Anyone that could help me understand ... - Living with Fatty...

Living with Fatty Liver and NASH

5,247 members1,175 posts

Anyone that could help me understand this?

Gingerjuju
Gingerjuju

Hi everyone, I'm new to this forum and wanted to ask some questions since I can't get into a specialist for another month and a half. Ok so 5 months ago i noticed I had lines going across my fingernails so I thought maybe it was a vitamin deficiency or something so I looked it up on good ole google, anyways I read alot about nails and skin and realized I had terry's nails, spider angiomas and red palms. I freaked out! so I made an appointment with a doctor. She looked me over, took some blood work and called me the next day and said liver function tests were good so don't worry it 100% wasn't due to me liver. I was still concerned so I went back to her a month later and she told me again it wasn't my liver causing the skin and nail problems but she took some hormone tests. The next day she called and said my acth levels was a little low and to go see a endrocrinologist. I ended up there and showed her my skin and she said that could be liver disease. She took blood for a fibrosure test and that came back as fatty liver no fibrosis. I was so happy to hear that! But she sent me to take a fibroscan test a couple weeks later and she called me last Friday saying the fibroscan test said stage 3 fibrosis! I am so scared now..I can't eat or sleep and all I think about is I'm going to die. I have read that spider angiomas, red palms and terry's nails are end stage cirrhosis can anyone tell me anything about this? Thank you in advance.

11 Replies
oldestnewest

I’m not at all an expert but I have read from others hear that the fibroscan showed a high kpa but sometimes that was due to inflammation instead of actual fibrosis. It’s good that the blood test came back normal and they usually combine all the tests to make a more accurate diagnosis since no test is really going to specifically tell you what condition you have. I would definitely make sure you are seeing a gastroenterologist or Hepatologist to help you with that diagnosis.

Thank you for the reply Amethyst91, Yes I have an appointment with a gastro in November. I am just so scared..The internet saying that all my skin problems are end stage cirrhosis is really what is scaring me the most.

I’ve done the same thing and I get scared a lot about my liver condition and so far it’s only been seen to be fatty and enlarged. I really hope you just have some inflammation going on and nothing too bad. From things I’ve read the liver is very complicated and diagnosing it takes a lot of tests and time. If you do have fibrosis there is some hope I’ve read that it can be reversed or if not it can be stopped from getting worse. It’s all very hard to do especially when your waiting for answers from a dr but try to stay positive and start with the small things you can do to keep your liver in good health. I’ve been reading things consistently for 6 months and trying to stick to a clean diet and some exercise to keep it from getting worse.

I e also read that if the person who did your scan was too close to your ribs then that will give a false positive for fibrosis too. The girl who did mine had to wait for me to inhale because my rib spacing is so small and if she did it when I exhaled she might have read my ribs instead of my liver. I trust that she knew what she was doing since she worked at a major liver hospital but maybe someone in an office might not be as good at doing the scan.

Yes I have read there are somethings that can cause an overestimation but I am really scared mine was underestimated. I am beside myself with worry.

Yes I have been doing the same thing, No more sugar and junk in my diet, this has scared me straight. I have been making myself eat because I have read that starving is really hard on the liver. I have lost 39 pounds since all of this started. I need to loss this weight but not this way. :( Thank you so much for the advice.

My stress caused me to do the same. I’ll admit I gained a little weight last year but still not bad and I’m all my stress anxiety I lost almost 20lbs and if I lose anymore I’ll be skeleton at this point. I really hope getting to see the gastro will help you get a better diagnosis for the better and help you feel better. I don’t think it’s underestimated as that’s harder to do on a fibroscan than overestimating. I don’t think I’ve read of anyone having a low score and having it repeated with a bad high score, but I have read a lot of ppl having a high score then having it repeated with a much better score.

I hope that's the case, fibrosis stage 3 is bad enough. I have a lot more weight to lose I just want to do it the right way so not to hurt my liver anymore. Thank you! :)

I found out last month i have stage 3 as well and went through the scared phase that you are going through now. Unlike S4, the progression for 3 can be stopped and sometimes reversed. If you stop alcohol, unnecessary meds and any other 'injuries' to your liver, AND lose 10% of your body weight, you can get rid of 90-95 percent of the fat around your liver. The scarring probably will not go away, but you will stop the progression. What works the best is a move to a Mediterranean diet - no meat, a little fish. If you can handle a plant based diet, it works even better for the liver, but it takes a while to get there. The most important part now for you is to work on your mind. For me, the fear was hard to conquer. Researching the internet made it worse. There's an excellent book called 'Medical Medium: liver rescue' that helped. Work on your weight while you're waiting to see the doctor. It's the most important thing you can do.

Thank you grapewizard for your reply and advice. It makes me feel better to know i'm not alone. I will go look up that book and read it. I have been watching what I eat and losing weight like crazy. (which is scaring me a little). I have read that people with liver disease need a lot of protein and then I have read plant based is best, it's all so confusing. I did order a Mediterranean cookbook so i'm going to start there. May I ask if you have any symptoms of liver disease and how you were diagnosed? Did you have a liver biopsy? Thank you!

Your protein should come from plants (legumes, beans, etc.) not animals. It will take some getting used to. Not everyone has symptoms. Some people have pain, some don't. Some people have stool changes, some don't. Don't focus on trying to match your symptoms to how far your condition has progressed. You will just drive yourself crazy. And stop trying to lose all the weight immediately. That's actually tough on your liver. I was losing a pound a day because of fear, and was told to slow down. 1-2 pounds per week is plenty. A good estimate is to 'try' to lose the 10% of your body weight in 3 months. That's just a rough guideline. Try to relax. And no, i didn't have a biopsy. They won't do that unless absolutely necessary. It's invasive.

You may also like...