After months of being messed around, I finally have my opthalmology appointment with Brighton Eye Hospital, for Thyroid Eye Disease.
My eyes are bad. They're not big, bulgy, and alien looking like the Google pictures that come up for TED but they are swollen, sore, watery, red, and give me regular headaches. When I'm tired, I feel myself going very slightly cross-eyed and seeing double.
I understand about active phase etc. And I have looked into the treatments quite bit.
My question is a bit more vanity related. Can anyone tell me if they will remove all this excess baggage on top of my eyes once they have settled?
It's not only incredibly ugly but it pushes my upper eyelids down and makes my eyes feel really heavy. But that seems like it would be considered cosmetic by the NHS. I really want it fixed.
Pictures one year apart. Please note I am 35, not 85, despite what my eyes now look like!
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Opposite
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Hope you get some answers quickly. Please continue to share what you find out as I’m just starting to learn about TED and wondering if it might apply to me. Been having blurred, double vision for six months now despite three different exams and prescriptions for glasses during that time. Blepharitis as well. Had to switch from Armour thyroid to Levo when I moved here from the US and am not feeling great. Good luck!
I found opticians quite helpful & thorough, but doctors even specialist can be very poor at treating TED, but I have hyper without autoimmune drs never wanted to diagnose it.
NHS will aim to manage symptoms until confident active phase over & thyroid permanently under control. If the eyelid heaviness impact vision NHS would have duty to treat.
Google shows the examples of worst cases. & eye appearance do calm down.
I don’t know if you’ve previously been given similar advice but these are things you can do to help eyes.
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind selenium rich food can take you over the maximum requirement.
*Preservative* free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I recently been using ocufresh carbomer lubricating eye gel - this is a light gel melts quickly.
For when eyes are dry I use warm compresses (eg wheat bags, microwaveable gel masks). Very gentle massage toward lash line, can use fingertips or carefully with roller ball tool or gua sha facial stones. Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow.
This protects eye and helps retains the water.
If swollen, inflamed & more painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found the puffiness & swelling reduced when I switched.
Serious complications with vision or changes to eye appearance are very rare. Don’t Google and panic over worst case scenarios, they are always the most severe examples.
It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks.
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating. So the sooner your levels are stable & under control the better for your eyes.
TED charitable trust is an Informative site about TED & symptoms. They have Facebook page & you can join.
Thank you for your kinds words and advice. I am follow a routine consisting of all all the above, with a different choice of eye gel and have found it to be very helpful. It's always good to have this advice posted for everyone.
The opticians were very kind and wrote to the ophthalmologist to try and expedite my appointment but they didn't actually do anything to help except change my glasses prescription.
TEDct have also been wonderful with advice but I believe the only people who can actually do anything are the ophthalmologist. Well, I hope so. I hope I'm not just kidding myself that they will be the answer to all this!
Unfortunately my thyroid levels continue to fluctuate due to poor care. My Endo thinks I have Graves disease and wont treat Hashis until I'm Hypo. According to my antibody results, I have Hashis but am suffering a Hyper phase.
If levels fluctuate unexpectedly an option is Block & Replace. Instead on adjusting or titrating carbimazole doses. You take a higher blocking level of antithyroid and levo replacement to restore levels. This has stabilising affect. But the downside is it completely masks what’s naturally going on, you could be hypothyroid & need no antithyroid - only replacement & you’d not know.
I am prescribed Carbimazole but my thyroid levels dropped so quickly, I had underactive levels within a couple of months, after having a result of 260+ T4 and was advised by this group to stop taking it.
(Previous results on my profile if you're interested)
I'm due another blood test but my thyroid levels were at a close-to-normal level after a few weeks off meds.
The advice on here tells me ill eventually be Hypo.
I actually feel quite good at the moment. Still getting those super hot flashes but nowhere near as often, and I have a lot more energy, and no more palpitations. My eyes are my biggest problem.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
Do take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.
Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group.
Please be reassured, my eyes now look nothing like they did with active TED, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world.
I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.
As you are doing, keep taking photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
I also take lutein & zeazanthin for overall eye health, so this is worth considering if you have any concerns about your vision.
Thank you very much for all this. I have been following most already but will also incorporate lutein & zeazanthin.
It's great to hear your eyes are a lot better now. I'm definitely in the active phase and they are completely different one day to the next.
I know it's vain of me but the swelling is bothering me most because when I have a 'good' day, I am still left with baggy eyelids (pictures here) and I imagine they are now permanent. My eyes were the one thing I used to be happy with!
I do believe the other symptoms will need to be treated but this doesn't necessarily matter to anyone but me.
No treatment options yet, this will be my first appointment with opthalmology and my Endo won't discuss my eyes.
I was misdiagnosed with Graves, largely on ‘hyper like’ symptoms (plus the TED) but forum admin here encouraged me to push for correct antibody tests and I found I’m actually hypothyroid with Hashimotos. For me, getting both FT4 and FT3 optimal helped considerably. I needed combination treatment (Levo plus Liothyronine) to achieve this. It was my TED specialist ophthalmologist who recommended this treatment to my endo.
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab
TSH receptor antibodies
TSI
Thyroid-Stimulating Immunoglobulin
TPO & TG antibodies may be Graves or Hashimotos.
TPOab
Thyroid Peroxidase antibodies
TGab
Thyroglobulin antibodies
I wouldn’t consider any surgery options until the active phase is over. You may be surprised how much they calm down once thyroid levels stabilise. My swelling reduced significantly, but I’m still left with slight asymmetry and significant eye dryness, which I can cope with.
I believe I'm in the same boat. Diagnosed with Graves but antibodies show Hashis.
My Endo isn't interested in treating anything but Graves. I stopped taking my Carbimazole and my thyroid levels were close to normal when last checked. I am due another blood test.
I feel good at the moment. I am expecting to become Hyper but for now, I'm okay. I just need my eyes sorted. I do hope I can get them back to normal eventually. It will make such a massive difference to how I feel about myself in general.
We call this 'the ugly disease' in my house. Well, I do. Hasn't quite caught on. The extreme appetite and lack of energy made me fat, my hair is now incredibly thin, and my eyes look like this. Great for self-esteem!
Hang in there Opposite; things will get better. Wear the sunshades on days the swelling is worse and keep posting and sharing your progress with us. I’ve been there and fully understand how TED can make you feel 😎🦋
I believe you will be asked your medical history :
They may liaise with your endocrinologist who is treating you as with Graves - and during the
' active phase of Graves ' - you may not find the ophthalmologist can't do much for you -
other than prescribe topical ointments to help make you feel more comfortable.
Am I right in thinking - at this point in time - the Graves antibody reading was late being run and when it was run the result was not a positive/over range range -
so why is your endo still treating you as Graves - have you had a scan and s/he has proof of Graves from this ?
However I think there were positive and over range Hashimoto's antibodies prior to being prescribed the AT drug weren't there ?
i'm anxious you have stopped taking the AT drug -
it is quite normal to feel well on the AT drug - I had a window of around 3 months when I felt really well and lost weight without trying - first time in 50 years - it was short lived as I was due RAI thyroid ablation and knew no different back in 2004/5.
My eyes became worse after RAI and I was refused surgery as seen as ' not bad enough '' - so guess I'm vain as well - and the psychological impact of not recognising myself in the mirror - normal !!!
With time it did get better - and I guess seeing as I was then in my 60's I thought - so be it -
I did have my eye liner and eye brows tattooed so I had some definition as I couldn't see well enough to continue doing this for myself - and now with distance of time I'm less upset and the tattoos all disappeared and I'm less upset by it all :
At your age - I too would be deeply upset - but it does all calm down - take good care.
Yes, the antibodies were run far too long after commencing treatment.
I had no Graves antibodies at all. The antibodies for Hashimotos were incredibly high.
My Endo is treating according to TSH and T4. These have now been relatively 'normal' for a while. However, because it started very high, she believes it is Graves disease and wants to continue Carbimazole for another year.
The closest I got to a compromise was 'well, whatever we call it, it's autoimmune and you're Hyperthyroid'.
I stopped taking Carbimazole because I was becoming Hyper. I feel significantly better now my ranges are relatively normal. I am expecting this to change and will seek treatment accordingly - but for now, I'm okay.
I have another appointment next week. I'm just using the Endo for blood tests at this point. I will request medication according to the results of those. I no longer trust her advice.
With regards to TED, that's my biggest concern. It's not quite 'bad enough' to warrant surgery but bad enough to make me feel and look awful.
I know exactly how you feel, my eyes are all over the shop at the moment they look absolutely awful, they are changing all of the time too. My right eye is worse than my left. Long term I don’t know what I’m going to do about my appearance, I’m 43 & it bothers me a lot looking like this. I have graves, my endo nurse referred me but I am still waiting on my appointment with the ophthalmologist, feels like it’s taking forever. I’m using eye gel at night & drops in the day but they are still very sore, I sleep with a tightly fitted eye mask, that gives me some relief at night. I didn’t find the optician particularly helpful, I now wear glasses at work most of the time, these do help me to hide the appearance somewhat, I’m very self conscious when I’m not wearing them, I would live in sunglasses if I could 🤣 I hope your appointment goes well & you manage to get your eyes sorted out xx
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