Debussy - Still confusion

[Debussey]

Hi it’s Debussy here. Long time away but still battling to keep my thyroid, had a further appointment and still pushing me towards a decision. Now the Consultant wants a radio therapy decision. When I said “No thanks” I got the comment - “ I thought you would say that.” Now trying to change my consultant but still getting letters from same one saying she needs to have a decision before dealing with my request for an alternative consultant. After last bloods they want to increase my carbimazole but I explained I have just had surgery for a large ovarian cyst and it was only six weeks ago. A different doctor who telephoned me from tele clinic decided to wait five weeks and see if levels return to normal as they were raised. Losing patience and feeling cornered for radio therapy or surgery still. Would I be better off going back to my doctor as this was suggested at my appointment ? I really don’t know.

[Greekchick]

Hi Debussy,

This is such a hard choice. I held onto my thyroid for 25 years because I was borderline. I became fully hyperthyroid with Graves 2 years ago and was on methimazole for 2 - I was pressed for RAI 2 years ago - I held out because the drug was working and I felt better. However, I had a large multinodular goiter which doubled in size last year. I became resistant to the meds and the decision was taken out of my hands - it had to be surgery. I am 6 weeks post TT surgery. I had a successful surgery and the real journey begins now after surgery. It is not easy and finding the right balance of medication has been a real challenge for me and my endo. He is flexible and helpful. Also,I do feel better in many ways and so I am grateful for that, despite the difficulties I am facing.

I have likened this choice between RAI and surgery to the following: slow death or death by firing squad. There is no good solution for hyperthyroid or Graves patients. I did not want RAI - it’s a long haul and can take up to 3 years for the thyroid to be completely gone. In the meantime there is constant monitoring. It’s rough.

Had I been controlled on meds, I would have left well enough alone. That was not in the cards for me.

Maybe you should have a discussion about the choice between the two modalities with your doctor in addition to staying on meds. If you have normal liver function and your white blood count is OK (no infections etc) , it’s worth a discussion. If you are becoming resistant to the medication, then the choice is a different one. Neither is without risks.

I wish I had more to offer and I hope things work out for you. Sending you positive thoughts and good wishes.

[Greekchick]

To add to my previous comment- I am happy I had the surgery - did not want RAI