Undiagnosed long term edema. Possible heart failure?

[Chanasky]

Hi
I'm a 45 yr old male who has had chronic generalized edema (i'd estimate about 20-30 pds) for several yrs now without any medical explanation. I've seen several specialists, including a cardiology team, for extensive workups, but nothing abnormal so far (echos, metabolic panels, EKG, CXR, stress test, etc). When the water retention is at it's worst, I'm usually extremely dried out to the point that I feel dehydrated and often exhausted. GP tells me I'm "third spacing" but doesn't offer a possible reason or underlying cause. I also tend to get up from sleep several times per night to urinate, when the trapped fluid seems to return to my vascular system. Prior to the edema, I slept soundly throughout the evening and only urinated upon waking in the morning.

I don't have any shortness of breath that I'm aware of and I don't experience any breathing issues while lying down, which, I understand, is a common symptoms with heart failure patients. Additionally, the edema symptoms have been ongoing for years but haven't gotten worse, as far as I can tell. Given the extensive testing and examinations, is it possible I could have an issue with right heart failure that's being overlooked? The reason I ask is because none of my doctors can come up with an explanation for the edema and I'm not aware of any other possible causes, aside from heart, liver, and kidney diseases. I do have some additional GI issues, as well, but I don't think they're related to the edema. My next step is The Cleveland Clinic

[Chanasky]

I'm sorry to hear about your nighttime bathroom trips. Three times seems like quite alot to me. I can't imagine doubling the trips. I'd go mad

Prostate is fine, according to bloodwork and exams. I seem to be releasing excess tissue fluid in the evenings, when I lay down to sleep. During the day, the edema usually accumulates in the soft tissues and then returns to my vascular system when I lay flat. The fluid is everywhere, not just in my legs, although it only "pits" in the legs. I was about 180 at 6 ft prior to the edema and now I'm 210-220, depending on how much fluid I'm carrying. It's extremely odd symptom and is baffling to every specialist I've been so far. Ironically, my heart and arteries seem to be in excellent condition. First thought for most people my age who have edema is heart issue, but so far, no sign of it.

I'm actually a bit hyperthyroid (not hypo) with a very mildly elevated T4 and low normal TSH but doc claims it's not clinically significant at this point. Testosterone is quite low, though. My endo suspected a possible pituitary tumor based on low T becasue my testes are working fine and it's the pituitary that's sluggish, according to my bloodwork. He sent me for an MRI but that too came back normal. I was almost disappointed becasue the doc was pretty confident that he was going to find something and it would have been a relief to finally have an answer to all these strange symptoms.

Next up, doc is going to put me through a sleep study to check for apnea and a cortisol stim test to check adrenals. If those tests prove negative, then it's on the Cleveland Clinic for me, I guess

At any rate, thanks for the feedback. Much appreciated. Living without a diagnosis for extended periods like this is isolating and unnerving.

[Flycaster305]

Have you been evaluated and scoped for prostate problems?  I had prostate problems but since surgery, that problem has been relieved.  I now have CHF and take diuretics, and believe me, I'd love to only get up to go to the bathroom only three times a night.  It sounds like you have had lots of heart tests.  Are you taking a beta blocker?  Also, has your thyroid and testosterone levels been checked?  Keep us informed.