Hi, I’m new to this forum and am posting on behalf of My daughter who is 20 years old and has Graves Disease, she also has Down’s syndrome.
This is the 2nd time in 4 years that her thyroid has gone overactive . The first time she was on carbimazole for around 18months and then was off meds for approx 18 months before it suddenly returned. She has now been on carbimazole for 12 months gradually reducing from30mg to 10mg when she went hyper again in June 18, Carbimazole was increase to 20mg for around 8 weeks and after recent blood tests is now back down to 10mg. Her Endo has advised that RAI would be the best option for her due to the recent problems with her going hyper whilst on meds after a spell when things were stable. He said that it isn’t good for her to be on carbimazole long term. A thyroidectomy is also an option but he said there is more risk due to it being invasive. My daughter is scared of both options and doesn’t really understand why she needs this.
I am so anxious about making the right decision for her as she can’t always explain exactly how she is feeling and I don’t want her to end up feeling worse or creating problems for the rest of her life
She has piled on a lot of weight, is always tired and grumpy since she started on carbimazole 4 years ago, she also has Coeliacs disease.