Hi I had dry eyes a bit at the end of last year and was using drops (hycosan) In January my eyes started to feel irritated (both of them) so I went to the optician for a thorough check. She said it's blepharitis and I've been using hot flannel and eyelid hygiene techniques as instructed. My eyes are still light sensitive though and I'm checking back in with her.
My question here is has anyone had similar and is there any chance of it being TED?
I've aquired hypothyroidism - I was hyperthyroid but had RAI treatment 20+ years ago. Currently on a combination of T4 and T3 with good results.
Many thanks
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Rambling9
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An high number of hypothyroid members describe dry eye as a symptom. Preventative free eye drops will help.
Was your hyper prior to RAI diagnosed as Graves? TED can occur years after treatment.
TED most commonly occurs with Graves, doctors often incorrectly assume it only occurs with Graves, but is can occur with hypothyroid & in those without thyroid issues.
Thanks that's helpful. I wasn't told graves disease but now I've taken on testing Medichecks and with private endo I know I have antibodies I'm seeing the endo on Fri as well as optician so hopefully one of them will have advice
My eyes aren't protruding but the upper lids are puffy
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).
If TED is suspected, 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). I also have night driving glasses to reduce glare from headlights etc. 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.
TEDcttedct.org.ukWelcome to the Thyroid Eye Disease Charitable Trust - TEDct
I have Graves Disease and had RAI thyroid ablation back in 2005 and developed Thyroid Eye Disease a few years later - and have read that TED can be a consequence of ingesting this toxic substance.
I too was initially diagnosed as with blepharitis by an eye consultant at the hospital and followed a similar routine but prescribed eye drops containing preservative so initially compounded my own problem.
My eyes are still light sensitive and I use Preservative Free heavy duty gel o/night and Preservative Free drops during the day time.
You had o/range antibodies on 2 Medichecks blood test reports you shared with forum members 10 months and 2 years ago - so this is indicative of Hashimoto's - though presume your thyroid now totally disabled so your symptoms may just now be related to your eyes.
You might be interested in reading the most recent research :-
Hindsight is such a wonderful thing! When first diagnosed c25 years ago I had no information about the thyroid and what was best and the rest of life was in turmoil. I wouldn't go for RAI now!
Are your drops prescribed or over the counter?
Interestingly today I've worn sunglasses indoors - I have clip on ones too which can go over my occupational glasses - and feel much better
No - I buy my own after the initial NHS prescribed eye drops with preservatives made my eyes issues worse - which was when I started doing my own research into all things Graves - some 8 years post RAI thyroid ablation.
When I started questioning the NHS on any of my symptoms - the onus was put back on me for non compliance - I now stay away and buy my own thyroid hormone replacement as I was refused any treatment options other than T4 monotherapy in 2018 when very unwell and referred to as a conundrum !!!
No answer to the TED question but I have blepharitis and dry eye syndrome. In terms of eyelid care, I use Optase eyelid gel in the morning, followed by Hycosan Extra eye drops. At night, I use Optase eyelid wipes and again follow up with Hycosan drops. I found the hot flannel way too much of a palaver and was recommended thé above, which has worked well for me.
Hi Rambling,I have extremely dry eyes Blepharitis and am hypothyroid. I also have Sjogrens disease which can cause the symptoms you describe. Worth getting checked out but be warned, hard to diagnose and GPs generally clueless.
Treatment for my dry eyes currently. All eye drops, apart from the Hydrocortisone cream for eyelids.
Clinitas, Viscotears Ikervis and when really bad, Prednisolone steroid drops.
Thank you that's interesting - my optician asked a few questions re dryness elsewhere so I guessed she was trying to eliminate Sjogrens. I'm guessing your eye drops are on prescription?
Yes, all on prescription. Steroid drops and Ikervis (Ciclosporin) can only be prescribed by a hospital consultant initially.
Sjogrens is systemic in nature and can affect any organ in the body. It can cause dryness in any mucus membrane IE: eyes, nose, mouth and lady parts. Usually people begin by noticing this dryness and then the fatigue, muscle issues, sleep issues, brain fog and problems with the salivary glands. Symptoms are often misdiagnosed as they mimic other conditions, such as, thyroid, which is bad enough in itself. I run a support group locally and about 65% of the people who come along have thyroid issues as well as Sjogrens. Some have thyroid, Sjogrens, Lupus, R.A & Pernicious Anaemia. Many have a combination. I find that if you have one A.I. condition you usually have another lurking in the background until it pops up.
My dentist first thought Sjogren's - but this was ruled out after a negative lip biopsy and then I started reading about the consequences of RAI and found the reason why - but had no help through the NHS :
My mucous membrane, salivary glands and eyes all suffered and damaged by ingesting RAI - I had no saliva for some 18 months - had trouble eating anything as my mouth felt like cracked cement - saliva started to return and then dental work started which was very costly - replacing previous crowns and bridges, and loosing several teeth as saliva contains a pain killer 6 x more powerful than morphine hence the considerable pain I lived with and we need saliva to minimise the risks associated with and caused by dental decay -
My taste buds have never recovered - I know hot from cold - and that's about it.
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Eyes & Hashimoto's
Dry eyes etc
Light sensitivity with low thyroid?
