Thyroid Eye Disease query

I'm in the process of testing to see if I have TED as I started suffering from double vision about four months ago and in the last couple of weeks, my right eye has started to droop more, protrude slightly and the lid is lagging. I've never been hyper at all and have always been hypo, latest bloods (Dec) show suppressed TSH at 0.01 (0.27-4.30) but T3 is just under top of range 6.17 (3.1-6.8) and T4 is 18.24 (12-22). I'm on 1 grain NDT daily and the eye is the only symptom. I have no pain, the eye isn't irritated or red and no aching in or around the eye socket.

Although I fell over and banged my head a few days before the double vision started, all the optometrists seem to think this is coincidence although I am awaiting an MRI scan ordered by the opthamologist to confirm there's nothing resulting from the fall, everyone seems to think it's TED. Does anyone here have a confirmed diagnosis of TED with similar symptoms?

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14 Replies

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  • certainly TED can and does occur with Hypothyroid

    although i would still be leaning towards injury from your fall

  • Me too reallyfedup123 although I am trying to keep an open mind, despite the gut feel that the doctors are, once again, completely barking up the wrong tree

  • Confirmation of my eye disease was by an opthalmologist but also had an MRI and CT scan.

  • Thanks shambles - did you have similar symptoms to mine?

  • My eyes had the classic 'stare' look but I had little or no vision problems. Vision problems only occurred further down the line when I had my thyroid removed and the eye disease became chronic quickly. Then I got very red pupils, tearing and dry eyes. But each case is very different and rarely do two cases present the same making the treatment difficult to assess. In my case every optician, opthalmologist or GP was keen to get involved and help. There seems to be a great deal more interest and empathy when your eyes are affected.

    I am confident you will get to the bottom of it.

  • I am hypothyroid and going through a very similar experience. I am convinced it's TED but no one seems interested. I just have to wear glasses for blurred vision and the double vision is still there

  • I am hypothyroid and this week was told by consultant that my symptoms are definitely due to TED. I have horrible double vision and my eyes are a little red and sore but no pain at all.

    I have prisms in my glasses for the double vision which really help. Hope you get an answer soon x

  • I have TED. Endo told me that it's a separate auto immune condition from Hashimoto's disease. A previous opthalmist told me last year when in full TED that I did not have it and that it would resolve when I was on correct meds - the implication being that I was overmedicated. Referred by an endo that I no longer see (no pun intended) to Liverpool Eye Hospital. He also said I was overmedicated.

    Opthalmist at Liverpool was wonderful - she told me that you can have TED when hypo not just when hyper. I'm in the final stages of TED and she's scanning me to see what's going on behind the eyes to be able to determine treatment. My right eye is bulging - is now reducing, but found wear my reading glasses very irritating as my eyelashes were touching the lens. I think I'm going into burn out phase now. My left eye suffers from lid lag. I slso have very irritated red, runny and itchy eyes. Made worse by heaters or air conditioning! Difficulty diriving at night, very light-sensitive to flash cameras and car headlights. I now wear distance glasses for driving with transition lenses and am much better. I take Omega 7 (Sea Buckthorne) and the redness, itchiness and runniness is much improved.

    Opthalmist said I'm doing everything right, which is reassuring, since no doctor has helped me with this.

    TED has 3 distinct phases and can last 18-24 months. Is usually developing over 6 months - full blown for 12 months - symptoms at their worst - then burn out for 6 months.

    Treatment can be steroids, decompression, or orbital surgery, depending on how bad your eyes are. Since I'm in burn-out stage, I'm unlikely to have any treatment until the TED has fully burned out. Then it may be cosmetic surgery to even up my eyes. I am having a CT scan later today to look at the back of my eyes to determine if there is muscle damage.

    95% of TED suffers are Graves patients which is why endos say that it can't happen to hypo sufferers. I am one of the unlucky 5% of hypo sufferers who has it

    I am now seeing a new endo, who seems to know a bit more than the 3 previous ones that I have seen. He has promised to treat me to my symptoms and not just blood tests, so I'm hoping to see some improvement in my thyroid symptoms soon too. He has said that Hashimotos and TED are 2 separate auto immune conditions. Every other endo and opthalmist other than the latest one has made me feel that I caused TED by insisting on thyroid meds that made me feel well (i.e. making me over-medicated), when I knew I wasn't.

    Hope this helps a little bit. Good luck.

  • Ah Rita-D that's brilliant information and extremely helpful - it reinforces some of my feelings I'm hopefully due to find out this evening whether it is, in fact, TED or a muscle palsy as the results of my MRI should be available. So far I've seen several optometrists and three ophthamologists. It's exhausting isn't it? The second consultant implied that I'd caused all this myself because I self medicate.

  • I know, very frustrating. Makes me really angry that the opthamologist that I saw last August said there was nothing wrong with my eyes but now another one says that there is!! Wonder if I wouldn't need surgery if she'd realised last year that there is a problem.

    All my previous endos have implied that I'd caused TED myself, when my latest endo says it's a separate auto-immune disease and you can get it without thyroid problems.

    It's a minefield! You just have to keep researching and fighting for your health - the doctors won't do it! Hope it's not TED. x

  • It's just been confirmed that it is. Apparently the MRI was definitive. On the upside, the consultant was absolutely brilliant - says I'm doing everything I need to be doing and that my GP should be looking after me and keeping an eye on my thyroid (no pun intended!). I snorted with laughter at this point. She was surprised (and I think a little disappointed) that everyone has told me for the last 18 months that my elevated antibodies were irrelevant ...

  • Oh I'm sorry. That's not easy to hear. Try the Omega 7 Sea Buckthorne capsules for your dry eye. They've been really good for me. Much better than any drops or creams that the Dr has prescribed for me. Hope you start to improve.

    I'm waiting for the results of the CT scan I had yesterday to see how much damage TED has done to my eye muscles.

    Take care.

  • Thanks - luckily the eye isn't dry, even though consultant No.2 did prescribe me drops and gel. Consultant today has confirmed the eyes are both looking good and not dry at all. I'm really hoping it stays that way. Meanwhile, I'm staying on the selenium supplements.

    Weirdly, I'm OK about it. I think because I've been buggered about for the last couple of months, I'm just glad to have a definitive diagnosis. Consultant No.3 was thinking muscle palsy, which gave her license to start preaching about cholesterol, blood pressure and blood sugar!

    Fingers crossed that your scan doesn't reveal any nasties and thanks so much for your responses Rita-D xx

  • Oh that's good then. At least you've got a diagnosis and are being monitored. My last endo said to me "whatever you do, keep the eye appointments, it's very important". I've got another ophthalmologist appointment in June, so I might know a bit more then. Everyone thought I was just moaning for no reason, but until you've experienced dry and extremely sensitive eyes, you've no idea how frustrating and painful it is - I used to have to use Vaseline around my eyes as they were so chapped!

    Let's hope there's no progression for you. xx

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