Should I have a throidectomy?

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I was diagnosed with Graves a year ago after suffering a thyrotoxic episode with dangerously high thyroid levels, palpitations, sudden weight loss, muscle wastage, tremors and a range of other symptoms. As part of this I developed two multi cystic nodules on my thyroid - 1 is 3cm diameter and the other 5cm. I am now on block and replace an things have stablised well with all levels in the normal range and no recurrence of symptoms.

As I have been on the medication for a year the consultant wants to remove all medication to see if the thyroid is now stabilised. I am due to have an antibodies test to see if the levels are still as high as they were, which I have been told is an indicator of a possible relapse. The plan would be to remove all medication and see what happens - if I relapse then the consultant wants me to have a thyroidectomy. However, as my multi cystic nodules are still clearly evident with some possible growth I have been asked to consider a thyroidectomy anyway. I have a hoarse voice where one of the nodules is pressing on my vocal cords and there is an embarrassing squelchy noise when I swallow.

I have read some really positive things about having a thyroidectomy, including not having the high levels of medication but I have also read stories of high weight gain and other side effects. Can anyone let me know what their experience of this is so that I know what to expect and what I should do?

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2 Replies

  • Posted

    Hi, regarding a thyroidectomy, it would be great if you could make an appointment with a surgeon to discuss all options as well as the risks and benefits.

    Since you have been on a block and replace regime you had the advantage of testing how well you do on Thyroxine supplements. After a thyroidectomy you will be on continuous "replace" and there will be nothing to block.

    Your thyroid cysts are rather large and are clearly causing you problems. Are they liquid filled or partly solid? Can they be drained?

    Finally, with Graves' disease, the chances of a relapse are roughly 70%. But who knows, you might be among the lucky 30% and never have a relapse. All the best. Let us know how you get on.

  • Posted

    Hi Clare,

    This is one very educational subject that many of GD patients face under current or possible future condition. I may one day encounter the same situation while recovering from the disease. So, wish you the best as you are ending the B&R treatment with good thyroid levels and diminished symptoms; may the GD antibody have retreated and nodules stop growing and could be removed (drained as Sam mentioned). Let us know how it goes (antibody, nodules). Wish you a good remission with no relapse and no thyroidectomy (if unnecessary).

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