Thyroid eye

[teentoddlermum]

i was diagnosed with graves 2020, with a couple of relapses it’s been under control blood wise since my last baby born July 2022, have regular bloods 2 monthly.

Anyway around 2024 I noticed my eyes ‘look different! Couldn’t pin point it just felt older. What with work, a toddler/teen and general life stresses, difficult birth/recovery and sleep deprived becoming a mum again at 40 ( I’m now 43yrs) just put it down to aging. I did email my consultant office Nov24 but didn’t follow up until recently Nov 25 I’ve noticed my eyes are so sore, went to the optician and they said I had dry eye so been doing drops religiously, heat pack for eyes as advised but nothing has helped.

The good news is that I’m booked in with an ophthalmologist next week but I spoke to my thyroid secretary today who was very helpful and she thinks from what I’ve described it’s TED so although I’m not surprised and I need it confirmed at my appointment next week I feel so down. I feel I’m staying home and not socializing, I’m working from home temporarily as I can’t face the office. It’s made my anxiety high so daily life for me for the last 2 months has been a struggle.

Just looking for others who may have been in similar situation - I’m functioning because I have to and have such a supportive husband and I’m so lucky but at the same time I can’t shake off this horrid feeling, my eyes feel constantly gritty sore like I have soap in them and I think where it’s gone on so long my body is feeling stressed
I know there are much worse conditions but I just hope I can get a treatment plan and get it sorted

Thank you for reading

Sounds like blepharitis. Are you using eye drops daily on top of the cleaning regime?

A relative had TED amongst other long term eye issues, so I'll give my 2 cents worth.
The consultant recommended a few different brands of eye drops. All without preservatives and some with individual vials. Hylo and Systane brands worked far better than the other brands.
A night-time ointment was also prescribed on top of the day time drops. This was a bit of a pain as it blurs the vision but was useful for a brief period to get the moisture level stabilised.

How often are you using the day time drops? If you take time to understand your eyes and notice triggers like air conditioning, you'll be able to tell immediately the dryness starts and use the drops.
Sometimes the eyedrop bottles or the eyes can pick up an infection that gives a gritty feeling so you should mention this to your consultant. It is dangerous to leave an infection untreated for long periods.

My relative didnt have a good outcome with the heatpacks as it caused a small tear in the eye. So do be careful of how much heat you apply to such sensitive tissue.
There have been no quick solutions. Consistency and cleanliness have been key to keeping the discomfort manageable.
The treatment went on for about 3 years. Important thing they were told was to get the thyroid disease resolved and the TED would follow afterwards.

I’ve got no sleep/anything coming from the eye and yes religiously every 2 hours and a night ointment. Currently using hycosan brand advised from specsavers

Thank you for the advice. Yes using hycosan every 2 hours and at night a night ointment. I’ve read about those brands maybe it’s worth trying. The heat pack I did read to keep it warm not hot and afterwards it always feels nice and soothing. But I’ll bear that in mind. I only do the heat one daily although I think specsavers said twice but for management I think it said once daily.

Are you using a heated eye mask?

Yes once daily which gives nice relief then a gentle massage after as specsavers said my glands were blocked so been doing this religiously

When the heat mask failed, the other advice given to reduce overnight dryness and discomfort was to use a regular eye mask or an eye shield to keep the eyes fully shut during sleep at night. This helped to gradually reduce night ointment use.

I should have added I sleep with an eye mask as we have a baby monitor in our room and I like complete darkness but this is a good idea thank you

Although you could have TED too, it's more likely that you are experiencing the ocular signs of Grave's Disease
Dry eye associated with Grave's Disease can be a little more difficult to manage that normal dry eye - which is why you're struggling with the normal drops. Although there's no cure (although ensuring that your Grave's Disease is being managed properly) - however, there dry eye treatments which you haven't tried yet.
Little plugs can be put into the draining channels in the eye and there is also a medication called ciclosporin which helps in severe cases. Sometimes a short course of steroid drops can help. When you see the consultant ask about these options - they can refer you to the dry eye clinic at the hospital if needed.

@jetlag92thank you well 3 trips to the eye clinic she’s referred me to a cornea specialist as I just cannot get any relief I’m so fed up !
I have a MRI coming up in a few weeks - I asked about different drops and she said she can’t prescribe me anything like that only the specialist can, so now the waiting game
different drops again but they are just not giving me anything relief at all