Hello everyone,
I have hyperthyroid graves disease and i have been in Thyrozol 10mg medication (daily) for 7 months now in order to fix the level of t3 and t4. Now i have the levels fixed.
I have issues in my eyes as per the photo.
Why this happens and can it go back to normal? If yes how? Is the removal of thyroid necessary? Thanks.
Hello I have graves and because it went on for so long untreated I have ended up with permanent TED. When it was bad I had double vision especially when I looked to the left. After over a years treatment on carbimazole and a couple of changes of glasses the double vision went away but not totally on the left. If I am over tired or stressed it shows up in my eyes. Removing the thyroid is a no no according to my endo as it would cause a massive thyroxine spike that would damage my eyes even more. So I have been on maintenance 5mg Carbimazole for the last few years. My eyes will never go back to normal as I was untreated for a long time.
Isnt a surgery possible in your case?
Yes they offered surgery, but he said it was only done for cosmetic purposes and it would not stop further double vision problems arising. So I did not go for it. My best bet is to keep the anti bodies down: gluten free, low stress, eat well, keep vitamins and minerals at optimum levels. No smoking and low alchohol consumption.😊
It's called thyroid eye disease, here is some more information for you:
I have been suffering of the same thing and have been troubled by the same unknowns.
Back in feb 2013 I've got a rapid onset of Graves-Basedow, with evident symptoms that were quickly diagnosed. The signs were there for a while, but I wasn't aware of the cause for some time.
After immediately starting the thyrozol I had to stop and switch to an alternative due to an allergic reaction to it.
In that summer I've went to the sunny Spanish coast and spent time at the seaside, feasting on the excellent seafood there. No one told me that sun, salty water and seafood are not a good idea in my condition. And then TED started, with a galloping progress. The only thing keeping it in check was the large doses of steroidal IVs the doctors prescribed.
Meanwhile my thyroid blocking medication was slowly working and I still had a very high antibodies level - a predictor of a stubborn stance of the disease and therefore a high relapse rate indicator.
With TED in a hot, agressive phase and Graves statistically against me I had taken the decision to get the thyroid out of the game as soon as possible and this happened in dec 2013.
Nu that time I had moderate TED exophtalmy in the right eye, mild in the left one, double vision, red, dry, swollen/puffy, itchy eyes.
After the surgery it calmed down in a few months and it got into a cold phase, retreating to a tolerable level, but with some visible and functional effects permanently onset. I've learned to live with it and can confirm life continues with a little disconfort and scarring 
However, in 2017 I have decided that this could be further improved and taken on the opportunity to have an experienced eye surgeon available and ....performed a lateral decompression on the right eye socket - a somehow dirty job, but with a speedy recovery and much improved overall effect.
Exophtalmy was reduced to previous, functional level, double vision much reduced, dryness gone, one happy customer left in awe
One more thing not really acknowledged is that TED disease is/can be a recurring pathology. Getting out from a hot phase doesn't mean that it will not ever come back, over the years. Little is known about the mechanism of TED inserting but it seems that TRAB antibodies are at play in the process. That's whily, even after seeing consistent normal antibodies levels (3 years after TT) I still make a yearly determination of the levels. I'm really determined not to go through this shit again. I've done good that time but I'm not sure I could or would do that good once again...so better careful than sorry.
I'm not sure how this story answers your questions but the purpose was to provide you with a real life case information. If further questions shall be raised, please feel free to contact me, publicly or privately.
However, I shall clearly abstain in giving you advice on how to proceed, especially on the "shall I keep it or shall I dump it" matter of the thyroid.
I've found that this must be a personal decision because, whatever decision is made, we're playing with many risks, long periods of suffering and best chance is to stand behind your decision, whatever that is.
I stood behind mine and, when taken, I have solemnly promised myself never to regret or question it, as it was my best effort at the time, with the limited data and info that was available at that point, in a crisis conditions.
I hope this helps! Wishing you best of luck,
Cezar
Thank you Cesar for the valuable info.
Basically that may be effected by TRAB. My thyroid t3 and t4 levels are within the normal range now.
Would a eye doctor be helpful in this case?
Absolutely! I've found out that there are ophthalmologists with endocrine specialisation. However, I've only found one in my country.
And then are the orbital surgery surgeons. Different specialisation for a different stage.
Bottom line - clearly you should see somebody to monitor TED progress from Opthalmology point of view. If she/he understands endocrine mechanisms of Graves, even better.
What's your TRAb level now?
In june it was 5
Range?
Should be less than 1
If that's correct, then it's still high, which means do not come of the carbimazole to try for remission. It will cause your TED to worsen.
Stay on a maintenance dose if your FT4 FT3 are in range. When did you first start carbimazole?
In february
About 7.5 months. It's early days. It took about 3.5 years before my stubbornly high TRAb started to come down. Carbimazole works.
My TED was by turns active and inactive in the years when my TRAb levels were high. By turns I had proptosis, severe puffy eye lids, severe dry eyes, grittiness, light sensitivity. On hindsight, the active phases were usually during periods of chronic or acute stress, both physical and mental.
Do you have TRAb results from when u were first diagnosed? You can compare then and now to see if TRAb levels are improving.
You say your eye shape is changing. How do you mean? As the TED is worrying you a great deal, you should consult the opthalmologist asap.
Your latest post indicates you are still experiencing fatigue and a fast heart rate. Along with the carbimazole, lifestyle changes have to be made to eliminate as many stressors as possible. If one continues to live as before, even if your FT4 FT3 come into range, you can still experience symptoms, including developing new ones.
Have you been prescribed a beta blocker for the fast heart rate? Take it. The fast heart rate has to be controlled to prevent problems down the road.
As the carbimazole brings the thyroid hormones under control and you adjust your lifestyle, you will probably find your heart rate normalising as well. Physical and mental stress, anxiety, all these can cause the fast heart rate and palpitations.
When Graves develops, stress and anxiety affects the body differently than when the body was normal. Tiredness is one such effect.
Slowing down, resting more, these are prescribed. Of course not by doctors since they mostly have no idea what it means to live with Graves.
You ask if an eye doctor would be h1elpful. With Thyroid Eye Disease it is ESSENTIAL and I would advise you see one experienced in treating TED. Looking back your posts I see you were advised that you are now hypothyroid and this can worsen TED. This happened to me and I was changed to block and replace treatment. You still take an anti thyroid medication to control your Graves and hopefully help reduce the antibodies but you add in some levothyroxine to stop you going hypothyroid. For more info there is a book -Thyroid Eye Disease: Understanding Graves' Ophthalmopathy
by Elaine A. Moore and TEDct site has good info. The course of the disease is that it worsens , reaches a plateau then slowly improves. You need regular checks from an eye doctor that the swelling and pressure is not affecting your optic nerve
Thanks asiatic.
Isnt there a cure in such cases, i mean for eyes shape? Is it through surgery or medication..?
I went to a doctor but i dont think he is specialized in TED. He took the eye pressure and vision status and they were all good. He said that it may be difficult to go back to normal eye look but it can be enhanced a little bit. He said the most important thing is to treat the thyroid disease.
Surgery is possible but only after your TED has reached the recovery phase and has stabilised. Most people with mild to moderate disease would recover enough to not require surgery. It is early days for you. It took over a year before I reached the plateau stage and 2 years on I am still recovering. I had my eyes checked every 2 months and was offered steroid infusions when at its peak. I know I am repeating myself but I strongly believe going hypothyroid can worsen your eyes so I would keep a careful watch on your fT4/fT3 levels as yours although in range seem very low.
I'm having the same happing 2 me 1eye is so much different than the other x
And You have hypo?
Since 2008 but I. Pure hypercholesterolaemia
Hi Santos,
Sorry to see your eyes are giving you trouble. An unfortunate side affect of Graves'.
To answer your question, some people eyes do go back to how they were before or certainly improve greatly. But as no one really understands the eye disease there is no one 'fits all' situation. You will have Graves' for the rest of your life with or without a thyroid. Only 0.3% of people with Graves' have severe eye problems.
I have yet to see an endocrinologist that has the slightest clue with regard to the eye disease and this to me is dangerous. Your first and only thought is to ask to an specialist ophthalmologist asap. This should happen pretty quickly. Oddly ophthalmologists generally like to see TED cases! Don't know why. Perhaps it's a learning curve.
They will measure the pressures in your eyes, take a picture of you and send you for a CT scan. All important rolling forward. But the best thing they will do is understand the best level of medication for you. They will help you if your thyroid does need to come out.
TED generally gets better long term results if treated correctly early. So again, I urge to ask for a specialist.
I wish you well.
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