Does liver disease escape detection easily?

[Chanasky]

I've been dealing with unexplained generalized pitting edema for almost three years now with no answers and I am wondering if I could have a liver issues as the docs are all stumped and not offering much by way of answers. I am completely confused myself about what exactly is wrong with me and why my body cannot balance out fluids anymore.

I had three separate tests showing elevated ammonia levels. I also have low testosterone and lots of inflammation in my colon and stomach. Docs are stumped and keep excusing the ammonia elevations as lab error or mishandling. I was sent to a hospital lab for an ammonia level and that one came back normal

I seem to feel much better when I don't eat. The moment I try to eat three meals per day, I swell up like a balloon and feel very ill with massively swollen abdomen, dry mouth, general exhaustion, muscle aches and just generally feeling very ill most days.

My liver enzymes are always normal and an ultrasounds showed a bit of fatty liver but otherwise normal. I was very thin before I started retaining all this fluid but now I am looking a bit puffy and overweight. No diabetes, drinking history or blood pressure issues. I was screened for heart, kidney and thyroid disease but all came back normal

Could a liver issue escape detection for this long?

[Chanasky]

Yup. I completely relate. I'd be disabled and unemployed if I were working a physically demanding job. Fortunately, I basically sit all day, so I manage to get by to some degree. But the chronic nature of the illness has definitely leveled me. Like you, I was very robust and free from physical limitations before all of these ailments descended upon me.

[fntn]

I seemed to have my doctors thoroughly confused. They know about the basic autoimmune disease I have, but there is something else lurking that has them stumped, so far at least. I've had blood work done at least once a week for over two years now, and it's getting old for sure. So yes, you're right about the nebulous nature of diagnosing AI diseases. But one thing is abundantly clear, your own body can really make your life very, very difficult. It's pounded me into the ground and I was unstoppable before.

[Chanasky]

Did you ever find out exactly what you have in terms of the disease? It seems to me that these autoimmune conditions are extremely elusive and difficult to pin down with a diagnosis. I have many symptoms of an autoimmune-like condition with skin eruptions, inflammation, lots of systematic symptoms, etc but they can never seem to find it. I'm not sure that they even know what they're looking for at this point. I just keep getting bounced around between specialists

[fntn]

Next time you feel that you're in a flareup, have your doctor do a complete blood work set on you. You know your body, and can sense when something's not right. Keep working with your doctor as well wrt autoimmune disease. My own flavor of it is very strange and subtle, and my doctors still haven't nailed it down completely. You could have your doctor issue a standing order for the blood work, so it's there for you whenever the flare may occur, no meeting necessary.

[Chanasky]

Thanks alot for the thorough response. I sincerely appreciate it. I'm trying to rule out all likely causes for the edema b/c the docs aren't very helpful in that dept at the moment. They've sent me for echos, checked the liver and kidney labs but I feel that they must be missing somsehting because the fluid retention persists. I was also screened for albumin/protein deficiency, thyroid issues, diabetes, etc, but nothing comes up so far. My markers for autoimmune diseases aren't elevated but the blood test was very general and given by my GP. I still haven't seen a immunologist or rheumatologist yet.

I do have chronically elevated white blood cells, usually in the 12-15k range (monos and neutros)  as well as non specific inflammation in my colon, stomach and esophagus discovered during colon and endo scopes, but doc says it''s unrelated to the edema. I don't really buy it, though, because when the GI symptoms flare, I swell like a balloon and when they calms down, the edema improves markedly. It's been a problem for awhile now and is driving me nuts to tell you the truth. It's extremely uncomfortable

[fntn]

It's very unlikely that a liver disease severe enough to cause pitting edema could have been missed. The usual scenario requires severe portal hypertension which is caused by either thrombosis or advanced fibrosis/cirrhosis. But all this will cause any number of detectable things that your doctors would have picked up.

It seems you've had everything checked into without any conclusive diagnosis. Has there been anything at all unusual in your blood work that could provide us some clues? Your auto-immune profile was completely normal as well? And your doctors are right about the ammonia testing, it's very tricky, and bad results are very common.