Dismissive Endo
32F, newly diagnosed with Graves’ disease and feeling overwhelmed. Has anyone else had an experience like this?
I was diagnosed with Graves’ disease about 6 weeks ago. Interestingly, my younger sister was diagnosed 3 years ago, so it's not completely unfamiliar territory, but going through it myself has been a different experience.
My endocrinologist initially started me on a beta blocker twice a day and 40mg of methimazole daily. Since then, I've had good days and bad days but sometimes it’s hard to tell trying to balance being a full-time working mom to a 2-year-old while my husband works opposite shifts.
Earlier this week, I noticed a red, patchy rash that wasn't confined to one area. Since I know rashes can be a side effect of methimazole, I called my doctor's office to ask if it was okay to take Benadryl with my medications. The medical assistant called me back and said I needed STAT bloodwork and needed to come into the office immediately.
Up until that point, I had only seen the nurse practitioner. This was the first time I actually met my endocrinologist, and that visit left me feeling evtn more frustrated and confused. When I showed her the rash, she said it looked like a bug bite. I suggested maybe it was heat rash, and she’s like yeah, it could be that. Then, without having reviewed my lab results, she asked, "Do you think you need to lower your dosage?" I asked whether my bloodwork looked okay and what she recommended. She looked irritated and said she hadn't reviewed the results yet. She initially suggested dropping my methimazole from 40mg to 20mg, then said maybe 30mg, and eventually reviewed my labs. She told me my TSH and T4 were stabilizing, but my T3 still indicated hyperthyroidism. Despite that, she reduced my dose to 20mg daily and told me that if I felt like I needed to increase it again, I could. The conversation became even more discouraging when she said, "I don't know what you expect, there isn't much on the market." She brought up radioactive iodine treatment and asked if I had someone who could watch my toddler. When I asked how long I would need to be separated from my child, she said, "I don't know, we'll figure it out." I asked again because arranging childcare would be a major factor in my decision, and she gave me the same answer.
The entire appointment felt dismissive and unprofessional. It wasn't a typical doctor-patient conversation at all. I left feeling like my concerns weren't taken seriously and that I was expected to make treatment decisions without adequate guidance. I'm still very new to all of this and trying to educate myself about Graves' disease, treatment options, and medication side effects. Some days it feels like I'm taking more medications to manage side effects than i do to treat graves itself.
Right now, I just feel defeated. I feel like no matter how much i try to explain what i am going through-to my husband, family, friends-no one truly grasps what a roller coaster it is to have graves. Has anyone else dealt with an endocrinologist who seemed this dismissive? Did you seek a second opinion, and if so, was it worth it? (Sorry for the long post, i just really needed to vent)
Posted Jun 4, 2026, 12:57 AM UTC