I am very happy with these results. However, I wish some medical genius could explain why our fibrosis can increase when our numbers are so good.
Nice! 💃I'm doing a happy dance for you!
Thanks! Dance on...😀🎼🥁💃
So happy for you. 👏👏👏👏👏👏❤
It's such a strange disease isn't it? Take good care of yourself.
Thanks Stella. I will🦋
Very nice. You can ask that question when you meet with the hep soon & let us know what he says.
ninjagirlwebb...no worries, a question on my list😄. Hope I have plenty of time with him. He’s gonna need it😆
I would be interested in knowing that as well. Seems like I heard that if your LFTs are normalized that the progression is slower. However it seems like everyone’s experience with PBC is different. Why are they so different? Maybe eventually we will know the answers.....
Your numbers look great!👍
Twojer...it had been said on another site, that just because the numbers are good, doesn’t mean your not progressing. So, we get all excited with good labs but then that question remains about progression. 😊
I’m very happy for you! Congrats!
Awesome numbers....mine is just the opposite! Skyrocketing LFT's, but perfect fibroscan.
Where is Dr. House when we need him!!!! Who ever thought we'd get excited over lab results and crockpots!
mrspeffer...🤣. They’re both “must haves”, lol!!! Btw, that recipe book is on amazon. Yes I’ve now learned fibroscan is questionable. I don’t care to have another. I want something much more accurate 😊
I’m so happy for you 🙏🙏🙏
Arlie...thanks! You doing ok after procedure?
very gassy , burping alot , waiting for the results
I’m sorry. Hopefully that will pass so you can feel better. 😊
Thanks qwill , i have an appt 10/18 with the gastro that did the procedure and than set up appt for another endoscopy to check it out🙏
I’ll keep you in my prayers 🙏🏻. I’m sure this will delay your visit to your sisters. But when you are able to go, I’m not far at all from Mineola. 😊
Yes i canceled the flight , but i cant let this go , when the endoscopy is done than i have to get a ( Transesophageal echocardiogram. A small transducer attached to the end of a tube inserted down your esophagus allows a closer look at the mitral valve than a regular echocardiogram does.). I have Mitral Valve Stenosis , so we’ll see how everythin goes 🙏🤪
Oh my😕. Yes, we have to take care of #1 as we are the thread that holds many things together for ourselves & our families. That’s why we’re strong😉. You’re in my prayers 🙏🏻😊
You have great results. The fibroscan has a definite margin of error. Don’t be so sure that it went up. One scan doesn’t tell a whole story.
Ellyne...thank you😊. Well all I know is my score went up from a year ago. At that point, my GI questioned it. Said it also could have been the technician. Who knows😊 I have watched a video of how they’re done & seems it should be error free.
Ellyne...also, that fibroscan score is why I’m being referred to a hepatologist. My GI said in the beginning that if I ever became cirrhotic he would refer me out. Well, I’m not cirrhotic but he’s not sure why fibrosis increased & wants hep to get involved.
I’m going to get an rx for the fibroscan
Hope that turns out with good results for you. Let us hear. Take care & get well🦋
GREAT to see your numbers are so great. Looking forward to what the hep says about the fibrosis. Questioning everything these days! Hope you are feeling great.
Ottley3...G’morning ☕️☕️☕️. Yes, I’m anxious to meet with him. I have to find my patience, as it may be a bit before my appt. the hospital is still going through their process of credentialing. Yes, I’m still feeling great, thank you. Have a great day!🤗🦋
I’m newly diagnosed and my numbers are not quite as good as yours,but ALT and AST are no longer out of range and ALP is 160. After being diagnosed by a GI doc, I asked for a referral to a hepatologist. He started me on Urso and ordered a fibroscan, said we would hold off on a biopsy for now. He said based on my labs and no symptoms that he thought I would have little to no fibrosis. Just got the results from the fibroscan and I think we were both a bit surprised at the results. I’ve only talked briefly with him via phone about the results (F2/F3-in some areas). I’m not really sure what that means except for moderate - severe fibrosis. I will definitely have your same question on my list when I go back in December! It’s so much to learn, but for me knowledge is power and that’s how I cope. I like all the facts whether good or bad. Enjoying reading in this forum. It’s so valuable!
HealthyChik...when I was diagnosed June 2017, my ALP was 247. ALT & AST slightly elevated. My Internist referred me to GI. I was allergic to Urso & started Ocaliva. Labs were monthly for a while & ALP dropped quickly to acceptable level. The other 2 came to normal as well. Once ALP hit 160 my dr was pleased but it continued downward & I think last January it was 132. My fibroscan in September 2017 showed F2 fibrosis. The one in August showed F3, so obviously the lab numbers can be misleading as far as fibrosis. That’s so discouraging because we all get excited when our labs are normal. I would expect more fibrosis if numbers were out of control but not when they’re so good. Yes, I want answers. I have never itched, no fatigue. 😊
I had fibroscan with perfect labs after being on Urso. My fibroscan score was 21 which was on the cirrhosis range. My hepatologist insisted that I have biopsy because he said there is no way that you have cirrhosis. Had biopsy done June 2017 and I have Fibrosis Stage 2. They took six samples from different parts of the liver. He assured me biopsy was accurate. My levels are all within range being on Urso.
That is a relief. Fibroscans rely heavily on how experienced the technician is too.
I hope so. I didn’t like the technician who did my last one. But I watched a video of how it’s done. It says that machine tells them if they’re out of line or whatever, so it should be foolproof. Says any dr or nurse can perform it. For the first time, my drs NP said next one might be different & sometimes it depends on technician. Well, we don’t want “maybe & sometimes “ when it comes to a diagnosis tool that’s only performed once a year. I hope this new hep will do something different & more reliable. 😊
When I had mine done, the first technician was having issues getting valid hits so they had a more experienced staff do it instead. & my doctor was nice enough to review results with me right away.
I will say, if new hepatologist would do one himself I’ll all for it. But if not, no. My first one pressed a little firmer & had me stretched as far as I possibly could. This one questioned me fasting only 3 hrs. I said well that’s what I was instructed to do. If you don’t agree then find out! She applied no pressure. But I’ve also read that if they apply too much pressure it can make liver stiffer. I don’t know.
I’m praying my luck is that good. I’m so happy your biopsy confirmed no Cirrhosis. 😊
I haven’t had a recheck on labs since being on Urso but it’s only been about 2 weeks so hoping for the best. I guess labs may fluctuate a bit on their own anyways. I had slightly elevated enzymes on bloodwork at my gyn about 5 years ago. She rechecked in a week and they were normal. Probably the start of PBC back then (or even earlier). I have no other health problems so I rarely go to the doc. Thankful my primary doc referred me on to GI. Seems like the disease is different for each individual. Thanks for sharing🙂
I forgot to ask..have you had a biopsy? My GI was adamant about it but said to go see what hepatologist thinks. He was more conservative and said it wasn't needed but after the fibro scan results he says I need it...ugh! Definitely not looking forward to that and from what I've read it sounds like it can be inaccurate sometimes as far as staging goes. It is definitely frustrating.
HealthyChik...my GI prefers fibroscan vs biopsy. Said he gets better overall condition of liver. But they only like to repeat fibroscan yearly to see of meds are working at keeping progression down. That’s entirely too long to check for progression. I prefer no more fibroscan. They only cover about 1/50th of liver. Biopsy is less than that. MRELASTOGRAPHY scans 1/100th of liver. My GI thinks I’ll need biopsy in near future but will let hepatologist take over & see if he can determine why I progressed.
I was diagnosed a month ago. My hepatologist in Chicago was fairly certain it was PBC due to bloodwork. But she did want a liver biopsy. She said that is her preferred test for staging. It was easy. They took me in, started an IV with sedation and pain meds. Next thing I remember I was waking up in recovery. Had to stay there for about 3-1/2 hours, of which I mostly dozed. No problems after other than a slight ache. I have started Urso and will redo bloodwork at the end of October.
Thank you for sharing the info about the biopsy and I'm glad you were knocked out! I have heard stories about being partially awake and I hope that is not the case!😳
gwillistexas...thank you too. Wishing the best for both of you💕
Thank you. Hoping things go well for you also. Keep us posted😊🦋
May interest you.
Normal Enzyme Levels May Hide Advanced Liver Fibrosis
MILAN, Italy, Sept. 9 -- Patients with nonalcoholic fatty liver disease but normal alanine aminotransferase (ALT) levels are still at risk of severe hepatic disease, researchers found.
More than half of such patients had advanced fibrosis, as well as altered glucose metabolism and insulin resistance, Silvia Fargion, M.D., of the University of Milan, and colleagues reported in the September issue of Hepatology.
Nonalcoholic fatty liver disease is now considered the hepatic expression of metabolic syndrome -- obesity, type 2 diabetes, and dyslipidemia account for the risk of advanced liver disease, in addition to the well-established cardiovascular risk, the researchers wrote.
However, the most common criterion for referral to a liver unit is the presence of elevated liver enzymes, and only individuals with increased ALT levels have been enrolled in most nonalcoholic fatty liver disease studies.
So, the researchers said, it is uncertain whether patients with normal ALT have a milder disease and whether they should undergo liver biopsy.
To shed some light on the subject, the researchers reviewed the histological data of 458 patients with nonalcoholic fatty liver disease who underwent liver biopsy from January 2003 through June 2006.
Of these, 395 (86%) had altered liver enzymes; 63 with persistently elevated ferritin or long-lasting severe steatosis had normal ALT levels.
Factors associated with nonalcoholic steatohepatitis (NASH) and fibrosis( â‰¥2) were identified by multivariate analysis. Patients with normal ALT were significantly older, had lower body mass index, fasting triglycerides, insulin resistance, ALT, and gamma-glutamyltransferase, but a higher prevalence of hypertension.
Nonalcoholic steatohepatitis was diagnosed in 59% of patients with normal ALT and in 74% of those with increased ALT (P=0.01).
In the overall series of patients, nonalcoholic fatty liver was independently predicted by ALT (odds 1.11, 95% confidence interval 1.04 to 1.19 per 10-IU/mL increase) and diabetes (OR 1.5, 95% CI 1.1 to 2.0).
However, only homeostasis model assessment (HOMA-IR) predicted more severe fibrosis in patients with normal ALT (OR 1.97, 95% CI 1.2 to 3.7).
The evidence suggests that liver biopsy might be mandatory in most cases unless sensitive and specific noninvasive tests currently unavailable prove their efficacy. However, the investigators said, this raises the question of the feasibility and cost-effectiveness of liver biopsy in an extremely large at-risk population.
At present, biopsy is rarely indicated for patients with normal ALT. For this reason there were only 63 cases with normal ALT for this study, a definite limitation, the researchers noted.
A recently proposed scoring system (NASH score) to identify patients with advanced fibrosis potentially rendering liver biopsy unnecessary in 75% of cases, found a positive predictive value of 100% and a negative predictive value of 89.6% for identifying patients with and without advanced fibrosis, respectively.
The findings from the present study suggest that the score could also be used in the general population, including in persons with normal ALT.
Diabetes and insulin resistance were factors most closely associated with severe liver disease in that population.
In addition, hypertension, a key feature of the metabolic syndrome, was surprisingly more prevalent in patients with normal ALT.
This underlines the fact that the metabolic alterations related to steatosis and to adipose tissue-related endocrine dysfunction occur independently of overt liver damage.
Study limitations included the small number of patients with a normal ALT, and the variability of liver biopsy in the sample. The large number of patients referred to the liver units for hyperferritinemia means that this patient population was not truly representative, the researchers said.
These data indicate that more than half of nonalcoholic liver disease patients with normal ALT levels have a potentially progressive liver disease, they said.
In the absence of biopsy or of an adequate score to identify those at risk, these patients could miss careful follow-up and might not be motivated to adopt lifestyle changes that might cure their liver disease and the extrahepatic manifestations of the metabolic syndrome.
Clinicians should be aware of the importance of a complete clinical evaluation for early diagnosis and treatment of liver disease, as well as the different manifestations of the metabolic syndrome, they concluded.
It is interesting but I don’t have fatty liver to my knowledge. It was first mentioned on ALF support group that good numbers do not always indicate we have not progressed. True. 😊 I’ll learn a lot more from hepatologist when he finally lands, lol!
Thank you for that info. The liver is one confusing organ.
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