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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Suspected PSC

#1

Hello everyone, I’m a 24 years old man from Brazil.

I was diagnosticated with UC (proctitis) in 2012, due to a flare up that cause me diarrhea and presence of mucus and blood on my stools. In this occasion I’m being treated with mesalazine for some months and, since then, I have been in remission. However, in the middle of last year, I have an alteration in my stool consistency /frequency and a vague RUQ pain, what leads me to have some tests like colonoscopy and LFT’s. Colonoscopy were normal, no signal of UC, but the stool consistency remains altered to this day, the RUQ pain too. In the first LFT, GGT and ALT are slightly elevated, which didn’t cause me any concern. But the LFT’s are progressively increasing since that (dates and values below) and due to that, my GI is suspecting of PSC. I had an ultrasound, a general MRI and a MRCP, all clear. Blood tests for autoimmune markers are clear too. Billirubins are in the normal range. The doctor said that we have to wait a few more months before perfoming liver biopsy, but these alterations are driving me crazy. When and why is advised to do liver biopsy? What are my “chances” of having PSC? Have any of you ever been in a similar situation?

Dates and LFT’s:
07/2018 – GGT: 126; ALT: 55; AST: 33
10/2018 – GGT: 161; ALT: 66; AST: 36; ALP: 93
12/2018 – GGT: 195; ALT: 69; AST: 36
01/2019 – GGT: 195; ALT: 92; AST: 40; ALP: 130

Reference Values:

GGT: 7 – 58
ALT: 11 – 45
AST: 11 – 39
ALP: 27 – 100

Thank you for accepting me on this forum and sorry for any grammar error.

#2

Lilo,
Welcome and thanks for your post and sharing your story with the group. I must agree with your doctors that from the information you have provided, the need for a biopsy is questionable. There are other reasons why you might have stool inconsistancy than to say it was caused by a liver disease issue. Although some of your LFT’s are slightly elevated, they are not high enough to with certainty say your liver is the issue. With PSC my GGT labs stayed in the 600-700 range, ALT’s 135’s, AST 40-50’s. Keep an eye on your bilirubin, mine stayed between 5.0-10.5 at worst, and your alkaline phosphotase, mine 300-400’s. I said all that to encourage you to just take a deep breath, a step back and follow the advice of your doctors. If a biopsy is needed fine, but if not, you don’t need to put yourself through the discomfort and the potential dangers that come with a liver biopsy.
Keep in touch and let us know how things go for you.

Mark

#3

The elevations in your LFTs are suspicious. A biopsy is necessary to diagnose small-duct PSC that does not appear on MRCP. My daughter was diagnosed at age 15 via biopsy. That said, her LFT were higher than yours are currently. The advantage of earlier diagnosis is that there is an experimental treatment that works better on PSC/UC patients early stage – oral vancomycin. If you do get diagnosed, contact me and I will educate you. Good luck.

#4

Mark, thank you very much for your reply! You’re doing a beautiful job with this forum! Even before I became a member, I read many topics where you gave valuable information about PSC. I will keep your advice in mind!

Cactusgirl, thank you for your aswer too! I so sorry about your daughter diagnosis… I don’t know if the earlier diagnosis will do any difference for me. For my researchs, oral Vancomycin isn’t marketed in my country (Brazil) and I don’t have conditions to import the product, besides the fact that it is difficult to obtain a prescription for OV, since it isn’t a “protocolized” treatment for PSC in here. How old are your daughter now? Is she doing good? and how high was her LFTs at the diagnosis? Does she have UC too?

#5

A determination needs to be made first that you do have small duct PSC before biopsy is necessary. Just keep that in mind. This can be ruled out with MRCP.

#6

Thank you for asking. She is doing great! She is now a D1 athlete at Stanford playing lacrosse and will graduate this June with a Biology degree. All damage to her liver and colon reversed with the vancomycin treatment. She has been doing research on the gut microbiome for the last 2 summers, one in Norway at the PSC Center there. I can email you several papers and more information if you are interested. I co-wrote 2 of the papers with Mayo Clinic and Stanford. This potential treatment was discovered by accident by a Stanford doctor, Dr. Kenneth Cox.

#7

Lilo,

Welcome to the forum. I’d agree with Mark, that your ranges aren’t that high, although they might be representative of PSC. The question I’d ask a hepatologist is why they want to do the liver biopsy; is that the only way to determine what they are looking for? The biopsy comes with risks (small, but they are there). It should only be used of a specific purpose that cannot be achieved through other means.

Steven

#8

Mark, sorry, I didn’t understand very well what did you mean with “determination”. Are you saying that the doctor should do the diagnosis of small duct PSC before the biopsy to then made it?

Cactusgirl, good to know that she’s doing great! I really appreciate any information about it, I will send you a private message with my email. Thank you!

Steven, thank you for the aswer! The biopsy is being considered because they don’t know what is causing my abnormal LFT’s. Even though it isn’t much high, it’s progressively increasing in the last 6 months.

#9

Lilo,
What I meant was, if they do an MRCP (w/contrast) they can get a good idea if there are strictures in the left and right hepatic and common bile ducts. If that is the case, you can use ERCP procedure to validate that and dilate and clean out the strictures. That will provide immediate relief. If after doing MRCP they believe those larger ducts are clear, then at that time they will make a determination of whether or not they should do a liver biopsy to confirm or rule out small duct PSC. The small ducts of the liver are very tiny and are not reachable from the left and right hepatic ducts with the instrumentation they use. They cannot be cleaned out like the larger ducts. Doing the biopsy would help them determine if you have small duct psc and what stage of liver disease you are at.
You just don’t want to do a biopsy just to be doing one. It will not fix your liver problem and you could have complications from the procedure. I had two of them participating in a liver study program prior to transplant and it was not pleasant. After the procedure I had to lie flat on my back for over an hour just to make sure a bleed was not going to happen. If so, they would have had to rush me into surgery. That’s one good reason not to pressure your specialist about the biopsy. If you have PSC there’s nothing they can do to stop it, just give you the best maintenance of the symptoms, blockages and sometimes infections, etc. that can and will happen.
Just take one day at a time. As long as you are under the care of a hepatologist with a transplant center he/she will be doing all they can for your health’s best interest. It goes without saying but I will say it in case you don’t know, alcohol should be avoided in any form and in any quantity at all costs. You will not be put on the transplant list if you have alcohol in your system and are not strictly following the transplant centers protocols. Good luck. Feel free to ask questions any time. We are here for you.

Mark

#10

Mark, thank you for the explanation, now I understand what do you mean with “determination”. In the next week I will do another bloodwork (GGT/ALP/ALT/AST/Bilirrubins) and take the MRCP result to my doctor. In the radiologist report, there is no change in any structure of my liver, all clear, but I still have RUQ pain. I have two questions: 1) how fast the LFTs can increase or decrease? My doctor ask these bloodworks every month, but I don’t know if 1 month is enough to see a significant difference in the tests. 2) Can I have pain in the liver even with normal MRCP?

Att

#11

I had another LFT this month. GGT increased a little, ALP back to the “normal” range and Billirubin increased in relation to the last month, but still is in the normal range. Values are below:

GGT: 221 (11-58)
ALP: 99 (27-100)
ALT: 89 (11-45)
AST: 40 (11-39)
Direct Bilirrubin : 0,29 (max 0,4) /Last month: 0,22
Indirect Billirubin: 0,61 (max 0,8) /Last month: 0,44
Total Billirubin: 0,90 (max 1,2) /Last month: 0,67

Does this “slowly and gradually” increase in GGT may be related to PSC?

#12

Lilo,
Hi. From the numbers you have shared, I’m not seeing anything unusual to be concerned about at this point PSC related. I know you told us you have been seeing a GI, but have you made an appointment to see a Hepatologist? You really need to do that if you haven’t to get a conclusive diagnosis. I’m not convinced yet that you have PSC based on what your labs are showing. That being said, I certainly can’t be sure either but a hepatologist can get to the bottom of this.
I would just keep living your life day by day, and not get over worried about these slight changes in your labs. PSC will definitely let you know that you have it, if you know what I mean. A few indications are weight loss, jaundice, itching, and abnormal LFT’s for starters. Good luck and take care!

Mark

#13

Hi!
Just wanted to chime in!
Most likely your GI is suspecting PSC because UC has a significant association with PSC (aka much probable to be diagnosed with PSC as a UC patient than the general population). But they are many other conditions associated with those LFT elevations and often not as severe as PSC can be.

In my opinion, the fact that your ALP levels are only slightly elevated, if not even in the normal range, is a good sign against PSC! Also those are known to fluctuate a lot and are often increased in smokers, people of african ancestry or if you don’t fast before the blood test is taken.

A good thing to remember is that one specific LFT cannot tell you much and it’s with combination of high AND normal values that specialists can point towards specific conditions. For example in your case, GGT and ALT elevations combined with normal AST/ALP could point towards fatty liver disease (but you had a clear ultrasound). But it could point to many more issues that only a doctor (especially a hepatologist!) would know of.

For the biopsy, maybe the doctor is checking for other conditions rather than just for PSC? Anyway, good luck with all of that!

#14

Hi. Sorry for the late reply! I’m trying to keep the advice to live “day a day”. I was being crazy with those LFTs. My next Blood test will be on April. My doctor said that the better strategy is just keep me on observation for a while. If the numbers continue to raise, maybe I will need to do a biopsy in July or August. I don’t know how is the medical specialization in your country, but I think for here, the doctor who treats liver diseases are the gastroenterologists. I’ll try to find out if there is a more specific doctor. Thank you again!

Ldde.

Hello! Thank your for the answer! I’m trying to keep calm but sometimes it’s difficult. Is it possible that the causes of enzyme elevation are extrahepatic?