Anyone else with Type 1 and Grave's disease?

Last thanksgiving my son was diagnosed with Type One - this year he was diagnosed with Grave's.  RIght now it is even more scary than the diabetes diagnosis and it would be so great to hear from some one else that has been through this!


I'm sorry to hear about your son, especially with 2 diagnosis within a year of each other can seem like a lot. I have graves for a little over a year now, and I have bee type 1 for 10 years. I didn't think Graves was any more scary than diabetes, but it may be for you. It wasn't entirely unexpected as my mother had it as well. The treatment can seem a little scary depending on which you choose. I chose to take the Tapazole route for 18 months, and as of now my TSH levels are in range. My doc really advocated for me to take radiation and completely kill off the thyroid, but I wanted to try the other option first since it worked for my mother. So far so good. :-)

Sorry to hear about your son, but think of it this way.  Graves is hard to diagnose and the symptoms can be a bit vague, vary a lot in different people and mask themselves as other conditions.  Another way to think about this is that the treatment for Graves is well established, the diagnosis is the harder part, so consider your son well on the way to a great outcome since you have already passed the hard part.

I was just diagnosed with Graves about a month ago (after a Type 1 onset in May, 2009) and was actually glad to get the diagnosis!  I had been feeling awful, especially when walking or climbing stairs for a long time.  I was getting dizzy, unbalanced, and generally feeling weird when I moved around at all.  But, the symptoms were not at all what the classic hyper-thyroid problems would be (such as sweating excessively and tremors/palpitations) and the four doctors (gp, endo, and two neurologists) I went to were looking elsewhere for the answer. 

Finally went to a neurologist who agreed to do a battery of tests up and down including an MRI, nerve tests, blood and urine.  Everything came back fine, but he mentioned, almost in passing, that the thyroid result was a bit off.  My T3 and T4 levels were actually in the high range of normal, but the TSH came back almost non-existent, 0.01.  The TSH is a better indicator of a thyroid problem, as the T3 and T4's vary widely in people, and what would be normal for one person may be very high for someone else.  The high normal that I was experiencing was obviously way too high for me.

I received a small dose of I-131 radioactive iodine in pill form three weeks ago and just this week started, for the first time in nearly two years, to feel like my old self again.  The radiation slows the thyroid gland down, and the goal is usually to kill the thyroid gland altogether.  Once it's killed, the level of hormone in your body is stabilized at zero and then the hormone can be replaced by a pill.  Actually, the thyroid condition is far easier to manage than Type 1, since the thyroid hormone is very stable in the body and you just need one pill a day.  I understand that it can be tricky in the beginning to establish the proper dosage of thyroid hormone, usually synthroid, but once it's figured out, you are good to go with daily medication.

Graves is another auto immune condition, and they do tend to travel in pairs.  Haven't heard of too many triplets, but I guess anything is possible.  In any event, try not to get too freaked by the Graves diagnosis.  Once it's adequately addressed, it should be no big deal.