Dormant(?) TED and Surgery

[lau99]

Hi again everyone. I feel a little bad that I keep coming back here to basically moan about all my thyroid drama, so I hope my posts aren't becoming too much of an eyesore 😅

I know this should really be some of the least of my concerns, but having thyroid issues in general has really screwed up my self esteem and body image. Besides not recognising my body much anymore since my thyroidectomy, my eyes have become a big insecurity as well. When I was hyper, I ended up with moderate/severe thyroid eye disease which left my eyes bulgy and constantly bloodshot. Now that I'm in the dormant stage of TED, my eyes aren't painful or red anymore but they still protrude just as much as before, and i also have very fatty upper eyelids that look swollen all the time. I'm a bit scared to even be contemplating surgery for them, A. because of how regretful I am that I had the thyroidectomy in the first place, and B. because I'm scared that touching that area could cause my TED to come back. I'm just so desperate to look and feel normal again. Lately I've been feeling the same desperation I remember having in the months leading up to my TT. I hate looking in the mirror or at photos of myself; all I see is the effects my autoimmune disease has had on me. I just turned 21, so i feel like I should be in my prime and enjoying my youth but I feel so broken down from being/looking unwell all the time.

Has anyone here ever had a blepharoplasty / orbital decompression after having TED? What has your experience of it been like?

[shaws]

I am sorry you are distressed at present due to your eyes and I think anyone would feel the same if they also had your problem.

Members who have TED will respond when they read your post but, in the meantime, this is a link that may be helpful.

patient.info/hormones/overa...

[Rush2112]

Lau99 it must be tough

Going through this at 21 I had Botox inside my lids by a

ophthalmologist For acupressure of days I looked like a hamster but they looked a lot better when lid covered more of the eye

[lau99 in reply to Rush2112]

Thank you for the kind words. I'm glad to hear that the botox helped you in the end. I seem to have the opposite problem that my eyes look rather sleepy and half-lidded..

[tattybogle]

Please don't feel bad about coming here moaning, that's a big part of what we're here for

I'd be moaning too if i was in your position. Sorry i don't know much about eye surgery, but i do know life was much more fun at 28 than 21 anyway, you can have much more fun , and you're better at it !

[lau99 in reply to tattybogle]

Thank you, tattybogle. I try not to think about it too much, but it's hard sometimes to not feel depressed about everything..it feels like there's always something there, like my thyroid disease is just determined to bring me down in any way it can. It makes me feel so down to think of all the years i've been ill because of this and I'm still not better after giving up an entire organ.

Sorry!! being a bit depressing again 😅

[pennyannie]

Hey there again,

How brave of you to offload this issue - my TED only developed after the RAI and no one told me this treatment could exacerbate these symptoms.

The psychological impact was enormous and I hid from people behind big fashionable sunglasses. It took me a few years to love myself again and can be an ongoing issue when I feel insecure.

And my issues were considered not severe enough for any treatment :

Sending a big hug, despite social distancing :

[lau99 in reply to pennyannie]

Thank you, Penny. I just feel so sad about everything sometimes, like as if my thyroid disease didn't mess with my health/life enough, it also has to mess with my self esteem just for the fun of it I just want to do the right thing for myself, but I don't want to regret anything the way I regret my thyroidectomy.

[pennyannie in reply to lau99]

Hey there Lau

Things will turn around for you, once you find the right medical support for you.

Not sure where you are with all this - just want to read someone has prescribed you something other than just Levothyroxine.

[lau99 in reply to pennyannie]

Sadly that isn't the case at the moment...my dose of Levothyroxine has been reduced, even. I'm still holding out hope that maybe it's because my endo is trying to discern whether or not T3 would be suitable for me, but I'm still only on the Levo at the moment.

[pennyannie in reply to lau99]

I didn't really want you confirming this - though I knew you would !!!

[lau99 in reply to pennyannie]

I know, I really hope that things will start looking up for me soon. Thank you for the ongoing support though, Penny. I really appreciate it x

[Karen321]

I have Graves and TED but still have my thyroid. My Graves is currently unstable so on increased carbimazole. My TED is currently inactive but have been left with protruding eyes and fatty deposits where my eye sockets used to be and bags under my eyes 😕 I’ve been approved for Surgery to remove fat above eyes but I’m holding off as I’m frightened of something going wrong plus the fact you are sedated but awake whilst they do the procedure 😳. I’ve kind of got used to the way my eyes look now but it has affected my self esteem massively as people used to remark how beautiful my eyes were. My best advice would be to hold off on surgery until you are in a better place both physically and psychologically as it’s never a good idea to make a major decision when you are in a bad place xx

[lau99 in reply to Karen321]

Thank you so much for your input and advice. From the sounds of it, we have very similar eye complications, too. Even my own family members who know about my Graves comment on how my eyes look, and I look back at photos of myself before all of this and hardly look like the same person anymore. Your advice regarding not making any drastic decisions while I'm in a bad place really resonated with me, and I wish I'd had that advice before going through with my thyroidectomy. I will definitely take that on board and just try to weigh out my options more carefully first. xx

[Buddy195 Administrator]

Hi there,

I too have TED & feel self conscious about my eyes, especially in the morning when swelling on upper lids is worse. Sunglasses & a baseball cap help when I’m feeling low. I would hold off any surgery/ cosmetic procedures until you are certain that your eyes are stable. It’s hard to look at before & after photos when you have TED - I try not to do this as it knocks my confidence. Big glasses & bright lipstick help me. Best wishes to you! 😎

[lau99 in reply to Buddy195]

Thank you for your response x I am relatively certain that I'm stable (or at least that was the impression that my ophthalmologist(s) gave me at my post-op consultation with them after my thyroidectomy). They told me that if I ever felt like I wanted to discuss surgery, they'd be happy to see me again. I haven't forgotten that since, and some days I look at myself and really think I should take them up on that offer...That being said, my new endo recently said that he'd advise against me doing anything for fear of triggering TED again since my Graves was quite aggressive. My eyes just look so ridiculous when I smile...I feel like I can draw a little bit of attention away from them with makeup, but that's only if I keep a straight face. Even then, my eyes just look so sleepy.... You're right, though - I'll definitely make it a point to stop looking at old photos and feeling sad xx

[Awong]

Hi Lau,

So sorry to hear you're feeling awful. I have had severe TED for just over two years now. I totally understand what you are going through. My esteem went rock bottom.

It was pretty severe in the beginning cause the swelling and protrusion got so bad that my lower lashes were poking and rubbing against my eyeballs. I had to wear sunglasses all the time, always felt reluctant or sometimes embarrassed to go to social gatherings or meet new people, hate having photos taken, eyelids don't shut properly, dryness, light sensitivity, bulging side profile, tearing, the list goes on. I also had other hyperthyroid symptoms to deal with and I was just sick, exhausted and stressed. Don't know how I juggled all that and worked. To top it off, I had two episodes of eye infection due to the dryness and lids not shutting properly which was awful and painful. Eventually my opthalmologist suggested I do a lower lid surgery (epiblepheron surgery) to remove some fat and create a crease so eyelashes face 'outward' again. Best thing I did. I did not realise how much damage and swelling the rubbing of lashes contributed to the severity of my TED. I mean, the symptoms didn't go away completely but it improved ALOT and slightly improved appearance over time since eyes are no longer red, inflamed and me not squinting all the time anymore from tears and irritation improved appearances too. Few months later I had a thyroidectomy...that went well too. Now, 8 months later, I have an appointment with a surgeon at Moorefields next month to discuss orbital decompression surgery. A bit nervous but excited to finally do something about the appearance of my eyes and possibly fixing the remaining symptoms that I have and just putting TED behind!

I totally get what you mean about being young and in your prime time etc. I felt exactly the same but for me it was more about my career and plans to start a family in near future etc. I'm young but felt like this disease was delaying all my ambitions and goals to live the lifestyle that I want. My appearance changed and I gained weight since my thyroidectomy but I decided in the end to take control and be positive. I try to exercise everyday and refuse to believe it is impossible to lose weight after a thyroidectomy, as many believe, and it's working! I continue to push myself live life as I normally would pre-TED without hesitating due to low esteem/confidence. Once you're in that mindset, you will feel people and surroundings become more positive too and many issues you thought were issues might not have been that big of an issue anyway. Don't let TED stop you from living and having fun! Hope my experience helped and that you feel better.

All the best x

[lau99 in reply to Awong]

Thank you so so much for the kind words, and for sharing your experience. It's such a blessing to hear from someone who gets where I'm coming from, and has seemingly begun to come out the other side of it, too! I'm so sorry to hear about your ordeal with Grave's...it's such a wicked disease sometimes. It's amazing to hear that you're doing better now. I think I would at least like to discuss potential surgical intervention, be it full blown orbital decompression or just a day-case blepharoplasty. And you're right - I reckon mindset definitely plays a role in everything. I too have experienced some weight gain since my thyroidectomy which was completely alien to me, and my feelings about my appearance have been quite unfavourable in the past year (especially with others' hurtful comments...) I have recently had my first therapy session with a Psychologist that specialises in mental health treatment for those with chronic illnesses, so hopefully I too can start to regain control of my own life

I hope you continue to feel better and better x