Shocking Diagnosis found by accident - British Liver Trust

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Shocking Diagnosis found by accident

FlippinOut profile image
19 Replies

In 2013 was having a lot of upper left sided abdomen pain, diarrhea, fatigue. Thought it was pancreas related. Went through a bunch of tests, scopes etc and was told I had a fatty liver. Two years later had a CT for a kidney stone. Fatty liver still seen. No one said anything about how serious this was or what I should do about it. In 2018 developed pre diabetes and went on metfomin. Was also on a statin and bp medication. My blood pressure, cholesterol and blood sugar have all been controlled by the medication. A few months ago I started having a lot of symptoms again. Had a CT scan and it showed a nodular liver surface. Had a FibroTest result at .59 which is F3 fibrosis. Dr. says it’s cirrhosis! I’m SHOCKED.

Fatty liver is no joke. I only drink socially (very occasionally) so my diet is to blame. I’m probably 30 lbs overweight. Dr says to lose weight, eat healthy and keep cholesterol and blood sugar levels down. But isn’t it too late for that? Im still overweight but the other stuff is under control.

I’m so scared I don’t know what to do next. Is losing weight going to help if I already have cirrhosis? Most days I can’t get off the sofa. How do you deal with the fatigue?

My doctor doesn’t seem too concerned but wants to do an EGD to look for esophageal varices. Thanks for listening and for any advice.

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FlippinOut
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19 Replies
carmik profile image
carmik

Sorry to hear this. You need to get tested for "Alpha 1 Antitrypsin Deficiency" "When my husband was diagnosed with liver problems and didn't drink at all we pushed to find what had caused it. It was Alpha 1 which is inherited from parents. Both parents were found to have 1 of their 2 genes faulty and Mike had inherited the bad one from each. They were just carriers. Good Luck

FlippinOut profile image
FlippinOut in reply tocarmik

Thank you for your reply. I had all the liver blood tests done and the autoimmune stuff and the hepatitis stuff was ruled out. Mine is definitely from NAFLD/metabolic syndrome.

RugbyMama profile image
RugbyMama

Livers are magical things. They can regenerate themselves and continue to function even when damaged, so its not too late for anything.

If your blood sugar is high have you been checked over for type 2 diabetes? This can cause fatigue. We deal with my husbands fatigue by ensuring the right balance between rest and gentle exercise, naps on the bad days, adjusted his work schedule so he starts alightly later and finishes slightly later. We plan carefully - we dont try and do lots of things in one day. Regular meals and balancing caffeine intake has helped too.

FlippinOut profile image
FlippinOut in reply toRugbyMama

Thank you. I do have pre diabetes but have it under control (A1C is 5.6) and blood pressure and cholesterol are under control with medication. That’s why I’m so shocked. I thought I was doing what I needed to do to prevent this from happening. Apparently not! Sounds like your hubby has a handle on it. Hope he continues to do well.

isi123 profile image
isi123 in reply toFlippinOut

During these years that you have taken statins, have you had your liver profile values ​​monitored?

FlippinOut profile image
FlippinOut in reply toisi123

Yes, bloodwork every 6 months for years. My LFTs were either normal or just mildly elevated. Blood tests last month showed AST 18, ALT 24, ALP 48, BILI .5, GGT 44, ALB 4.7, Platelets 190,000. All normal but CT scan detected cirrhosis.

isi123 profile image
isi123 in reply toFlippinOut

It is surprising that with follow-up every 6 months and liver parameters that I would define as normal, you have been diagnosed with cirrhosis.

FlippinOut profile image
FlippinOut in reply toisi123

I’m still in shock and can’t understand what happened.

VeeWat profile image
VeeWat in reply toFlippinOut

Did you ever get an MRE?

taar profile image
taar

It isn't "all over" for you. And some people get these liver issues without over indulging food wise. And some people who drink heavily seem to sail through... Don't give up, hopefully you will learn how best to manage your symptoms and have a happy and productive life. Best wishes to you.

FlippinOut profile image
FlippinOut in reply totaar

Thank you. It’s so hard to go from feeling like a healthy 72 year old a few months ago to feeling like I can’t get off the sofa now. This just hit me out of nowhere. I knew I had fatty liver but I thought it was under control. I never knew this could happen.

Readlots profile image
Readlots

Hi Flip, the fatigue is a pain. Have you heard of spoons theory? It’s all about measuring out your energy for different activities. So you might have 5 spoons of energy per day. Going for a day out is definitely going to use all five spoonfuls and possibly more do you might be paying back the next day. Getting up and dressed might use a spoon. Doing some gardening might take three. It’s different for everyone and you have to decide what you want to use your energy doing. What makes your life richer. I’d rather spend my spoons in the garden than in a supermarket so I do online shopping. You do get used to pacing yourself.

FlippinOut profile image
FlippinOut in reply toReadlots

This is a great way to look at it. Thank you! I will try to be more conscious of where I’m spending my spoons! I know some days I don’t have enough spoons to do anything.

Whiteclouds profile image
Whiteclouds

sorry to hear that if tired eg fatigue do you take B12 this supports fatigue issue and may help you . Hope you get well soon.

FlippinOut profile image
FlippinOut in reply toWhiteclouds

I used to take B12 but then my bloodwork showed it was back to normal so I stopped. I’ll have to get tested and get back on it.

AyrshireK profile image
AyrshireK

It might seem contradictory but exercise is actually a good way of countering fatigue. My hubbies main cirrhosis symptom is fatigue but he feels worse on days he does little and way better (physically & mentally) if he's managed a walk or cycle outdoors - we did 24 miles on our ebikes yesterday.

Katie

FlippinOut profile image
FlippinOut in reply toAyrshireK

I do agree with you. I definitely feel worse when I sit around doing nothing and better when I get moving. My problem seems to be that I feel really tired earlier in the day and then get a surge of energy in the afternoon and evening. I’m trying to walk after 7:00 pm when it cools down.

Your doctor "doesn't seem too concerned"? Then he/she is an idiot. Your body is your concern. The best approach is to take the tests seriously. Assume that you either have advanced fibrosis (F3) or cirrhosis, get a game plan together and march on.

The game plan is to help your liver every single day. First is to know the cause of the liver damage. With fatty liver, you need to try to get to a healthy body weight, eat plenty of green and cruciferous vegetables, minimize your simple /refined carbs, get adequate omega -3 (some people swear by salmon), drink at least 3 cups of coffee a day, drink 6 to 8 glasses of water a day, and walk, walk, walk, walk, walk.

Get plenty of good, restful sleep. You'll get better over time. The liver can actually heal itself if you stop injuring it. Best of luck! 👍

FlippinOut profile image
FlippinOut in reply toOnesmallstep1969

Thank you for your advice. I didn’t really think my diet was that bad before but I have now started a really clean eating routine made up of very low fat, veggies, fruit and nuts and legumes for protein. I love salmon so I eat it often. I’ve cut out all white flour, sugar and anything prepackaged. Fresh food only. I pray it’s not too late to make a difference but I fear my liver is in worse shape than doctor says because I feel so weak and tired all the time. I think you’re right, I need a new doctor.

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