Cirrhosis Diagnosis Preparation - Living with Fatty...

Living with Fatty Liver and NASH

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Cirrhosis Diagnosis Preparation

LeiL profile image

How do you prepare yourself and your family members for a bad diagnosis. I’m due for an MRE in January and I’m expecting bad news on my NASH.. Recently developed arthritis, itchy skin, devastating bone pain, burning toes, and lower right back pain.. Developed acid reflux with severe histamine reactions earlier this year .

I’ve been to every doctor available. My MRI in August showed a “healthy liver” according to the Hepatologist but I keep losing weight and of course these new symptoms that appeared out of nowhere. Husband and children are all in denial despite my level of pain. They keep basing their assessment on my ALT/AST numbers.

21 Replies

I have lived with this for almost 20 years and my family is still in denial of it. They act like there is nothing wrong with me and tell me to quit complaining I'm ok. Which most of the time I am, but I just go on living like nothing is wrong. I know that someday my liver will turn on me and I will have about a year. My husband had alcoholic liver, which NASH acts like it so I watch for the same signs he had. I've had a couple scares with my stool turning gray and the pain being bad, but all in all I have lived my life. When I'm gone maybe they will understand.

nash2 profile image
nash2Partner

Hi LeiSorry for the delay in responding. I know how hard it is in that early time. Not simple to educate yourself and various family. Many people have normal ALT/AST until quite advanced so that doesn't help. There are some probability calculators that might help. The easiest is called FIB-4. Here is a link, it uses routine blood tests and isn't diagnostic but can provide some direction.

fattyliverfoundation.org/fi...

You mentioned toe tingling. Are you also diabetic? That would be a more common symptom of high blood sugar.

There are also more advanced blood screens should you want to explore it on your own. I personally use LIVERFASt to monitor my status. Here is a link with some info about that.

fattyliverfoundation.org/li...

One of the things I like about this is that the results are very visual and can be helpful for family members. It isn't as good as the MRE you are going to get but is quite good as a blood screener.

Wayne

LeiL profile image
LeiL in reply to nash2

Thank you. No I’m not diabetic but may now become one. In ER now and attending physician highly suspects it is Cirrhosis. I took a Stool Analysis through a functional Medicine Physician that showed I had the markers for NASH, Alcoholic Cirrhosis, plus Rhuematoid Arthritis. Well NASH was always confirmed, I don’t drink alcohol but understand the markers, but I am certainly experiencing the Arthritis symptoms. It’s funny because of my son’s clients is a gastroenterologist and on Christmas Eve he was kind enough to give me his opinion and he thinks it is autoimmune.

MLB_77 profile image
MLB_77 in reply to nash2

Hello. How does do platelet count show up in blood work? I am looking at my latest results and don’t see anything about platelets. Thank you

MLB_77 profile image
MLB_77 in reply to nash2

The only platelet count I could find was from 2016. Which happens to be a much more unhealthy lifestyle than I have now. Says 1.01 is my score. What does that mean?

nash2 profile image
nash2Partner in reply to MLB_77

Platelets are involved with scar formation or fibrosis when in the liver. They are normally captured by the spleen as part of normal processing. If the blood flow through the liver is reduced by damage extra blood is sent to the spleen and platelets are reduced and often the spleen is enlarged. It is an indirect indication of increased portal vein pressure from NASH. Might that be 101 rather 1.01? Here is a link with some discussion

medicalnewstoday.com/articl...

Wayne

nash2 profile image
nash2Partner in reply to nash2

It occurred to me that you may have meant your FIB-4 was 1.01. If so that means that it is unlikely that you have NASH. You may well have NAFLD which is the name before the liver is actually developing scarring. That is a good thing. Far more manageable than NASH.

MLB_77 profile image
MLB_77 in reply to nash2

I am trying to look up what “normal” range is and not having luck. Is zero ideal? Does 1.01 show that there is actually damage? How high does it go?

nash2 profile image
nash2Partner in reply to MLB_77

If that was your result from the FIB-4 here is a discussion about how it is scored

fattyliverfoundation.org/no...

MLB_77 profile image
MLB_77 in reply to nash2

Thanks again. I will read through it and see if I can make sense of it!

LeiL profile image
LeiL in reply to nash2

My FIB-4 Score is .95. Will let you know after my MRE how it compares. The ER refused to order any scans today or really do anything useful. Pain remains, especially when I eat.

nash2 profile image
nash2Partner in reply to LeiL

That will be interesting. Remember, the FIB-4 calculates a probability, it is not diagnostic, but the MRE is about the best we have right now so you should get some answers. The betting from the FIB-4 is that you do not have cirrhosis. Hopefully that can ease your mind a bit while you wait. I've had 3 MRE's and found them to be very good and my FIB-4 agreed but everyone is different.

LeiL profile image
LeiL in reply to nash2

I think I’m one of the unlucky ones that has developed Rheumatoid Arthritis secondary to Liver Disease (Cirrhosis). I had no idea that arthritis was associated with this disease.

sophiaS1980 profile image
sophiaS1980 in reply to LeiL

Did this test show the same as your MRE?

LeiL profile image
LeiL in reply to sophiaS1980

MRE scheduled for Wednesday. I took a stool diagnosis test that showed NASH, Cirrhosis, and arthritis. I definitely have NASH and the arthritis. My IgG serum also says I now have a chronic liver disease.

sophiaS1980 profile image
sophiaS1980 in reply to nash2

I noticed on the fibrosis test if your platelets decrease your score goes up, well mine goes up and down. I have now been told not to drink water before having labs with your platelets because water can make your platelet levels lower.

LeiL profile image
LeiL in reply to sophiaS1980

Thanks for that info. Platelets have been between 250-280.

sophiaS1980 profile image
sophiaS1980 in reply to LeiL

Let us know how it goes, good luck, but I have never seen anyone with cirrhosis and platelets that high. GL

LeiL profile image
LeiL in reply to sophiaS1980

There are folks here that report normal platelet counts and normal LFTs. My ALT?AST has been around 12/14

sophiaS1980 profile image
sophiaS1980 in reply to LeiL

I have seen normal alt/ast due to this being normal due to lack of inflammation going on at the time, but platelets usually low in cirrhosis. I have never seen normal platelets in cirrhosis . I am on FB and everyone on there have low platelets when they have cirrhosis., but anything is possible.

nash2 profile image
nash2Partner in reply to sophiaS1980

Usually your instructions will be to not drink liquids before the blood draw and to have been fasting. That changes the blood volume and composition. The idea is to try to have consistent conditions from one time to the next so that comparisons can be made.

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