Where do I even start

[SomethingCreative]

I'm hoping finding this community can help me just find where to start with this situation. No matter what I do or what doctor I go to no one seems to be taking me seriously.

For some background, I was diagnosed with NAFLD earlier this year. The whole situation was frustrating in and of itself, and I had been going to the doctor for fatigue and right rib cage pain/fullness since Fall of last year with no results. I went earlier this year for a different pain that they never did figure out, but just happened to find the fatty liver in the MRI. Didn't call me, didn't tell me the stage or anything, just that I have NAFLD. No follow ups or anything else. I was frustrated with everything and have since switched doctors, but this new doctor wants me to do these blood tests that my insurance sadly doesn't cover. She did try to help and offer the tests in their clinic for $300, which is significantly less than what it would be at the hospital, but we can't do $300 at this moment in time. And I haven't gotten anything else from her so far for this. I just don't know what to do.

My symptoms seem to be progressing, for a disease that I keep reading that it's supposed to be symptomless. Yet I'm having fatigue, pain, and now swollen ankles/feet. My husband is supportive, but he doesn't know where to go anymore than I do. We have started eating healthier, but I'm worried that I have more problems than what is being addressed by doctors and I don't know what to do.

I'm so tired all the time. And I have this permanent anxiety about this looming diagnosis and I just keep getting told to lose weight, which is great and all, and I'm trying, but what am I supposed to be looking for? When do I know that something is serious that I need to see a doctor asap for? Are my ankles/feet swelling serious or not, this is new for me. What stage even am I in? How bad is it? Is there scarring, or is it just in the early stages? Am I supposed to be getting regular tests done? What do I need to do, to ensure that this is being taken care of the way it's supposed to. My husband has mentioned maybe asking for a list of foods I should/n't have, but that has gotten me nowhere as well. Is there a specific kind of doctor I should be seeing? Because of so neither of my primary care doctor's are saying anything.

I'm just lost.

[nash2 Partner]

You need to get a second opinion from a liver specialist. There may be a gastroenterologist in your area who advertises a liver subspecialty or you may be able to see a hepatologist, which is best. Primary care doctors do a terrible job with liver disease. Look for a free fibroscan screening in your area. That is the next test you should have. If there is a teaching hospital in your area see if they have a liver program. It is important to connect with someone with an actual interest in liver disease and it is unlikely to be the PCP sadly.

[SomethingCreative in reply to nash2]

I'll definitely look into those 2 things. I wasn't sure what kind of specialist I would even go for this, so that's helpful. I'll do some research on that and what's around me.

I definitely have noticed that now. At first I thought it was just the first one, but when I changed to this current PCP the lack of support didn't change at all. And I do want to take this seriously.

[lusitania84]

You're not alone. I've been dealing with the same thing for about a year... It's hard to keep your head up but I try. BTW, did they find your FLD during a standard abdominal mri or was it a more specialized mri test?

[SomethingCreative in reply to lusitania84]

It's just so frustrating, and then I have my parents thinking I just don't care because it seems like I'm not doing anything, and it stresses me out because I DO care, and I want to figure this out.

Also I realize in the post I said MRI by accident, it was a CT scan w/contrast that they found it on. I think I said MRI out of habit.

[lusitania84 in reply to SomethingCreative]

I totally understand what you're dealing with. Especially being only 24. It seems harder to deal with at a younger age. I'm not even 40 yet and that's the constant refrain in my head is why... but it is what it is. Some children have cancer. They fight it. That's what we must do... Fight it and TRY to live as healthy as possible.

[kensimmons]

Find some way to come up with the 300 dollars and get a full blood work up done.

And see a hepatologist. That is the doctor to see.

BTW - Don't hit the panic button just yet, there are many possibilities, things that it could be that are not nearly as frightening, so go get those tests done, but first see a hepatologist (because maybe he or she will say - okay, here is what I want you to ask the lab to test...and then list what he/she wants to see - start with the doctor, then do the test).

You are from the USA so check this out when you get a chance, good overview.

mayoclinic.org/tests-proced...

[Alterity]

Blood test on me don't tell anything and I'm in Stage 4 NASH. Do you have any heart problems or take statins. My liver rejects a lot of medicines line Statins and now the Ozempic. Get salt out of your life as well as sugar. Eat a lot of fresh veggies. Anything that has preservatives is bad. Harder to digest. Same with Red Meat, don't eat red meat other than once in a great while if I'm not stress. Haven't had a steak in years. Keep stress out of your life. When I was first diagnosed. I also got a second opinion especially when they told me I had 6 years to live. That was 22 years ago. I go to the University Hospital in Ohio, as they do a lot of research for liver disease and will do a transplant if I need it. I'm now 67 so they think I'll be ok. I have gone from 285 to 200 in weight and hoping one of these days to get to 160 or less, but it all takes time. We are no perfect. Everything in Moderation, yes the worst part is always being exhausted, go to bed. Liver works best at rest. I usually sleep 8.5 to 9 hours a night and if I just can't go, I go to bed. Good luck, but get a specialist and second opinion. So many doctors no nothing about NASH or Fatty liver. I have read my reports from way back in 1983 when I had my gallbladder removed it said I had a fatty liver. No one told me, So look where I am now. Living with NASH. I could of prevented that if I had known in 1983. I really want to start doing conferences on NASH and Fatty Liver disease, People need to be aware.

[DCguy2023]

Your diet and physical activity is something you can control every day and will have a big impact.

1. Drink enough water

2. Avoid unnecessary carbohydrates

3. Get enough fiber

4. Eat vegetables at every opportunity to ensure good nutrition. Even at breakfast.

5. Eat healthy fats like olive oil or Avocado oil.

6. Consume adequate amount of protein. No more and no less. Fish and eggs are best.

7. Get enough sleep and stick to a regular sleep schedule.

8. Manage your stress without drugs and alcohol. Try meditating or yoga or talking to friends and family.

9. Exercise every day. Walk everyday if you can’t do anything else that day. At least 30 minutes but an hour is better.

10. Take only medicine you absolutely need. Talk to your doctor about reviewing your medication list.

This requires a lifestyle change but it is a good change. I personally did not start to feel any better until about 4 months of walking and eating right but during that time, I did lose weight and I did regain some strength. Now at 10 months I’ve lost more weight and feel the best I have felt in years.

Good luck and take it one day at a time.

[Rosebud1027]

I want to underscore what Nash2 said about finding an academic medical center near you. They may have research programs going on that you might qualify for and instead of paying for tests they will be free. Definitely find a doctor who specializes in the liver. There is diet info on the Liver foundation website. Don’t liver cleanse. My gastroenterologist recommended the book The Glucose Goddess and following a Mediterranean diet. Stay away from any type of sweetener and processed foods. I am not diabetic but when it comes to diet I act like I am because of the relationship between the pancreas and liver. Consider how everything you put in your mouth will impact your liver. Good luck. You can do this!

[SolMate]

I was first diagnosed at a local health fair in South Texas which offered free fibroscans due to the high incidence of diabetes in our county. A free follow up was offered through a doctor who had a program available through a Pharma research project. None of this cost anything! Amazing! I was in early stage NASH and have reversed damage after totally changing my eating: Fresh, fresh & more fresh veggies & fruits to start. That took off my excess weight. Continuing, I’ve added fish, lean chicken, & eggs. Absolutely NO processed foods. (If it’s in a box or can, verify 5 or less safe ingredients, no added salt, sugar or preservatives.) This is not a convenient diet! Plan to wash & prep fresh foods when you get them. Eat nothing white. It’s too processed. Go with whole grains, nothing bleached. Only olive or avacado oil, but remember that heating to a frying temp ruins the healthy molecular structure. Air frying is the only way to crisp your foods. I carry balsamic vinegar for salads when I eat out. If a restaurant can’t prepare food without salt or fat, just order a fresh veggie salad & dress it with your own dressing. Read Dr Joe Galati’s book, “Eating Yourself Sick.” Check out his website for more good info. You can do this if I did! My weight has been a struggle most of my life. From 198 I’m now, 122lbs & my liver numbers are in good range. Medicare covers an annual fibroscan & I have all my primary care lab work sent to my liver doctor when it’s complete so I don’t have to duplicate tests. My pcp is wonderful about ordering the tests my liver doctor wants, so it’s all in one blood test. Good luck & don’t get frustrated. Your liver wants to heal & luckily, it can in most cases. Don’t wait for a doctor to tell you to change your diet. Do it now, as if your life depended on it. It DOES!