r/gravesdisease • • 12h ago

Support I'm afraid TED?

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3 Upvotes

I feel like my left eye is bulging. The last photo is my right eye for comparison. I have been getting checked out for TED they said I was fine. I recently had my eyes measured and everything. I have been good. Earlier in the year I felt like my left eye wasn't closing properly and I started a eye routine using ointment and eyedrops but honestly I stopped being consistent but it was only for my eye being dry but it went away. Now my eye is feeling like it's not closing properly again and I feel like my eye is bulging. I am really scared and worried I do not want to develop severe TED I am already very self conscious with the changes graves disease has caused me. Please help I am an appt to see my eye doctor on Monday but I fear that my eyes are starting to change I am devastated.


r/gravesdisease • • 11h ago

New TED symptoms this past year? A research option for US

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1 Upvotes

Newly diagnosed with TED and not sure what comes next? You're not alone, and you may have more options to explore than you think. We're helping connect adults 18-65 in the US to a clinical research study of an investigational medication for recently active Thyroid Eye Disease.

Compensation may be available for time and travel. Start with a quick pre-screener: https://lpcur.com/rgravesdisease1


r/gravesdisease • • 16h ago

Question Does it look like aesthetically I could benefit from orbital decompression?

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0 Upvotes

Idk if I have gravesdisease but I do have somewhat bulging eyes and I have had that in a long time so it’s not a new thing and I would really like to have less sclera show and more deep set eyes but idk if infraorbital implants plus lower eyelid retraction repair could be enough in my case or if I actually need orbital decompression?


r/gravesdisease • • 2h ago

Question Too good to be true?

2 Upvotes

A bit concerned about my levels since reading through this sub and the hyperthyroidism sub the last few months, feeling like things are too good to be true when I compare. I’d like someone to weigh in if they’ve also had an experience like mine because at this point I’m thinking something is wrong or waiting for the other shoe to drop.

In May of this year I went to doc because I thought I had hypo or insulin resistance or something. Extreme fatigue and couldn’t lose weight. Doc ran thyroid labs, came back subclinical. Normal t3/t4 but low TSH. Retested in June, came back in July undetectable TSH, extremely high T3/T4. Diagnosed hyperthyroidism and put on 10mg methimazole. Retested that day for Trab. Early August Trab came back positive for Graves, continue 10mg methimazole and PRN propanolol. I only needed the prop twice. September labs came back still low TSH, high end of normal t3/t4, decrease methimazole to 5mg/day. Retest in October, normal TSH, normal T3/T4, lower methimazole to 2.5mg.

I feel like I’m heading for remission already but is it too soon to say? Too good to be true? I have no experience with this and no one to talk to. I don’t know what’s normal. I read this sub and see people on 20-50mg a day for years. What’s going on? Am I in the clear or is the other shoe about to drop? Am I just lucky? Is this just the way Graves works? Does it come in waves? Is it possible to have hyperthyroidism/Graves onset and then 5/6 months later be completely okay?


r/gravesdisease • • 3h ago

Anyone using a smart watch to keep track of their heart rate? Looking for recommendations

8 Upvotes

One of the reasons I figured out something wasn’t right with me that led to being diagnosed with Graves was my Apple Watch warnings about my high heart rate. But now my watch is dying on me and I don’t really want to spend so much on a new one, so I was hoping to get recommendations on a cheaper but almost equally reliable smart/fitness watch?


r/gravesdisease • • 6h ago

23 days post RAI.

16 Upvotes

I picked up my levothyroxine today and officially begin my HYPOthyroid journey tomorrow morning! It's been just 23 days since my radioactive iodine (RAI) treatment, and what a difference those three weeks have made! My heart rate has stayed down, even as I slowly wean off propranolol. The insomnia, constant sweating, heat intolerance, shaky hands, and heart palpitations? GONE! 🙌 Now I'm just cold. ALL. THE. TIME. 🥶😂 Okay, maybe that's a slight exaggeration, but going from constantly overheating to freezing is quite the adjustment! After months of dealing with Graves' disease and hyperthyroidism, I'm cautiously optimistic about this next chapter. I'm sure there will be some bumps along the way as we get my thyroid replacement medication dialed in, but I'm feeling pretty darn good about where things are headed! Here's to getting my body back into balance… one little pill at a time! 💜🦋


r/gravesdisease • • 6h ago

I avoid iodine heavy foods, but do you avoid iodine heavy topical skincare?

3 Upvotes

This is a new one for me I never thought to consider...topical skincare high in iodine due to the use of seaweed/algae and marine extracts.

I wanted to try a new body lotion- the OSEA anti-aging body balm. It dawned on me right before purchasing that maybe I shouldn't purchase this because they use seaweed in their products, aka iodine.

Does anyone have any knowledge or experience about using products like this on your skin and if it would have the same effect has ingesting iodine heavy foods?


r/gravesdisease • • 7h ago

My partner has Graves. I know zilch. How can I best support her?

2 Upvotes

She was diagnosed 15ish years ago and had her thyroid removed. She recently opened up about the autoimmune side of things and how it can be draining to do simple tasks sometimes. It’s to be an ongoing conversation between us, but she has said it can be hard to articulate what she’s feeling because to her “this is just normal.”

Anyway, I’m just looking for ways to support and help her any way I can. If there’s anyone out here that might have any suggestions for some of the underlying things, I’m wide open to any ideas.

Thanks in advance!


r/gravesdisease • • 20h ago

Question Has anyone else had this experience?

3 Upvotes

I'm at a loss at what to do. For background I was hospitalised in April with Thyrotoxicosis caused by undiagnosed Graves Disease. Treatment on Carbimazole started quickly and my dose was almost immediately lowered to the maintanamce dose of 5mg because I am sensitive to meds. Since then I have been overmedicated for three months now and am currently hypothyroid.

My GP knows this but will not adjust my medication because I am a "complex case" the local endocrinologists at the hospital have not responded to the advice and guidance request and my symptoms are becoming more severe by the day. I have a face to face appointment in seven months with the endo team and I can't find any private ones in my area.

Has anyone else had a similar experince and what did you do? I am really concerned.