If I'm honest it's I've likely had acute symptoms for the last 7 years gradually getting worse. A little background, I'm a 27yr old female with diagnosised pcos, hypothyroidism, pcos induced insulin resistance, vitamin d deficiency, high testosterone/low estrogen, and acanthosis nigerians. Im on massive amounts of meds for everything and currently have the nexplanon implant for extreme ovarian cysts. My grandmother had grovers disease when she was younger and scleroderma,as well as a near death battle with bilious pemphigoid along with some other autoimmune issues.
It all began to drastically increase a year ago when my hair started to noticeably fall out a lot more and I was starting to be get rashes and strange scaly patches on my forearms, chest and face(mainly my nose, ears, cheeks) and couldn't function due to fatigue. I visited my pcp and began a battery of blood work. Time after time everything was coming back normal except my vitamin d levels were extremely low and a slightly under active pituitary gland.
2 endocrinologists, 3 dermatologists and a specialty gynecologist later and I'm honestly no closer to figuring out the issue. We've tested for lupus, Cushing disease, and a number of other autoimmune and other disorders. We've done 2 punch biopsies of my scalp, the first showing most likely androgenic alopecia and sebhorric dermatitis, the second showing telogen effluvium(massive hair loss due to traumatic event, which I have not had). Every specialist I've seen has treated me like I'm a crazy person but I know My body and there is something WRONG.
I work in the medical field and I've been doing research nonstop for the last year it feels like and every time I feel like I found the answer the tests come back negative. My pcp is the only one who believes me, but we're at a bit if a dead end. When they took the last biopsy i had developed small lumps on scalp that would eventually develop a head and be filled with white pus once they were popped. They're extremely painful. They do not show developed features of connective tissue disease and no sign of bacterial infection or fungus.
I'm so lost and feeling beyond hopeless. I'm hoping someone can at least point me in the direction. I just need an answer to what's going on with my body.