My Biopsy 2 years ago said "zero" evidence of PBC. My labs though said I had PBC. I was put on URSO since 2016. Only thing elavated for 2 years has been my Alk-phos. It fluctuated between 157-187 approx. Then Sept./Oct. this year, I felt nauseous and URQP. Labs jumped including AST & ALT. Especially ALT. Last reading it was 117. Could be higher now. Also my ferritin is 192. Too much Iron in my liver. My PA knows nothing about why that is. And said not to change my diet. 😳 Yes, im done with her. I see my hepatologist soon. Thankfully i'll be covered by my insurance!! AND... Thank you to EVERYONE who advised me and enlightened me about the unreliability of biopsies and Ultrasounds in detecting early fibrosis.. or even later fibrosis!! Anyone newly diagnosed please listen to that advice.
4 Ultrasounds over a 2 year period stated "Perfect liver... Unremarkable liver... No change with patients liver... and again Unremarkable liver!
After feeling sick for 3 weeks, and labs rising I had that 4th ultrasound. That Unremarkable ultrasound. I pushed my PA to give me a referral to have an MRE. Again, thank you to everyone who suggested I have one. Just 2 weeks after my last Ultrasound..... Here is some information on MRE and my results:
According to Ehman, an MRE scan, based on the color-scale picture it projects, radiologists can instantaneously know whether the patient has a healthy or diseased liver. Liver tissue stiffness is measured in kiloPascals (kPa), with a normal liver having a stiffness of roughly 2 kPa, the same consistency projects inside body fat. Diseased livers range from 3 kPa to more than 10 kPa.
My results are 3.14 kPa. "Definitely fibrosis." I still have to discuss this with my hepatologist, but, I'd say I'm a non-responder to URSO. We will see where I go from here. Especially since my ferritin level is so high too. 😞 Maybe OCA? I'm not sure what other choice I have. ALSO... That 3.14 kPa isn't accurate. My ferritin (iron in my liver) is 192. Technician informed my doctor MRE cannot read fibrosis accurately when high levels of iron are present in the liver!!! Ugh!!! I will have to redo MRE once we figure out why my ferritin is so high and get that under control. Rollercoaster ride!!!
Great!😞😞😞 Apparently high iron in the liver can skew MRE reading. And of course... my ferritin is 192. My PA said not to worry about it. You know.... that same PA that said don't worry about changing my diet even will high ferritin and high ALT. Ugh!!! I give up. ❤
Hi stella, thank you for your informations. I think at least you’re in very early stages. Am I wrong? I think we are not supposed to have normal results.
😅😅 I don’t know the song. I’m from Asia and its 5am here, I can’t take a deep sleep in night and reading all post here. I’m stressfully awaiting my biopsy result for confirming the pbc or probable AIH.
Your posts have been strongly effective for me to understand better about pbc
Sometimes we have to inform the doctors which tests we want done. Many times they learn with us. I'm sure seeing that with my doctors. They'd never heard of MRElastography. 😊 What it is, is a software program that is added to an MRI machine which enables doctors to measure liver stiffness 95-99% accurately. And sees much more than standard MRI. It's color coded to detect fibrosis.
Man, you aren't kidding. I'm going to have to re-dye my roots!! The stress waiting to find out!! Still more tests a head because of the iron in my liver. 😊
I thought anything below 7 kpa was normal is it different in the US, I am in the UK and I am 19.4 kpa and told fibrosis with part of liver undamaged is still working as normal ( this was two years ago )
MRE is a software package/upgrade that works along with the MRI machine and enables doctors to see much more than a standard MRI does. And it's ALOT more effective in seeing and staging liver issues and stiffness. Not all hospitals have purchased this software for their MRI machines. You have to ask for MR Elastography specifically.
Hi Stella, well done for advocating for yourself! And this is not a bad result at all. I just feel sorry that you have several pieces of information and you're not sure how they fit together to make a clear picture. I'm hoping that your new hep will help you gain a better understanding - It's time! Xxx
Thank you❤. But my doctor just called😭. Because my Ferritin level is 192, she said the technician who read my MRE scan noted in the results that my 3.14 kPa is basically an unreliable score. MRE is color coded imaging. And high amounts of iron in the liver (as mine is), just shows up as black, skewing fibrosis imaging. Ugh!!! Once we can figure out why my ferritin is so high and remedy that.... I will redo MRE. 😞
Oh that's so frustrating! But you'll get there. In the meantime go and hug a cat, dog, horse – or all three! I'm a great believer in the power of the natural world to bring comfort.
I totally believe that we have to be our own health advocate. I try to record all lab history and relevant articles I read and share with my doctors to prove a point. Some with work with me, some won’t. I stay with the ones who’s willing to listen and help. This is a full time project for me.
I don’t know what causes high ferritin but you can lower ferritin by donating blood. People like us probably can’t donate blood. You can have a phlebotomist draw some blood though. . I have a friend who did this through her doctor. I believe Dr. Mercola’s website talked about this topic a while back.
Morning...boy oh boy...you must be at your wits end with all this. I was just reading about how Milk Thistle helps to reduce iron overload in liver. Just googled milk thistle and iron and it came up. I had to stop using it because, and this is for all of the thyroid folks here...milk thistle may mess with out TSH production, causing over stimulation of the hormone. The result is way too suppressed TSH. That's my current woe. So, when I get tested again in Dec. ( sans milk thistle for 2 months), we'll see if I solved this mystery. Wouldn't it be nice if our trusted practitioners did this research for us instead????
Hi and thanks for sharing. Sorry u are going through all this. It seems as with other research that they come out with something that looks like the gold standard only to find it’s not so good - like there is no OZ of resolution for so many things. Unfortunately then patients are having to be subjects for experimentation to validate whether or not a treatment or assessment technique works. — and there are side effects to that. 😂 good need is that they are searching and highlighting now the liver as so many people are dosgnosed with other maladies of liver and hopefully somewhere in the process PBC will be noticed. - thanx to Robert and Collette and company that there is advocacy. Angels in our midst. A humble bow of gratitude. .
MRI-Magnetic Resonance Imaging and MRE - Magnetic Resonance Elastography are done in the identical piece of equipment. That huge noisy tube. The difference is the "added software & equipment" that's used plus the "liver pad."
Most hospitals have MRI equipment. BUT, they can only do MRE measurements IF that particular hospital has purchased the equipment & software from the Mayo Clinic. It then gets used with that same piece of equipment they use to do an MRI. That software is downloaded and added to their MRI equipment. So it's one piece of equipment that does two very different ways of looking at our organs. I believe they have developed "just" an MRE machine as well. I've seen it in pictures. But where I had mine, they used the MRI machine using the MRE software.
MRI does 'not' show doctors everything they need to see to determine stages of liver fibrosis. An MRE, and the way it works sends waves/vibrations sort of, through the liver, color coded levels/layers that can very accurately determine the stage of fibrosis.
So, no, I didn't have an MRI at the same time that I had the MRE. Same piece of equipment.... different way of using it.
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Just got home from ER
Biopsy says PBC/AIH overlap
