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Thyroid UK
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15 months Post RAI with Graves Eye Disease.

Hello Everyone,

I have visited this blog and I just happened upon HealthUnlocked by chance, so I thought I would join.

My life has been a whirlwind.

I was clinically diagnosed with Graves' Disease in 2008. It was in 2008 that I met my husband. By clinically, I mean I was just diagnosed through a series of blood test results by my family physician. I was then referred to a Specialist who told me nothing, but prescribed me Tapazole (Aka Methimazole) He never told me anything more.

I took the Tapazole and went on with my merry life. I lost a lot of weight. I thought I felt great. I was no longer taking Tapazole. Then for some reason, I had blood work completed again and my family physician said that my thyroid levels were high. So he sent me to another physician and also prescribed me more Tapazole, a higher dosage. This next doctor hardly spoke to me other than he noticed I was shaking. Shaking that I couldn't control. He prescribed me meds for the shaking to take with the Tapazole. Time went by again. I went back to this same specialist after more blood work who in turn decided to send me to Endocrine Specialist. I had to travel 2 hours one way to see her. She didn't tell me much either. Even when I told her I understand what was going on with me, but that I was tired of all these appointments and taking pills. Every appointment with her, I left lost. Still no further ahead. She would always measures my eyes and I never understood why.

Things eventually got really bad for me and fast forward to 2015, I had gone to the Emergency Room with a severe Panic Attack. One of the many I started having often. I told the doctor about everything I was going through and how miserable life was and that I just couldn't get any help because it felt like things kept getting worse. I was finally referred to my 'savior', a Internist. He met me on a Saturday at the hospital. Now, picture a woman sitting up on an examination bed, wearing a tank top and sweating profusely. I couldn't sit still so I was constantly shaking my legs and feet, fiddling with my hands, I couldn't smile because I was so irritable and impatient. I was breathing heavily and my skin was purplish and my hair was brittle. As well, my eyes were huge. He took one look at me and said "You have Graves Disease!" Well I already had a clinical diagnosis and I told him what I was taking and about all the past specialists. He was so angry that I was left for so long in my condition. He immediately scheduled me for the actual test for Graves' Disease to have an 'Official Diagnoses' and to know how much Radioactive Iodine I would need. He said that once I had the RAI Treatment, I would feel 100% better then how I felt at that moment that I sitting in front of him. He also told me that I shouldn't have been on Tapazole for so long because it can cause Osteoporosis and Dementia later in life. Nobody informed me of this.

He told me that my body was working 75-80 % more than a normal person's body. Hence, the shaking, temperature changes and all the other side effects I was experiencing. Together, we decided on the RAI because my body doesn't do well with surgery and at that stage in my Graves' Disease, I probably would have had infection or worse.

I have been 16 months POST RAI and I feel 100 % better than that day in his office, however, I was left with Graves' Eyes. I'm blind in my right eye and my sight is constantly changing in my left eye from the pressure behind my eyes and the bulging of both eyes. I have pictures on my blog and my blog has gone into some details about my struggles.

You can find my blog here: mybeautifullifestruggle.blo...

I have a Ophthalmologist Appointment for a consultation to have Orbital Decompression Surgery in March 2017.

Has anyone had this Orbital Decompression Surgery? Currently I'm blind in my right eye. Has anyone else experienced blindness from bulging eyes? If so, did your eyesight come back after this surgery

How do you feel about your eyes now?

I hate my eyes now. I miss my beautiful big eyes. And I hate the bulging crazy eyed girl that stares back at me in the mirror.

I'd also like to say that currently my Thyroid is stable. I'm neither hyper or hypo. I do have to complete bloodwork every month to make sure that my levels are normal. I do not take any medication for my thyroid.

Thanks for reading.

Mystic aka Shelly

Please disregard any typos. It's late here and I'm watching a documentary as well. lol

9 Replies
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Welcome Shelly!

I'm glad to hear that your thyroid issues are stable but it's sad to hear about your loss of eyesight in one eye. Thank you for sharing your story. I only joined this forum recently and the people on here have been absolutely fantastic. I had a full thyroidectomy 3 weeks ago, so still recovering. Still waiting for the histology. Hope others can answer your questions.

Good luck!

Tamzin27

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The link to your blog is missing.......

Xx

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sadly RAI is well known for triggering TED which is why i always tell everyone to run a mile from it

my husband had graves and was advised very strongly NOT to have RAI by the endo so had surgury instead

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I had Graves Eyes prior to the RAI. And I was also blind in my right eye prior to the RAI. Because I've had bad reactions to surgeries and healing, having a thyroidectomy was not advised. Different strokes for different folks. I'm glad I had the RAI. My thyroid is currently stable. I didn't have to endure another surgery or infections.

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Lets hope your thyroid stays stable bcos often NDT is best option after rai or surgury

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Sorry, what is NDT stand for?

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natural dessicated thyroid

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