2 posts shown.
Hey everyone—so, I’ve recently noticed these white patches popping up on my skin, and they seem to be spreading. Since I’m already dealing with an autoimmune liver condition, there's a chance it could be vitiligo, though I also have hypothyroidism, which can cause all sorts of weird skin issues too. On top of everything else, because of my underlying health stuff, I’m running pretty low on vitamins D, E, K, and A. I was wondering if anyone knows who I should actually talk to about checking for these deficiencies, and what the process looks like for getting those levels tested? 🤷
Hey everyone, so I’ve been diagnosed with PBC, and looking back, it all kicked off around July 2011 when my appetite just vanished—and then the weight started dropping like crazy. I ended up losing 20 kg total. It got to the point where I was so weak I had to be hospitalized, and that’s when they finally gave me the PBC diagnosis. Pretty soon after, other stuff started happening too—like this mucus buildup in my lungs, some shortness of breath every now and then, and lately, these white patches on my skin that seem to be spreading. I’ve laid out all these symptoms to my doctors, but they’re dead set on insisting it’s got nothing to do with the PBC... they keep suggesting maybe some other autoimmune issues are cropping up. And honestly? That’s where it ends. Even though I’ve begged them to look into it, they won't even refer me to an immunologist. I haven't had much luck with the medical side of things, really. I used to be under the care of Dr. Hrstić over at Mayo Clinic, but she left, and now I'm stuck with these younger doctors who—if you ask me—don't seem to know much about this disease at all. To top it all off, they actually referred me to a psychiatrist because of the weight loss—which I went along with just so I could keep getting treatment, even though I know I don't have typical anorexia. I've always been a huge foodie, never been on a diet in my life, and before all this, I was a solid 136 lbs at 5'3". My takeaway from all this mess is that, unfortunately, you really have to be your own doctor. If anyone here has dealt with similar issues, please reach out—I'd love to chat and figure out how to manage these symptoms and speed up my recovery. Hang in there, everyone!