Discussions By Condition: Medical Stories

thyroidits 10-year diagnosis

Posted In: Medical Stories 0 Replies
  • Posted By: Cheletwin2
  • August 23, 2007
  • 02:34 PM

Suddenly one day when I was 19, I lost my voice. A few days later my voice came back, but I still felt pressure in my throat and felt someting was wrong, so I went to the doctor. My thyroid was swollen. I went on thyroid hormones to decrease the swelling and immediately was hyperthyroid and was sent to an endocrinologist. He did another blood test that was normal, he said it had corrected itself but I would probaly lose all thyroid function eventually. I felt awful almost all the time. I woudl go for days without being able to sleep and be hungry, then swing to complete and utter exhaustion, too tired to eat. In college I had free medical care, so at each swing I requested a blood test, the results were always different. High, low, normal, repeat. I could have recorded the responses I recieved from my doctors, it corrected itself. However, these symptoms are classic compensated hypothyroidism. A few years later I moved to Tampa, while there I suffered from fatigue so bad I couldn't go to work. Not working wasn't an option, so I found my old trial of thryoid medicne, got some of my mom's thryoid medicine (which she didn't like and wouldn't take) and exhausted those prescriptions before going to another endocrinologist. I told him I was already taking thryoid medicine and just needed a prescription. He wasn't happy about it, but he gave me the medicine (synthroid). I didnt' feel well on syntrhoid and wanted to try something different, he refuesed. So I found another doctor, one that likes to do things naturally, adn was put on armor thyroid. I didn't like ti either. Then I went to a free clinic when my prescription ran out, blood levels revealed low thryoid, she switched me to levoxyl, which I love. It took me 3 years to get stabilized. But the swollen thyroid remained (multinodular goiter), as did the ups and downs of thyroid function. It was uncomfortable, I couldnt' sleep on my back becasue of the pressure. Worse was not knowing how I'd feel the next day, tired or wired, or somwhere in between.

More recently, I have moved again and found a doctor I like that finally gave me a diagnosis of thyroiditis and understood how awful the ups and downs were. My thyroid medicine had to be increased again, that constantly failing thryoid. But the pressure and swelling became worse, I was choking over everyhting, including water. So he approved for me to have thyroid surgery. The surgeon told me I didn't need the surgery, but I disagreed. So he said he would remove only the right side, after a bit of a discussion, I convinced him to remove at least part of the left side. Durign the surgery, he found my thyroid so emaciated that he had to remove the whole thing. It is nice to finally have a regular life and to be able to sleep on my back.

My twin sister has compesenated hypothryoidism, but doctors never want to do anything about it. She will have a high TSH with normal T3, and the doctors don't see anything wrong. What they don't see is the fatigue, and the impending failure. They wont' treat it. She also has nodules, in fact, they grew very rapidly and, in an ultrasound, are the kind that can be cancerous (2% are found to be cancer), but have not done anything else. She is too tired (or is it lazey) to persue it any further. She sees one of the same doctors I do and I keep trying to convince her to get it removed, but she doesn't seem to want to do that.

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