I have been diagnosed with TED by my endo and she has put me on a short course of 20mg of prednisone and referred me to a ted eye specialist. (i am also taking selenium, cut out gluten and have eye drops).
This came 2 weeks after an RAI scan (where they use a tiny bit of iodine) and this apparently has triggered it off. When I first noticed the pain after the scan I went to eye casualty who sent me home with ibuprofen and eye drops because my vision hadnt been affected (even though I was crying in agony).
The pain of pressure behind my eyes hasn't gone and I am worried about waiting for the specialist as my eyes are becoming more and more bulging and the pain makes it hard to focus at work.
I know the active stage can be months long, but does this pressure pain stay this bad? Seems unbearable.
Will the eyes get even worse after the steroids have stopped (pain/bulging) How do I get to see a specialist sooner? Any advice? I still haven't had my appointment confirmed and I am so worried and sad about it all. I want to see someone at Moorfields but no idea how i get to see them.
Please can anyone tell me living with ted gets better/more manageable?
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GraceLucy
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Whatever you do GraceLucy, please keep away from Prednisone. I was prescribed it for a very short time for an overactive thyroid gland problem and 10 years later I was diagnosed with AVN and eventually had both my hip bones replaced in 1997 and 1998 respectively. After my first hip replacement I was diagnosed with DVT in that leg and later learned from a report by Dr. Glueck (an American doctor) that anyone with an underlying blood clotting disorder should never be prescribed steroids. I live in the UK. I was eventually given radioactive isotope for my overactive thyroid gland and I am now under active and taking 100 mg. Levothyroxine. I luckily don’t suffer from TED.
It sounds like GraceLucy may have Graves eye disease, which may be different from your thyroid problem ripon. Radioactive iodine will cause damage in her case.
Prednisone should not be given to people with clotting disorders unless absolutely necessary & accompanied by anti-clotting medication as appropriate. I had a dog with a serious autoimmune disease & understand completely what you are saying about hypercoagulability - he would have died without high dose prednisolone though. I also advised owners for 5 years about his disease on a website on this subject & spent many an hour getting them to at least get ultra low dose aspirin or clopidogrel for their pet PRONTO before their dog got a blood clot. It really worries me that doctors in the UK did this to you. I am sorry you had a DVT.
Most people are fine on prednisolone - it is a life saver for me & many others with autoimmune diseases (eosonophlic asthma in my case) & could save Grace Lucys eyesight. It should not be stopped abruptly unless your doctor says so, but it should also be respected as a drug taken only when necessary & close monitoring.
Yes you are absolutely right millymumpkin and thank you for your reply. A nurse once told me that doctors weren’t aware of problems when I had my hip replacements in 1997 and 1998 due to AVN and, of course, I wasn’t diagnosed with DVT until after my first hip replacement. However, as you say people like yourself suffering from asthma do need prednisone. It’s a vicious circle. However, I do count myself lucky that I only needed both my hip bones replaced, after a failed CD operation, as there are many people who require multiple replacements due to AVN.
Horrible enough needing two hip replacements - AVN is an evil disease & I think you are a brave lady - very unlucky too. Funny you should mention nurses - being an ex-nurse from years back, I truly believe we often have more insight because we LISTEN & don't jump to conclusions. Silent, untapped knowledge, better diagnostic skills. But of course I am biased!
My dog was unlucky, but he survived the intense treatment & lived a very long & happy life afterwards, thanks to the prompt, correct treatment I knew he needed from doing MY homework & finding the right vets. A bit like finding the right doctor. Tricky. Why do some of us come across diseases no-one has ever heard of? We are lucky to conquer them, I suppose! I really hope you never have any further joint problems, ripon.
It might not be the best way, but you could go to a high street opticians. In at least some areas, they can directly refer you to an eye specialist. I do not know if they are able to make it an emergency referral?
I agree with really fed up saying go to the nearest specialist eye hospital right now. Eyesight is very fragile with this disease. I have a friend with Graves eye disease & looking through her glasses is like looking through a stained glass window. Serious damage from being given radioactive iodine to reduce her hyperthyroidism many years ago caused this. Poor woman didn't know that was the wrong treatment at the time.
My Mum had Graves too. Thankfully, they only operated - no rai - & removed most of her gland. Unfortunately she had already developed severe exopthalmia (bulging eyes) - I always thought she looked great with such big eyes, but she hated it. Her eyesight was also badly affected before her thyroidectomy, so do not delay - specialist eye hospital today. If you have any pain or discomfort it means there is something wrong. And there are other diseases that cause this too - get checked out.
First of all sorry to hear about your condition. Are you suffering from double vision? do you know how many mm your eye is protruding by?
TED can last from 12 - 18 months, (quite a bit longer for smokers). The pain you are experiencing is likely to be a cause of the restriction of muscles around your eyes. The most important thing, is that your vision is still fine and you can still see despite the appearance.
Prednisone can halt the progression of the disease and stop it from getting worse. You are not on a high dosage and any severe side effects tend to be a result of long term use of the medication.
I have Graves eye disease which my endo never did anything about. No prednisone, eye drops and no referral. I told every dr. and even my eye dr. I switched to tinted glasses! I got a referral from my eye dr about 2 years after it started. I had been told the year before it wasn't bad enough to do anything. By the second year, I had daily double vision and had a hard time with doing measures, or making a straight line and even reading.
The eye specialist ordered a CT Scan of my orbits. My right eye was out 27 mm and my left was 15 mm with muscle swelling. I needed decompression surgery. The dr said he could do both or one at a time. Due to the possibility of blindness, I had my right eye done in Dec. and my left eye w/b done in June.
He took a bone out and it healed really well with minimal pain. I have much less double vision now. The right eye is close to normal. The left eye has expanded to 18 now. He did tell me that the operation doesn't usually goes as well as my 1st eye did. He said the pain and bruising may be worse since it is the second time going in.
Be persistent and if they tell you it's not bad enough, insist that it is. I know if I had pushed the eye dr a year earlier, I could have saved my eyes from getting as bad as they are. But, I thought they were the experts. Be pro-active, some drs think you can wait.... don't let them do that to you. I wish I had known. My endo blew it off like it wasn't anything... just like my exedema and complaints of stomach pain from the meds. Maybe it's time for me to switch endo drs. (?)
So sorry to hear you have been diagnosed with TED, the pain behind the eye is usually caused by swelling of the ocular muscles behind the eye, the steroids should reduce the inflammation and help with the pain. You are 'lucky' in some respects that your Endo has prescribed them as in my experience it is very much a 'wait and see' disease' and many people with TED are treated for allergies, sinus problems etc before eventually being diagnosed. If you want to be referred to Moorfields Hospital you should ask your GP about a referral to a consultant there most people are sent to a local hospital so it's a bit hit and miss as to who you see and whether they know much about TED. I would also read whatever you can about it but try not to scare yourself! Best wishes
Hi GraceLucy, sorry that you are suffering and I understand to some extent what you are suffering as I went through similar. I have had TED for 8 years.
Firstly an endo should not be dealing your eyes, maybe not what you want to hear but the steroid drops approach for now may be the answer. You must present your case at the GP once again and ask for an urgent referral to see an ophthalmologist which should not take longer than two weeks, I say two weeks because that is what my eye specialist recommends, although not that easy I know. Let me tell you that ophthalmologists that specialise in TED will be only too pleased to see you immediately once notified that you need help. The problem is getting that to their attention. Ask you GP to call the hospital, no mailing, if he cannot get an urgent appointment there and then, ask for the name of the secretary of the specialist and call them. Time is important with disease and they know that too. Unfortunately, at a time when you are suffering you have to push to see someone. I ended up going and waiting in the eye clinic at the hospital and was seen within the hour! I've never waited since.
Other thing is do not waste time on seeing people who do not specialise in the treatment of thyroid eye disease, they will give you pain killers and eye drops, this is not the answer! Find a good specialist and they will be a life saver.
Quote from the British Thyroid Foundation.
What should I do if the symptoms get worse?
In less than 5% of people TED becomes very severe. You might experience disabling double vision; the delicate covering of the coloured part of the eye known as the ‘cornea’ can develop ulcers and interfere with vision; and - rarely - the ‘optic nerve’ carrying messages to the brain can be compressed, leading to loss of vision. If these complications are diagnosed early the treatment can still be successful.
They can help you and the pain will ease but it takes time and work.
I use facebook page were you can talk to the rest of world really who also suffer from this awful disease. facebook.com/groups/3129984...
I cannot stress enough to you that any ophthalmologist that specialises in this disease will put you to the top of the list and will make sure you are well looked after.
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When I first noticed the pain after the scan I went to eye casualty who sent me home with ibuprofen and eye drops because my vision hadnt been affected (even though I was crying in agony). 
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