Graves disease and proptosis
Common Questions and Answers about Graves disease and proptosis
graves-disease
I have both Graves and TED. The endocrinologist is treating me with Methimazole and Propanalol. 10 mg each daily. He wants me off Methimazole soon and do RAI. Since Methimazole can cause agranulocytosis it is a concern to him. I am on a 10 mg of each daily. However, the only blood tests he will order is TSH and free T4. My ophthalmologist ordered a 10 week regimen of steriod infusions for TED, but it didnt help my proptosis or double vision.
Similarly, sarcoidosis of the thyroid gland may develop in response to an established thyroid disorder including Graves’ disease, nodular goiter, and thyroid cancer. Patients with Graves’ disease may also have concomitant conditions of sarcoidosis affecting the lungs. Patients with systemic sarcoidosis may also develop sarcoid lesions in various organs including the thyroid gland.
The most common cause of this condition is related to the thyroid, sometimes called graves disease or thyroid eye disease. Other causes are low or high flow cavernous fistulas, cancer in the eye socket, orbital inflammatory disease and other very rare causes. Sometimes temporary eye muscle paralysis problems can cause this problem too. Again, thyroid disease is the most common cause. You need to seek the care of an Eye MD (ophthalmologist).
Orbital decompression is usually done for proptosis (bulging) of the eye, most often resulting from Graves' disease. Decompression might be needed to decrease pressure on the optic nerve, if the orbital fat and muscle enlargement are compressing the optic nerve and causing visual loss; if there is such severe proptosis that the cornea is being damaged by exposure; for severe disfigurement. If this is a mild cosmetic problem, then decompression is not usually done.
I found an article online of a study done in Italy where (and I'm going off a foggy memory) where they performed IV Methylprednisone (pulse therapy) for 3-5 weeks and over 87% showed significant long-term improvement. There was only 25 patients in that study, but, I am a 42 year old male diagnosed when I was 24 and I still have the inflammation around the eye lids and some minor proptosis. Health and nutrition is excellent, I'd like to "get back to normal".
Has anyone had eye surgery for Thyroid eye disease from Graves? My eyes are still bulging after a year on meds and while my eye doctor says it's not that bad, I am tired of children trying to engage me in staring contests and looking surprised in every photo. I don't look like myself and want help. Can anyone provide input who has had eyelid surgery? Good or bad...I just want to learn more.
I went to see an Opthalmologist and she did all the tests and ruled out Graves disease etc as there is no pressure or inflammation. Thyroid is normal and has been for several years. I just did the MRI with contrast and am waiting on the results. If it is also normal - which I suspect it will be. I don't have any paralysis on my face, no headaches or pain. What doctor should I see next and what tests should I get?
Please help as this is really depressing me.
You need a second opinion.
Based on what you describe, you have autoimmune thyroid disease with markers for Graves' (TSI) and the other common antibodies (TPO and Tg) that are usually associated with hashimoto's. Graves' and Hashi should be considered as entities on two ends of a spectrum, not two completely different diseases.
This may cause fluctuating thyroid function to hypo and hyper and back but this is not common.
My mother was diagnosed in her early 40s with graves disease and her thyroid was removed, around the same time she was diagnosed with stage 3-4 colon cancer. I'm aware there are connections between autoimmune diseases and thyroid and intestinal diseases/conditions. As I'm getting older I'm noticing I'm following in the same physiological footsteps my mother did before she was diagnosed.
I have graves disease, but was in remission. Then I had cancer and chemotherapy. My TSH level is hyper again and my other tests normal. The doctors won't say if chemo can activate your graves disease. They do say that a physical or emotional change to my body can trigger it. My thoughts, Cancer and chemotherapy are big time physical and emotional changes.
19 year old son was getting hives mainly at night. Diagnosed with Graves disease a couple weeks ago and on meds now. is this normal with graves?
They have removed me off of my medicine one time to see if my Graves disease had went into remission and within two months it came back with TSH levels of 0.003...basically non-existant TSH levels. They put me back on my 10mg Methmazole and within 3 weeks my levels were normal. That is pretty much a health summary of my graves disease for the past five-six years lol.
Hi, I'm 33 years old female and I have slight proptosis, horner's sysdrome, and ptosis of my left eye. Also left eye appears to be slightly misaligned, like it is up higher than the other. These problems appear to have appeared gradually in the last 5-10 years, because I can notice the ptosis in old photo's dating back that far. Had CT scan of head and neck, a chest xray, MRI of the orbits, and blood work to check thyroid levels. All tests came back normal.
It should be pointed out that, especially in the US literature, the term ‘hashitoxicosis’ is sometimes used to describe an autoimmune thyroid disease overlap syndrome of Graves’ and Hashimoto’s disease.2 In this article the term is strictly limited to the ‘leakage’ symptoms of active Hashimoto’s disease."
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I've had both Hashi's and Graves antibodies simultaneously but I had been diagnosed with Hashimoto's thyroiditis previously.
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