PBC Foundation
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Alt phas creeping up

So my Alt Phas went from 143 to 175. No apparent reason. Dr. Sent me for another ultrasound. The first one was done 2 years ago. When I was diagnosed with PBC. The one done yesterday showed the cirrhosis but it was the same as two years ago. No change. So I guess the Urso is doing its job at slowing down the process of the disease. Dr. Didn’t seem concerned about the raise in labs. He said we would repeat labs in three months. Just wanted to share and see if anyone else has experienced the same and could let me know about your journeys with raising Alt Phas.

Greatly appreciated. Wishing all well!!!

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My ALP was a little higher this time too. It was 131 aboit 6 months ago. Recent check was 147. My doctor was not concerned either.

Pam

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Thank you Pam. I appreciate your input. It’s re assuring. Wishing you all good things.

Lorraine

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Hi, Yep, been there. My doctor doesn't act too concerned about it either. Do you have arthritis too? I read somewhere that bones and inflammation can make ones alk-phos rise. Still, its your albumin and bilirubin that you need to keep an eye on. That's what I have heard. Low albumin is a worry and a high bilirubin.

Stella❤

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Stella

Thank you for your quick reply. It sure makes me feel better know others are too going through the same. Yes I do have arthritis and hypothyroidism. My albumin and bilirubin are still within normal limits. For that I am grateful. I’m just curious. Do you have cirrhosis as well?

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I don't know if I have cirrhosis. They did a biopsy in December of 2016. It didn't show PBC. But I've learned here on healthunlocked that a fibroscan can show more than a biopsy. I've never had a fibroscan. You can't be over weight which I am.

I have had CT scans, an MRCP, an ERCP, and a biopsy. Plus 3 ultrasounds. What I need is a fibroscan. Do you have cirrhosis? How long have you been diagnosed?

Stella❤

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Yes I do. I was diagnosed in 2016 after colon resection surgery. The surgeon saw my liver and then it all began. I’ve had 1 biopsy and now two ultrasounds but have never had a fibroscan.

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How do you feel these days. What are your main symptoms. And what about your bilirubin and albumin have they ever been abnormal? Are you on Ocaliva too?

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Stella and Lorraine Louise-

I have had the Fibroscan last year. The girl who did it had a heck of a time and what should have been a 10 minute procedure was a 45 minute! She told me she was "new" at it and that she had just got trained on how to use this machine and only her and one other girl knew how. She also said how much trouble she was having because my ribs were so close together (they take the readings between the ribs) That was not very reassuring, let me tell you. With all that said, she told me everything looked great and my results were good. The Dr called me a week later (YES, ONE WEEK) and said i measured at a 23 and that this was not good news. I told him what I went through with that girl and he said "Oh, the machine was correct." I said, "Really? She didn't even know how to use it and even told me my results were good!" Anyways, I don't worry about it. I know she did it wrong and was getting a reading off my bones. I do have an ultrasound order in which I have to go get done. I just need the time to schedule it. Will let you know how that goes since I haven't had one in over 2 years! Take care

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Thanks for the reply. Interesting. What a fiasco. I hope you are feeling ok. Let us know how the Ultrasound goes.

Stella❤

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Stella-

I feel okay other than "the itch" mainly at night, every night. I had that upper pain you mentioned in a previous thread and remember being told that that is pain on other organs from the liver being inflamed and that you cannot feel pain in your liver. Do your liver a favor tonight and make some celery/apple juice. Plus, the vitamins will help you to calm down and feel better :)

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I need to get a juicer. I do have a nutri-bullit. But I'll give it a try.... ❤❤❤

Thanks.

Stella

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Hi Stella,

Happy Friday! Hope you're feeling better today! Did you make some celery/apple juice? I've been doing mine every morning and cannot believe how alert and physically better I feel. It wipes away the fatigue too :)

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Use the Nutribullet. It’s better anyway because you get the fiber.

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I did a fibroscan early this year after I asked my hep about it after reading about it here on this forum. Hep had it done that same day.

The first technician doing it was fumbling as well. Fortunately, she knew enough to call in a more experienced colleague to do the scan.

The fibroscan was consistent with the ultrasound I did the prior year. Hep said we will do a ultrasound & a fibroscan every few years.

Now I learned that there is this new technology called elastograph developed by the Mayo Clinic. I will ask my hep about the merits of this & whether it is superior to a fibroscan. Hard to keep up with this stuff.

Haley

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MRElastography is supposed to be much more accurate than fibroscan. It has 99% accurate diagnosis rate. They say it is so accurate it may be used in the future to detect certain cancers, breast, prostate, etc.

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Thanks! ❤ Does that require the patient to be a certain BMI? I may ask about it.

Stella

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I’m not sure. I’ll read it again. Just got home. I’ll get back

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Stella, google MRElastography. I’m reading the link: diagnostic imaging.com. I haven’t read all of it but you might see if you can find your answer. 😊

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Stella, also click the resoundant link. It will tell you where the machines are located.

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Thank you!! Will do. ❤

Stella

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Hi Donna , I had a fibro scan a few months ago. It showed i am 0to1. I dont trust those fibroscans, but thats just me. My labs are normal ranges, so i do t know what to believe. I had a liver biopsy in 2015 showed i was at stage 2. Who knows.

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I lost faith myself. I do not want another fibroscan... don’t understand why drs want us to have a test that is not reliable. With this disease, they of all people should want something they can trust😊

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Wow.... That's interesting and scary too. I guess we have to have ALL the tests and come to some conclusion in the middle. 😔 I mean, what can we trust? ❤

Stella.

Hope you're feeling good these days.🌼

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Hi Ktitel I am overweight and have has 2 fibro scan one was 5.5 the other is 7.5. I am waiting to go to the Royal free hospital for a different medications.

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Really?? Here (USA) in order to have a fibroscan your BMI must be within a certain range. I'm working on it, believe me. ❤❤ Thank you.

Stella

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I am in the U.S and they never asked me about BMI or weight, but I am at 23.3% which is good I guess, but no one ever said anything about it.

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Hi

When they received my paperwork with my weight.... They let me know. 🙁 But I'm hoping this ultrasound will show them what needs to be seen. It's unacharacteristic for PBC, what I'm experiencing. It could be a mass, tumor, maybe even a stone. I don't know. The pain is pretty generalized to one aggravated area.

Stella❤

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