Pituitary Resistance to Thyroid Hormone
My 5 year old daughter was preliminarily diagnosed with Pituitary Resistance to Thyroid Hormone. She has a follow-up MRI of her pituitary gland scheduled for October to rule-out a TSH-secreting pituitary adenoma. She had an MRI done in April that showed a 5 mm micro-adenoma which the doctors are assuming is an incidental-oma since it is small and her alpha-subunit test came back normal. Her thyroid levels were first found to be off in December 2009 and have been that way on 5 separate occasions since. They even used a different method to test her T-4 that they felt was more accurate. Her latest bloodwork showed the following levels:
TSH: 1.44 (.32 - 5) NORMAL
Free T4: 2.31 (.8 - 1.8) HIGH
Free T3: 5.8 (2 - 3.5) HIGH
I am looking for other people who have experience with this illness. Since she is only 5 years old, she has a hard time telling me how she feels and how the medicine is helping her. Her symptoms that made us first see the doctor were high temperature, rapid heart rate, frequent diarrhea, hyperactivity followed by lethargy, extreme hunger, inability to gain weight, and inability to concentrate. Some of these symptoms have improved with the medication they have prescribed: a beta-blocker called Atenolol.
Again, I'm hoping to hear other people's stories about this illness. I'd like to know about symptoms experienced and how to "live with it" since the atenolol that she is taking doesn't fix everything. The doctor also doesn't really want to keep her on the atenolol for longer than 1-2 years. Does anyone have experience of the symptoms getting better with age? Thanks again for all your help! It will be great to meet some other people with some experience.