Re: Lupus? with many immune issues
KindSpirit, hi & welcome! I'm obviously only a patient. That said, doctors ought to understand the medically established criteria used to classify & diagnose SLE, as listed in the "sticky posts" at the top of the thread list. ("Stickies" are permanent info posts. Look for thumbtack icon in left column.)
There are also several excellent patient-oriented lupus hardcovers you could check out of your local library. Dr. Daniel Wallace &/or Dr. Robert Lahita both discuss many aspects, including its wide-ranging symptoms, Dx & treatment.
... So now that you've read the stickies, you'll note how tricky the "4 of 11" are! For starters, there isn't any one test that proves or disproves systemic lupus. Note also that you don't have to meet a mininum of 4 simultaneously; instead, the criteria apply to your LIFETIME, so visualize checking each in indelible ink, is how my rheumie explained that aspect.
Have you been tested for specific autoantibodies commonly seen in lupus (meaning beyond the ANA, which is a threshhold test only & not specific to lupus alone)? That criteria is tricky, too. The list contains ONLY the two considered VERY "specific" to lupus, anti-ds-DNA and anti-Sm; BUT there are actually at least 14 more less "specific" ones possible. (I'm a good example of this. I was Dx'ed based on anti-Ro autoantibodies, plus other things.)
My understanding is that Hashimoto's can co-exist with lupus. Also, depressed C3 is probably meaningful.
I've seen vitiligo on a few people & know it can affect large, solid areas of skin; bit I've read that lupus "discoid" lesions can also cause scarring &/or depigmenting. Do you still get lesions? If you had them biopsied, were *immunofluorescent stain tests* done? (I was told these tests can "light up" in a unique way on lupus-specific rashes.) But it's also my understanding that many people have lupus WITHOUT any lupus-specific skin aspects. i.e., your skin issues may or may not be directly lupus-related.
In your shoes, I'd definitely want to also see a nephrologist, for your kidney concerns. Good luck with your rheumie appt. next week. I hope you keep posting here & that others chip in soon, too. Bye for now, with my best wishes to you, Vee (P.S. Sorry your endocrinilogist isn't very supportive. I found that most of my doctors weren't, but that just means one has to KEEP AT IT, right? There are competent, civil doctors out there. Here's hoping your new ones are all that & more!)