[Maha April 28, 2019 at 3:53 pm Post count: 3]

#1060959

Hey
Iam 29 yeras old . I suffered from graves since 6 -2018 with no goiter or nodules only high tpo and thyroglobulin antibodies >1300 ,, i took carpamizol for 3 week then i have a rough skin rash aand articaria then i stoped this medicine for month then my doctor decided to take RAI w dose 20 mcg after 2 weeks of rai my eyes become very swollen and i have puffness in uper and lowe eye lids this continued and increase .. after 2 months my thyroid become underactive and i gained alot of weight suddenly then i started levethyroxine but my eyes worsened and i had diplopia in the morning , lighty sensitivity and watery eyes .. my doctor described prednisolone 40 mg for week then tapering but every low dose my symptoms come back .. iam on prednisolone for 3 months till now iam on 10 mg now but my eyes worsen and iam feeling it begin to bulge and some eyelid retraction .. my trab level 4 months after rai was very high ( > 40 ) .. i seek many ophthalmologist with no hope but tl last one say that i sould go for thyroidoctomy to reduce antibodies and stop this reaction and my endocrinologist refuse that .. what should i do plz iam very afraid of my eyes progress and i have no idea what to do no .. my thyoid levels is still un stable highs and downs sometimes iam hypo and others become hyper .. is really thyroidoctomy can solve this eye problem or can o become normal again ??

[KimberlyOnline Facilitator April 29, 2019 at 3:21 pm Post count: 4294]

#1185575

Hello – We are fellow patients here, not doctors, so can’t give medical advice. We’ve heard stories from some other patients who believed that they saw improvement in eye symptoms after thyroidectomy. And there was one study from University of Michigan that indicated patients who undergo thyroidectomy have less risk of eye involvement.

However, I don’t think anyone (including a doctor) can tell you for sure that thyroid surgery will address your eye issues.

Getting your thyroid levels stable is definitely important. Hopefully, your endocrinologist is working with you to find the right dose of replacement hormone that will keep your levels normal and stable.

Wishing you all the best.

[Maha April 29, 2019 at 8:52 pm Post count: 3]

#1185576

Thnx for your reply ..
Is someone here suffering from the sam problem or make surgery after rai .. can we remove thyroid after the destroying effect of rai ??
And is stable tsh level can improve eyes really ? Or only low trab antibodies can solve this ?? What can i do to stop this active phase or slow it ? I heard about rituximab .. can it help ?
Can you help me to know plz ?

[Liz1967 April 30, 2019 at 8:30 am Post count: 305]

#1185577

You can have a thyroidectomy after RAI, and there is some suggestion of RAI after thyroidectomy. The object of both of these plans is to be sure all of the thyroid is totally removed, no remnants left. I had a thyroidectomy and it did cause the eye disease to burn out pretty rapidly but I also had intravenous and oral steroids as well as orbital radiation as my eye disease was severe, eventually requiring many eye surgeries to repair the damage. There are some studies showing benefit to rituximab. Bottom line, the eye disease seems to burn itself out after 18 months or so, and steroids, thyroid removal, etc do appear to hasten the process. Oral steroids are a great help in reducing the inflammation until it all stops progressing and removing your thyroid would eliminate any thyroid tissue remaining that could start chugging out hormone again. I understand how you feel, I have been there and it is terrifying. In the end, find the best oculoplastic surgeon you can as well as a pediatric ophthalmologist for the double vision. These docs can repair the damage done once the disease has stopped getting worse.

[Maha April 30, 2019 at 3:18 pm Post count: 3]

#1185578

Thnx for ur reply
So u think that thyroidoctomy for me now is useless ??
My thyroid now is dead and my endocrinologist say there is no thyroid to remove but my ophthalmologist see that it can make sense with my eye

[Liz1967 April 30, 2019 at 4:04 pm Post count: 305]

#1185579

RAI can start the eye disease in some people. Yet sometimes the eye disease occurs after thyroidectomy, altho that is rare. Antibodies attack your thyroid gland and only attack eye muscles incidentally. The thyroid is the main target. RAI kills the functioning of the thyroid but the tissue is still there. So your ophthalmologist would be the one I would heed. Removing the main target of the antibodies, the thyroid tissue, may hasten burn out. Thyroid cancer patients have radiation after surgery as they cannot risk even a tiny bit of thyroid tissue remaining so this may be your doctors thinking. This is a mysterious disease in many ways. There are no really good options to stop or prevent the eye disease. All you can do is try to control the inflammation, speed up burnout if possible, and surgically fix the damage done to the eyes when it has burned out. Wish there were better options or at least more certainty. Ask your ophthalmologist to recommend a thyroid surgeon and set up an appointment to talk to him, see what he says. My endocrinologist did not recommend thyroidectomy, but my ophthalmologist did, as did the surgeon. Your case is different as you have had RAI but you have to trust your doc, he has access to latest studies.

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