Thyroid Graves Disease: Anyone else?

I have Thyroid Eye Disease, or I guess also called Graves Eye Disease. I was diagnosed May of 2021. I have had the Tepezza infusions, which were a temporary help, which lasted for less than 6 months. But now I am back where I started. I had my thyroid removed a month ago. Now just waiting for my body to adjust without a thyroid. I am unable to participate in many activities because of double vision, I have lost my independence. And self-conscious because of my looks. I wear sunglasses whenever I am out of the house. I was a pescatarian but recently read that fish and seafood were some of the worst foods for you to eat because of the iodine. I have had to educate myself on this disease and have been lectured by doctors for doing so. Even when I told them I only read from reputable websites. To say that I am exasperated, is an understatement.

@rose47 I’m so sorry that you have thyroid eye disease. It must be so difficult in your daily life. I included a link to Mayo Clinic’s information because it talks about treatment for the eye disease.
https://www.mayoclinic.org/diseases-conditions/graves-disease/diagnosis-treatment/drc-20356245
Are you seeing an ophthalmologist for the double vision? I had it when I first got my autoimmune disease. Through my eye doctor, i was able to see an eye therapist who gave me some exercises for my eyes.
What treatment are you now getting for the eye disease?

Hi Becky, I'm not currently getting any treatment. See my Endocrinologist next week and Ophthalmologist the following week. My body needs to adjust to being without a thyroid, it's pretty out of whack right now. I hope to find out what my next step will be after seeing my doctors. No one has mentioned an eye therapist but am adding that to my list of questions for my doctor, thank you. I am hoping to connect with others that have this disease. No one understands what I am going through, even my husband, as wonderful as his is, cannot understand. It has been a very long 2 years since I was diagnosed.

@rose47 Oh, goodness, I sure hope you can get the help you need soon. If you ask for help with your double vision, the correct term for the therapist is ‘vision therapist.’ Mtn eye doc also told me that you can get corrective lenses for double vision. Mine cleared up soon so I didn’t need the glasses.
Will you be sure to tell me what the endocrinologist has to say? I’ll keep my fingers crossed!

Hi Rose47, I had Grave Disease when I was just 23, it nearly killed me before my doctor saw me and knew immediately what was wrong.
From there he sent me directly to the specialist at the hospital who examined me and ordered radioactive iodine from St. Louis, it was flown by plane to our hospital in Seattle. It came in a special container and I was placed in a room with a special gown on too, from what I remember I had to open the box and take the medication before they came back in to get me. My hair got thinner too after taking the medication, I had many mood swings My eyes are big to this day, like Marty Feldmans, he had it too!
I been on a thyroid replacement since. Now I have a few other even rarer disease few heard of even the Neurosurgeon I saw yesterday said that it was OUT OF HIS Scope, and promised me that he would take time to learn about it, called Nutcrackers Syndrome a vascular disorder just had to cataract surgery Eye doctor said that it was probably due to having Graves Disease, I’m only 62! I saw double vision on and off at first, but check with your doctor it may be your hormones need more adjustment and then you’ll see better

Bless your heart. I empathize. I have both Graves Disease (Hyperthyroidism) and Hashimotos (Hypothyroidism). I am on methamazole 5 mg daily and it has helped. I alternate between being hypo and hyper. My hands and feet can be cold...........then I'm burning up. I am very heat intolerate to the hot summer months. I have palpitations when I am in a flare, extreme fatigue and it also has promoted arthritis almost all over. I can feel "edgy" for no reason. Thyroid is very hard to treat and you have to get an ultrasound of your thyroid and bloodwork regularly to stay on top of it and have a very good Endocrinologist that will listen. God Bless.

I found your comment interesting because I was just diagnosed with Graves’ Disease in November. It was a sudden onset seemingly triggered by my second Pfizer Covid booster shot. I was put on Methimazole 10mg (once a day) and took it for a couple of months, and I swung over to slight hypothyroidism, and my dosage was lowered to 5mg (once a day). I’ve only been on 5mg for a few weeks now, but I’m beginning to wonder if I’m back to hyperthyroidism because of how I feel. I go back to the doctor in a few more weeks and should know more then.

My question for you is how long have you had your swinging condition? And were you told it’s okay to continue in this fashion without taking more drastic measures such as radioactive iodine or surgery?

Bless you. I'm sorry this has happened to you. I would say I have swung back and forth for about a year. I was diagnosed with Graves last May when my TSH was low, but have had Hashimotos since 2016. They have not mentioned any radioactive idodine or surgery. They do an ultrasound about 3-4 times a year of my thyroid. God Bless You!

I have an update. As of now, my Graves' Disease is in remission. Everything returned to normal, and I no longer have to take Methimazole. It's still a wonder if my Graves' resulted from the second Pfizer Covid booster shot. I'm wondering how many others have been diagnosed with hyperthyroidism/Graves' after a booster shot and if they, too, have returned to normal after a brief treatment period. Only time will tell if the Graves' Disease will return. I am now on a schedule of returning for blood tests every few months.

My husband and I both have Graves, diagnosed several years apart with mine starting in 1975. After two years of hell, I had radioactive iodine and have had wildly varying TSH levels since. He tried a year of anti thyroid drugs before radiation treatment and developed painful bulging eyes with double vision during that year. Neither the Endo nor the ophthalmologist had any knowledge of treating his eyes and he was miserable. A large ophthalmology practice with specialists and surgeons in a big city was the only hope, and we were fortunate to find one. He first had strabismus surgery to correct double vision by reattaching the muscles behind the eyes, then eyelid surgery to cover the eyeballs and stop the lashes from scraping them. His eyes are still buggy, but vision is much improved. Don’t give up! Treatments are available!