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?                                                                                            

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  • Posted

    I found out I had Graves when I went to the ophthalmologist complaining about watery, red, gritty and itchy eyes. A couple months later my eyelid swelled up and my eyes began to protrude. This all began June 2016 and by September I had lid retraction and all the classical signs of Graves ophthalmopathy. As of January 2017 my eyes have been stable. I am apparently out of the active phase and entering into the inactive phase. I have permanent damage. I scheduled a thyroidectomy for the end of June and will see the ocularplastic surgeon for orbital decompression in July. I, too, have always been healthy. Please see an eye specialist so they can monitor your eye symptoms.
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    Absolutely find a good ocular specialist.  Not all ophthalmologists specialize in this.  You may need steroid drops or ocular decompression surgery.  Some people get relief from putting cotton pads soaked in witch hazel over closed eyelids.  Also taking Selenium 200 mg a day helps the eyes.  I would also get tested for your Free and Total Carnitine levels, Vitamin D levels and Magnesium levels.  Madge on this Board can give you more information about other beneficial supplements for thyroid disease.  If any of the above levels show deficiency, then supplementiing with them will help your recovery.
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  • Posted

    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

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  • Posted

    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.

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    • Posted

      My disease was diagnosed early before my levels of Free T3 and Free T4 got too far out of hand.  However my TSH was less than 0.001 for 2 years before I took further action besides my medical treatment to get well.  I was started on a dose of 10 mg of Methimazole and stayed there for 2 years until I added supplements that helped improve my recovery.  Then I was able to lower the dose of Methimazole. That TSH level indicates that my antibody level is high.  My eye disease manifested as extremely dry and red eyes but not prominent eyeballs.  My ophthalmologist inserts collagen plugs into the tear ducts to give me more moisture.  I have to get this done every 3 to 6 months.  $50.00 is a small price to pay for comfort.  She also knows ophthalmologists who specialize in Graves eye disease ocular surgery so that is good.  The more you do to normalize your levels, the better chance you have of avoiding eye disease and I do think it depends on the severity of your disease.  One lady though got treated for her thyroid disease with RAI (radiation therapy) and 7 years later she developed Graves eye disease.  So the action I took by learning all I could about the disease and natural as well as medical means of treatments lowered my antibodies to a non-detectable level.  What made the difference was the supplements I took.
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    • Posted

      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.

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    • Posted

      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.  

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