[kismetyeah]

in reply to: RAI update #1067187

I agree that most people don’t even know what the thyroid is for, or what havoc it can wreak on a person’s body and emotions! I was diagnosed with Graves two years ago, but the doctor said, based on my symptoms, I probably had it for ten years prior to that, in remission, off and on. I lost my marriage, and never knew why. I was misdiagnosed with post partum thyroiditis, but with the recurrence, was properly diagnosed after a RAI scan two years ago. I started a new job and immediately, the Graves kicked in again. I opted for RAI, and was treated on July 2, hoping to only be out of work one day, and recover during the July 4 weekend. It turned into a nightmare, with a severe thyroid storm, and the collapse of my esophogus, my eyes bugged out of my head, and I got migraines and double vision. I was fired for missing three weeks of work, though it was documented by my endo. Now, I am hypo, and I was given 150 mgs of synthroid, which was too much, so I began having hyper symptoms again. I also still have some hypo symptoms, which is confusing. I can barely walk due to joint pain, I have palpitations, I’m exhausted, but can’t sleep. My doctor lowered my dose of synthroid to 125 just prior to Thanksgiving, and said by middle of next week, I should see a change.

What went wrong? I have not met anyone who has encountered this with RAI. My doctor wrote a letter to my work stating that my reaction to RAI was severe and uncommon, and stated to me that he had only seen one other patient in his years of practise with this reaction. I can’t collect unemployment because I have to be physically able to search for, and secure a job, yet I am not eligible for disability, because this condition (hopefully) won’t be a lifelong issue that will affect my job performance or ability to work. I have lost everything, and am now a live-in caretaker for my 98 year old foster mom (I also have three kids at home with me, and my oldest, living away from home ,gave me my first grandchild last year! I watch him twice a week). The family just looks at me like I have three heads when I tell them that I don’t feel well due to my thyroid and Graves disease. My body is not something I have any control over anymore! Graves is not a known disease, and others who don’t have to deal with it, don’t seem to care, because they can’t "see" anything wrong. I just don’t want to complain, but how will they ever take this seriously?

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