# Increasingly frustrated

**URL:** <https://forum.livingwithpsc.org/t/increasingly-frustrated/2754>\
**Category:** Support and Caregivers\
**Created:** [October 19, 2018, 9:57pm UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754 "2018-10-19T21:57:23Z")\
**Posts on this page:** 4\
**Page:** 1

<div class="post-metadata">

**Author:** ![AutoimmunetoStars](https://avatars.discourse-cdn.com/v4/letter/a/54ee81/32.png) [@AutoimmunetoStars](https://forum.livingwithpsc.org/u/AutoimmunetoStars)\
**Post date:** [October 19, 2018, 9:57pm UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754/1 "2018-10-19T21:57:23Z")

</div>

I’m frustrated. My enzymes keep fluctuating (ALT and AST, GGT) and there’s no answer as to why. I’m going to see a Hepatologist Dec 20 (hopefully earlier, but I can’t guarantee that)because my Gastro did every test possible. ANA, AMA, Wilson’s, Hepatitis A,B,C, MRCP, Biopsy, etc. There are some possibilities, but my elevations make no sense. PBC? ALP is not elevated, AMA negative. PSC? Biopsy ahowed maybe something, but ALP isn’t elevated. AIH? Negative for ANA, AMA, LKA, etc. But its consistently elevated without prompt. Unless the second MRCP I do shows something other than inflammation, my gastro has no clue.

Although somethings did get better, such as my hives (musectomy and rectum removal ended up stopping my hives completely, so it wasn’t liver related) I’m very tired. Its annoying.

---

<div class="post-metadata">

**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:** [October 20, 2018, 1:43am UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754/2 "2018-10-20T01:43:27Z")

</div>

Well for one thing, you are giving a GI doctor way too much access to your liver. You need to be seeing a hepatologist for all those tests. One test that is not on your list is ERCP. This would correctly identify PSC and possibly PBC. But make sure you get that ordered by the hepatologist. You need a specialist doing that procedure on you. Also, what is your bilirubin, your alkaline phosphotase, INR? Those are important markers for checking for liver disease.

Mark

---

<div class="post-metadata">

**Author:** ![AutoimmunetoStars](https://avatars.discourse-cdn.com/v4/letter/a/54ee81/32.png) [@AutoimmunetoStars](https://forum.livingwithpsc.org/u/AutoimmunetoStars)\
**Post date:** [October 20, 2018, 2:05am UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754/3 "2018-10-20T02:05:07Z")

</div>

Bili and Alkaline Phosphate are normal, which is why I listed ALT, AST, and GGT. Bili is rarely elevated and when it is, its not that badly elevated. I’m going to see if an appointment might be available earlier so I can ask for an ERCP, since I won’t get insurance next year, or at least I can’t afford these tests next year.

---

<div class="post-metadata">

**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:** [October 20, 2018, 3:10am UTC](https://forum.livingwithpsc.org/t/increasingly-frustrated/2754/4 "2018-10-20T03:10:49Z")

</div>

If your bilirubin is not elevated there may not be a need for an ERCP. Only your hepatologist can determine that. Just take one day at a time. Liver disease will not kill you in one week, it moves progressively but not that fast. If you were very sick your bilirubin would be high and other LFT’s. Just chill out until you can see your hep. Good luck.

Mark