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Old 11-21-2012, 01:07 PM   #76
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Blood results...So lost!!!

Well, I managed to stump my GI doctor.

Everything came back fairly normal except for my platelet count, which was low.

The PT did come back as 11.7, which the normal range says 9.0-11.5

Platelet count was 107, normal is 140-400 thousand/uL

My white blood cell count is 3.9, normal is 3.8-10.8.

I tested negative for the ANA, hemochromatosis, and Wilson's disease. Iron and ferritin were normal as well.


My GI doc is sending me to the Center of Liver Disease through University of Miami to see a hepatologist. He said he has no idea what is going on but it is something and I need to be seen.

I'm having a heck of a time trying to get in to see these people though. They don't accept share of cost until that share of cost is met elsewhere. How the heck am I supposed to do that? Nobody accepts it. They won't let me make an appointment until they tell me how much it will cost and I agree that I can pay it. When I ask how much it costs they just tell me they need to call me back. Ugh. I'm so stressed.

 
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Old 11-26-2012, 08:00 AM   #77
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What do these things mean?

What would "slight heterogeneity in density" of my liver mean on a CT scan?

I'm asking because I got some copies of my records and on my ultrasound it says "heterogeneous and coarsened liver echotexture." On my CT it says "unremarkable surface contour" but "slight heterogeneity in density" regarding my liver.

My understanding is that my liver density is not the same throughout? But what would that indicate? Neither doctor has mentioned it but I'm curious.

 
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Old 11-26-2012, 04:49 PM   #78
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Re: What do these things mean?

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Originally Posted by abouttwodays View Post
What would "slight heterogeneity in density" of my liver mean on a CT scan?

I'm asking because I got some copies of my records and on my ultrasound it says "heterogeneous and coarsened liver echotexture." On my CT it says "unremarkable surface contour" but "slight heterogeneity in density" regarding my liver.

My understanding is that my liver density is not the same throughout? But what would that indicate? Neither doctor has mentioned it but I'm curious.
Heterogenous means more then one kind. Its usually seen when there is fat cells mixed in with normal liver cells. Coarsened means not smooth, this COULD be indicative of cirrhosis, but I believe that ultrasounds vary so much from operator, to radiologist, to the actual machine. I had a normal ultrasound on a portable unit done at my doctors office, then a few months latter at NYU Medical Center in NY where they have have a $100,000.00 high frequency unit, it showed this: "mild heterogenous echo texture possibly indicating mild patches of fat".

I would think that your CT scan would over-rule your ultrasound. I believe the CT is more accurate and would be better at showing anything serious like regenerative nodules (cirrhosis). Also, the unremarkable contour is good! You certainly dont want a coarsened nodular contour. They say an MRI is even better.

I like to subscribe to my grandmothers advice who lived to 101 who always said "if you keep running to doctors looking for trouble you will find it"

 
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Old 11-26-2012, 05:32 PM   #79
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Re: What do these things mean?

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Heterogenous means more then one kind. Its usually seen when there is fat cells mixed in with normal liver cells. Coarsened means not smooth, this COULD be indicative of cirrhosis, but I believe that ultrasounds vary so much from operator, to radiologist, to the actual machine. I had a normal ultrasound on a portable unit done at my doctors office, then a few months latter at NYU Medical Center in NY where they have have a $100,000.00 high frequency unit, it showed this: "mild heterogenous echo texture possibly indicating mild patches of fat".

I would think that your CT scan would over-rule your ultrasound. I believe the CT is more accurate and would be better at showing anything serious like regenerative nodules (cirrhosis). Also, the unremarkable contour is good! You certainly dont want a coarsened nodular contour. They say an MRI is even better.

I like to subscribe to my grandmothers advice who lived to 101 who always said "if you keep running to doctors looking for trouble you will find it"

Thanks! I was given a copy of my records to bring to the next person I have to see. My GI doc referred me to a hepatologist, but I can't get in until January. I was reading my CT results and this was something that wasn't brought up to me and I didn't exactly understand it when I read it in terms of the "density". I figured if it was a big deal that my doctor would have told me so I wasn't necessarily worried, I just like to know what these things mean. We still have no idea what is going on. Honestly, I am done with doctors. I'm so sick of going but my GI doc said I need to figure out what is going on. He said I may need a biopsy. I can't imagine what in the world it could be and what a biopsy would find that blood work and imaging can't, but maybe that's why they're doctors and I'm not! I even asked my GI doc if this is something that I can kind of blow off and he said no, that regardless of how much it costs (which a consultation with a hepatologist without insurance very well may cost me $600) that it will be well worth it to figure out what this is. Makes me want to pull my hair out...I just want to feel better. It's frustrating, but hopefully one day I will have an answer of some sort.

 
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Old 11-27-2012, 12:23 AM   #80
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Re: What do these things mean?

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.

Last edited by ladybud; 11-27-2012 at 12:26 AM. Reason: added info

 
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Old 11-27-2012, 02:09 AM   #81
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Re: What do these things mean?

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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.

 
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Old 12-05-2012, 02:15 PM   #82
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Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound

Disregard what I had written here about the pain if anybody had read it. I thought my pain was going away but I had myself fooled.

Last edited by abouttwodays; 12-06-2012 at 06:32 PM.

 
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Old 12-18-2012, 01:58 PM   #83
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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

 
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Old 12-18-2012, 02:16 PM   #84
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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.

 
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Old 12-18-2012, 02:40 PM   #85
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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?

 
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Old 12-18-2012, 02:54 PM   #86
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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.

 
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Old 12-18-2012, 03:06 PM   #87
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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.

 
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Old 12-18-2012, 03:12 PM   #88
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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.

 
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Old 12-18-2012, 03:52 PM   #89
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Re: Elevated liver enzymes, pain under right rib cage, coarse texture on ultrasound

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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!

 
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Old 12-19-2012, 06:54 AM   #90
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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.

 
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