I have graves disease for 9 months now and now my t3 and t4 are within normal levels for 4 months. I am taking Thyrozol 10mg on daily basis. My trab was 5.04 in july.
Recently, i started having TED, and one of my eyes shape is changing.
The dr told me that i have to continue taking Thyrozol 10g. She said that surgery (removal of thyroid) will not cure TED, so she said no need for it since my t3 and t4 levels are within normal range and that to be patient since i may recover with the medicines after some time.
As i understood from her is that TED is depended on TrAB level, and that needs patience.
She will send me to a eye specialist.
I feel my eyes will get worse if it is not cured, and this is affecting my life.
Is it true that removal of thyroid will not treat TED?
She said that Although my t3 and t4 levels are normal, i still have the same symptoms of hyperthyroidism (tired, fast heart beat...).
What do you guys think?
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Santos82
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TED is a separate issue and it has to run its course, I had it very mildly and was given steroids after I had RAI treatment to prevent it getting worse, no problems since. Hypothyroid people can also get TED.
I agree with what your doctor is telling you and you are fortunate to have an informed person looking after you not all of us do !
I can understand you are worried about your eyes but unfortunately there is no cure and it will run its course, plateau and then improve This might take a couple of years. As long as your thyroid levels are controlled and you are being checked regularly by an ophthalmologist there is not a lot you can do so youhave to be patient. My endo told me my TRAb would need to be below 5 before I could have a trial off meds to check for remission (you are never cured )but even being in remission would not necessarily " cure " your TED.
You say your levels are in normal range but you still have hyper symptoms. Perhaps you need a higher dose of Thyrozol.
Normally we are on thyroid meds for at least 18 months.
Like Graves, TED is caused by antibodies which attack the thyroid in the case of Graves, and the tissue surrounding the eye in the case of TED.
Although the two diseases are separate, getting the thyroid under control is often followed by an improvement in TED. There is SOME evidence that TT (surgery) may improve TED, but most cases of TED are mild, so may resolve anyway. This link refers to a study where TT was found to improve TED.
RAI (radioactive iodine treatment) for persistent Graves’ may exacerbate TED symptoms, so is not generally recommended if you have TED, especially if it’s active.
If you smoke, now is the time to stop - TED is much more likely in Graves’ sufferers who smoke, and once you’ve got TED, smoking can make it worse.
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