but no matter how much I worked out and dieted I continued to gain weight. Suddenly couldn't lift weights any more - fealt like I was ripping my muscles apart. Then got really really sick - only a few short 4 months later they figured out it was AIH. Then came steroids. I think part of the problem with what I think it did to me, is also age. I went on them at 35, and didn't get off them and get my shape back til, now actually. I think the steroid weight was filling in where I would have normally been sagging with age! No more moon face - now Nixon jowls. Just like my dad had. The bright spot is even though I have been off the steroids for over a year now, I still do consistently lose 2 to 3 pounds of weight a month. I weigh less now than when Dx. With out even really dieting. The bad part is, I know way have the money to go buy a new wardrobe! So I wear my Levis with the waist 8 inches too big, with a belt. They are 501's, but I don't have to unbutton them any more to go potty, they just slide right off. Oh! A perk! Have a nice day, and hope you are feeling well. Love, Carole K > Carole, > > If you figure it out let me know. I too could fit into a size 10 before all > this liver stuff. Now I think the only thing that will fit in a size 10 is > my stomach. I hate to be so vain but having always been thin it is a " bear " > to feel so uncomfortable. My stomach is as large as it was the day both of > my kids were born. > > Now I'll stop complaining and get on with things. Happy birthday. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 - My prob with the WBC was they were 'seriously low' in his words. He said a virus could cause that. Total opposite of what I was taught, but I didn't argue. I thought hey, he's young, maybe they have discovered this since I went to school forever ago. But now I see he is the only one so far who beleives this. My WBC by the way was only at 2.8. I didn't think that was anything to go into a panic over. I have had worse, they always bounce all over on this stuff. I think it has to do with when the blood test is taken too. The closer to your taking your meds, the lower it might be? Makes sense to me. All I knew was I wasn't going to panic as much as he was - I am not ready to start wearing a mask to the grocery store. (As a matter of fact didn't have to: I had them delivered! God I love the age we live in!) Love, Carole K > Carole, > > Patty is correct. This is one thing my Hepatologist told me to be aware of > when running a fever. They said that a normal WBC for a health person would > be elevated, however a person who was on the immunosuppressants that we take > my have an elevated WBC which would still fall in the " normal values " . This > did not mean our WBC wasn't elevated. It would be for us, but still fall > into normal lab values for most healthy people. > > Hope this info helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 , You sound like me! I used to swear I went from a little girls 6x, to womens size 12. Don't remember anything in between! Carole K > Dearest Carole and , > > What is a size 10? I haven't seen that size since birth. LOL > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 , Don't throw the old clothes out! I did that because I thought I would never see this size again. Now I can't afford to buy new ones, so I look like a slob in my big clothes all the time. Try to keep at least two pair of pants and a couple of shirts. I went and bought those " Space Bags " and put my big clothes in them. They are those things advertised on T.V. that you suck the air out of them with your vacume. They work great. No air, no moths, and no wrinkles when they come back out. Just don't try to shove them under you bed. We did with one filled with blankets. Caught on a spring and expanded. Hubby had to lift the bed so I could get it back out! We have used them in the garage rafters, and never had anything bother them, not even when I had a mouse. Love, Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 In a message dated 1/17/03 4:00:57 PM Eastern Standard Time, toots_k@... writes: So I wear my Levis with the waist 8 inches too big, with a belt. They are 501's, but I don't have to unbutton them any more to go potty, they just slide right off. Oh! A perk! Carole, Girl go treat yourself to some new clothes, you deserve it! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Carole... I went to my oncologist yesterday who is also a hemotologist . While I was there I asked about wbcs and viruses etc. He started dawing me pictures and stuff and got real complicated but the bottom line was.....prednisone can actually raise your wbcs as can imuran and a virus can possibly lower them. He did admit tho the reasons were not really understood and the explanation was very technical. in other words they just don't have a real clue as to why some things are the way they are..... so..... ???. I was his last patient and we usually spend quite a bit of time talking.. he answers a lot of stuff I ask him.....but this time I was in a hurry so I didn't really pin him down on the subject and I'm sure he could have explained it better had I pressed him....maybe next time... I've got at least 4 more months to live so I'll ask him ten. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Carole... I went to my oncologist yesterday who is also a hemotologist . While I was there I asked about wbcs and viruses etc. He started dawing me pictures and stuff and got real complicated but the bottom line was.....prednisone can actually raise your wbcs as can imuran and a virus can possibly lower them. He did admit tho the reasons were not really understood and the explanation was very technical. in other words they just don't have a real clue as to why some things are the way they are..... so..... ???. I was his last patient and we usually spend quite a bit of time talking.. he answers a lot of stuff I ask him.....but this time I was in a hurry so I didn't really pin him down on the subject and I'm sure he could have explained it better had I pressed him....maybe next time... I've got at least 4 more months to live so I'll ask him ten. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Carole.....your 501s sliding off doesn't sound like a bad thing, but if it bothers you..........duct tape! love you know who Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Carole.....your 501s sliding off doesn't sound like a bad thing, but if it bothers you..........duct tape! love you know who Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Carole: I think a biopsy is in order, definitely. As I have said many times before, I am the perfect example of looking great on paper. My labs say I am just the perfect picture of health. In the five years since I have been diagnosed I have gone from nothing to Fibrosis Grade 4, Stage 2-3. Now, this did not show up on my labs at all. I will pray that you can get some help soon. Love and prayers - gina Quote Link to comment Share on other sites More sharing options...
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