Just curious, did your Dr ever run a mitochondrial antibody test on your blood? That is often present in autoimmune hepatitis, and I haven't seen that lab test mentioned as being done. If they are suspecting AI hepatitis, that test would be helpful to confirm it. Just to help you understand the pain better, the liver is surrounded by a capsule like coating, and when liver enlarges, the capsule gets stretched and it hurts. Also, there is probably inflammation in liver which can be painful too. The 2 tests being run to show inflammation are the CRP and sed rate.
I had the ANA test done...that came back negative. No mitochondrial antibody test. Sed rate and CRP came back normal. Just low platelets and low end of normal white blood cells. Everything else was normal. PT shows a tad high, but that's according to the lab's range. I read online the range was higher but I don't know. It was 11.7 and the lab says normal is up to 11.5.
Ugh the pain! I do wish it would go away! It radiates from a dull ache to sharp pains through my entire right ribcage area. I also have a spot where it is really tender to touch at the lower edge of my ribcage on my side. I get pain from my spleen area now, too, and I feel awful. I get crazy little muscle spasm feelings through my ribcage also, it's weird and annoying hah.
But so far my GP and GI have been absolutely stumped, yet they're confident that something isn't quite right here and needs to be looked into further. I just can't even imagine.
Last edited by abouttwodays; 11-27-2012 at 02:15 AM.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
you have a liver issue. get a specialist. focus on that. the itchiness, the pain, the dull ache, all R-side. does it ever feeling like a gnawing sensation? go liver.
Last edited by vian; 12-18-2012 at 02:00 PM.
Reason: add info
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
The itchiness comes and goes, it hasn't been bothering me much lately. I get a dull ache under my right ribcage, all around that area. Sometimes sharper pains and sometimes a twisting type pain. I also am feeling a lot of pain from my enlarged spleen. Recently I have had a spot on my belly a few inches down from where my ribcage ends on the left side (the lowest area I feel pain from my spleen) that seems to feel slightly tingly or almost numb. That area actually felt kind of like a numbing sensation inside all day yesterday. My platelet count is 107,000 and my liver enzymes have stayed elevated. There are a few things that are not out of range but on the low end of normal (I think my A/G ratio and something else). Also white blood cells are on the low end of normal. They have ruled out fatty liver, autoimmune, viral hep, metabolic disorders, iron issues, Wilson's disease etc. basically everything.
Anybody ever heard of the APRI score though? I've read it's reliable but I only have two tests that show both my AST and platelet count so I don't know how much I could read into that. And I know they dont go by that test alone to say anything about cirrhosis or fibrosis but I'm just curious. My GI doc said cirrhosis is not ruled out which scares me but it would be in early stages if I had it. And I've read there is cryptogenic cirrhosis, which is cirrhosis that has developed but they can't figure out why. Weird.
I have my first hepatology visit on Jan 3rd. I can't wait. I just want to know that I'm ok.
Last edited by abouttwodays; 12-18-2012 at 02:36 PM.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
I will say once again you need an anti-mitochondrial antibody test. I don't think you truly have autoimmune hepatitis ruled out. The anti-mitochondrial test is also for primary biliary cirrhosis and it would be nice to have that result before you see the liver specialist. With spleen enlargement, low platellets, an autoimmune disease is high on the list. They can also check your blood for anti-platellet antibodies, present in ITP (idiopathic thrombocytopenic purpura), also autoimmune. Pancreatic enzymes have been normal?
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
I completely forgot about that, I haven't seen my GI specialist since early November and he told me I need to see a hepatologist. I also didnt have insurance for labs at the time so he kind of kept it simple but he did lead me to believe autoimmune was ruled out. I do remember reading ANA isnt always positive though. Ugh. And yeah the only thing he tested was ANA. I don't know that any pancreatic enzymes have been tested. I have all of my labs now from 2010 onward. In Jan 2011 my platelets were at 186,000 so it seems like they are progressively going down but that's the only date I have to compare to. My most current labs show my PT is slightly high (11.5), eosinophils are low (4), enzymes high, platelets low and WBC and A/G are on the low low end of normal. That's really all I've got.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Amylase and lipase are the blood tests for pancreas. If they haven't been checked, they should be, and before you see liver specialist if at all possible.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Have you seen a hematologist about your platelets and spleen? That would seem wise. Are you anemic? Are your liver enzymes trending upward, downward or fluctuating within a stable range over time? How high are they and is bilirubin elevated-direct or indirect? 18 pages of posts is too long to go thru at this point, so some of this may have been posted before.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by ladybud
Have you seen a hematologist about your platelets and spleen? That would seem wise. Are you anemic? Are your liver enzymes trending upward, downward or fluctuating within a stable range over time? How high are they and is bilirubin elevated-direct or indirect? 18 pages of posts is too long to go thru at this point, so some of this may have been posted before.
The pancreatic enzymes have not ever been tested looking at my bloodwork. The platelets had just been brought to my attention by my GI doc in November (my regular doctor didn't bring it up in October, they were 111,000 then) and the enlarged spleen was just found in October. So no, I haven't seen a hematologist, everybody else has sort of passed it off but it was recent that I found out my spleen was enlarged after getting my CT scan. I just picked up my records from my doc yesterday. The liver enzymes have been fairly stable in the mid-100's, though the ALT had gone into the 200's at one point and they had dropped back down into the 50's earlier this year. Last they were tested my AST was 71 and my ALT was 100. Total bilirubin has always been ok in the normal range. Only once the bilirubin direct was out of range, it was high at .3 which it says the highest it should have been according to my lab was .2. That was in Jan of 2010. Not anemic though.
Yeah this thread keeps kind of getting re-activated when someone new responds and it's kind of hard to keep up with everything. Maybe one day I will actually post with an answer to what is going on!
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
I assume you have been tested for chronic hepatitis C, not just A & B. Maybe your GP would order these tests before your hepatologist visit so there is a more complete picture to go on. I would either make a list from my suggestions or print my posts so he understands the rationale for each. Good luck. I hope you get answers soon. On the plus side, your enzymes are not terribly high and fluctuating in a range is better than trending upward. Indicates something more stable than progressive, and possibly treatable.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by ladybud
I assume you have been tested for chronic hepatitis C, not just A & B. Maybe your GP would order these tests before your hepatologist visit so there is a more complete picture to go on. I would either make a list from my suggestions or print my posts so he understands the rationale for each. Good luck. I hope you get answers soon. On the plus side, your enzymes are not terribly high and fluctuating in a range is better than trending upward. Indicates something more stable than progressive, and possibly treatable.
I've been tested for A, B, and C three times over the years and my doctor out here in Florida also tested for hep D and E. all have been negative. Thank you so much for your help!!
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Did you ever find out what it was? I am curious because the pain you describe is EXACTLY what I have had for awhile.
The right rib cage, which varies from dull to really uncomfortable; sometimes like there is a pinch or things are twisting up in there; and sometimes if I do something semi-strenuous, I have it in the back in kind of the same spot. Occasionally a feeling of pain on the left side.
Also have had a few times where I couldn't eat AT ALL, and I usually have a pretty healthy appetite, but if I started to eat a meal, I would get so uncomfortably full so fast, it was strange, and I wouldn't really be hungry again for the rest of the day. Had to eat really small meals for awhile.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by WilkesG
Did you ever find out what it was? I am curious because the pain you describe is EXACTLY what I have had for awhile.
The right rib cage, which varies from dull to really uncomfortable; sometimes like there is a pinch or things are twisting up in there; and sometimes if I do something semi-strenuous, I have it in the back in kind of the same spot. Occasionally a feeling of pain on the left side.
Also have had a few times where I couldn't eat AT ALL, and I usually have a pretty healthy appetite, but if I started to eat a meal, I would get so uncomfortably full so fast, it was strange, and I wouldn't really be hungry again for the rest of the day. Had to eat really small meals for awhile.
I have not found out yet. Have you had any tests done? Or is the pain fairly new?
I just saw my hepatologist the other day. My appetite has been getting a little bit better over the past month (still really low though) but I have been able to eat more without feeling so uncomfortable. I think I owe a lot of that issue to a major amount of stress. As soon as things started settling down (I had a big break between doctor's visits and other outside stressors diminished) I felt like eating a little bit more and didn't feel so awful while eating. I just didn't want to eat before so eating felt gross. I still feel like I get fuller faster than I usually do, but maybe I'm just more in tune to my fullness cues? I don't know. Having had an eating disorder I'm really messed up in terms of my hunger and fullness and I was told that may have come into play as well. What I was told though is that if it gets worse again or really bothers me that I should schedule an endoscopy with my GI specialist to see if there is anything else going on.
I just got some blood work run though and am scheduled for a liver biopsy for next Wednesday (the 16th). I wasn't able to get in to try to order any more blood work before my hepatology visit, so he ordered for more to see if I have autoimmune hepatitis or primary biliary cirrhosis because the ANA test I had done did not rule that out. He also ordered for celiac serology. I will get the results of my blood work on the day of my biopsy and I'll let you guys know how that goes!
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
I first started feeling it on and off about a year ago, but I didn't have health insurance, so I never went to the doctor. It has gone away and come back a few times since then.
Oddly enough, it felt quite a bit worse today than usual. After reading these forums last night I decided to take some vitamins and a water pill this morning and I don't know if those aggravated it or not. I also am currently sick with the flu (for the second time this season which is aggravating) so I don't know how much that impacts it either. I can feel that pain more when coughing and stuff.
I'm wasn't sure what kind of doctor to go see, but I was planning on scheduling an appointment sometime in the near future. I just REALLY don't want to continue to get referred to others, which sounds like a pain.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by WilkesG
I first started feeling it on and off about a year ago, but I didn't have health insurance, so I never went to the doctor. It has gone away and come back a few times since then.
Oddly enough, it felt quite a bit worse today than usual. After reading these forums last night I decided to take some vitamins and a water pill this morning and I don't know if those aggravated it or not. I also am currently sick with the flu (for the second time this season which is aggravating) so I don't know how much that impacts it either. I can feel that pain more when coughing and stuff.
I'm wasn't sure what kind of doctor to go see, but I was planning on scheduling an appointment sometime in the near future. I just REALLY don't want to continue to get referred to others, which sounds like a pain.
I hear ya. Do you have health insurance now? I think either way just seeing your general physician first would probably be the way to go, but I would expect to possibly be referred to a specialist eventually, depending on how testing goes. If you do have insurance, you'd probably need a referral to go to a specialist anyway in order for it to be covered so you would still need to see your regular doc first.
I currently do not have health insurance. A visit with my regular doctor is $85, my GI specialist was $195, and my hepatology visit is between $395-605 (have yet to get the bill.) Then there is blood work and imaging on top of that. I do have share of cost with Medicaid so my biopsy and possibly my hepatology visit will be covered. Also, I have a supplement plan with BCBS that pays 100% of my blood work and that only costs me $25 a month. It's still been expensive though. And yes, it is a pain. Honestly, I really wanted to opt out of the hepatology appointment and still don't want to do the biopsy. I'm just sick of it and am not optimistic about them finding anything at this point. At the same time, I was told by my GI specialist that this really isn't something that I can just let go of...I need to find out what is wrong no matter how much it costs me. So, onward I go! But it sure is driving me nuts.
I would definitely see the doc though and see if they can run some blood work, do liver function tests and stuff. I don't know much about the gallbladder but I know they had checked to see if I had gallstones that could be causing all of this (which I don't.) I know what I've been tested for and what they've told me about what is currently going on, but that's about it! You know your body though and if you feel something is wrong or if something is bothering you for that long, I would definitely see a doc. Even just to give you a piece of mind!
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by Hypochondriacyy
Are the whites of your eyes yellow? You would turn yellow before you would start itching. People would point it out to you. Its probably not bilirubin
Thats not true. My first symptom was intense itching all over particularly in hands and feet and I went jaundiced about a month later. Backup of bile in ducts and high bilirubin.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Dear abouttwodays,
I am new to this site - I actually came here looking for something completely unrelated, but your post caught my attention.
I didn't read all the pages of replies and conversations, but through all that I did read, I've seen a lot of discussion about CTs, gallbladder trouble, lab values, etc.
The first thing that came to my mind when I read your INITIAL post, and what I have NOT seen mentioned ONCE in this thread, is an autoimmune disease of the liver, primary biliary cirrhosis (PBC). Your symptoms are very consistent with that diagnosis. I noticed someone asked about your bilirubin, and someone else (quite mistakenly) said that you would have jaundice before itching. That is absolutely not true.
I have had PBC for 20 years. My liver enzymes are usually mostly normal (or borderline), except for my alkaline phosphatase, which is ALWAYS elevated. I have only recently begun having itching to a greater degree than in the past. Repeat blood work shows continued elevation of my alk phos but new elevation in my ALT and AST. While a GGTP is very elevated, my bilirubin remains normal.
All of this to say that you may have PBC (or similar disease) and still have some very normal lab values. Only a liver biopsy will be completely conclusive. It would be a good idea to have AMA tested as well (a positive result is almost always the case in PBC).
Please do update us about your condition and the latest in your care.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Quote:
Originally Posted by GlendaM
Dear abouttwodays,
I am new to this site - I actually came here looking for something completely unrelated, but your post caught my attention.
I didn't read all the pages of replies and conversations, but through all that I did read, I've seen a lot of discussion about CTs, gallbladder trouble, lab values, etc.
The first thing that came to my mind when I read your INITIAL post, and what I have NOT seen mentioned ONCE in this thread, is an autoimmune disease of the liver, primary biliary cirrhosis (PBC). Your symptoms are very consistent with that diagnosis. I noticed someone asked about your bilirubin, and someone else (quite mistakenly) said that you would have jaundice before itching. That is absolutely not true.
I have had PBC for 20 years. My liver enzymes are usually mostly normal (or borderline), except for my alkaline phosphatase, which is ALWAYS elevated. I have only recently begun having itching to a greater degree than in the past. Repeat blood work shows continued elevation of my alk phos but new elevation in my ALT and AST. While a GGTP is very elevated, my bilirubin remains normal.
All of this to say that you may have PBC (or similar disease) and still have some very normal lab values. Only a liver biopsy will be completely conclusive. It would be a good idea to have AMA tested as well (a positive result is almost always the case in PBC).
Please do update us about your condition and the latest in your care.
Sincerely,
Glenda
Hey, thanks for your response. I did post my biopsy results on a new thread (titled "finally got a diagnosis"). I am currently under treatment for autoimmune hepatitis. My biopsy showed severe chronic hepatitis (grade 4) with bridging fibrosis (stage 3). Interesting you talk about the PBC though because my biopsy also showed signs of bile duct damage and though it said the biopsy as a whole supported the diagnosis of AIH, it also said there is a possibility of overlap syndrome with PBC. Now, every autoimmune marker I was tested for came back negative. I don't have my records in front of me but I know I was tested for many and they included those for PBC as that along with AIH were the primary concern for my hepatologist. But he told me since the marker was negative and that its pretty accurate, the likelihood of me having PBC was low and he's not too worried. I am not so good with asking questions on the spot so I neglected to ask about the bile duct damage and if that was something caused by the AIH or what. I do have a follow up on March 14 to see how I'm responding to treatment and I will ask then. So far I have had one lab test for my LFT's two weeks after starting the meds and not much has changed. AST has lowered only slightly (maybe an improvement but could be a fluctuation, too early to tell), ALT stayed the same, and alkaline phosphatase went up and is now mildly elevated. I am getting blood drawn again next Friday, will probably get my results the following Monday and we will see if things are improving then. I am on 3mg/day of Budesonide.
Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound
Hello there. I'm so glad you responded. So, the budesonide is a steroid for the inflammation? I, too, would be very curious about the bile duct damage. I would also ask about the possibility of benefit from taking ursodiol, just in case there is a component of PBC. One last thing, so your AMA is negative as well? It is rare, but it CAN be negative in PBC. For those who have PBC but a negative AMA, close monitoring with ultrasound and biopsy is important. As you probably know, those with PBC and other autoimmune diseases are at increased risk for hepatic carcinoma.
Please do keep in touch, and I'm here if you ever have any questions about PBC.
