Possible misdiagnosis of liver disease?

[LR9799]

Hello. I made an appointment to see my doctor after experiencing pitting edema in my ankles. She did blood work and noticed my liver enzymes were slightly elevated (I no longer have the actual numbers), and my protein was low. She sent me to a small hospital where they did a CT scan with the dye. She said the results showed nothing wrong besides a little bit of a fatty liver and a slightly swollen liver. I have been bleeding (menstrual) for almost three years. Literally. My OB has done every test imaginable and can come up with no reason for this. I've read online that liver disease can cause irregular menstrual cycles, but can such a minor case of fatty liver cause such an extreme case of bleeding every single day? Also, I have pain in the upper right portion of my stomach more often than not. Again, I'm sure it's from my liver but should such a mild case of the disease cause so much pain? Lastly, I read online that drinking a cup of warm water with fresh lemon juice would help work as a sort of detox for the liver (I prefer natural alternatives as often as possible), and from the first day I started this the pitting edema in my ankles became REALLY bad. I'm talking it looked like there was a golf ball under my skin. It's very localized. My doctor had told me the pitting edema was from my liver not producing enough protein, so is the lemon juice making my liver worse? I'm starting to feel like my symptoms are too extreme for a "mild" case of fatty liver disease and I'm worried I was misdiagnosed. Any help or advice would be greatly appreciated! (I am currently waiting to get back in to my doctor and hopefully get a referral to a specialist) Also, I was told blood work for hepatitis was normal. I have never used drugs. I have not touched alcohol in a year and before that I drank only occasionally. I've also gained about 30lbs and a lot of it is in my abdomen. It seems no matter what I try (only eating healthy & exercising several days a week) nothing helps. I also cut out all fast food, soda and caffeine upon diagnoses. Thanks again.

[Dee1956]

Cean has given you excellent advice.  I hope you can find an answer, I know what it feels like to know that something is wrong and have doctors tell you you are ok.  I was exposed to HCV in 1977, back in the 90's was tested for HCV,  got a false  negative so went on another 10 years before I found out I had HCV.  I was just going in to cirrhosis when I was diagnosed.

Hang in there, trust that you know your body, it will get better.

[ceanothus]

A liver specialist would most likely order blood tests that included a full CBC, a liver panel, a metabolic panel, and antibody tests for Hepatitis A, B and C. If you've had any of those blood tests you should obtain your own copy of the results, and if you could post those numbers it might give us more to go on, but remember, we are mostly educated patients ourselves, not doctors. They would probably also order an abdominal ultrasound. The CT scan may have eliminated the need for that but I'm not sure. In general a CT scan provides a better image but an ultrasound may still be better for certain things. If the above tests didn't clarify the problem well enough then the specialist might ask for an endoscopic examination. in this exam your throat is numbed and you are partially sedated while a tube is placed down your esophagus, into your stomach and often a little beyond the stomach. The doctor is able to visualize problems through the tube and can also take small biopsies if needed. This test is more likely when the doctor suspects involvement of the stomach, bile ducts or pancreas. If the doctor is more concerned about the liver being directly involved then they are more likely to request a liver biopsy. This involves an extremely quick-action needle going in just under your rib cage and instantaneously back out again with a core sample of liver tissue for analysis. Details of how the procedure is done have evolved since my last biopsy so I can't describe it in great detail other than to say the actual needle part is shockingly quick, which means it only barely registers as pain - its just so fast that there isn't time to form a full thought of "this hurts". You might get as far as "this" when you realize that it is finished already. The liver biopsy is the gold standard for determining the actual condition of the liver and is a very worthwhile test when there are warning signs of possible damage to the liver, but it is definitely not in the first line of tests as it does carry some risks. If you have elevated liver enzymes and a swollen liver I think a liver biopsy should definitely be in your very near future. It shows what actual damage has been done and
can help in identifying a cause.

It just occurred to me that one other possibility for liver disease in those with no viral hepatitis and no alcohol use is autoimmune hepatitis. That would require another set of blood tests, and I'm not terribly familiar with exactly which ones. There are many possibilities out there, which is why it requires a well-trained hepatologist to work it out and to treat you. These are complicated problems and some of them can be life or death, so don't try to stick only to your local small-town doctors, as they are very unlikely to have enough experience to manage it as well as a specialist in a large facility with ready access to a multidisciplinary team. Don't just ask for a specialist – clearly TELL your doctor to refer you right now. Good luck!

[LR9799]

Ceanothus, is there a particular test result that might be helpful for me to post? My hep, thyroid, and diabetes tests were all negative. I did have elevated liver enzymes (she said if I were on certain medications she wouldn't even be concerned about the numbers, but I don't take any medication at home), and I'm sure I could get those numbers if it would be helpful. CT scan was negative for cirrhosis. Although I'm worried they missed something while reading it. But I am a chronic worrier. :)

[LR9799]

Thank you guys! And yes, I was tested for Hepatitis, I had my thyroid checked, and was checked for diabetes. The CT scan of my liver showed no chirrosis. Her exact words were, "You have a little bit of a fatty liver and it's slightly swollen." I also had my gallbladder removed in 1999.  As far as my GYN problem, I've had test after test. Evaluate your liver is what regulates your menstraul cycles, and mine isn't up to par, I'm assuming on my own that my problem is coming from that. I've made an appointment with my family doctor to get a referral to a specialist. Just trying to get some opinions and viewpoints on here.
I was also worried about the lemon juice on my teeth! Thanks for the advice with chewing the gum! I do dilute half a lemon in a cup of water. I hope that helps some, lol. My pitting edema only comes when I eat fatty foods (which is really rare), but the first couple times I drank the lemon juice it flared up big time (the edema)   Not so much now. I'm hoping that means it's doing it's job, but I won't know for sure until I get back to the doctor. Thanks again for all your input!

[Dee1956]

so sorry I read it but did not take it in you have been tested for Hepatitis so sorry I was trying to help and missed that one point.

If your liver is swollen that is a sign it is irritate and/or inflamed, never a good thing, not even a little bit.

[Dee1956]

Hello there, Ceanothus has given you excellent advice.  I think I would be going to  a hepatologist as she said.  Upi meed a specialist to weigh all of your symptoms.  Fatty liver is never good however as you said, it is mild, there can be other thing contributing to the edema.  I had pitting edema about 17 years before being diagnosed with Heptatits C

I also agree with Cean that it is time to find a new OBGYN 3 years of bleeding with no help is awful

About the  lemon in water, while I have read that it helps the liver detox.. I did it faithfully for two years; it eroded my teeth until the back of me teeth look like I had bulimia, they are deteriorating.  My doctor tells me they will break and that I will have to eventually have crowns.

From what I was told the lemon water was ok but I should have chewed a piece of gum after wards to neutralize the acid.  When I said I brushed my teeth I was told that made it worse.

I hope you can get some help.  The doctors look at the entire body to see how you are doing.

Take care
Dee

I just re read your post, have you been tested for Hepatitis C?  
I have an acquaintance with fatty liver and she has just been diagnosed with cirrhosis it is bad it hurts for her to lay on her right side due to the swelling.

You can help your liver by drinking water, eating fruits, vegetables, no red meat for a while, only chicken or fish.  Stop any fast foods, colas, as well as processed food like lunch meats which are full of salt
.  All of these things affect the liver, can irritate and inflame so that the liver is not working well, add to that fatty liver and you are headed for trouble.

Have you been tested for Diabetes?  As a diabetic myself I have read that uncontrolled sugar can contribute to fatty liver

Again, take care, please let us know how you are doing.

[ceanothus]

This is really not much information to go on in figuring out your problem, and none of us on this particular forum are doctors either. All I can say is that you should be seen by a specialist, preferably a hepatologist but at least a gastroenterologist, in order to clarify what is going on in your liver. It is not uncommon for liver diseases to require a highly trained specialist to juggle a lot of different test results and filter them all with the knowledge gleaned by personal physical examination before being very certain of what is really happening. For your own part, you should ask for and retain a paper copy of every test result for future reference. Once there is more information you should then try to educate yourself as much as possible, but I think things have to be narrowed down more first or there will be too much to manage. One thing I can tell you is that the liver itself doesn't have the kind of nerve endings required for sensing pain, so you are not feeling pain in your liver itself. Sometimes the liver can swell enough to put pressure on nearby tissues that can produce pain signals, but most often pain in that region is something entirely else. Acid reflux is the most common culprit, but it can also be gall bladder problems or colon problems (gas or irritability being most common). I hope you can also get a second opinion on you GYN issues. I think it would be well worth taking a trip to the nearest big city to see specialists who have more resources available and who have seen a greater variety of different problems. Do come back when you have more information (test results and such) and someone might be able to help more.