# Wondering if the Dr is missing that I may have PSC? **URL:** \ **Category:** New Member Introductions\ **Created:** [February 10, 2018, 7:38am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123 "2018-02-10T07:38:33Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 10, 2018, 7:38am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/1 "2018-02-10T07:38:33Z")
I am 39 yrs old male. I had my gall bladder removed in Feb 2012. I had symptoms for a year before being diagnosed. About a year and a half later I started getting sick like I did with gall bladder pancreatitis. I get sick like that a couple of times a year. Symptoms include extreme upper right abdominal pain, nausea, diarrhea, burps that smells just awful I don’t even know how to describe the smell, and fever(occasionally). I didn’t think this was related, but am starting to wonder if the pain in my joints in fact are. In about a year to year and a half, I went from 215 lbs to 170 lbs with no change in exercise or diet change. I have researched the symptoms of PSC. The only ones that don’t fit is jaundice, I have no idea about my spleen, and itching. My lower legs do itch from time to time, nothing major. I just got out of the hospital. My liver function tests were abnormal is all would say about that. They said my liver was swollen. I know y’all aren’t my Dr. So, I get that anything said is opinion. I have had an endoscopy and a colonoscopy and the one where you swallow a camera pill. I think it was just a standard endoscopy, not an ERCP. Every test has came up normal except this recent hospital visit. What are y’alls thoughts. My medical options are some what limited. I go to the VA hospital. I can’t afford elsewhere. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 10, 2018, 7:50am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/2 "2018-02-10T07:50:41Z")
I also should mention the list of foods I can’t eat anymore is growing. And seriously, why do potatoes have to be one of them? Another thing, my white blood cell count is almost always slightly elevated, so is one of the rh factors. I also have gerd and IBS. ---
**Author:** ![MzzP](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/mzzp/32/1962_2.png) [@MzzP](https://forum.livingwithpsc.org/u/MzzP)\ **Post date:** [February 10, 2018, 6:01pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/3 "2018-02-10T18:01:06Z")
My only advice is Push Hard for more tests and information. MRCP (MRI of bile ducts), Ultrasound (of all organs in abdominal cavity), extensive blood work for different blood markers that can indicate areas of issue (like for me all mine came back normal, but those of my liver beyond ALP, AST and ALT were very high). There is also a test they do for liver rigidity - none invasive and determines how flex your liver still is. Finally, if necessary, liver biopsy. Get with a Hepatologist - fast and get copies of ALL your test results and ask a Lot of questions. I’m sorry to read you are going through all this unknown. Time for some answers or hopefully new directions and ultimately greater peace of mind. You hang in there and keep pushing! ---
**Author:** ![fcmmark](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/fcmmark/32/2189_2.png) [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Post date:** [February 11, 2018, 3:00am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/4 "2018-02-11T03:00:16Z")
Tsohg, Thanks for your post. Do you have any recent labs you can share the results of. That would give us a better indication of whether you have liver issues. Look for LFT panels as well as INR test. Labs you would be looking at in addition to the INR are as follows. ![image](https://us1.discourse-cdn.com/flex019/uploads/ben_psc_community/original/2X/3/352dc253be3d28e63a915821d93195c4b0259d3b.png) Mark ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 11, 2018, 4:12am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/5 "2018-02-11T04:12:50Z")
Thanks for the replies. I don’t have a copy of the tests. I have an appointment coming up soon. I will get a copy. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 12, 2018, 4:12am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/6 "2018-02-12T04:12:13Z")
Can jaundice cause pain in your eyes? ---
**Author:** ![JeffDC1](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/jeffdc1/32/402_2.png) [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Post date:** [February 12, 2018, 7:23pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/7 "2018-02-12T19:23:02Z")
It turns your eyes into a harsh shade of yellow, but I never have heard any eye pain caused by jaundice. ---
**Author:** ![fcmmark](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/fcmmark/32/2189_2.png) [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Post date:** [February 12, 2018, 9:52pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/8 "2018-02-12T21:52:10Z")
I too have never heard of jaundice causing eye pain. You may have something else going on there so you may want to see your PCP or eye doctor. Mark ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 13, 2018, 4:04pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/9 "2018-02-13T16:04:02Z")
My AST was at 137, my ALT was at 221. I had an appointment today. Had more labs done and they ordered an MRCP. ---
**Author:** ![fcmmark](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/fcmmark/32/2189_2.png) [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Post date:** [February 13, 2018, 6:10pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/10 "2018-02-13T18:10:06Z")
Tsohg, Your AST and ALT are out of normal range on the high side, but not out of sight like I’ve seen some labs get. Normal for AST is 15 to 41 and for ALT 17 to 63 I’m glad to know they are going ahead with an MRCP. Hopefully that will give them a better idea of what’s going on plus your labs. Let us know how it goes. Mark ---
**Author:** ![Paul\_H](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/paul_h/32/61_2.png) [@Paul\_H](https://forum.livingwithpsc.org/u/Paul_H)\ **Post date:** [February 14, 2018, 3:11am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/11 "2018-02-14T03:11:35Z")
Hi Tsohg, If your VA is like my brother’s (Great Lakes, IL) ((I was his caregiver for a while)) they would consider sending you to a specialist if one was not on their staff. I’m thinking you could tell them about your PSC concerns and ask if you can get a consult with a Hepatologist who can review your records? They are not interchangeable with a Gastroenterologist. A Hepatologist is thoroughly trained in diseases of the liver as their speciality. I think that would be the way to find out if you have liver disease. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 14, 2018, 9:48pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/12 "2018-02-14T21:48:41Z")
Thanks for all the info. I will update after the MRCP results are back. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 21, 2018, 10:55pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/13 "2018-02-21T22:55:38Z")
So my MRCP has been delayed. My Dr and I agree that waiting till I get sick again will give us a more accurate picture of what’s going on. I just don’t want them to do it when I am feeling fine and get another normal result. Also, did any of your lipase lvls go down? When my ALT was the highest, my lipase dropped to 6. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 24, 2018, 5:22am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/14 "2018-02-24T05:22:07Z")
So I didn’t word that very well. I do want to have a normal MRCP. I don’t want to have PSC. What I meant was, I don’t want it to be normal just cause it has been a couple weeks since I got sick. My Dr and I agreed that we would probably get a more accurate picture if the scan was done when I am sick. ---
**Author:** ![fcmmark](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/fcmmark/32/2189_2.png) [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Post date:** [February 24, 2018, 4:12pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/15 "2018-02-24T16:12:21Z")
Tsohg, Are you seeing a hepatologist for your liver issues? Strictures don’t just come and go as you feel better and then worse the next week. They build up over time and will need intervention at some point. I hope you are seeing a liver specialist, a hepatologist and not just a GI doctor. I have concerns with his logic. Mark ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 25, 2018, 7:29am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/16 "2018-02-25T07:29:41Z")
I think he is a GI Dr. Don’t know for sure. He is what the VA has for me. ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 25, 2018, 7:09pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/17 "2018-02-25T19:09:46Z")
Can strictures be seen on a cat scan with contrast ---
**Author:** ![fcmmark](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/fcmmark/32/2189_2.png) [@fcmmark](https://forum.livingwithpsc.org/u/fcmmark)\ **Post date:** [February 25, 2018, 9:26pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/18 "2018-02-25T21:26:38Z")
Yes, CT can show structures but MRCP is a more layered and detailed test. Also keep in mind that CAT uses x-ray which exposes patient to high doses of radiation. There is no x-ray with MRI. You can only have so many CAT scans whereas MRI is unlimited. Mark ---
**Author:** ![Tsohg](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tsohg/32/1481_2.png) [@Tsohg](https://forum.livingwithpsc.org/u/Tsohg)\ **Post date:** [February 25, 2018, 11:52pm UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/19 "2018-02-25T23:52:03Z")
They did 2 CAT scans. Both showed normal. If I do have PSC, I think I am fairly early on with it. I sure hope not. It just fits more than anything I have found. Before the liver test came back off, I don’t know if the Drs even believed me that something was going on. Previous to this, the Dr I am seeing said something to the effect that this all just might be in my head. ---
**Author:** ![TamBam99](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/tambam99/32/1329_2.png) [@TamBam99](https://forum.livingwithpsc.org/u/TamBam99)\ **Post date:** [March 1, 2018, 4:19am UTC](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123/20 "2018-03-01T04:19:25Z")
If the radiologist isn’t trained and know what they are looking for, they can miss small strictures. I have had this happen to me. I personally think if you have fevers, chills, and pain the best option is a course of antibiotics like cipro. Hope you find answers! Best of luck!\*\*[quote=“Tsohg, post:19, topic:2123, full:true”] They did 2 CAT scans. Both showed normal. If I do have PSC, I think I am fairly early on with it. I sure hope not. It just fits more than anything I have found. Before the liver test came back off, I don’t know if the Drs even believed me that something was going on. Previous to this, the Dr I am seeing said something to the effect that this all just might be in my head. [/quote] \*\* [Next page](https://forum.livingwithpsc.org/t/wondering-if-the-dr-is-missing-that-i-may-have-psc/2123.md?page=2)