Grappling with Graves’ #5: TED Talk
As I mentioned in my last blog post, one of the problems with Graves’ (and other autoimmune diseases) is that doctors often misdiagnose symptoms as other things. That’s what happened to me with Thyroid Eye Disease (TED). Rarediseases.org describes TED as follows:
Thyroid eye disease is a rare disease characterized by progressive inflammation and damage to tissues around the eyes, especially extraocular muscle, connective, and fatty tissue. Thyroid eye disease is characterized by an active disease phase in which progressive inflammation, swelling, and tissue changes occur. This phase is associated with a variety of symptoms including pain, a gritty feeling in the eyes, swelling or abnormal positioning of the eyelids, watery eyes, bulging eyes (proptosis) and double vision (diplopia). The active phase can last anywhere from approximately 6 months to 2 years. This is followed by an inactive phase in which the disease progression has stopped. However, some symptoms such as double vision and bulging eyes can remain.
During my last two routine, annual visits to the optometrist, I complained about watery, red, and itchy eyes. I asked if it was possible that my right eye that watered constantly had a blocked tear duct. The optometrist thought it was surely allergies causing all my problems. He dismissed my double vision to be a result of the worsening of astigmatism and cataracts. Another thing that complicated my case was that I also have Narrow Angle Glaucoma, although I had surgery for that on both eyes many years ago.
About the time of my last eye appointment, I had been seeing commercials about TED… loads of them! I knew that bulging eyes could be a side effect of Graves’ but had no idea that TED was a completely separate disease that came with so many symptoms and afflicted over half of those with Graves’ Disease. Since my eyes were not bulging, I assumed my Graves’ had not impacted them, until I saw those commercials. It was then that I decided to get checked for TED.
This past December (2021), I made an appointment with a TED Specialist. On my first visit, I was diagnosed with TED and told that I was in the early stages. The specialist felt that if the disease progressed any further, I would be a candidate for a drug called Tepezza® (teprotumumab-trbw). Tepezza is a fairly new treatment but is like a miracle drug for those suffering with TED. The specialist also told me that my right tear duct was indeed blocked and said this was one of the side effects of radioactive iodine (RAI) ablation, the treatment I opted for with my Graves’ Disease (this is another one of those things that most doctors don’t know about and no one tells you). He noted, though, that correcting the blocked tear duct would have to wait until the TED stabilized.
By my second visit to the TED Specialist (6 weeks after the first), he felt I was at the point of needing treatment to stop and ideally reverse some of the symptoms. Because it is so new, it is an expensive treatment and my insurance requires that before prescribing Tepezza®, my doctor must first send me for a series of six steroid infusions. After only two steroid infusions, I had to stop because of the severe side effects. My blood pressure was spiking, and I was anxious and experiencing heart palpitations. We later found out that these two infusions had also probably been the cause of my thyroid stimulating hormone (TSH) levels changing drastically and causing me to have hypothyroidism.
Once it was determined that I couldn’t continue with the steroid infusions, my doctor prescribed Tepezza® and my insurance company denied the treatments. I appealed and the insurance company denied the appeal. My only hope was to request mediation from an Independent Review Organization (IRO). Thankfully the IRO overruled the insurance company and approved my prescription and I started treatments in late June. I have had two infusions so far and the swelling and pain have decreased considerably. I am still experiencing double vision and some difficulty with eye movement and peripheral vision, but I am very hopeful. I have been prescribed eight Tepezza® infusions between now and December. Wouldn’t restored vision be a great Christmas present? For now, I am super thankful that there are doctors who specialize in the treatment of TED.
