Hi all, read the post below from an anonymous patient on another forum. I've never heard of a MELD score. Anyone else had one done? Should I be asking my GI about this??
Thanks, Stella
(Fatty liver is a normal part of aging. High triglycerides, alcohol use, medications - all of this adds up over time to affect the liver.
After a trip to ER and admitted for pancreatitis, I learned about my liver.
Ignorance and "normal lab results" combined to leave me shocked to find stage 4 liver fibrosis / cirrhosis threatening my life expectancy. Hindsight is 20/20 as I look at symptoms (like fatigue) that could have been caused by any number of other reasons.
Most PCP's are NOT liver specialists, and look to the lab results to determine course of action and treatment plans. The Fibroscans are rare, not found at just any hospital. Many general practitioners do not even know about them!
Get your MELD score if you have been lucky enough to find out that you have advanced liver disease, and work closely with your PCP to get referrals to a Gastroenterologist that has a Fibroscan available.
We all know the rest - dont drink, livers can heal, etc. There is no "cure" but a liver transplant will keep you near the transplant hospital, at least alive for a couple few more years. Maybe there will be treatment made available during that time.)
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Stella, MELD stands for model for end stage liver disease. My MELD score is 10. I am stage 3 severe fibrosis. They gave me that score last suumer at the hepatolagists office. I believe the score goes from 6 to 35 or something. Nobody worries too much until you get to the late 20's and early 30's whichnis when they start looking for a transplant. . Anyway, they figure it from your LFT's and biopsy. If you are early stage like stage 1 or 2 you probably aren't bad enough to get a score. So, lucky you! That's one thing to celebrate anyway. I do hope you are feeling better.
That's just it. I don't really know what stage I'm in. I've only had a biopsy, ultrasounds, and labs. All 3 of those are unreliable trackers for PBC staging and yet, this is all my GI and Hep do. I can't get my Hep or GI to do anything different. Especially now even with my LFT'S recently going up. Maybe it's time to see someone else. How is a PBC patient staged? What tests or scans should I be asking for? I feel like a sitting duck and my doctors are telling me ultrasounds and labs show them everything they need to know. How do I tell my hepatologist.. Um no.. you're wrong. People with Cirrhosis can have normal LFT'S. Shouldn't he know that? It's nuts.
Are you seeing a hepatologist who studies this disease? It’s so rare and they don’t all focus on it. Look for the doctor’s writing articles about PBC and involved in clinical trials.
Is your alk phos still under 200 & your billirubin normal? I don’t think you need to think about liver transplant which is what a MELD score is for. Is there not another hepatologist that you can go see which is covered by your insurance? Or maybe if there is a Mayo clinic near you to get a second opinion or consult with. That might give you peace of mind.
I recently “discovered” that my friend also has pbc & was diagnosed before I was. We never talk health issues so that is why I only recently know of her pbc issue. She only sees her hepatologist once a year & gets an abdominal ultrasound. I think her GP monitors her labs etc.
We all approach our condition differently. I quit seeing my GP except for annual physicals & when I am sick. My hepatologist told me he wants to see me every 3-4 months so that is what I do.
Sending link explaining MELD Score. Stella, you can request your labs before leaving MD office or pick up at lab same day, need form on ID AND tell them you want to assess. Those labs are yours.
You may consider seeing an expert in the area of Hepatology. GP’s did not “study” the liver and what it needs.
Look at it this way: If you kidney issue urologist, if you have heart issue you see cardiologist, bones you see Osteopath etc....
Good idea to be in the hands of an expert.
SunnyXXOO
Stella,
Here is a link to a 'MELD Score' calculator - as always, your doctor is the best one to be asking these question of.
Try not to worry so much - I know this is a hard ask, because it took me about a year after diagnosis before I stopped worrying - as you know, I've been diagnosed 29 years and for most of them I actually forgot I had PBC (after I stopped worrying).
Thank you. Did you respond well to URSO? Ocaliva? How are you? I think about you as well as Shannon.
So many are able to know what stage their in. I would just like to know that too. Especially now when I'm having issues with numbers going up and nausea and pain. My husband wants me to get a second opinion with another GI who actually has a fibroscan scanner. So at least he recognizes this equips him to better understand what's going on with his patients.
As in the UK, they don't seem to 'stage' here in Australia, so for most of my time with PBC I was really unaware of what stage I was. Once I began to feel unwell most of the time I started really doing research into the condition and from that research I have been able to work out that the result of my biopsy (at the time of diagnosis) was consistent with stage 2 - an ultrasound done 7 years ago revealed I had moved into cirrhosis stage (stage 4) and a subsequent fibroscan gave a result of 30, this surprised me and my 'new' specialist because, as you know, my LFTs were (and always had been), and still are, near normal. I am not on Ocaliva (I think it was only approved here in Australia last year).
As for how I've been - not doing too bad, just having a few varicies banded etc. hopefully I won't have to have any more done for a while.
Yes, I think you probably should get a second opinion, it may help you not to worry so much. As for the 'liver' pain and fluctuating numbers, that can be caused through inflammation in the body, i.e. have you had a cold recently, or have you started on any new drug/herbal supplement recently, or even had a tooth ache? All sorts of things can cause inflammation in the body, which in turn can affect the liver.
Nope, off the supplements. Toyed with going back on but, didn't. No cold or flu. It's my ALT that's 5X higher than it should be. Other enzymes up too. ALT going up means liver damage going on😕. That's what my PA says. I pushed for the MRE. My medical team is behind the curve when it comes to PBC. I have to do all the research and share it with them. My MRE is tomorrow morning. It will be, what it will be. Gonna try to get some sleep. ❤
OCA still not approved here in Aus unfortunately. I'm still taking it as part of the trial but unable to gain any information as to when it may become available.
Hope you're as well as can be expected. I don't know if you saw the post from hils67 informing us that Peridot passed away in October - I know you and I communicated with her often in the early days of the forum - I am shocked at her passing at such a young age.
Angela passed away? No, I didn't read about that - I've been having issues getting on this site for a couple of weeks now, but today it seems to be working fine. I am so sorry to hear that. Was it PBC related?
I'm doing okay, had a few bleeding issues after my first session of varicies banding, but all was good after the second one.
Hi! I know how you feel. I agree that you should get a second opinion, perhaps with someone who is part of a hospital that has a specialty in liver disease or in a perfect world autoimmune liver disease. Insurance is so frustrating but I would think a specialist would be covered given the fact that you do have this disease. HUGS.
I also felt the same way. I am one who prefers all the knowledge I can get and then I begin to get at peace with things. I really like my GI doc, and he seems very knowledgeable about PBC, put since he treats such a multitude of other illnesses, I just thought it was best to see a hepatologist. Luckily I live close to a metropolitan area so it wasn’t difficult to get in and my insurance covers it. Originally my GI wanted to do a biopsy in order to stage, but agreed it would be best to wait and see what hep said. The hepatologist agreed with the diagnosis but was very conservative, said I had good liver function (based on my labs), said no biopsy now, started me on URSO, but he did order a fibroscan, said continue a healthy lifestyle and to come back in 3 months. Fibroscan results showed F2-F3 which is moderate to severe fibrosis. I was truly surprised and I think the doc was too! Now he wants to do a biopsy to get a stage. With that being said, I feel like after the biopsy I will have completed a fair amount of testing and I still don’t think he’ll be 100% of my exact stage. So much is not known about the disease and as you read about so many people who have been a stage 4 forever and have lived happy productive lives, I have decided just not to worry about it. If I don’t have any symptoms, I don’t know what else other than the Urso, they can offer. If someone wants to share additional treatment options that would be great. I’ve read about some alternatives, like fibrates, but it was my understanding that was if you didn’t respond to Urso. I do feel like we have to be an advocate for ourselves since PBC is pretty rare and docs just aren’t educated about it, but it's difficult when you're newly diagnosed. we just learn as we go along. Try not to worry too much and hopefully we can both get more answers and you can get your symptoms addressed appropriately. Wishing you lots of luck. I know it’s frustrating🙂
Thanks, I guess I'm worried more these days as I do have symptoms and now LFT'S elavated. But you're right. I'm already on URSO. If things keep escalating... I guess Ocaliva will be in the mix.
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Pbc and breathing problems
Stage 3 Grade 3.5
cirrhosis
So confused, would love your opinions
