u/Particular_Smell_1

Wondering if anyone can give insight on TED relative to thyroid levels at a given time. For context I have had low normal labs (FT4 and FT3) for 9 months and recently slightly lowered my dose of methimazole to 12.5mg average daily (10mg/15mg alternating), previously 15mg daily. I had labs and my FT4 and FT3 are both in the middle of range. I’ve seen a lot of information about symptoms improving when labs are in the middle. Can this improve my asymmetry? My antibodies are still positive, at 216% but trending down.

I’ve had eyelid retraction for the past 6 months or so and although it’s stayed pretty stable, I’m asking for any advice on how I can improve my makeup techniques to try to balance my eyes. For context, my left eye is the retracted eye, my right is mostly normal but appears a bit droopy due to the eyelid height difference compared to the left. My eyes don’t appear bulgy. They don’t usually hurt. Only dry occasionally and I use contacts most of the time.

I used to love playing with makeup prior to graves. For anyone else with this problem, what are you doing to visually balance out the eyes?

Wondering if anyone struggles with low ferritin that’s also taking an iron supplement? I’m taking 28mg of iron bisglycinate daily and my ferritin dropped from 26 to 20 in 3 months. My iron panel was normal, but I’m having trouble bringing my ferritin up.

My optometrist prescribed me restasis back in October 2025 for dry eye. He said I would likely use it for about a month and my eye symptoms would resolve. I never used it as I rarely felt dry eyes. FF to early 2026 I started feeling dry more consistently. Started showing signs of TED in March 2026. Went back to my optometrist and he wants me to use the restasis.

I recently saw an ocular surgeon for a second opinion to diagnose TED and she said not to use the restasis. I saw my optometrist yesterday for something unrelated and he insists I use it and wants to refer me to another ocular surgeon.

Anyone on here using restasis? Were you ever able to wean off of them? My fear is becoming dependent on them since I’m only currently using PF eyedrops.

Does anyone feel like using eye drops makes the dry eye worse? I have been trying to treat my dry eyes more aggressively by using preservative free refresh plus while I wear my contacts and systane complete PF when I wake up and before bed. I went through a few weeks of better eye days where I stopped using drops. Since I have asymmetry, I’m trying to see if it gets better with drops in case my dry eye is making it worse. I’ve been consistent for the last few days and though my eyes feel good when I put the drops in, they feel dry soon after.

Need advice. I had braces when I was a kid and unfortunately was irresponsible and didn’t wear my retainer. My bottom teeth have shifted and I’m considering Invisalign. I’m 34. When I had braces I had two teeth extracted from the top to make room (I have big teeth)

Part of the reason I didn’t wear my retainers was because I felt like gagging when I had them on. I could only stand them for a short period of time. Does anyone have this problem with their Invisalign trays? I’m wondering if my retainer was thicker or more bulky than what an Invisalign tray would be.

Terrified I’ll spend the money and not be able use them. Does anyone experience this? Does it go away?

I’ve needed glasses since I was in 3rd grade. My vision progressively got worse until I was in college and kind of plateaued from there. For the last few years I’ve been -4.75 and -4.00. Last year my left eye was -4.50 and right was -4.00. My glasses are an older pair that are both -4.00. I have Graves’ disease and unfortunately am showing signs of thyroid eye disease (TED.)

Symptoms are: dry, gritty, watery, red, bulging eyes.

At this time I have dry eye and some eyelid retraction on my left eye. My mri showed some mild enlargement of the superior rectus muscle on the left. Im trying my best to use eyedrops and cooling masks and all of the things to help my eyes.

One thing I’ve noticed is that I see really well with my glasses. Personally I don’t like how I look in them so I never really wore them unless I was getting ready for bed. I take my glasses off to be on my phone. I also have slight astigmatism on my left eye but I wasn’t corrected for it so I want to know if I can do anything to avoid correction for that as well.

Are glasses easier in terms of “training” the eyes? I’ve been wearing contacts everyday since I was in 6th grade. I’m 34.

It’s my understanding that when your antibodies are lowering, you’ll be able to taper your dose of methimazole to eventually nothing once the antibodies are undetectable for over one year on labs.

I’ve been taking 15mg of methimazole daily since August 2025 and before that I was on 20mg reduced from 30mg when i was diagnosed. I feel like I’ve plateaued in terms of tapering the dose because my levels are well controlled and though I feel pretty good I can’t help think that my antibodies are probably still really elevated if it’s taking so much medication for me to stay controlled.

Recently I’ve developed TED. I would say roughly about 4 months ago. I have one retracted eyelid and the other is droopy and my eyes are dry. I’m driving myself insane trying to find out how to fix my eyes. I was really happy to finally feel good since my diagnosis and I got smacked in the face with TED.

I saw a specialist today for suspected TED and I don’t know what to make out of that appointment. The specialist was recommended by my endo. My appointment felt rushed, they dilated my eyes and said everything behind the eyes looked good. Eye pressure was good as well. I had an mri that showed mild superior rectus enlargement in left greater than right. No exophtalmous, or other findings of thyroid obitopathy.

They want me back in 6 weeks to monitor changes and said tepezza is the best option I have. I’ve looked this way for the last 3-4 months and have recently been feeling less symptoms overall. I’m able to wear my contacts longer without feeling dry. My eyes are less sensitive to light. The morning swelling has not been as bad.

Am I crazy for thinking there are other alternatives to tepezza for me? She said my case was mild to moderate. I don’t have double vision, headaches, eye bulging. My symptoms are swelling and dryness that fluctuate, and asymmetry that stays pretty consistent.

They want to run a color perception test next time. Are there any other questions I should be asking? They didn’t offer oral steroids. Only tepezza or surgery.

Want to add that I saw this specialist as a self pay, as they did not take my insurance which was fine, but I think Influenced the need for a 6 week follow up.

Diagnosed with graves March 2025. Been on methimazole since. Antibodies trending down and feeling good. In Jan 2026 I went to the ER for a kidney stone. I didn’t know what was happening so I had an abdominal CT (no contrast) to diagnose the stone. A few weeks later I felt a small lump during my monthly self breast exam. That prompted a diagnostic mammogram. All was well.l, just a cyst, but developed swelling and noticeable asymmetry about two weeks after the mammogram.

Could the scans have caused TED? For the record I haven’t been officially diagnosed with TED, although my endo is certain I have it. I had an mri that showed superior rectus enlargement on both eyes, but more on my left. Everything else is normal. My ophthalmologist says I don’t have it, and prescribed drops for dry eye. Seeing a TED specialist next month for a second opinion.

I really don’t know what caused my eyes to change if everything was going so well. Aside from my unrelated medical episodes, my graves has been well controlled with methimazole for over 9 mos.

I follow a research group on FB and one of the admins gives a lot of information regarding iodine and how it can be hidden in a lot of foods and products we use.

I’m still navigating how to lower my consumption of iodine by limiting dairy and processed foods, but does anyone have any insight about topicals? For context I’ve always loved makeup. Now that I have graves (and possible TED) I wear a lot less, but I wonder if that is also hurting my progress

For those of you who reached remission. How long did it take? Did any of you develop TED? If so, did that go back to at least somewhat normal? I’m a year and 3 months into treatment. Started on 30mg methimazole, (10mg 3x daily) I’m down to 15mg once daily. I went through a hypo swing that made me feel absolutely awful last summer. My numbers are all trending low normal, but my endo tells me my dose is a rather high dose to keep me at maintenance. The goal is to lower it if I plan to take methimazole long term.

My goal though, is to reach remission. I have no idea how to do that. I take my meds, I try to listen to my body. I workout. I sleep well. I had celiac testing that came out negative. I’m having trouble with my eyes. The upper lids are swollen and my lids look uneven. No proptosis, Ted specialist appointment in a few weeks.

Any suggestions or success stories would be great

Posting on here in case this has any relevance to graves or if anyone can relate. For many years (probably 7-8) I’ve experienced mid cycle spotting around ovulation week. I’ve had numerous ultrasounds and paps all clear. I was told it is likely a hormone imbalance.

I started experiencing graves symptoms around 2024. I went undiagnosed for almost a year. During that time, the spotting stopped. It started up again 6 months after I was on methimazole, and the first time I was euthyroid since starting meds. Since then, I’ve spotted almost every month around my ovulation, but this month was very faint. Wondering if anyone has had a similar experience?

For context I also want to add that I am very active and I strength train 4-5x a week. My gyn suggested I cut back on training, but I haven’t because I don’t think the two things are correlated.

I had an orbital MRI, with and without contrast to assess the asymmetry I’ve been showing for about two and a half months. The results showed superior rectus enlargement in both eyes, but mainly in my left, which is slightly retracted. My right eye is slightly droopy to offset the difference in the other eye. I don’t have any other notable signs of TED at least on the scan. I do have visible swelling especially on the left side, and dryness that fluctuates. I’m a contact lens wearer and have been since I was a kid. I’ve been trying to wear my glasses at least around the house more.

Currently using PF eyedrops and ointment at night and occasionally doing warm/cold compress but nothing is changing. I can’t say it’s getting better or worse which I guess isn’t all that bad. I can still see and that is a huge win. I started selenium about a month ago. Before the changes started, I only had occasional dryness. I was sick in January and I think that triggered me.

I’m trying my best to stay on top of everything. My levels are stable and have been for over 7 months, but they do tend to run low normal.

Any suggestions are appreciated.

For context I had my daughter when I was just a teen. We grew up together. I was a college student when she was also starting school. She graduates high school in two weeks. I am in shambles as my entire routine for the past 13 years revolved around her and school. For many years everyone would ask when I would have more children and would proceed to ask what I would do once she was older.

Though I was firm on not wanting more kids, I have been reflecting on how quickly the years went by. I attended every field trip, class party, school play and parent meeting.

She will be attending college and will commute, meaning she will still live at home for the time being. I feel a bit dramatic being so sad about this but I’m reflecting on how many years went by and how many memories we created. I am happy for her to go on new adventures but I am also sad for me. Part of me feels like I’m losing a huge part of my identity. I was 16 when she was born and she is now older than me when I had her. All I can remember is being her mom. I don’t regret having only one child. I firmly believe the bond we have was built on our circumstances and she is truly the most amazing young woman.

How have you parents of only children coped with the idea of sending your baby off into the real world and how are you doing emotionally?

I recently received MRI results to help diagnose TED related changes as I’ve been experiencing dry eye and puffiness/asymmetry. My results showed only mild superior rectus enlargement on both eyes but more pronounced on my left. I’ve been trying warm/cold compresses to see if they help the asymmetry and overall symptoms. After I use cold, I feel some tightness/pressure. Does this mean it’s working? Is it making things worse??? Can’t see a Ted specialist until July.

I recently saw my endo who upon taking one look at me said I have TED and my left eye was bulging. Personally I know my eyes have changed, and that’s why I booked the appointment. I didn’t think they were bulging, but my left eye looks more open than my right and comparing the two, my right eye looks more closed or smaller than the left.

Anyway my mri results came back showing:

Mild enlargement of the superior rectus musculature, left greater than right.

No other findings. My endo says this can still be TED and asked me to follow up with a specialist but I can’t see a specialist until July.

Does anyone have any insight on what I can do if anything to help my eyes get better? I have on and off dryness and my eyelids are uneven but everything else is okay at this time.