Post count: 1909

    Hi Mary, my two cents to add to others. My comments are from my own experience with Graves. With TED (thyroid eye disease) and with FMLA

    1. Graves’ which is hyPERthyroidism. There is a lot of good info in the search box. In summary, your are receiving too much thyroid hormone, and this generally results in a fast heart rate, tremor when you hold out your hands,voracious appetite, muscle weakness, feeling hot all the time, feeling crazy, to mention a few.
    I think another post referred to the treatment choices, but barring other physical issues, there are three:

    A. ATD’s-which were prescribed for your right now. Almost everyone begins with this med, to get us in a safer place. Then you still have three choices.
    One choice for you is to continue with ATD’. Some on this board, including Kimberly, have made that choice. She has some great posts about her experience and thoughts.

    B. Surgery-this was my choice. I wanted the fastest way possible to get the Graves’ symptoms out of my life. Alexis, adenur on the posts, has some great posts about her thinking to make that choice. lch11 or lhc11 also wrote some great posts about her experience.

    C. RAI-This is used in this country a lot. Many on this site chose it.
    But in your situation, with your present eye issues, there is more to think about. In summary, recent studies how shown a worsening of eye symptoms after RAI with people who already have eye issues. And, if you wanted to choose that, you would need to have the endo and an eye doctor who UNDERSTANDS Graves’ and TED, working together to give you the proper treatment before you had RAI.

    There are pros and cons, both personal, and physical, associated with each treatment.

    If you have TED, and you do have many symptoms of TED, you absolutely need to have an opthalmologist who is familiar with TED, see you on a regular basis. *****The endocrinologist is NOT the person to diagnose or follow thyroid eye disease. This is a very frustrating disease, it can be mild or severe. There are two phases, the active or hot phase(9-15 months or so), where eyes are changing, better one day, worse the next. And the inactive time, or cold phase, where permanent treatment can happen if necessary. Several surgical procedures can be done at this time, for retracted upper and lower eyelids, double vision to name a few.
    I am SO SORRY your endo told you that your eyes will never get better.
    That must have been tough to hear.

    3. FMLA-I disagree with the poster who said that FMLA was only to be a caretaker for others. It is possible I misunderstood the post.
    My experience with FMLA:
    I had it three times. Twice to recover from breast cancer chemo, and once for a broken leg while skiing. I had it granted when I had double vision with TED,but I had already retired, and was working only part time so I decided to permanently retire.
    The definition does say serious. But I have found HR to be wonderful and understanding, and I do encourage you to explore that route. Someone mentioned disability. That is another whole ball of wax, and is complex and difficult to obtain.

    Regarding your Cushings’ diagnosis. Read the Mayo Clinic reference Kimberly mentioned. I encourage you to be sure you have a firm diagnosis of Cushings/
    You really do have challenges, for sometimes it is possible that an endocrinologist who has a large Cushing’s patient population, does not have much interest in managing Graves’ patients.
    Regarding your seizures, I am presuming you have a neurologist working with you on that. Lots of folks have seizures, and many have focal seizures.
    The neurologist definitely should be managing that, not an endocrinologist.

    In summary, my heart goes out to you, and I know the next few months will be very frustrating, but you will feel better, and get your life back. Having different metabolic physical problems, and getting the doctors to communicate with each other so you have coordinated care, is truly challenging. Do keep writing to us.
    I know you know we aren’t professionals, but we sure have been there, done that regarding Graves’ and TEd.