The Emotional Side of Thyroid Eye Disease

Disclaimer: This is a sponsored collaboration with Health Grades.

Do you know what it’s like to wake up and not recognize yourself in the mirror? To have this happen so often that you forget what you looked like before? Unfortunately, that is the scary reality for many people suffering from thyroid eye disease – like me.

When my thyroid eye disease (TED) symptoms were at their worst, my eyes were dry, red, watery, and painful. On the outside, I experienced eyelid retraction – my upper eyelids had pulled backwards, making my eyes look unusually wide – and the muscles behind my eyes swelled, which pushed my eyes unnaturally and alarmingly forward.

I constantly woke up in the middle of the night, aching with pain from the extreme dryness. Fatigued and walking to work, I looked like I was crying as I constantly dabbed my watering eyes and tried to salvage my nearly-destroyed makeup. I’d show up every morning with the whites of my eyes unnaturally red. However, by far the worst parts of my experience were the changes to the shape of my eyes….

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Finding the Right Doctor for Thyroid Eye Disease: Hindsight is 20/20

Disclaimer: This is a sponsored collaboration with Health Grades.

Finding the right doctor can be a stressful process, especially when experiencing scary and vulnerable symptoms like those related to thyroid eye disease (TED). But what happens when the doctor you trusted during this vulnerable and emotional time turns out not to be the right fit?

After I was diagnosed with Graves’ disease, an autoimmune disorder that causes hyperthyroidism, I started to develop the telltale symptoms of thyroid eye disease. My eyes looked oddly red, they became very watery, and worst of all, the muscles behind my eyes had started to swell up, pushing my eyes forward.

My endocrinologist had asked me if I wanted a referral to an eye doctor who specialized in TED, but I declined. I already had an ophthalmologist I trusted, who was widely recognized as an excellent doctor and seemed knowledgeable about numerous conditions. I immediately made an appointment with him. After an examination, I explained my struggles with Graves’ disease, and he agreed that perhaps my eyes had changed a bit. However, he said there was nothing to do at that moment but monitor them. At the time there was no indication that this condition was out of his wheelhouse…

Read the full article on HealthGrades.com

Thyroid Eye Disease Update – Surgery & Advocacy

Years after being diagnosed with Graves’ Disease and Thyroid Eye Disease, I can finally say I’m on the other side of my main set of surgeries – a total thyroidectomy, two orbital decompression procedures (one for each eye), and most recently an upper eye lid surgery.

I had originally hoped to complete these in winter of 2020/2021, but there were numerous pandemic-related delays which significantly impacted my life and mental health. I chose not to publicly disclose the dates of my surgeries. After cancellations, near cancellations, and delays, I’d only believe these procedures were happening once they were over.

I’m currently at home, resting, recovering, and looking forward to seeing the results once this curtain of bruising and swelling goes down. At that point, my doctor and I will be evaluating the results and noting any unresolved problems, in which case we’ll re-evaluate. But it’s an enormous relief to be on the other side of these.

In the meantime, I’m also happy to share that I’ve been invited to join the advocacy team at ThyroidEyeDisease.net!

This new resource features dozens of articles about symptoms, diagnosis, treatment, living with TED, mental health, talking with doctors, workplace/disability information, and more. There are also articles written by patient advocates and a heavily-moderated forum to connect with others in the community. I wish this resource had been available when I was first diagnosed and searching for answers.

I’ll be writing articles about living with Thyroid Eye Disease (my first two articles are already live on the site) as well as helping to moderate forums and discussions on social media.

Side note – my team leaders knew that my lid surgery was coming up, and they sent me these beautiful flowers the day before to wish me luck. Feeling grateful to be collaborating with such a kind and thoughtful team.

Visit ThyroidEyeDisease.net to learn more and connect with the community. Looking forward to seeing you there.

Graves’ Disease & Thyroid Eye Disease – Continuously a Process

It’s been a difficult few years navigating Graves’ Disease and Thyroid Eye Disease, and it’s time for an update. Where did I leave off?

My thyroidectomy that was originally scheduled for the first week of the NYC COVID-19 shutdown in 2020 was rescheduled a few months later. Upon waking up from the anesthesia, I instantly felt a wave of relief. Perhaps it was partially a release of stress that had been painfully building for six months, but I also felt deep down like my body was no longer fighting with itself. My surgeon appeared by my hospital bed and assured me that the nerves that control my vocal chords were intact. After several months of speech therapy I had a joint appointment with my surgeon and therapist where a camera was sent up my nose and down my throat – “Now sing!” (If you thought a COVID test felt weird – try this). My surgeon beamed with joy, gave me a picture of my vocal chords (which now has a prominent place my fridge – isn’t that where we all put souvenirs from our vocal scopes?), and sent me on my way.

Switching to a thyroid replacement medication, my thyroid levels finally started to stabilize for the first time in years. After pacing on the sidewalk and practicing how I would advocate for myself once inside my eye surgeon’s office, I was surprised that he suggested we try a new drug treatment for Thyroid Eye Disease. In the extra time that it took to reschedule my thyroidectomy more data had come out, and he now believed I was a good candidate.

I’m going to give you the cliff notes version of the nightmare that happened next:

-Insurance denied the claim.

-Insurance reconsidered and approved it.

-I had my first two infusions (out of eight).

-Production of the drug completely shut down due to Operation Warp Speed, and resources were redistributed to prioritize vaccine production. There was no estimation on when drug production would resume.

-Two treatments weren’t enough to tell us if the drug was working for me, so I waited four long months.

-I resumed treatment.

-Treatment didn’t work.

-We switched back to the original plan – a series of surgeries.

-Operating room schedules were significantly booked up due to all of the surgeries that had been delayed during the pandemic, so I waited another three and a half months.

Hello fall of 2021! A year later than originally planned I had two orbital decompression surgeries (one for each eye). Continuously a nightmare, I got kidney stones the morning of my first surgery and spent the first evening of my recovery in the emergency room. I was grateful the second surgery was boring in comparison.

Said one of my surgeons about orbital decompression – “It’s truly life changing!” And it has been. I am not free of this disease. I’m awaiting my next surgery. Things aren’t the same as they were before. But I am grateful that things are at least better. I’m triggered less often. Looking in the mirror is no longer excruciatingly painful. I can see progress. Sometimes I even spot a glimpse of the old me.

As I type I’m anxiously awaiting my upcoming lid surgery and experiencing familiar feelings as I watch the Omicron case numbers rise. Will my next surgery happen? Will it be delayed another three months? Maybe more? I’m just so tired. I’m ready to move on with my life. The emotional burden of this disease is too much to carry every day.

I’m hoping to share more once I’m on the other side of my next surgery. As with my orbital decompression surgeries, I won’t be sharing the date publicly. There’s nothing quite like the sadness of receiving well-wishes the night before the planned date and having to explain to everyone that it was cancelled at the last minute. But please feel free to follow me on instagram – I’ll be posting updates in my stories as they happen.

Until then, be safe, be well.