Eye problems Thyroiditis

[Apodemus]

Hi there. I have been diagnosed with active thyroiditis and each morning I have swelling of the conjunctiva (chemosis). Other than cold compress and eyedrop tears is there anything else I can do and when will it calm down?

[helvella Administrator]

There are specific eye gels (and similar) intended for night-time use. They might cause slightly blurry sight so are not ideal for day-time use!

I leave it to others to make recommendations as I no longer use any of these products.

Also, make very sure that any products you use are preservative-free.

Have you been seen by a doctor, optician or anyone else for this issue? Asking because it is important that you rule out active infections. It is also important to ensure that you do not have thyroid eye disease. Many insist that can only occur also with hyperthyroidism and Graves disease. They are wrong.

Many members find their eye issues resolve as their thyroid hormone levels improve.

[Apodemus in reply to helvella]

Thank you. Yes been seen the eye hospital that said I had TED and did a CT scan on my eye that diagnosed mild active thyroiditis ....GP had done a thyroid test on recommendation of optician as my viral conjunctivitis wasn't getting any better and was originally diagnosed with hyperthyroidism (had what I think was adenovirus with sickness headache and respiratory infection). Seeing a consultant endocrinologists and optimologist in march

[helvella Administrator in reply to Apodemus]

Sounds like you are going in the right direction. Hope they can help you some more.

[Fruitandnutcase in reply to helvella]

Yes, as helvella says it is really important to use eye drops that are preservative free. Your optician will be able to advise what is best for you but things like HycoSan,or Hyabak or Theolose Duo drops. For night time you can get thicker gels but again as helvella says once you put them in you can’t really see well so save them for last thing before you put your light out.

When using drops in day time put them in really regularly throughout the day - every hour at least to start with. Some pe9le just don’t use them often enough. I also bought some EkoPura OMEGA 3 DHA+EPA capsules. I bought them as they had been recommended for my bones but when they ran out and I didn’t buy more I discovered my dry eyes got worse so I started them again.

When they arrived I paid more attention to the packaging and discovered they are recommended for the ‘brain and eyes’ which would explain why they helped. I’ve also recommended them to a friend who has terrible problems with dry eyes - he is seeing an eye specialist about them - and he has found they really help. I buy mine from Amazon.

I always had dry eyes but when I had Graves they were really bad. Apart from the dryness I used to get vertical double vision and I found it very difficult to read or watch TV for long. I used to use an eyebag that I heated in the microwave or squeeze a face cloth in hot water and hold it over my eyes (I preferred that to the eye bag to be honest)

Hopefully you get sorted out soon but I hate to say it - it could take a while.

[Apodemus in reply to Fruitandnutcase]

Thank you that is really helpful. Glad you have improved it's so depressing and took too much for granted!!

[Fruitandnutcase in reply to Apodemus]

I know, I found not being able to read for very long a real nuisance because I read a lot but it took the pleasure away from it, I suppose its because it affects the muscles in your eyes that that happens

[Buddy195 Administrator]

Selenium supplements 200ug day for 6 months is recommended for mild/ moderate TED, so as a precaution I would do this (lowering to 100ug when stmpypass). I use HycoSan and Hyloforte for dry eyes (liberally) and wear sunglasses a lot. I have TED with Hashimotos, so it is possible to have the eye condition Graves.

[Apodemus in reply to Buddy195]

Yes on Selenium. Yes thinking about tinted glasses so I don't have to explain red eyes! I have just bought HycoSan. Eyes ok during the day but swell at night.

[Apodemus in reply to Buddy195]

Can I ask how long you have had TED .....and do you have good days and bad days? Hope you are getting better 🙏

[Buddy195 Administrator in reply to Apodemus]

My active TED past a couple of years ago, but left me with light sensitivity (especially peripheral) and dryness, which can flare intermittently, sometimes causing pain. I use eye drops a lot (HycoSan/ Hyloforte) & wear reactive lenses to help me cope with light changes. I need to wear coloured night driving glasses as the glare from headlights can cause eye pain. Thankfully my eye swelling greatly subsided within a year of me developing TED, although I do have slight asymmetry remaining. Having stable thyroid levels really helped. I wear glasses, as I feel less conscious of one eye being slightly larger (I used to wear contacts).

Please don’t overdo it on Google; they show ‘worse case’ scenarios. As PurpleNails suggested, TEDct are also very helpful & supportive.

[PurpleNails Administrator]

Eyes & thyroid issue issue although connected are treated by separate specialists.

Have you been referred to ophthalmologist?

How are your thyroid levels being treated / monitored?

Transient hyper / fluctuations are common in early stages of autoimmune thyroiditis. Level then can drop. TED can be worse when levels are high, low or fluctuating. Stable levels will help your eyes.

TED charitable trust is a Informative site about TED & symtoms

tedct.org.uk

Things you can do:

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.  You could try, liquid versions for daytime & gel versions at nighttime.  

I’ve recently been using ocufresh carbomer lubricating eye gel it a light gel so best of both worlds.  Ocufresh have a drop called hypromellose or a brand called hycosan. Which has a squeeze pump dropper.

I also like to have a supply of eye wipes or a liquid cleanser eg Blephasol Eyelid Cleansing Lotion.

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.  

Add an extra pillow as night, you may find this reduces the swelling.

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, 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 & “hide behind a cute kitty picture” (buddy195 tip 👍)

Very important to get a hold of blood tests & checking your own progress & that all the right tests have been carried out. Share on here and we can explain further.

[Apodemus in reply to PurpleNails]

That's a wonderful reply,thank you. Yes referred to an ophthalmologist and taking carbimazole. Just ordered a home test as I need to see where I am. I will digest reply and keep going!

[PurpleNails Administrator in reply to Apodemus]

Ah, I wasn’t certain as your post says thyroiditis. (ultimately under active levels, treated with replacement hormone)

How long have you been on carbimazole / what dose?

Being treated with antithyroid needs further checks. Have you been referred to endocrinology?

Do you have access to blood test?

Thyroiditis causes initial elevated thyroid levels but it is temporary. Levels naturally drops.

Carbimazole should only be prescribed if your hyper levels confirmed as continuous.

Have TSI of TRab antibodies been tested?

[Apodemus in reply to PurpleNails]

Yes....I see an endocrinologists on 13 March been on carbimazole for three weeks, just ordered a home test as the eye hospital diagnosed Thyroiditis from CT scan... conscious I need to keep an eye on T4 levels. Read somewhere that Thyroiditis is self limiting and better not to treat as recovery is quicker??Have TSI of TRab antibodies have not been tested

[PurpleNails Administrator in reply to Apodemus]

Was the CT scan for your eyes? or for of your neck, was it an uptake scan? (with a drink or injection prior)?

Usually doctors arrange thyroid antibodies testing with function & ultrasound initially. Then progress to thyroid uptake CT scan as this show function throughout thyroid.

Autoimmune thyroiditis is where the immune system attacks thyroid. As the damage cell release hormone stores thyroid level rise but the damage results in permanent lower function.

There are scenarios where function is considered ”normal” or back in the normal range and further treatment / replacement isn’t required. (Eg post partum thyroiditis) but long term most require replacement.

Carbimazole lowers what new hormone can be produced so not right treatment.

[Apodemus in reply to PurpleNails]

CT for the eyes. Yes worried on the wrong treatment but may have to wait until I see the endocrinologists?