Got my nerve up to look at scan results - Living with Fatty...

Living with Fatty Liver and NASH

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Got my nerve up to look at scan results

ThyroidDeb profile image
18 Replies

I don't understand, of course most of this such as; interquartile range to median for all measurement was 14% but here are results, not what I wanted to see.

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ThyroidDeb profile image
ThyroidDeb
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18 Replies
MINTVCX profile image
MINTVCX

IRQ/median (14% in your case) shows how every sample was different from median. It shows the quality of the result. Generally it should be below 30% so in your case it seems is pretty reliable.

Please check/ask this of course (and other aspects of your result) with your hepatologist. Good luck and stay positive.

nash2 profile image
nash2Partner

Hi Deb

Not the best but could certainly be worse. My kPa was 21.5 at diagnosis, yours is 19.5 which indicates the F4 stated in the results. The interquartile range is a measure of how well the technician did taking the test. The 14 for yours is fine. Most docs say anything under 20 is good. The CAP score says your liver is quite fat and is likely driving the increased liver damage. It is important to get this under control and you may need help from more than one specialist.

Best wishes Wayne

ThyroidDeb profile image
ThyroidDeb in reply to nash2

Thanks Wayne. I am trying hard to eat right and ride my stationary 5 to 10 miles every day but one and lift weights. Lost 13 pounds so far...I have a couple questions, I found this scale and wondered if it's anything to hang onto. Looks like I'm on the cusp.F2 (8-10.9 kpa): moderate or significant fibrosis

F3 (11-19.5 kpa): severe fibrosis

F4 (>19.5 kpa) cirrhosis

The fibro blood test indicated F3 but same for the fat moderate to severe.

Finally, reading from several different schools explaining the fibroscan it said that fibro stages could look worse due to many different reasons but only two related to me liver inflammation and BMI >30. That with these problems it may make things look worse. I have also read that with cirrhosis there's not much chance of reversing but in fibrosis stages you might be able to reverse a stage, that's why being on the cusp gives me hope..maybe falsely. Thanks again

nash2 profile image
nash2Partner

Various authors have come up with slightly different scales depending on their particular approach and what they think caused the problem, but all that really matters is that over time you are seeing a reduction. It is a win to just not progress so good for you. Maintaining a liver friendly diet always is key and exercise makes it all work better. It is a slow process but it sounds like you are on a good track. It took years to get in trouble so taking time to make progress makes sense and it isn't a false hope. The liver does want to improve if we just let it.

ThyroidDeb profile image
ThyroidDeb in reply to nash2

Thank you, you are my inspiration!!

AllHis profile image
AllHis

Hang in there, Deb. Mine was about the same reading.The study doc said I was NASH 3or 4. AND HERE’S WHAT I’M HANGING ON TO: “ My guess is Nash 3 with the liver biopsy. The fiber scan tends to read high.”

Waiting for my liver biopsy now. I was told it could take 4 to 8 weeks. I’ve started the diet, of course, but knowing if it’s autoimmune or Nash will surely guide me in a more direct path.

Keep up the good work! Hugs.

Oh, and try not to lose a lot of weight fast. Liver doesn’t like that either…sigh.

Learned that 20 years ago with my gall bladder.

Hugs!

ThyroidDeb profile image
ThyroidDeb in reply to AllHis

4 to 8 WEEKS!!! Why so long, seems like it's pretty important to be done asap...we are just numbers 🤔 I was a little worried I might be losing to fast but primary said good for you..so I guess so far ok. I am trying to eat a little more but as time goes on. At first I was pretty stressed so I ate less and I can't seem to learn my spices well enough to make food taste good lol I have found garlic and nutmeg don't like me! You keep up the good work too, we will do this!! Thanks, I enjoy chatting with you.

AllHis profile image
AllHis in reply to ThyroidDeb

I’m in a liver study. They send it out to both CA and a foreign country…Just learned the 4-8 weeks the day after the biopsy.

I’m happy the biopsy is over. It’s a positive step for me. I’ve been hanging around here with Wayne for 4 years second guessing myself. Seems it can only be one or the other. Well, maybe BOTH! My luck… autoimmune or NASH progression. Soooo grateful for Wayne and the diet guidance. Probably why I’m still here.😊

ThyroidDeb profile image
ThyroidDeb in reply to AllHis

I agree, I'm so glad I found this, thank you Wayne! I have no idea what they will find with my biopsy, I haven't seen the gastro yet for even the blood test results. How was the process, did you have any problems? How long did it take? What is this study trying to determine?

AllHis profile image
AllHis in reply to ThyroidDeb

The liver biopsy is part of my study & required before study medication. Diagnosis must be NASH and not Autoimmune liver.The actual biopsy process doesn’t take long at all, but you’re required to lay still following the biopsy. The particular hospital I was at was two hours. I have heard it said here up to four hours. But I was admitted two hours prior, for a total of 4-5 hours with check in.

The only pain I had was the numbing medication, and I honestly did not feel the actual biopsy, but heard to click. There was some weird shoulder pain, like a tight muscle cramp which lasted about an hour when I was laying on my side following biopsy. (All normal.)

With that being said, I’m not going to lie to you. I had a long hard week trying to “recover.” A whole bunch of weird, stabbing pains that just randomly played with my mind. And I found it very hard to get comfortable in bed. It was almost as if my ribs were inflamed and didn’t want to be bended or twisted. But here I am one week later, with no real complaints at all. 😊

Alterity profile image
Alterity

Hi Deb, When I first was diagnosed, my scans were close to 25 and the last one taken was a 17. I have lost 70 pounds but have a long way to go. I too am in a study to find a cure and I'm supposed to be on the real pill now. Still pain in my side and now I'm have numerous UTI's not sure if that has anything to do with NASH, but it sure does shut down my body for a few days. Just watch your diet and listen to your body and rest when needed and you will be fine. I've lasted 22 years since my diagnose and they said I had the worst liver they have ever seen and gave me 6 years. Still kicking and hope to make it to 80. I'm 65 now. Good luck.

ThyroidDeb profile image
ThyroidDeb in reply to Alterity

Hi, that's wonderful, 20 years. I am 69 hope that's my future to. Thank you for being in the trial. Must be the meds you are taking have no side affects unless UTI is one. I hate those, do they give you antibiotics? I hope I can bring the numbers down, my liver is so fatty. I hope it goes away faster than my belly fat is...I'm still in shock somewhat of it all. Just never though my liver, nothing like this has happened in my family. I only know of two people who have liver disease both caused by alcohol but not sure of their stories. If it weren't for here, I would feel very alone. I thank everyone for being here and I want to pay it back!

ThyroidDeb profile image
ThyroidDeb in reply to Alterity

Hi again, meant to ask about your pain. Is that constant is it actual pain? I went to my primary because of pain although it's not really pain, just feels like twinges and not constant. She pushed around nothing hurt then so she thought maybe skeletal and ordered another ultrasound but said to wait until after I see gastro Thursday to see his plan. Does it hurt you when you manipulate that area? Doesn't keep me awake or anything. Hope yours goes away soon Thanks again.

Alterity profile image
Alterity

The stabbing is just once in a while. Sometimes you look back as what you ate. I find going to bed and resting when you have pain or are exhausted because the liver functions better at rest and not stressed. They did give me an antibiotic for the UTI, but sending me to a Urologist. I am going to e-mail my Liver Specialist to see if there is any thing that the liver might be causing this. The last time is was right after my biopsy and the blamed an infection from it. This time they say it is e-coli, not sure where that came from. My first though was things are processing right and holding in the liver. I'm probably way off on that, but my weight loss has stopped and I was doing to good, so has to be a reason for everything. I'm feeling much better today, but could of stayed in bed, but haven't been to work for 4 days because of snow storms, so figured I needed to go to work. take care.

AllHis profile image
AllHis

Deb & Alterity & Ladies,

I have had many episodes where I thought it was UTIs and urinalysis proved otherwise. It may be autoimmune related… Sjogren’s is so more than SICCA, but SICCA (Dry eyes and dry mouth) can be fatty liver disease…

Sjogren’s has so many symptoms and so many other diseases that it likes to play with. Doctors call them comorbidities.

I saw a wonderful specialist for my “UTIs”- Urogynecologist. Vaginal estradiol was prescribed and it has worked wonderfully! It broke the cycle! Interstitial cystitis & vaginal dryness- gone! And the best part! It’s a tablet inserted vaginally and bypasses the liver. 😀

ThyroidDeb profile image
ThyroidDeb in reply to AllHis

Thanks for that info. I have Sjogrens also, that's why some spices burn my mouth I think. I diagnosed myself years ago with burning mouth syndrome!! I have a lot of dryness all over inside/out and have for years now. Several years ago I was having UTI I thought but test were always negative, never did figure it out but has stopped. My skin recently has gotten a lot better too, why no idea. Thought maybe thyroid med affects. Been about 2 years since I started those. I will be looking into that..thanks, love this place..😁

ThyroidDeb profile image
ThyroidDeb in reply to AllHis

Hi, found this....The association of fat accumulation with estradiol in the liver has been reported in many studies [120,121,122,123,124]. Epidemiological studies presenting an elevated risk for NAFLD in postmenopausal women compared with premenopausal women suggest that estradiol protects the liver from fat accumulation [29]

Interesting!!🤷‍♀️

Realy profile image
Realy

Was that a fibroscan?

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