It's six years since I was diagnosed with Graves Disease, (undiagnosed for 20yrs) and 4yrs since I had eye surgery to attempt correction of the muscle damage caused by T.E.D.
On the whole the surgery was successful and my recent bloods report I'm still in remission for the eye disease, so I do have a lot to be grateful for, even if I have developed arthritis in my hands feet and knees !.
However, I'm wondering if there's anybody out there who is at a similar stage to me with this illness, as I'm starting to feel a bit lost and vulnerable. Although appearance wise my eyes look nearly perfect, they are misaligned slightly from over corrective surgery, which has left a multitude of problems.
I have no recognition capabilities, and no peripheral vision, I cannot focus on moving objects, cannot look up, or to my right, I have no night vision, and am completely blinded by light and wind.
This in itself has changed my life beyond all recognition, and yes as my surgeon informed me, my brain would and has rewired itself to evaluate and understand the double vision I've been left with.
BUT and its a big BUT, it's left me feeling completely insane, I don't see, hear, think, or understand things the same as I used to, and I'm constantly met with confusion by people when I try to communicate my brains NEW coding, which causes me to get angry, defensive and frustrated..
It takes me forever to do anything, as I'm constantly double checking EVERYTHING , to the point where I feel I'm developing O.C.D.
So please if anybody else out there recognises this can you let me know.
Written by
BLizzy88
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I'm sorry to hear that the surgery has caused you such problems and distress. We don't often get posts from members who have had surgery for TED and I've not seen any with problems similar to yours so I've posted a couple of links with posts relating to TED but not necessarily surgery. I've also edited your title in the hope that anyone who has had TED surgery will see it and respond.
Im going to ask for my latest blood tests, to see if maybe anybody could translate for me, there might be something else going on. Any help would be appreciated in the meantime.
I'm sorry you are having such a bad time I have mild ted and I'm having Botox at end of month to hopefully stop it getting to your condition which must be vert frighting
What I did notice was your last paragraph from but these symptoms were what I had before being diagnosed hyper
I to thought I was going mad in fact I thought I had demetia even though I'm only 52 is there any chance this could be thyroid symptoms graves can quite often come on after operations
Having my wisdom teeth under anaesthetic really triggered mine
You don't say if you are being treated for thyroid
Yes sorry I didn't give much information regards treatment. I was diagnosed 6yrs ago, but had to wait two years before the doctors would operate, as they won't do corrective eye surgery until the T.E.D. has burnt itself out, which usually lasts about two years. During those two years the damage to the muscles of both eyes became severe.
Both eyes were deviated badly, one inwards and pulled down, and the other pulled severely down, they bulged mildly, and my face swelled everywhere, I had double vision above and right side, and still have.. although nothing like it was.
My thyroid apparently is in the so called normal ranges now ,.. although I have my doubts !
I have been off Carbimazole for three years, and no other medication other than ADs for the obvious depression and anxiety. I have been under stress, I will admit and it may well be exasperating the situation, which is why I'm asking if anyone else is maybe at the same point.
It's a nightmare isn't it, you say you had intermittent dbl vision, how have your eyes progressed ?. I hope you are coping ok, it's such a life changer and not something anyone can prepare you for either.
Hi just read your post, I'm so very sorry for your suffering. I have graves ,I had a total thyroidectomy after my my daughter was born 14 years ago. I'd been suffering with an over active thyroid for many many many years I'd had 4 tests all came back so say normal , it wasn't until I had a random hormone test done at my doctors as my periods had stopped ,I'd lost so much weight and had terrible problems with my eyes , I used to have to get up an hour early because of the double vision and hope it would pass in time for me to drive my other daughter to school , it would take at least an hour for the double vision to clear every morning , I couldn't lie down or the double vision would come back. When I first went to the Drs about my double vision he asked if I'd had my eyes tested, I said I have them tested every year as my brother is blind due to gluocoma, I went to the
opticians had eye test they gave me a prescription for long sighted reading glasses and £350. I did return the glasses later and explained that I'd just been diagnosed with graves and why didn't they pick up on this they refunded me, and appologised went back to Drs about periods stopping after they had told me that I wouldn't be able to have any more children as I had undetected readings for progesterone my second daughter was now 6mths old . I'd also been to the gym that day and the alarm went off whilst I was on the treadmill. The instructor told me to go straight to my Drs as my heart rate was so high on the monitor and advised me not to do any exercise . My Drs said I should exercise as it would be good for my postnatal depression that he thought I was suffering ,test had come back positive for over active thyriod and graves thyroid eye disease. They were very concerned for my heart , I was put on beta blockers and carbamazole until I saw endo , she recommended thyroidectomy , I'd already done my homework on this and insisted on a total thyroidectomy as I didn't want to have any risks of graves returning ,she reluctantly agreed as they normally didn't like to remove all of the thyroid . Not long after all that I was rushed into hospital i saw an eye specialist that told me to go home and pack a hospital bag as I had to have emergency treatment to save my eyesight I was put on intravenous steroids for a week and a drug called cyclosporine and to take these drugs for 6mts to a year. He said it was a relatively new treatment but had good results from recent patient with graves. It did work and my eyes didn't deteriorate I was lucky the double vision went the eyes don't protrude as they did . I have problems with night vision and sensitivity to light and my eyes are very dry and sore but I use moisture eye drops and they help. I'm still taking thyroxin 100mg which isn't working I feel very much like you , iv tried every thing to get my Drs to help me and I'm still fighting to find a way out of this awful condition . Iv been so very ill at times , and it's almost as if the Drs will do all they can to avoid treatment for better thyroid and other related conditions caused by un diagnosed and under treated medication . They won't agree to any of my symptoms being down to thyroid related causes they will not allow me to take a part in finding out what I feel would be better for my recovery , they have made me feel so unimportant as a human being ,and total hopeless and despair of being able to ever feel well , they make you feel as though you couldn't possibly feel that bad and that this is a mental health condition that requires antidepressants and counselling . I think only thyroid people understand other thyroid people unless you have suffered from PMT ,pregnancy hormones, postnatal depression and menopause all at the same time , because that's what it feels like most of the time when your thyroid isn't working as it should , im going to see someone privately next week with my daughters as they are both suffering thyroid illness and have been for a while now , I can't go on fighting the NHS anymore they are making me ill, . Sorry iv waffled on a bit but I hope you know that you are not alone in how you feel , there are others out there who feel as you do and it is because of not being properly medically treated for a condition that we happen to have.. Research all you can and find the people who can help you to feel the best you possibly can . Take care
Thanks for getting back to me, it means a lot that you've bothered. I am disgusted by the lack of urgency regards correct diagnosis with thyroid related illness, when it controls so many vital functions.
I too went misdiagnosed for many years, infact I'm surprised im not dead. At my lowest point I weighed six stone, I complained of rapid heart, headaches, urgent and sudden vomiting, pain behind my eyes, loss of night vision when driving etc etc.. oh and I lost virtually all my teeth which either snapped off or became infected.
My doctor at the time did one thyroid test which came back normal, told me to stop drinking coffee, and put me on anti depressants !.. ( I don't drink that much coffee, but I was in a demanding job with long hours so I was probs topping up my normal allowance by the odd espresso).
Needless to say it all came to a halt when I woke up one morning with a strange dbl vision, which like you say cleared slightly after a few hours. I didn't hold too much importance on it because I'd just had yet another tooth out, which left me sneezing for 24 hrs. The private ! dentist, put it down to infection and off I drove to the doctors. On the way, my whole right side of my body went numb, I was terrified I thought I'd had a mini stroke and I told the locom Doctor when i got there. He literally brushed that off, checked my eyes said he saw nothing to be alarmed at and sent me home with suspected sinus problem.
A week later one eye had deviated slightly into the corner, and the other was being dragged down, I'm not going to waffle on any more because it just gets more surreal, but it ended up taking them 12 mths to correctly diagnose this, I lost my job, my sanity, and nearly lost my home.
I did learn to put my foot down and demand a better service from my doctor, and I couldn't be more grateful to the eye consultants who have looked after and corrected my vision.
But as for the Endocrinology side of things ???...
I have a sympathetic doctor, but bless him he keeps sending me to the consultant who insists all is ok. So I've sort of given up,..
The post op eye situation I mentioned in my first post, is like visually living in a world just outside of what we consider normal, and it takes more out of me trying to deal with it than I realise, perhaps that's why I get so confused and distressed. On top of the fact that I am 54, post menopause on top of everything else I loathe too admit I probably am Insane lol..
Good Luck with your private health, would you let me know how you get on.. It is something I am considering too, along with my daughter who is 26 and suffering terribly under the NHS.
Just as an update to my initial post, I got a copy of my recent blood work, and it appears I have a Vit D deficiency, which may account for the way I have been feeling, aswell as a whole host of related issues, vision seems to be affected by this. So on top of existing eye issues it's quite possible this has been compounding things.
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