Well, Got My Ultrasound Results On Friday...

[poppetkazutaka]

So yeah. Though I'm not an alcoholic (unless you count the two-three weeks I had one wine cooler an evening a few months ago) and I'm only 150lbs (I just lost about 15 lbs in two weeks) I have a fatty liver. And I saw the line. It was huge.

I have a liver panel blood test scheduled for tomorrow and a follow up with the gastro next week.

Honestly, I'm really, REALLY leaning into schleroderma. There's aparently one that you can have that shows no derm signs, just systemic ones. My grandmother had schleroderma and colon cancer, and that's what killed her a few years back. I mean, I lost my gallbladder at the end of last year and had that bad row of sinus infections. Now I'm about to lose my liver (maybe) for no real reason? Because it wasn't fatty six months ago when they did the abdominal ultrasound in December.

What the heck is happening? I was fine, if not just excessively tired and weak. I could deal with that. Then my heart started having problems in September of 2008. Then once we got all that tested and I was dysautonomic, I thought I could handle it. Then I got sicker and sicker and now I really do think I'm on the road to the end of the line.

I'm not afraid, just really pissed off. I'm not ready to die yet. I want someone to find out what's wrong with me, and I want the doctors to stop jerking me around. I want them to listen to me when I say, "Something is WRONG."

I'm autonomic. Autoimmune. I have possible liver failure. I lost my gallbladder. I have pain in my right and left side. My kidneys hurt. I'm dropping sweet urine but I'm not diabetic, my body just "acts that way" as the doctor puts it.

I'm so confused. I'm shaking and I'm sick and I really think death would be easier but I don't want to give up.

[lieze]

Yes try not to give up.

Do you need to change anything in your diet?

Did they mention any type of treatment for this?

You have seemed so healthy here that I would focus on that if you can.

I don't blame you for being upset.

All of this is very confusing.

It's like how could I be in such perfect health and then boom I seem to be falling apart all of a sudden.

We're all in this together.

Reach out and grab a hold of us because none of us really know either what's up or what the future holds.

One day at a time and make them good ones.

I just cried to my husband the other night and told him I wasn't ready for my life to end this way.

I want to be able to watch my kids grow up.

Every event that passes it's like I mark it off my calendar and say well I was here for that.

With a thank God behind it.

I hope that you get the answers that you are looking for.

Big hugs.

[lieze]

I found this online it may help.

http://diet.lovetoknow.com/wiki/Diet_for_Fatty_Liver

[issie]

Not only can insulin resistance cause fatty liver, but so can hormones. If you're on any type of birth control pills or replacements it can cause fatty liver. A good portion of the time, insulin resistance or metabolic syndrome are factors.

[poppetkazutaka]

See, that's the funny thing. I don't eat that much. My friends remark about how I eat like a bird. Even when I started to eat more (because I began to gain weight last year when I went into starvation mode) I still get comments that I don't eat that much. Even now I eat very little compared to other people.

For breakfast I might eat the most of my calories. I'll be honest. I'm the worst at stopping to get a bacon egg and cheese biscuit or two a little too often. But that's because a lot of other things I just...couldn't eat anymore. I can't eat sugar. Pure sugar makes me sick. I can't eat lots of chocolate. I can only manage maybe one donut. Breakfast cereal gives me a little bit of heartburn because of the milk. Especially now, even though it's skim. I'm milk fat intolerant, so I stay from milk a lot.

But now I eat maybe a banana. Maybe some yogurt if I don't feel like chewing. Morning is the worst for my water diaherra symptoms. It's like all the food from yesterday coming out.

Lunch used to be a snack of something if I ate a good breakfast. Maybe some nibbles of chips. If I didn't eat breakfast or if I snacked at breakfast, I had something like a salad if I would walk by Wal-Mart. A salad and pizza if I went to the mall or maybe Chinese food (I love Borboun chicken and rice). Because I had gotten to the mentality that I was sick and I deserved to enjoy each day, so I wanted to eat what I wanted. Sometimes I just had a wheat bread sandwich with ham and cheese or peanut butter or something fun. I put random things on it like carrots or something.

Now I eat some apples or some carrots or maybe a peanut butter sandwich on wheat. Sometimes yogurt if I have it or have the energy to go to Wal-Mart.

Dinner is whatever mom's got at the house or what I can get myself to eat. By this time of day I'm not too hungry. I haven't been eating this for a while now.

But now I eat what I can. Bits and pieces of it. My mom's understanding and has cut my portions down. Or I eat BRAT things. Toast and Bananas. Or some snack vegetables. Snack apples. Things like that. Sometimes I try to nibble sweets just because I want a little sugar.

I would say I went from not eating, to eating, to now not eating again. But over all my diet isn't that bad. Sure I could use more vegetables, but I eat 'fat free' and 'low fat' things. I don't eat red meat. I eat chicken when I do eat meat, but I haven't been able to eat a lot of that before I feel like vomitting.

I just don't know what to do. I'm starving, but if I eat, it makes me sick and in pain, like a lump going through me. It's just like the gallbladder all over again.

[poppetkazutaka]

Not only can insulin resistance cause fatty liver, but so can hormones. If you're on any type of birth control pills or replacements it can cause fatty liver. A good portion of the time, insulin resistance or metabolic syndrome are factors.

I can't stop my birth control pills. They'll have to take my uterus out. Because I'll be ****** if I go back to the pain I was in before. Besides. It would have to be something that happened in the last six months and I've been on these for over three years.

[issie]

I know, it horrible. I've recently developed fatty liver too. I was on replacement because of having already had a hysterectomy for endometrosis. I understand the pain thing. I'd had 7 other surgeries for this before the hysterectomy. They told me it was relaed to the replacement. Too much estrogen. I know with endometrosis, they say, that it is an imbalance in the hormones - estrogen vs progestrone. I wonder if just plain progesterone would help the pain you have rather than estrogens? I'm just doing a really strict diet right now and switched over to RED Clover for my replacement, instead of an RX. This was one of the suggestions from the Mayo doctor. It has really helped the hot flash and sweats issues. Oh well, trial and error. One thing I do know, tumors in different areas supposdly go along with POTS. Why, I don't know. I also have a tumor on my kidney, thyroid and brain. So, explain that one.

[nmorgen]

Sorry to hear about your problems.

I'm just curious if you have tried cutting out gluten? When I was eating gluten I would get really sick. Also, last year I had a problem with my liver. They thought I had hepatitis. Get a juicing machine and drink beet juice. It really helps the liver. I know it helped me. If you are eating all low-fat non-fat I hope you are taking a supplement like flax seed or fish oil. Your body really does need the fat.

I hope the doctors can find out what is going on or can at least help you.

[juliegee]

Sorry too, Poppet. I read as much as I can about your symptoms and scleroderma....not a great fit, which is GOOD news . I have lots of scleroderma symptoms too & have been told I have it oodles of times, even by a vascular surgeon. ( I don't, just a lot of weird unrelated stuff...)

I KNOW you are sick. I just don't think its scleroderma. There have been VERY few (like countable on one hand) cases of familial scleroderma. So, the fact that your Grandmother had it doesn't automatically mean that you will. It seems that all forms of scleroderma have some skin involvement, esp. the hands; GI issues, lung, heart, kidney, and joints. Sinus, gallbladder, and liver dysfunction don't necessarily point in that direction.

I am so sorry you are going through so much. I PRAY that your doctors get to the bottom of things and get some help for you ASAP.

Gentle Hugs & Many Prayers-

Julie

[poppetkazutaka]

Sorry too, Poppet. I read as much as I can about your symptoms and scleroderma....not a great fit, which is GOOD news . I have lots of scleroderma symptoms too & have been told I have it oodles of times, even by a vascular surgeon. ( I don't, just a lot of weird unrelated stuff...)

I KNOW you are sick. I just don't think its scleroderma. There have been VERY few (like countable on one hand) cases of familial scleroderma. So, the fact that your Grandmother had it doesn't automatically mean that you will. It seems that all forms of scleroderma have some skin involvement, esp. the hands; GI issues, lung, heart, kidney, and joints. Sinus, gallbladder, and liver dysfunction don't necessarily point in that direction.

I am so sorry you are going through so much. I PRAY that your doctors get to the bottom of things and get some help for you ASAP.

Gentle Hugs & Many Prayers-

Julie

The reason I think it is, is because I have systemic scarring. They found scarring inside my sinuses, over my gallbladder, which they explained as autoimmune. Everytime I ate something my body needed bile to digest, I would attack my gallbladder. The sinuses is from chronic infections they finally got cleared out. Now I'm scarring over my liver. For no reason other than just because my body wants to.

They really need to supress my immune system but they like this 'wait and see' attitude too much.

[Birdlady]

The only thing I know that can cause non-alcoholic fatty liver is high fructose corn syrup.

Here's a study that talks about it. HFCS is literally in everything if you aren't trying to avoid it.

http://www.ncbi.nlm.nih.gov/pubmed/18395287

It's also be been linked to liver scarring as well.

http://www.sciencedaily.com/releases/2010/...00322204628.htm

[spaceorca]

My son has had fatty liver for at least the last 5 years. He's just 22 now, has eaten almost no fat during the last 10 years (due to Crohn's disease), and had his first tastes of alcohol just during the last few months. (I know some parents wouldn't know what their teens drink, but he's been too sick to go out of the house much of this time so I know!) The fatty liver hasn't affected his liver functions (yet, anyway) and the doctors can't explain it. They agree that it's very weird, but it seems to be linked to some type of systemic disease that (we all assume) caused the Crohn's, POTS, other autonomic problems, and various endocrine problems. It's very weird--if anyone else discovers something about fatty liver, I'd love to know!

[juliegee]

"The reason I think it is, is because I have systemic scarring. They found scarring inside my sinuses, over my gallbladder, which they explained as autoimmune. Everytime I ate something my body needed bile to digest, I would attack my gallbladder. The sinuses is from chronic infections they finally got cleared out. Now I'm scarring over my liver. For no reason other than just because my body wants to.

They really need to supress my immune system but they like this 'wait and see' attitude too much."

__________

I get it. I have similar stuff- sans fatty liver. I attribute it to a connective tissue dysfunction.....not autoimmune. Are your ANA's high on testing? I certainly hope you are wrong about the scleroderma.

Regardless, you have real issues going on that doctors may not be able to connect or explain. Do your own research so that you can live as healthfully as possible by making good decisions.

Still sending lots of love and prayers-

Julie

[Guest tearose]

I too have NAFL and rarely drink!! If I ever drink about 3oz of anything is enough!!

I also had my gallbladder removed

Don't be surprised if they tell you that you have cysts in your liver too. I have these. They can't understand why and offered no other explanation than to say my body processes fat in an abnormal way.

I have GERD and "periodic bouts of gastroparesis". I treat the nausea with Pepsid or Gaviscon. A recent fast cure for terrible nausea has been to charcoal burn some toast and eat that. For the gastroparesis when it is bad and I can't seem to digest anything, I need to go back to mostly liquids and soups and soft foods. I avoid vinegar, citrus and meats during flares. After a couple of weeks like this I seem to get back to better digestion again.

I hope you do get answers however I am expecting you get a similar "we don't know" as I did.

best regards,

tearose

[poppetkazutaka]

I got my liver panel back, but it was from the doctor I hate (Dr Bennett) because she tends to lie and cover up results. They're forwarding that to Dr Curtiss the gastro, so maybe he won't lie to me, if that's what she did.

Dr Bennett's nurse said, "They're normal."

"So, if you could, please explain to me how a person who never drinks and barely eats gets Fatty Liver?"

"Well, when you're overweight, these things happen, it's normal and if you watch your diet and lose some weight it can resolve on it's own."

Typical textbook answer. Call me fat. You just looked at the chart, saw 5 foot ZERO and 165 lbs. Assumed I was a big ol girl, because you've never seen me, and don't know it's mostly muscle and bone. You have no idea I could kick your butt up and down the **** doctor's office.

"Huh. Well, hun, I'm not overweight. I barely eat as it is. I just lost 10 lbs in a week and lose at least a 1lb a day, so the FAT thing won't be a problem very much longer. You go ahead and forward those results over to Dr Curtiss. Whatever. I'm done."

Most people who look at me laugh when I tell them what they said. They also give me a look when I say my weight, because they don't believe it. I'm small, and I'm stout because I look strong, not flabby. I walk everyday and I'm fast. I'm an energetic (when I can be and make myself be) person who pushes themselves to the brink of exhaustion at work.

I just...I'm done with PrimeCare Medicine in Bowling Green. Call me a fat mimic diabetic who's slowly getting sicker and that there's nothing they can do?

Good God. And I thought the guy in Arkansas who walked out on me was bad. At least he could admit defeat openly!