I am a 68 year old female who has been on PTU for toxic multinodular goitre since March of 1994. I had 2 surgeries for removal of thryoid adenomas in 1968 & 1972. Each time another adenoma popped up. Now there is much scar tissue around my thyroid gland. I am very much afraid of the radiation therapy since I live in the Catskills a long way from a hospital should I go into thyroid storm after that treatment.
Now I fear that the long term use of PTU is causing me, or a least contributing to, debilitating pain/stiffness in my limbs--shoulders/arms/wrists/hands & knees/ankles/feet. In 2001 I was diagnosed with Soft Tissue Rheumatism. It seems to be getting worse over the past year. Affecting my tendons.
I have seen 3 endocrinologists over the long term. They all seem much more fluent in treating diabetes than thyroid disease. I am at a loss & very discouraged.
If you decide to stay on anti-thyroid drugs for toxic nodular thyroid, methimazole is a better choice. You're right that the other options would be additional surgery or radioactive iodine and if you need additional treatment. In most cases the risk of thyroid storm should be very very low if properly prepared for radioactive iodine. Surgery is not out of the question even with the previous scar tissue, this may be something to look into as well. At this point it depends on how much anti-thyroid medication you need, your other medical problems and the severity of the hyperthyroidism as well as if you have any compressive symptoms from the nodules. Multiple factors need to be taken into consideration when deciding what the next step is. If you're in the New York area, a trip to the Columbia Thyroid Center may be appropriate.
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