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Hashimoto's Thyroiditis - dry eyes and Photophobia

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  • Hashimoto's Thyroiditis - dry eyes and Photophobia

    Hi everyone

    I have a pretty bad thyroid problem, it has been swinging between overactive and underactive for six years now - sometimes as often as weekly. It started to take its toll on my eyes a few months ago - they are so dry! Then I started experiencing photophobia - but only with flourescent lighting? I don't think people understand how frustrating that is! Street lights, traffic lights, headlights - I'm totally stunned by them.

    But also now - the bright lights are starting to reflect - like I'm seeing one above the other? Only flourescent ligthing though. It's so strange.

    I've been referred as an 'emergency' to a thyroid eye specialist, I'm hoping it's not too long and that there is a solution to this.

    Has anyone had any experiences with dry eyes and photophobia before? I've been given drops to use lots, and they do help, but my eyes get dry quite quickly again. I keep getting funny looks when I wear my sunglasses inside!

    Would love to hear I'm not the only one who's had problems like this.

    Anna

  • #2
    you're not alone in this. I think a lot of people experience photophobia when their eyes become dry. Mine did. driving at night was when I first noticed it. The headlights of other cars and street lights were distorted and painful to look at. I had what appeared to be double vision, too. I went to my first eye appointment to discuss this, and was referred to a children's eye doctor as the doctor thought I needed help strengthening my eyes to correct the double vision. it seems like doctors don't connect dry eye with the symptoms we have. I even told the doctors that my eyes felt dry.

    sorry to hear that you're wearing sunglasses indoors. I did that, too. It does help.

    I, too, have thyroid problems, but I suffer from hyperactive thyroid.

    I'm very fortunate, because, after trying lots of drops and steroids, and humidifiers, and goggles, and ointments, and compresses, we tried contacts and they've given me relief. good luck with your doctor appointment.

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    • #3
      Sorry to hear about your thyroid issues and vision problems. I can completely empathize with you. Although I had Grave's thyroid disease, I had light sensitivity and double vision due to thyroid eye disease (exophthalmus). Back in those "olden days", (before cell phones and PCs!!!) I was prescribed only lubricant ointment for night use as my eyes didn't fully close during sleep. The optometrist prescribed prisms for my eyeglasses and that helped with the double vision. After very aggressive thyroid treatment, my eyes gradually became less prominent and the prisms were no longer needed. Now, many decades later, (gulp) there are still serious consequences of that early thyroid disease.

      So my suggestion is to do everything you can to protect your eyes (indoors and out) and follow your specialist's advice. Try not to be concerned with the funny looks; your eyes are worth protecting. When this current emergency eventually settles down, and it will, it is really important to continue to be extremely vigilant with eye care and checkups.

      The Dry Eye Shop has several models of moisture chamber goggles for daytime and night time use so you might want to check those out and talk with your specialist about using them. There are many excellent articles and tips on "managing" dry eyes here:http://www.dryeyezone.com/index.html

      Elaine Moore's website has good articles on thyroid eye disease. She has a forum as well as a blog.

      I hope you find relief soon, and your specialist is able to provide good medical support. Let us know how it goes.
      Blinks

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      • #4
        Thanks so much for your replies, PAllen and Blinks. I actually feel a lot better about it all knowing I'm not the only person this has happened to!

        I was originally diagnosed with Graves Disease as well, on paper I have both Graves and Hashimoto's Thyroiditis, but really I think they're not sure.

        I had thyroid eye disease when I was first diagnosed with Graves at 21, it took about a year to go away. I'm 27 now and this is the first time my eyes have flared up again, and they're bad. I've been using the drops every few hours and a compress for my eyes too. This has made my eyes more itchy, but I feel my vision is a bit better. So I'll keep going with this until I see the eye specialist.

        Elaine Moore's website is brilliant, isn't it? I've asked her questions a few times over the years about my thyroid problem and every time she has been spot on. In fact she said from day one that she didn't think it was Graves I had, that she thought it was Thyroiditis. My specialist rubbished the idea, but three years later, he changed his diagnosis to Thyroiditis.

        I'll keep you posted on my eyes, I'm still waiting for my appointment. I'm in the UK so have to wait on the NHS, but they said it shouldn't be too long.

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        • #5
          Hello - I just wanted to say that today I was diagnosed with Hashimoto's Thyroditis and a multi-nodular goiter. I knew I had the goiter but did not know about the H. previously. The doctor today also took several more blood tests to check for Sjogren's Syndrome & Celiac Disease since I also have secondary Reynaud's S. Anyway, I'm anxious to see if there is anything that can be done to stop the photophobia. I've always had pain when in flourescent lighting and never knew it was related to my thyroid issues. I'd assumed I had ocular rosacea & that was the cause. (There is no definitive test for OR, so none of the eye docs could tell me for sure. I have very, very mild facial R.) So Anna....you are definitely not the only one dealing with this. Hopefully we can all find some relief.

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          • #6
            Hi Alison - sorry to hear about your diagnosis Keep me posted on how you're getting on?

            I had my first eye appointment today. I was really quite shocked - they found nothing at all wrong with my eyes, other than them being so dry! I had geared myself up for bad news given how bad my vision is around flourescent lights. But no, my eyes are perfectly healthy they say.

            They think my thyroid condition has dried my eyes out badly, and this in turn has caused Photophobia. They weren't concerned about flourescent ligthing reflecting and me seeing one light above the other with that.

            It's all about good management now they tell me, there's not much they can do until my thyroid settles. I've been given different eye drops to use during the day, and a night gel to put in my eyes every night just before I go to sleep. They've also ordered the strongest anti glare lenses for my glasses they have access to, they seem to think this will help me. For 400 for the lenses alone - they better help!

            I still have to have a MRI scan to make sure there's nothing else going on, but they seem a lot less worried about me now. I feel a lot more settled knowing my eyes are healthy?

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