I was diagnosed with Graves in February 2016.
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I am fortunate as I have not ever had any serious health issues before this and I am 65 years old. I went to doctor for an annual check up with no obvious symtoms. My blood work came back with suspect hyper thyroid levels and the doctor then order more comprehensive thyroid testing. It was Graves and he immediately referred me to an Endocrinologist who put me on 20mg of Methimazole and told me to come back in 4 weeks after another round of blood work. Needless to say my head was spinning at this surprise finding. Within 2 weeks on the medication my eyelids and area above my eye started to swell. I thought I had an allergy to the medication as the doctor told me this was not normal. He also told me that I would not likely have any eye issues because with my numbers as high as they were (Thyroglobulin Antibody (0.0 – 115.0) 3542, TSH (.45 – 5.5) < .00,Thyroid Peroxidase Ab (0.0 – 34.0) 228,TSI (0 – 139%) 330%, T4 (.93 – 1.70) 3.32 ) my eyes would have been affected already. Keep in mind that I had routine blood work the previous year that was perfectly normal. My T4 and TSH is now being well controled with the medication now at 7 mg per day but here it is April 2017 and my eyes are now "moderately" protruted but still very swollen around the obit including my cheeks area over my sinuses, my eyes water constantly with almost a thick liquid, I am terribly sensitive to light. I am so tired of this as I physically feel great but look terrible, like I have been crying all night. Can anyone offer any help with the swellng and with the mild despression and frustration this causes?
0 likes, 9 replies
lisandra_90524 nolagirl1
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linda187 nolagirl1
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jan.h nolagirl1
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You can't have RAI dispute to the eyes problems , I'd suggest surgery as your Graves is obviously already causing you misery .
im on the list, I'm scared but a but relieved as I tried so hard but felt so ill.
all the best xx
jan.h
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Goody2shoes nolagirl1
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Hi I've just been diagnosed with Graves about 6 weeks ago. Is it a forgone conclusion that I will get eye disease or does it vary from person to person. I'm on 30 mg of Carbimazole daily and can't get an endocrine appointment until September.
linda187 Goody2shoes
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lisandra_90524 linda187
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Yes, studies show that RAI makes eye problems worse. However, even with surgical removal of your thyroid your eyes still run a small risk of also being affected. I was told I would be taking prednisone one to two weeks before my thyroidectomy and continue taking the prednisone for three weeks after the surgery. Apparently when they surgically remove your thyroid there is a surge of the TSH and that can possiby affect your eyes initially. I was told by my oculaplastic surgeon that I have permanent damage and that my eyes will not return to normal. Therefore, after the thyroidectomy, I must consider orbital decompression. He said one eye is operated a month apart and, once both eyes are operated on, you wait another month so they can deal with the lid retraction by making a smal incision that lowers the lid. So much to consider that its overwhelming me. Right now my T4 and T3 are within normal range but my TSH is at a low 0.03 for the past year. I am taking all the necessary supplements: selenium 200 mcg, l"carnitine 3000-4000, Vit. D, etc. My labs are all good except for the low TSH. I'm exercising which helps a great deal. My downfall has always been managing my anxiety and stress.
linda187 lisandra_90524
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My TSH remained low until I added Acetyl-L-Carnitine to my supplements. The Regular L-Carnitine raised my TSH from less than 0.001 to 0.12 but that was not enough. The Acetyl just shoots it right up but you need to be careful to stay on top of it and get frequent measurements and adjustments to both your meds (let the doc do that based on your labs) and supplements (you can do that). Because of it's potency if you are going to try it I would try 500 mg once a day first taken at the same time as your meds. See what happens and how you feel. I would not take more than 1,000 mg of the Acetyl daily.
linda187 lisandra_90524
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