My Thyroid eye disease (TED) journey. Part 1. Will Tepezza help?

I have been diagnosed with Thyroid eye disease or TED. I thought I'd document what's going on in real time to share my experience and maybe get some good feedback in the comments section. In this video, I explain the symptoms and the doctors and what's next. Future videos should be shorter as I will do them after any major development.

[@Goldsamurai7777]

I’m on my 6th infusion of tapezza And I can already see a difference.

[@cljmcclain]

I heard alot of people say Tepezza worked and helped clear their double vision. Goodluck!

[@gigi5371]

Thank you for making this video 🙏🏻🙏🏻

[@Karlucci7]

Thank you so much for your video. I had the 2nd Pfizer vaccine on April 6th and 12 hours later went into a Thyroid Storm. I've never been diagnosed with any autoimmune disease or a thyroid problem until now. Now I have been diagnosed with Graves Disease and Thyroid Eye Disease. I have permanently disfigured eyes and I'm on Thyroid meds and heart meds. I am 18 months into this horrible rollercoaster. I too have double vision now and I have to block out one lense of my sunglasses just to drive.

[@cljmcclain]

How are you doing now?

[@rickburns4572]

I hope things are working out for you. Im pretty frustrated with the link between the jab and this disease. I started the tape on glasses a couple weeks ago.

[@Karlucci7]

@@rickburns4572 thank you so much. Yes, I went into the Thyroid Storm 12 hours after my jab and my left eye was put of the socket. I had never had any thyroid issues before the jab. I am keeping you in my prayers. I go to the Ocular Plastic Surgeon this Wed and I plan to talk to her about a temporary prism sticker for nonprescription glasses to help with the double vision. Will keep you posted so maybe it will help you too.

[@Annabee399]

Thank you kindly, sir, for the video. I also have TED in the right eye. However, I'll be getting the Tepezza infusions in a couple of weeks. And I feel anxious about the potential side effects. The viewers of this site likely echo this. So I'll follow up right away. My prayer is for God to grant us favorable outcomes without adverse reactions. 🙏🙏🙏

[@rickburns4572]

I started Tepezza. My 2nd infusion will be on Dec 13th. The 1st infusion was fine. I felt tired for a day, that was about it other than a big bruise at the infusion site. No change on the double vision, but we shouldn’t expect change till later in the process.

[@beckysue7789]

Tpp many side affects. Ive had Graves for years. My eyelid has been stretched so the muscle is wore out in eye. It only attacked my left eye. for a woman its very emotional

[@Annabee399]

@@beckysue7789 @Becky Sue I understand. However, strangers were more supportive than my mom and siblings. I had 6 of 8 Tepezza Infusions, and the side effects were diarrhea, dry peeling skin, hyperpigmentation, migraines, and the potential for Diabetes, which I had all except Diabetes. But, when I experienced hearing loss, my doc and I discontinued treatment. So I'm taking 200mg of Selenium which does help some. And wearing eyeglasses and sunglasses is a great disguise. Praying for all of us. 🙏❤

[@syafiqk2866]

@@Annabee399 sorry to hear about the side effects of hearing loss, did it recover over time?

[@Annabee399]

@@syafiqk2866 Well, I discontinued Teppezza on my 6th of 8 infusions a few months ago due to sudden hearing loss. Though not as severe, my hearing has improved, according to audiologists. Though, it hasn't entirely because my family says I talk loudly and have changed phones and blue tooth devices a few times due to volume issues. So I won't continue with Tepezza. Per the ophthalmologist, I take one 200 mg Selenium supplement tab daily and eat an anti-inflammatory diet, so my right bulging eye is barely noticeable. But I wear glasses all the time now. So how are you?

[@eheise001]

My friend, i wish you the best to recover

[@rickburns4572]

Thanks Edgar!!

[@liyahmyalanski6809]

Thanks you so much sir for sharing your video. I pray that this medicine helps to heal the problems that your having. I to have TED I was diagnosed in 2013 with hyperthyroidism Graves’ disease. At that time my eyes were burning, hurting, itching, dryness etc. Today I have the still have some symptoms. TED has left me with not the worst looking eyes but definitely not pretty either. I took a picture yesterday looking forward into my camera and just got so depressed. One eye is protruding and the other seems lazy. I just wish it was easier for us all suffering from this disease. I am thinking of asking my doctor for this medication to see if it will help the protruding eye. I’ll definitely be following your page. Praying for you

[@marieosabel9805]

They say surgery will correct the bulging eye. My daughter's eyes were protruding and she has lump on her neck too. She was just diagnosed with graves a month ago. She's taking hyperthyroid meds and heart meds. I let her sleep with eye mask to help her eyes relax. I apply castor oil and do warm compress for 15 mins to help ease the swelling. Then by the way during the day I let her apply eye lubricant/moisturizer drops to prevent dryness and itching...and of course avoid food high in iodine....

[@GreenlawMotorSports]

Thank you for doing this I have Ted and my right eyes 31° to the left

[@rickburns4572]

I ended up ok for now. Not perfect, but I’ll take it. I need to put out a post strabismus surgery update. My advice to you based on my learnings is to find a strabismus surgeon sooner rather than later so you can get their opinion sooner rather than later. I kept thinking the doctor I was talking to was a strabismus surgeon, but they weren’t and that delayed things while they tried other stuff.

[@andreadecarlo6084]

Thanks for sharing your experience, Rick. It helps.

[@China-Sucks]

I have Thyroid Eye Disease and allowed the VA to try the standard (8) $40,000 Tepezza infusions. The side effects are starting to outweigh the minor benefits of the treatment. The MFG (Horizon) won't help you at all. The side effects are outside the realm of my eye specialist. I have just reported all my problems to an interested FDA and just found an attorney with more sympathy than the MFG.

[@rickburns4572]

You can do a google search on “Tepezza lawsuit”. There are plenty of them. You might want to read up a bit if you haven’t already. Good luck.

[@michelledecosse542]

Not a permanent fix, but prism prescription glasses will help manage double vision for TV watching, driving etc. See your optometrist.

[@rickburns4572]

I’m waiting for things to stabilize. My eyes are changing all the time right now. My right eye is even rotated a bit now such that the horizon is tilted and my left eye has really seen an increase in swelling. I think prisms for driving is a good idea. Thanks.

[@ryanwdavies1]

Buddy try looking at a 5 day immu in rboth Boe fast and beat autoimmune

[@johanna134]

I am on my 7 infusion, I haven't see not results only my nose looks smaller ,very expensive medicine.

[@rickburns4572]

@johannabriceno1777 And now? How are you doing?

[@marieosabel9805]

It's not very obvious unlike my daughter's :( she is taking meds now for 1 month.

[@rickburns4572]

Right. I’m lucky that way. My eyes are normally barely open. I hope things work out with your daughter.

[@marieosabel9805]

@@rickburns4572 she might undergo thyroid surgery or radioactive iodine after she graduates... I still have to decide which is better... Anyway... Wish you luck and good health.