I am new to this page and would like some kind of reassurance (If there is any)
I have greaves disease, which has now caused TED. My eyelids above my eye lid crease are swelled, under my eyes are puffy/swelled, and my left eye is budging. Noticeable and my confidence has just deteriorated badly, I don't feel like me no more.
I went to see the eye specialist 6 weeks ago, I'm back there tomorrow for my 6 week check up.
He advised, that they have a system that they grade you on, 1-7, 7 being the worse grade.
He graded me at 3 and said I'm border line. I have been taking selenium 200 tablets once a day, and selenium eye drops and been advised to hot fanel my eyes daily. I have done all this and see no improvement yet.
Will this ever get better? Has anybody else been through the same as me, when did you start see improvements (if any) Any advise to reduce the swelling around eyes? Will my eye ever go back to how they use to be
I'm currently taking carbazole for my thyroid, which has decreased massively. Any advise would be great.
Thank you in advance.
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jess1992__
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Do you have any results (with lab range) to post.? Keeping track of results is really important. Doctors don’t always test everything which should be tested. Including confirming Graves diagnosis with Graves antibodies.
How much carbimazole have you been given?
Regular testing very important until stable, how often are you tested?
Are you seeing separate specialist for eyes & endocrinology? Preservative free eyedrops are recommended, but sounds like it’s being monitored. Lots a people report great improvement with eye issues one levels stable.
I have a thyroid specialist and a specialist for my eyes: my 6 week check up is tomorrow for my eyes and my telephone appointment with my thyroid specialist is in the 22nd.
I have been of different amounts of carbizole, 50mg being the highest, which my go put me on but my thyroid specialist said that is way to high. Anyways I’ve been on 15mg for the last 6 weeks, my gp has said my T4 is at 7 and my T3 is at 4 and advised they should be higher.
50mg of carbimazole is very high dose. Ranges vary but by most lab ranges a FT4 of 7 is under range & FT3 of 4 very low in range. So GP put you on too high a dose.
Carbimazole inhibits how the body makes new hormone. Now the existing levels are low the carbimazole has to be adjusted to allow the right amount to replenish levels. Your doctors need to adjust by FT4 & FT3 as TSH can remain suppressed or low compared to levels.
Has folate, ferritin, B12 & vitamin D been checked. These can often be low with thyroid issues?
Graves is an auto immune disease and must be diagnosed by which antibodies were positive and over range in your bloods at diagnosis and would advise you start keeping copies of all your blood test result and readings so we can better understand where you are in this first phase of this disease and be able to explain things more thoroughly to you.
There is more than one reason to have been diagnosed hyperthyroid with Graves being just one reason, and why it is essential to know which antibodies are positive as not all health issues are treated with Carbimazole.
Carbimazole is an anti thyroid drug which simply blocks any new own thyroid production and slowly your T3 and T4 levels will drop back down into range and the dose of Carbimazole titrated down as you do not want your T3 and T4 falling too far through the ranges as then you are liable o experience the equally disabling symptoms of hypothyroidism.
The NHS currently allocate around a window of 15-18 months with AT drugs in the hope that your immune system calms down and that this episode is ' just a blip ' .
Quite why your immune system has decided to attack your body maybe something you may like to give some thought to and I found the most well rounded of all the websites I read is that of the Elaine Moore Graves Disease Foundation and there is a section on alternative, more holistic and complimentary options that you may find of interest
There is no cure for Graves Disease and it is said to be stress and anxiety driven AI disease, and can come on after a sudden shock to the system, or possibly just ' out of the blue - and your thyroid the victim in all this and not the cause - as the cause is one of your immune system having been triggered to go on the attack and turn and attack your thyroid and eyes.
The NHS currently allocate around a 15-18 month window with an AT drug before they tend to suggest a more permanent solution - and since we are looking at an AI disease you need time, which it seems, can be in short supple in the medical mainstream and the most current research is suggesting the longer the patient stays on the AT drug the better the option for the patient -
Graves is a poorly understood and badly treated AI disease so please do your research :
Are you now feeling more comfortable on the AT drugs ?
It is essential that you are dosed and monitored on your T3 and T4 readings and when metabolism is running too fast, as in hyperthyroidism, or too slow as in hypothyroidism, core strength vitamins and minerals tend to nose dive through the ranges and can compound one's health issues even further so please ask that ferritin, folate, B12and vitamin D are run and we can help explain any results and ranges you care to share with forum members.
Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).
I definitely recommend you follow Your specialist’s advice to take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many (like myself ) take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). I also have special night driving lenses as otherwise I wouldn’t be able to drive in the dark (as car and street lights still cause difficulties).
If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.
I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area ( tedct.org.uk)
I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling. Having FT3 higher in the range was recommended by my TED specialist ophthalmologist and this had a significant effect on reducing my eye swelling.
I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.
I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health (recommended to me by a TUK member with TED, Ling) so this is worth considering if you have any concerns about your vision.
Please be reassured, my eyes now look nothing like they did 2 years ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world.
Please keep posting if you need any further advice or support 🦋
My eyes have never returned to ‘normal’ as they are slightly asymmetrical, with one looking a little larger. However they look massively better than they did in the active phase of my TED. It took 18 months overall for my eyes to settle.
Absolutely no advice but just want to say I could have written this myself.
I booked an appointment at opticians after noticing my left eye bulging and being noticeably different to my right eye.
I had been taken medication for around 6 weeks and then my eye started to get worse, I don’t know why or how when surly as my levels where stabling surely my eyes shouldn’t then be effected.
Opticians said there’s 2mm difference in my eyes but honestly it looks so much worse than it sounds! My specialist said he would refer me to eye specialist but apparently he’s not overly concerned even though it’s got worse since I last saw him.
I also discovered at opticians I have double vision in the budging eye! Hoping it all starts to reduce, there just doesn’t seem to be any advice or help out there that’s clear enough to understand how it will improve!
Snap, I'm also suffering with TED in one eye just and I look to the mirror and cannot recognise myself, and it is the part that is most affecting me emotionally, and apparently no one, my doc in the GP or the endo, concerned about this. So far just my doc in the GP had been in presencial consult, my endo just called me once and is communicating by letter. My eye lid shut a little bit and it was in the end of April, when I decided to go to the doc and then I was diagnosed with Graves disease.I'm taking carbimazole 40mg. In the first blood test, after 2 month in carb, my body was totally in hypo, so the endo sent me a letter saying me to keep the carb, but add the levothyroxine (75mg). I'm feeling much better now, but the lack of attention that I feel they are giving for the problem of my eye, or someone to see me in person to evaluate is overwhelming me. 🥺 There is almost no information about TED or if it has improved or not, anyone else has some update in how's the TED now after some months? Or if something else, treatment or something had been done? Thanks, just wanted to vent as well...
Thanks for replying me PurpleNails.Indeed I replied here because I'm seeing that 2 people were having the same issue as me and they're in treatment, so I'm really interested in knowing some update on their TED issue after these 9 months, but yes, I'll post my introductory history in a new post. Thanks in anyway.
Jess1992 will get an alert to let her know you replied to her post tamara , but the other members who had the same problem will not get any message , so are unlikely to see your comment .
if you want to ask them for an update , you would need to use the reply box directly below their comments ( then they will get an alert too)
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