This time two appointments in one day: my primary care physician, and a different more specialized endocrinologist.
Had to see my PCP because the furosemide has mostly stopped working. We've had to keep upping the dosage, and now there are days where it just doesn't do anything at all.
So, he's going to keep me on my current dosage of Furosemide, and add 2mg bumex (bumetanide) as a supplemental, to see if that keeps the edema under control.
In good news, controlling for the fluctuations in water retention, I've lost 9 pounds in 10 days.
The endocrinologist is a guy who specializes in unusual cases, ideopathic causes (stuff that happens where they can't figure out why), occulted causes etc... Basically he's the guy they send the weird endo problems to.
He agrees, something more is going on here. He's having me do another full series of blood tests, including some different tests this time. The thought is it might be paraneoplastic syndrome, some kind of pituitary lesion/tumor/malfunction, or Cushings (which I was checked for previously, but because of my other issues it may have been masked by something).
Right now he's trying to find an open MRI for me to get my head and neck scanned (there are a few in the area, he just wasn't sure if any were affiliated with his clinic). My SHOULDERS don't fit in a normal MRI, never mind the rest of me.
The most important thing though, is that I'm finally with a team that gets it. They get that I went from being "big" to being "fat" for no apparent reason. They get that I'm fat because I'm sick, I'm not sick because I'm fat.