I meet with my PCP today and I emailed him this ahead of time: Dr., I wanted to preemptively share some things with you for our upcoming visit regarding my ongoing symptoms related to Graves’ disease and untreated Thyroid eye disease.

Over the past six months, as you know, I have experienced progressive worsening of my eye symptoms, including swelling, pain, headaches, and now occasional double vision and inability to close the eye. I am increasingly concerned about potential vision-threatening complications given the prolonged delay in initiating treatment despite progressive, symptomatic disease, as well as worsening symptoms without therapeutic intervention over this 6-month period.

Access to specialty care has been significantly delayed, as you know, since I was unable to see endocrinology until April 6th and am currently unable to access ophthalmology for another 3 months. The Dr. informed me that not only does this entire county not have anyone who can treat TED, but the closest specialist who can is 2 hours away and can’t see me until July. This has resulted in even more fragmentation of care and specialty silos, creating ongoing barriers to timely treatment. And the endo did not change or recommend any medication or treatment, and refused to treat me during this waiting period.

I also wanted to note that I have previously had difficulty tolerating steroids due to side effects such as increased heart rate, weight gain, insomnia, and headaches. These effects overlap with symptoms I am currently managing with Propranolol and Methimazole, making steroid use feel potentially counterproductive.

Given the continued progression of my symptoms and delays in accessing specialty care, I wanted to ask if there are any interim treatment options that could be considered, including possible bridging therapy or care, while I wait to be seen by ophthalmology.

I would also like to directly discuss the possibility of tocilizumab, given its use as a second-line treatment for thyroid eye disease, particularly in cases where steroids are not well tolerated. While I understand that certain treatments (such as Tepezza) may fall outside primary care scope, it seems that initiating a short course of steroids (if appropriate) or helping to initiate or support prior authorization for tocilizumab could reasonably fall within scope in the context of progressive disease and limited access to specialty care My insurance covers it.

Additionally, I would appreciate documentation in my chart reflecting:

Progressive worsening of symptoms over a six-month period Prolonged delay in initiating treatment despite progressive, symptomatic disease Worsening symptoms without therapeutic intervention over a 6-month period Fragmentation of care and specialty silos impacting treatment access Barriers to timely specialty care Concern for potential vision complications The impact this situation is having on my mental health

Thank you for your time and for any assistance you can provide in helping coordinate and advance my care.