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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hunny59
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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 just had the thyriod removal and my eyes are getting worse. My optomologist says it's not bad enough yet for treatment because the risks but it's getting worse and my confidence is gone. I cry daily because 1 eye is bigger then the other. I know this will get worse and I'm afraid I will be completely buldging in both eyes very soon. Did you get treatment? Did they go back to normal?
First of all, I am sorry for your distress and I completely understand it. Secondly, fantastic that you have an ophthalmologist on board.
The eye disease is unique to each and only a very small percentage are affected badly with it. In most cases it will restore itself but still may leave with having dry or gritty eyes for some time if not always but that is not so bad in the bigger picture.
My eyes were diagnosed 2 years before surgery and like you became decidedly worse after thyroid removal and I was pressured to have my thyroid removed to help protect my eyes from any further damage. That certainly did not work for me. I was also very naive back then. My case was described one of the worst they had seen, so perhaps, I hope there is no comparison.
What I can say is, that once I got and ophthalmologist on board, things got moving immediately and I found their knowledge of all things thyroid far superior to my endocrinologists . Just make sure they are thyroid eye specialists and don't be afraid to ask what their experience is and if you are not happy, ask to see another person who is. I found myself the center of attention at the eye clinics as every ophthalmologist wanted to look and learn, they find the subject interesting and want to learn and I was very well supported.
I was first treated with IV steroids at the same time as I had my thyroid removed and to be honest, I could not see any difference but wonder what my eyes would have been like had i not of had the steroids. The steroids are hard going. For people that less affected, they are often given pills to take over a longer period but if you have not been offered them, that's a really good sign. I was then sent for radiation. All this was in a six month period after my thyroid was removed. I was at the hospital every 3 weeks through this period and sent to larger hospitals for consultations.
My eyes did not settle but again I repeat I was told I was the exception to the rule.
You have an ophthalmologist, so make the most of them and ask for as much help as you need. You will get it.
Mentally, it is devastating but if I could add my pennies worth. When I first got it, I lost my confidence, I wore sunglasses everywhere, even inside, I could not look at anybody but..... I took hundreds of photos and now.... when I look at them, they are really not that bad. Extremely noticeable to me but not so much to most people.
In answer to question, are my eyes normal now? Yes. It took some time and work but remember, mine was an extreme case and your doctor has not said that.
The really great news is that there is a new drug available in the US now being used called Tepezza and it has had amazing results on people newly diagnosed. Google Dr Raymond Douglas. There is also a newer drug being tested for people that have it long term. So, hang in there, lots of good things happening in this field.
Finally, if it is causing confidence issues, ask your GP or eye doctors for some talk therapy support. I got a six week session and it helped.
Happy to talk anytime you need some guidance or just if you want to let go a bit.
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.
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.
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!
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