I developed symptoms in my left eye about two weeks ago. First thought it was hayfever related, but it's only in my left eye. It started feeling worse (itching, sensation of swollen eye, some swelling in the under eye area) so I went to go see an ophthalmologist. He diagnosed me with Thyroid Eye Disease.
I was diagnosed with Hashimoto's in September 2021, and although I've had plenty of symptoms from my condition, I have never suffered from more than dry eyes.
Has anyone else had experience with this and how it develops? Can it go away again? Very concerned.
Just for background: I am on a combination of T4/T3 medication.
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thyroidqueen12
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TRab antibodies are associated with TED. With TED the immune system is attacking the tissues round the eye, it can be worse in 1 eye.
It does occur with under-active thyroid. Many doctors & specialists say it only occur with hyper Graves but this is not the case.
TED has active then stable phases. Try not to worry, 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. I put in an album on phone & hid behind a cute kitty picture.
TED charitable trust is a Informative site about TED & symtoms
Things you can do for TED or similar eye symptoms:
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.
For dry eyes I recommend warming eye mask & *preservative free* eye wipes / drops / gels. Some like to use drops in day & gel at night, but I use carbomer gel eg Ocufresh gel which is a lighter gel which melts quickly in. Rotating different brands seem to help.
Very gentle massage toward lash line, you 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 eyes more swollen, inflamed or painful, I switch to cold compresses.
If you like to moisturise near your eye area use water based clear gels not oil / cream, this will lessen any clogging. I did this as developed milia white spots round eye.
Many report TED triggered or worsened when thyroid levels are low / high or fluctuating. Monitoring levels important.
TRab is the most associated biomarker with TED. TRab is used to diagnosed Graves. Many hospital favour TSI antibodies for Graves.
TED can occur with Hashimoto’s & outside of Graves & any thyroid issues or antibody formation.
I had an eye orbit MRI arranged by specialist to disprove TED as I was negative for antibodies. The report confirmed chronic (inactive) TED. The specialist discharged me stating no treatment needed. I was suspicious so obtained the report & found out.
Testing TSH alone isn’t adequate. Hopefully your son will have FT4 & FT3 too. TPO & TG antibodies should also be tested. If TSH low, FT4 & FT3 high TSI & TRab should be tested.
Also important to test folate, ferritin, B12 & Vitamin D.
There are private options for full testing. Recommend testing is arranged for close to 09.00 fasting overnight. Biotin supplements can interfere with testing process & skew results. Avoid 3 days before test.
Always best to begin new post. This is an older post & tends to get hidden by current posts. Also original poster gets notified of all replies.
thank you so very much for your quick response. he goes to ENT today, so perfect timing to ask for this recommended blood work! Thyroid UK to the rescue yet again! 🙏
that’s strange. I have had under active thyroid. A consultant said I had Hashimotos some years ago but my GP said not to worry about that!! Anyway I have a bad left eye. Waters badly, red and the bottom eyelid turns in on itself. Having a minor op on it Thursday as the consultant told me it is an entropian and it’s because of the muscles. It’s such a coincidence with your problem thyroidqueen.
Just a warning, you are likely to come across people - very much including trained medical staff with special interest in ophthalmology - who will refuse to believe TED in hypothyroidism.
They might seem to mis-hear (effectively that you said "hyperthyroid" when you very definitely said "hypothyroid"). Or imply that you must have been hyperthyroid. Or that it really isn't TED because you are not hyperthyroid.
I suggest you choose a short but good article (or quote) to print and carry with you. One that is authoritative, clear, simple and categorically states that you can be hypothyroid, or even have no thyroid condition, yet still have TED.
I once went to get an emergency eye test (I went regularly as I am short sighted) from my local boots optician. I told him over the phone all the eye issues I was having as my eye sight had actually been blurry as well as dry and gritty for a few days. He told me to come in and see him
Initially when I arrived and then started talking he seemed to be really listening, but the second I mentioned hypothyroidism he switched and became quite sarcastic and said 'You realise you are Hypo? not Hyper? You doooo know that only Hyperthyroidism causes eye problems? Have you been seen by an opthalmologist?'
I said yes, but after the 3 month course of steroids it had been better for a while and now the symptoms had returned.
To which he said: 'Your opthalmologist knows full well that levothyroxine causes dry eyes. It's extremely common. You should be glad that you are not suffering with thyroid related eye disease'.
I said actually my eyes sting are gritty and swell up, and I have been having issues since before any official diagnosis or taking levothyroxine. He acknowledged I had a 'bit of blepharitis' then said take some lubricating eye drops
I said I was doing that already.
To which he said ' I am giving you good news, but you can carry on believing what you want'
This was around 4 years ago now.
Naturally I never went back. I went to Specsavers a year later, got a much nicer optician, but he too said it was medicine related not thyroid related.
When I was distinctly hypothyroid, I had dry eyes.
Made the mistake of using standard cheap ones with preservative and became sensitised. Spent a long time using ViscoTears (single dose) and Lacrilube. Eventually finding I didn't need them any longer.
In my case, levothyroxine fixed the dry eyes - not caused. While I might pretend to be super-special in lots of ways , I really don't think I'm the only one with more or less that experience.
I recommend you 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. TEDct helped me find a TED specialist ophthalmologist in my area. tedct.org.uk
Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world.
Please keep posting if you need any further advice or support.
My eye has been much better since I have posted this. I have religiously been using Blephawipes on my eyes in the morning and evenings, as well as taking Selenium ( 200ug daily) Not sure if i ever need to reduce this dose? This was recommended by my eye doctor, but I haven't been to see him since I posted this and the diagnosis, as my eye improved after this regime and the issue hasn't come back yet (touch wood!)
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