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All affected by Thyroid Eye Disease (TED)
You’ll never walk alone

Prevent Blindness offered an ASPECT intensive TED Storytelling Workshop earlier this week. 12 of us with thyroid eye dis...
08/27/2026

Prevent Blindness offered an ASPECT intensive TED Storytelling Workshop earlier this week. 12 of us with thyroid eye disease got a masterclass in the art of creating scenes, summaries, and reflections using our lived experience with TED. It was phenomenal and deeply appreciated ❤

Understanding   ( ) 👁️⚡How to track your symptoms & speak your doctor's language.If you have   or thyroid issues and not...
08/27/2026

Understanding ( ) 👁️⚡

How to track your symptoms & speak your doctor's language.

If you have or thyroid issues and notice , , or .....you aren't alone.

TED is an where the body attacks the tissue behind the eyes. Knowing what your doctor checks helps you take control of your care!

🚨 1. Active vs. Inactive: Which Phase Are You In?
TED travels in two distinct phases. Knowing your phase tells you what treatment comes next:

🔥 Active Phase (Inflammation): The eyes are swollen, red, or painful.

Goal: Calm the fire using anti-inflammatory meds or biologic therapies.

🧊 Inactive Phase (Stable): The redness stops, but scar tissue or muscle tightness remains.

Goal: Repair and restore using reconstructive surgery or prism glasses.

📊 2. The CAS Score: Measuring the "Fire"
Doctors use the Clinical Activity Score (CAS) (0 to 7 points) to check for active inflammation:

👁️ : Aching behind the eye or pain when moving your eyes.

🔴 : Red eyelids or red eye surface (conjunctiva).

🎈 : Puffy eyelids or swelling in the corners of your eyes.

Rule of Thumb: A score of 3 or higher means active TED that needs medical treatment to calm inflammation!

👥 3. The : Rating
If swollen eye muscles make you see double, doctors grade it on a 0 to 3 scale:

🟢 Grade 0: No double vision.

🟡 Grade 1 (Intermittent): Only when tired or waking up.

🟠 Grade 2 (Inconstant): Only when looking far left, right, up, or down.

🔴 Grade 3 (Constant): Always double when looking straight ahead or reading.

💬 4. Take-To-Your-Doctor Checklist
Ask these exact questions at your next appointment:

📝 "What is my (CAS) today?"

⏳ "Am I in the active or inactive phase right now?"

👓 "Would temporary help my double vision?"

What has been your biggest challenge when tracking eye symptoms?


Navigating   and understanding the Signs of   ( )If you are managing an autoimmune thyroid condition like Graves’ diseas...
08/25/2026

Navigating and understanding the Signs of ( )

If you are managing an autoimmune thyroid condition like Graves’ disease, it is vital to understand that your immune system can also target the tissues surrounding your eyes.

Many patients experience symptoms they believe to be unrelated, but these often signal Thyroid Eye Disease (TED).

If you recognize these common signs, please mention them to your provider and care team as you may need to see a specialist and get more specialized testing:

☀️ LIGHT SENSITIVITY (Photophobia): Do your eyes ache or tear up in bright sunlight or standard indoor lighting?

🏜️ DRY, IRRITATED EYES: Is there constant redness, burning, or a "gritty" sensation, as if sand is trapped under the lids?

🎈 EYELID SWELLING/PUFFINESS: Have you noticed heavy lids, puffiness around the orbits, or eyes that look "baggy," especially in the morning?

👓 DOUBLE VISION (Diplopia): Are you having difficulty focusing, or is your vision splitting, causing images to overlap?

💥 EYE PAIN OR PRESSURE: Do you feel a deep, dull ache behind the eyes, particularly when moving them side-to-side?

The Critical Connection

Thyroid Eye Disease (TED) is a specific autoimmune process resulting in orbital inflammation and swelling. It can occur even when your blood thyroid levels are within normal range.

The Comprehensive Action Plan

🗓️ SCHEDULE AN APPOINTMENT: Seek an evaluation with a specialist care team (Endocrinologist, Oculoplastic Surgeon, or Neuro-Ophthalmologist).

📝 PREPARE A SYMPTOM LOG: Track the frequency and severity of your eye symptoms.

💬 DISCUSS TREATMENT OPTIONS: Early specialist intervention is crucial for proper management.

Please share this post to help raise awareness and ensure patients get the timely specialist care they deserve.




References:

Acharya, M., et al. "Ocular Surface Dysfunction and Quality of Life in Thyroid Eye Disease." Indian Journal of Ophthalmology / Survey of Ophthalmology (review in Current Opinion in Ophthalmology focusing on thyroid-associated ophthalmopathy and ocular surface involvement).

Bartalena, L., et al. (2021). "The 2021 European Group on Graves' Orbitopathy (EUGOGO) clinical practice guidelines for the medical management of Graves' orbitopathy." European Journal of Endocrinology, 185(4), G43-G67. (Notes that persistent surface symptoms, lagophthalmos, and photophobia warrant active evaluation for disease activity and corneal exposure).

Julie Owens, BCPA shared this fantastic news with me and gave the okay to post it! I recall our first encounter when she...
08/20/2026

Julie Owens, BCPA shared this fantastic news with me and gave the okay to post it! I recall our first encounter when she signed up for a TED Community Organization Builders program.

I quickly learned that Julie loves to help others who are facing many of the TED and Graves' challenges that she knows all too well!

She now has global recognition for her videos, in-person talks, visits to "The Hill" and patient advocacy work.

With a nod to Prevent Blindness for their impeccable decision to welcome Julie to join their Policy & Government Affairs Committee. We love you, Julie ❤

COMMON COMMENTS FROM OUR TED PATIENTS TALK ABOUT SYMPTOMS THAT AT FIRST DID NOT CONNECT WITH TED:IS THIS YOU?? : “I thou...
08/17/2026

COMMON COMMENTS FROM OUR TED PATIENTS TALK ABOUT SYMPTOMS THAT AT FIRST DID NOT CONNECT WITH TED:

IS THIS YOU?? : “I thought I was just getting older or having . I had no idea it was actually my eyes reacting to an .” 👁️👇

How many times have you been told, “Your thyroid blood work came back completely normal!”... While your eyes feel like they’re burning, aching, or changing right in front of the mirror?

Here is the hard truth that so many in our community learn the hard way: ( ) operates on its own timeline.

Your in your blood do not always match what is happening in the tissues behind your eyes.

If you’re experiencing subtle, frustrating changes in your vision or comfort, you aren't going crazy.

"Here are three (3) invisible" symptoms that standard blood tests often miss:

1️⃣ The "Constant Awkward Tear": Paradoxical caused by lacrimal gland inflammation or incomplete eyelid closure at night.

2️⃣ The "Sunrise Headache": A deep, dull ache or pressure behind the eye socket that’s often worst when you wake up.

3️⃣ The "Lazy Glance Lock-Up": , , or when trying to look up or to the side.

💡Take Action & Find the Right Specialist

If these symptoms sound familiar, don't wait for your routine blood work to catch up. Standard eye exams or primary care visits can sometimes miss early-stage TED. Go a little deeper and ask to see an

💡 Next Step: Request a referral to an or a who specializes specifically in Thyroid Eye Disease.

📚 Scholarly References & Further Reading
For those who want to dig into the medical data or share evidence with their healthcare provider:

On Quality of Life & Symptoms: Smith TJ, Hegedüs L, et al. "How patients experience thyroid eye disease." Frontiers in Endocrinology. (Highlighting the physical and psychological impact of TED).

On Early Misdiagnosis & Tearing: Casey Eye Institute TED Center / OHSU. (Outlining how early TED irritation is frequently mistaken for ocular allergies).

On Socket Pressure & Pain: Yale Medicine TED Fact Sheet. (Detailing tissue swelling and retrobulbar pressure mechanics).

On Tear Balance & Eyelid Retraction: University of Iowa Department of Ophthalmology. "Thyroid Eye Disease Tutorial." (Explaining exposure keratopathy and tearing).

💙 Share this post to your story or send it to a friend who is struggling to get answers. The sooner TED is recognized, the faster patients can get the specialized care they deserve.

Understanding your thyroid labs isn’t just your doctor’s job, it’s your power as a patient. 🩺📊When living with   or   (T...
08/09/2026

Understanding your thyroid labs isn’t just your doctor’s job, it’s your power as a patient. 🩺📊

When living with or (TED), blood work tells a story. A single lab result is just a snapshot, but tracking your numbers over time reveals the full picture—helping you spot trends, recognize subtle shifts in how you feel, and advocate for yourself with confidence.

Here are 3 key labs every Graves' patient should track:

1️⃣ (Thyroid Stimulating Hormone): Shows how your pituitary is communicating with your thyroid.

2️⃣ & : Measure the active, circulating thyroid hormones that directly impact your energy, metabolism, heart rate, and mood.

3️⃣ / ( ): Measure the autoimmune driver behind Graves’ disease and TED.

💡 Pro-Tip: Don't just ask if your labs are "normal." Ask for the exact numbers, keep a personal log or binder, and note how your symptoms correlate with your lab trends.

When you understand your data, you become an active partner in your care journey.

💬 Do you track your lab work?

Key pillars of effective lab advocacy:

✨ Tracking Trends Over Time: Thyroid hormone dynamics (TSH, Free T3, Free T4) fluctuate, and longitudinal tracking reveals patterns that single lab draws miss.

✨ Monitoring Autoimmune Activity: Antibody levels (TSI/TRAb) provide valuable insight into underlying autoimmune trajectory.

✨ Correlating Labs with Lived Experience: Matching lab data with physical symptoms creates a more complete picture during clinical discussions.

When you are equipped with knowledge and organized records, clinical visits become more collaborative, meaningful, and effective.

🔑 Look at trends, not just snapshots. TSH, Free T4, and Free T3 can shift rapidly. Keeping a digital log or physical binder helps you see how treatments are working over time.

💡 Know your antibody numbers. TSI/TRAb titers show the autoimmune activity behind Graves' & TED. Tracking these helps you better understand your disease trajectory and communicate with your care team.

🗣️ Be your own advocate: Always request a copy of your lab report. Write down how you feel alongside your numbers. You are an active partner in your healthcare journey! 💙

👁️✨ Innovation in Thyroid Research for the  ,   The   of Treatment is ArrivingIf you or someone you love lives with Grav...
08/01/2026

👁️✨ Innovation in Thyroid Research for the , The of Treatment is Arriving

If you or someone you love lives with Graves Disease or Thyroid Eye Disease (TED), you know how heavy the journey can be.

For years, the primary options were blunt fixes: high-dose steroids, radiation, lifelong thyroid medications, or invasive surgeries. That story is changing.

We are stepping into a new era where medicine doesn't just manage symptoms, it targets the precise "switches" causing , , and .

Here is what is happening right now in around the world, and why there is so much reason for hope:

💊 1. "Pills Instead of Infusions" ( )
What’s happening: For the first time, researchers are testing daily oral pills that block the exact same eye-swelling pathways (IGF-1R) as today’s IV treatments.

The ‘Pill’ Innovation: with their investigational drug .

The Milestone: Positive clinical data from the LIDS trial demonstrated significant, statistically meaningful reductions in ( ).

Why it inspires hope: Imagine treating TED from home with a simple morning pill, no hospital visits, no IV needles, no long infusion appointments.

💡 Patient Education: Learning the names of (like ) helps you ask your clinical team specific questions about HOW different drugs work inside the body!

💉 2. "Quick Self-Injections at Home" (Next-Gen Subcutaneous Biologics)

What’s happening: Companies like are developing convenient subcutaneous autoinjectors.

The Approaches: Viridian is building a complete ecosystem of options tailored to different patient needs, moving from IV courses to at-home autoinjectors and new immune targets.

Why it inspires hope: Instead of spending hours in an infusion center, future treatments could take minutes at home every few weeks, giving patients back their time and independence.

🧹 3. "The Autoantibody Vacuum Cleaners" (FcRn Inhibitors)
What’s happening: Medicines like and IMVT-1402 ( ) act like precision sweepers in your bloodstream. They rapidly filter out the harmful ( ) that drive both and .

The Root Cause: While many treatments focus on reducing behind the eyes, Immunovant is taking aim at the source in the bloodstream. These autoantibodies act on stuck "on-switches" that trigger hyperthyroidism in Graves’ and spark tissue expansion in TED.

Why it inspires hope: By clearing out bad antibodies, these therapies aim to reset your immune system and potentially lead to long-term remission, not just temporary relief.

🛡️ 4. "Shutting Down the Flare-Ups" (Anti-IL-6 Blockers)
What’s happening: Drugs like ( / ) target specific inflammatory signals ( ) that cause acute red, painful, swollen eye flares.

The Target: Roche is targeting (IL-6), one of the main inflammatory cytokines that acts as a signal flare driving acute tissue swelling, redness, and scarring in TED.

Why it inspires hope: Blocking these signals early helps prevent tissue damage before permanent structural changes occur.

🧬 5. "One-and-Done Protection?" (Gene Therapy)

What’s happening: Emerging technology (like KRIYA-586) is exploring single-dose gene therapy delivered locally to the tissue behind the eye.

Why it inspires hope: It teaches local cells to produce their own protective antibodies, opening the door to long-term control without taking lifelong medications.

🌐 Community, Education & Support ( )

comes through education, peer connection, and community support. Whether you are newly diagnosed, tracking clinical developments, or looking for practical guidance on living with these conditions, connect with these dedicated non-profit organizations:

💙 Organization: Discover patient advocacy, webinars, and education dedicated to Thyroid Eye Disease at tedcommunity.org.

💙 ’ Community: Access patient networks, disease awareness, and resources tailored specifically for Graves' disease at gravescommunity.org.

💡 The Takeaway for Patients & Families

You are not alone, and the care you receive tomorrow will look completely different from the care of yesterday.

Science is moving from "how do we live with this?" to "how do we fix this at the source?"

💬 Join the Conversation:
Have you or a loved one experienced Graves' or TED?
Which of these innovations (pills, home injections, or immune sweepers) are you most curious to ask your care team about?
Let’s spread hope, patient literacy, and awareness... Share this post….

Talk with someone who needs an encouraging update today!
💙🏷️

Have you ever thought about expressing yourself through art? 🎨✨Today we will talk about expressing yourself when words a...
07/28/2026

Have you ever thought about expressing yourself through art? 🎨✨Today we will talk about expressing yourself when words aren't enough. 🎨 Have you ever considered using art to process your journey with TED or Graves’?

Living with or can bring challenges that are hard to put into words. Sometimes, art can speak for us when words fall short.

The Group is a warm, welcoming space to connect with others who truly understand. Here, it’s all about the process of creating.... not the outcome. No prior artistic experience is needed....just bring yourself! Its about having fun!

Come enjoy meaningful conversation, unwind, and explore creativity as a gentle tool for healing, empowerment, and self-expression. 💙

Come create with us .....you belong here!
https://tedcommunity.org/thyroid-eye-disease-ted-art/

Artwork by “Bodhi,” one of our TED ART & Creative Studio participants, titled Mariposa: Healing & Transformation. Created in honor of Graves’ Disease Awareness Month and inspired by our theme, “Wings of Awareness, Wings of Hope.”

Understanding your body is not just helpful... When it comes to  , it can be truly life-saving. During  , we want to tal...
07/27/2026

Understanding your body is not just helpful... When it comes to , it can be truly life-saving.

During , we want to talk about what it really means to live with this .

The journey often starts in confusion: , feeling , sudden , and deep . These signs can feel like or , but understanding what is happening can be life saving.

What happens if Graves Disease goes untreated?

- HEART COMPLICATIONS: Rapid heart rate, abnormal heart rhythms ( ), weak heart muscles

-BONE LOSS: from accelerated bone turnover

-PSYCHIATRIC CONDITIONS: Severe anxiety and mental health changes

-EYE COMPLICATIONS: ( )

The EXTREME EMERGENCY:

(See our visual from below to see what Graves Disease can affect)
www.GravesCommunity.org

HYPERTHYROID EMERGENCY: THYROID STORM

In rare cases, often triggered by infection, trauma or untreated hyperthyroidism, the body can enter a critical state called

This is a sudden, extreme spike in that causes a dangerously high fever, severe rapid heart rate, agitation, and organ stress. It is a Medical Emergency that requires immediate Emergency Room care and an admission to the hospital.

The good news, . Understanding the symptoms, importance of sticking to your treatment plan, and tracking your LABS, and communicating with your doctor, gives you back control.

YOU ARE NOT ALONE IN THIS JOURNEY! Lets keep raising awareness together! Share this post and talk to a friend about






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