Grave eye disease (Exophthalmos)

Hi imran and  tatiana

Are u in the UK?

Most eye hospitals have helplines?

Moorfields Eye hospital, London.    

        

St Thomas's Hospital London has an eye clinic with drs from Moorfield Eye hospital in attendance. Please ask a dr for advice because you cannot put just anything into your eyes hoping it willwork. Your eyes  are precious. I feel sure that the eye doctor will guide you. You can look around for an eye dr who has specialist knowledge about graves disease. The dr can order antibody tests as well .

​I had antibody tests to exclude an auto immune disease of the eye.

Hi Cindy and Imran, 

thank you so much for the info. Unfortunately I am not in the UK . Neither the endos I have consulted with , nor the 3  ophtalmologists  seemed too knowledgeable re the exhophtalmos.

Actually one took pics to show fellow doctors as he had never seen one before! ( note it is not a major case of bulging eyes) 

the option they offered is the orbital decompression, which sounds like pretty heavy surgery from what i read. Not for me.

have worn sunglasses all my life due to light sensitivity, will just continue.Should you hear of alternative options to that invasive surgery, would really appreciate it if you d  let me know.

what were the antibodies tests for your eyes they prescribed for you? 

Imran, the bulging is due to compression from behind  the eyes, which makes them " pop out" , as it were.

so no , ice cannot possibly help. It might even trigger an optic nerve reaction to cold. 

I agree with yyour comments about the ice. The ice will cause the blood vessels in the ee and going to the eye to constrict this will restrict the flow of blood and heaven knows what would happen then.

I will google exomphalomus and the treatment of bulging eyes diue to graves disease/thyroid dsease. Could u private message  me I can send you links to Moorfield eye hospital in London. This is a world famous eye hospital with people coming from all over the world for treatment.

Thank you Cindy, that s very kind.

will pm you later. 

When it comes to meds, I always discuss dosages with my doc.  He adjusts meds and I take care of supplements.  If you still have eye issues after taking Selenium, you need to see an eye specialist who is trained to treat Graves eye disease.  Not all of them are.  My ophthalmologist gave me the names of those who are.  

Imran

Brazil nuts contain selenium. Some people say that taking two a day is adequate.

Regards

Cindy x

thanks delirious for your reply.

i am taking selenium tablet that is 100um but  dont know for how long i use it. 

thanks linda for your message.

i am taking treatment from endocrinologist ,, dr. told me that neomarcazole 5mg take on second day. one day take and second day not. 

now tsh and free t4 is normal. dr.told me that now stop taking neomarcazole  and after one month again repeat tsh and free t4 test. if it is normal then it will be good. if tsh increase then dr.will advise me RAI radio active iodine therapy . i also reads on net this that RAI treatment increase eyes swelling and i have already swelling in my eyes.

i am very confuse.

 

There was a lady who posted to this Board that she had RAI treatment for her Graves disease.  She did not have any eye problems at the time of treatment but got Graves eye disease 7 years after the RAI was done.  That's because treatments like RAI and surgery do not treat the antibodies that are causing this disease.  Also my lab results have been normal for quite some time and I am taking Methimazole 2.5 mg every other day for 4 days a week.  I am happy that my Endo has not been in a hurry to take me off of this because I did have a flare of symptoms one day when I took this every other day for 3 days a week.  If I had to take this the rest of my life, I would not mind as it is an extremely low dose and I feel okay on it.  

Hw are the antibodies treated ?

To my knowledge, they don't treat antibodies.. Often antibodies will lower into the normal range once patient becomes euthyroid (all thyroid tests normalized) but not always.  I am still taking a very low dose of Methimazole. Some doctors stop meds when patients become euthyroid and they don't test antibodies.  My Endo will not do that. He  only stops meds when patient is both euthyroid and antibodies are within normal levels.

dear friends. 

i had hyperthyrodisim ( grave disease ) from last two years. i had beenn using carbimazole 5 mg tablet.  During this time i got exopthalmus ( bulging eyes)  and my Tsh level imblance . when i increase dose it was normal but when i decrease carbimazole treatment my tsh went down. there were flatucation in my thyroid hormone. one month before i had RAI  Therapy and used 1 radico active iodine 5 mci . with this i was taking steroid ( deltacotril ). now i am  oncfuse that for how long i use steroid and when will i repeat my tsh test to  know about thyroid hormone level. 

regards.

RAI will make your eye problem worse.  You need to get your antibodies lowered.  Watch your diet and L-carnitine, vitamin D and Magnesium helped me with lowering antibodies.

Thanks Linda, For your reply.

my Anti TPO test is normal. ...

i am sad very sad to my eyes swelling. i have used selenium as well but could not reduce my eyes swelling...

 

Hi Imran, sorry to hear that your eyes are giving you problems again. Anti TPO is mostly raised in Hashimoto's thyroiditis patients. My Anti TPO test also showed normal (I have Graves' disease). 

Have your thyrotropin receptor antibodies (TRAbs) been tested? In many Graves' patients the stimulating TRAbs are causing the hyperthyroidism. 

The other thing: Did you have a scan of your thyroid? Is your thyroid creating additional problems by being swollen? Do you have hot nodules? In such cases thyroid surgery or RAI might make some sense.

But to recommend RAI just because your eyes are bulging makes little sense. It has been shown that even complete removal of the thyroid will not guarantee that the thyroid antibodies (that cause Graves' ophthalmopathy) will disappear.  

 

thanks danR.

no , i have not done TRAbs test yet ?

i have done CT Scan which only shows hyperthyrodisim. i have no nodules. my thyroid has no swelling.

sometime when i wake up from sleep my swelling is very increase and also have diplopia ...

one female in our family she has hyperthyrodism and also had nodules . she did RAI . now she is normal only taking thyroxcine. 

To decrease the swelling of your eyes after lying down it is recommended to sleep in a slightly raised position (for example by using with a big pillow). 

Did your female relative also have Graves' eye disease? 

Just to clarify, RAI will most likely take you from hyperthyroidism to permanent hypothyroidism. Like your relative you will then have to take thyroxine for the rest of your life. I just wanted to let your know that RAI will not necessarily cure your eye problems. 

 

I totally agree with Dan.  Having RAI or surgery will not necessarily correct the eye problems.  In fact, one lady posted to this Board that she got Graves eye disease 7 years after she had RAI.  The antibodies tested for Graves eye disease are TRAb or TBII.  The anti-TPO is a measurement of inflammation.  In my case, just normalizing my thyroid hormone values (Free T3 and Free T4) did not lower the antibodies.  When I started taking supplements, I was able to lower my prescribed medication dosages and that seem to be what lowered my antibodies because at my last visit my doc said my antibodies were not detectable.