PSC....?

[Blossompossum]

I have been having tests since Jan of this year. I have neg AMA, ANA and SMA. I have had a liver biopsy in September and that was negative aswell. They removed my gallbladder and also did a cholangiogram that came back unremarkable.

Now I am at the end of my rope. I am now 14 weeks pregnant with baby number 4 and I have just had a sigmoidoscopy last week to test for UC, that came back neg aswell. Now my specialist wants me to have a MRCP..(?) done but has told me I have to wait until the baby is born because of the contrast injection.. Well why the hell didn't he get me to do this test the past 8 months that I HAVNT been pregnant. Honestly!

I am just so stressed now thinking it is PSC.

I just need some advice some test that I can do that will tell me Yes or No. I have been waiting a year now and I just cant wait another 6 months for an answer.

[Librarianlady]

Gosh, our stories are somewhat similar in a sense. I had cholestasis of pregnancy. Itching in third trimester and liver wonky. It is supposed to stop after delivery. For me, the itching stopped....but here I am with high ALP, ALT, and AST months after delivery. The liver specialist assumed PBC, but all antibodies test came back negative like you. He never mentioned PSC, but through my own research that seems the only thing left and needless to say it looks pretty scary. I'd take PBC any day over that. I switched to a research liver doctor and will be seen in February. I'm sure the next step is the MRI and biopsy. I'm interested to see what happens next for both as we both are a mystery. My ultrasound was normal. My last ALP was 164, ALT 57, AST 34. The numbers slightly go up and down with each test. Last the ALP went down 30 points, but ALT went up 20. It is scaring me. I'm 33 and you look young also. I don't have IBD, but in some cases people get PSC without it I guess. What were your numbers and did they mention PSC to you or is that your guess?

[Blossompossum in reply to Librarianlady]

Wow, extremely similar.

This is my 4th baby and I have never had the liver thing with itching during pregnancy and so far am not itchy with this pregnancy.

My latest specialist has just started throwing the word psc around and I wish he hadn't because it's Christmas and I can't relax I'm a nervous wreck and I want to know now.

Our blood results are quite similar.assell. not very high but out of the normal and they go slightly up and slightly down. My alkaline phosphate is 147. GGt 187. Alt 31 and ast is 33.

I have been reading journal written articles about psc and the only thing that is keeping me posotive us the fact my auto antibodies test are all neg and my liver bio was clear and no UC.

When is your liver bio booked in for?. I am going back to my specialist on the 22nd and demanding a test I can do while pregnant because I can't wait 6 months for an answer.

I'm 28 married with our 4th baby on the way. I don't want to be dead in 10 years. This is hell

[Librarianlady in reply to Blossompossum]

It seems so unlikely that you have PSC from everything you wrote. Especially the normal biopsy and cholangiogram. I wonder do you think he is just throwing out ideas instead of admitting they have no clue? Back in October, I was told by a doctor I had PBC and he was certain. I walked out of there feeling upset. Ten my bloodwork comes back and he was wrong. I see my new specialist mid February. I just have this feeling I don't have PSC, although it seems the only thing left. That is why I am worried. But most have some sort of IBD, unless I have it with no symptoms? The only other conclusion is PBC in the very rare case of no antibodies at all or possibly small duct PSC. I read all the crap too. I just tried to stay away during the holidays, but its hard not to worry. Especially with young kids. I don't want to die in a decade either. I always look at my baby and worry I won't be here to raise her because of these stupid enzymes being high and the possibilities. How long has yours been raised or when did the gallbladder come out?

[Librarianlady in reply to Librarianlady]

And sometimes I wonder if it is just taking time to go back to normal after the trauma of cholestasis of pregnancy which is what I wondered for you with the gallbladder issues. Did he throw out PSC casually or does he strongly suspect it?

[Blossompossum in reply to Librarianlady]

How long has this been going on for you and when are you next having tests done?

[Blossompossum in reply to Librarianlady]

My 1st specialist said he tested for everything. First I was worried about pbc but he assured me it was Def not.he was honest with me and said said he had testes me for everything and was referring me for a 2nd opinion because he had no answers.

It was the 2nd specialist who said he had his money on UC and PSC. Bit when the UC came back negative he said yo go for a special mri when the baby is born as he is highly suspecting a thing called psc. I immediately starting crying and wish he hadn't told me that.

So I have now booked another appointment with my 1st specialist to just beg him to do something to find out what is going on. I also went to the gp as I want another referee to someone else.

I had the gallbladder out and liver biopsy with cholangiogram in September.

I went to my Dr in Jan when my baby was 2 weeks old because I had chronic diahrhea. She thought it was my gallbladder playing up so ordered lft. When they came back high she said it was either gallbladder or still high from the placenta during pregnancy.

Then my specialist said I need to have a lover biopsy so take out the gallbladder and do it all in 1 hit. He was hoping it was the gallbladder playing with my lft and diahrhea but sadly no.

So I am sick of plucking out organs and having biopsys withnno answers.

Sorry for the essay.

[Librarianlady in reply to Blossompossum]

Is a chanliogram, an MRI or same thing as a MRCP? Because I found a link to give you if so. Or is that a CT scan? I don't mind at all a long response. Do you still have the diarrhea and did they test for a bacterial infection or anything like that? My last blood was drawn about 6 months postpartum.

[Librarianlady in reply to Librarianlady]

My next step is seeing a hepatologist instead of a gastroenologist. I see him in mid February and that will be my next move, no tests until then. Don't believe everything they tell you. I've learned that the hard way this past year. M last doctor was fully convinced I had PBC, I had an OBGYN tell me I didn't have cholestasis of pregnancy and I had normal pregnancy itching, and many other wacky bizarre things that were false. My sister was told by her doctor she thought she had uterine cancer, then the biopsy was fine. So take what the doc says in stride. Plus, it's the last thing on the list so that's probably why. But from my research something would have came up funny by now I mean you have had a lot of tests!! But seriously, PBC seems much more innocent than PSC from what I've researched, right? It is all scary living. In the unknown and being pregnant or having a little baby. We will be ok, I just know it. I can't help but wonder if the gallbladder did short term damage or inflammation to your lover or if there's an infection? When are you seeing your old doc?

[Blossompossum in reply to Librarianlady]

Well I had never had a gallbladder attack and when I had ultrasound everything always looked fine. The only reason we took it out was because I didn't want to have 2 separate operations. The cholangiogram is where they put dye down the bile duct and use an X ray to see if there are any blockades etc.

When I was looking into pbc the life span was about 10 years but when he told me tests for that were negative I stopped looking into the pbc.

[Librarianlady in reply to Blossompossum]

Hi, I thought I had replied to this a few days ago, but apparently my ipad didn't send it through all the way. Hope you had happy holidays. I was hoping that you had a good time and didn't worry too much! Anyways, I'm going to send you a private message and send you my e-mail and facebook link. Talk soon!

[Librarianlady in reply to Blossompossum]

Hi, what did your doctor tell you on the 22nd?