I’m so discouraged : Just returned from... - Living with Fatty...

Living with Fatty Liver and NASH

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I’m so discouraged

LeiL profile image
LeiL
11 Replies

Just returned from Fibroscan appointment and my liver stiffening is headed in the wrong direction. Over the last year I’ve lost 60 lbs and my liver enzymes have all normalized during the last 12 months. My BMI is now 21. However, I’ve had RUQ pain that the Drs told me couldn’t be my liver, and my LFT are great. I also have had an increase in cholesterol and my TSH increased despite my weight loss. I had to beg for this Fibroscan because they said they knew it would be better. Liver Stiffness increased from 6.6 to 7.0. My CAP score decreased from 257 to 231.

Has anyone else had a reversal of fortunes?

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LeiL profile image
LeiL
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11 Replies
nash2 profile image
nash2Partner

Hi Lei

Well, how can I reassure you? Those are very good results from the perspective of a fatty liver patient. Your stiffness test is likely just normal variation between tests. The tiny difference between those two tests could be just because the nurse held the probe a little differently. A reading of 7.0 is quite low. There are thousands of us who would cheer to have that score so take a deep breath. Your weight loss is just great and you can see that your CAP score reflects that and is very good. You have done a great job, congratulations. That doesn't prove that you don't have some other kind of liver issue but you seem to have fatty liver under good control. Only your doctors can tell you about other things that might be causing your RUQ pain. That pain is something that challenges a lot of people. There can be a lot of causes for that discomfort and it can be very difficult to determine the reason but it sounds like your docs are correct when they tell you that it probably isn't NAFLD/NASH. Not sure if that is of any help, but it is important to work with docs you have confidence in.

LeiL profile image
LeiL in reply to nash2

Thanks so much for the reply. I should add that in 2017 my score was 4.3.

But thank you for the encouragement, I need all I can get because I’m quite depressed. All the doctors had assured me that my stiffness level would decrease with the fat loss, just wondering why it didn’t. I really was expecting great results after a year of a strait and narrow exercise and dietary program.

I don’t understand my IQR number - 45. It was 12 last year.

nash2 profile image
nash2Partner in reply to LeiL

That is a measure of how well the technician performed the test or how consistent the readings were. The 12 is a good result, the 45 suggests that the testing was more variable and probably accounts for while the value was higher. Some docs think that an IQR should be less than 20 to 25 but while you might question the values a bit and a more accurate test might well have been lower. Given the change over time it is fair to continue to look for an explanation but it seems unlikely that your answer is NASH but I'd suggest continuing with your lifestyle changes.

LeiL profile image
LeiL in reply to nash2

Yes, I was diagnosed with NASH through biopsy in 2014. That’s why I concerned with the continued progression.

nash2 profile image
nash2Partner in reply to LeiL

Your biopsy info does put a different light on things so it is fair to wonder about the testing. I still think your docs should be exploring other causes for your problems as there are a variety of things that can cause liver damage. NASH is just the most common. I had a problem in that my first biopsy was not interpreted properly and I was treated for the wrong problem for a couple of years. I eventually had the slides read by a different pathologist which helped us understand what was really happening. I also had to change doctors to get that to happen. Can't say if that is something for you to consider, just my journey.

LeiL profile image
LeiL in reply to nash2

Oh my only biopsy was not without issue. They had to backpedal on the fibrosis assessment because they sampled my liver cysts. I’m seeing another Hepatologist at a world reknown medical facility by videoconference on Monday. Should be interesting her assessment of the Fibroscan results. They like to do their own testing anyway

LeiL profile image
LeiL in reply to nash2

I also had a Fibrosure test done on 29 March. That test graded as 35 for steatosis with the Upper end of normal range being 30. Using that formula I don’t have fibrosis.

I interested in hearing from others that had both test performed.

Arian2 profile image
Arian2

It could be the cholesterol making your liver test bad. Must lower it .All should be in under control.like lipid profile ,sugar blood levels ,try

glyceride levels . If you lost weight it's very good but maybe you are eating something not good in your diet .check on that .HIgher cholesterol can cause trouble to liver too .

Kulwinder59 profile image
Kulwinder59

It is normal if hepatitis b or c is not positive

LeiL profile image
LeiL in reply to Kulwinder59

I don’t understand? How can no improvement be normal? As of February I was negative for Hep B and C.

Kulwinder59 profile image
Kulwinder59

No no

there is no need to worry

You are ok ur test are normal as u have wrote

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