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  • Anonymous
      Post count: 93172

      I was diagnosed back in February but my doc said because my thyroid level reading was normal, he doesn’t give any medication. Apparently, the level was within the normal range but another test showed readings off the chart. I’m totally confused. I’m suffering from all the symptoms including TED which is getting me totally depressed. My left eye is being affected and hurts all the time and I feel like I can’t open my right eye. I’m scheduled to see an endo at the end of next month (earliest appointment)but can’t help thinking that I’m not being treated correctly. Anyone else in this position?

      Anonymous
        Post count: 93172

        Hi, Hunterk28, and welcome to the board. It is not uncommon for any of us to be confused at first, especially when it comes to understanding some of the tests that get run. One source of confusion is often equating TED with thyroid problems. It is entirely possible to have normal thyroid readings and still have a doctor tell you you have “Graves’ disease” based on what is happening to your eyes. TED can precede thyroid problems. And TED needs to be diagnosed and treated by an opthamologist, not an endocrinologist.

        As to one set of tests reading “off the charts” while another turned up “normal”, this sounds like the perfect time to get another opinion. Doctors do sometimes miss a diagnosis. We are not qualified to interpret test results here so you need to find a doctor willing to discuss things with you, and answer your questions to your satisfaction. If you do have Graves’ (of either sort, eyes and/or thyroid) you will need explanations from time to time. So a good working relationship with your doctor is a necessity.

        You might try to get one or more of the books listed under “Recommended Reading” on the main NGDF website, and do a bit of reading before the appointment with the new endo. They can help to give you answers to some of your questions, thus freeing up time at the appointment to get to topics not explained.

        Wishing you good luck,
        Bobbi — NGDF Online Facilitator

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