We have been to Mayo Clinic in Rochester twice and had very thorough evaluations from multiple specialists there. We followed up with our local physicians as they recommended. Hers has been an extraordinarily challenging case, and obviously the chances of elucidating the cause of all her health issues could not possibly be accomplished with just two visits. Cost, inconvenience and her inability to comfortably travel prevented us from returning to Mayo Clinic. Her doctors there were always willing to help. Getting local doctors to work with them proved to be a major challenge.

We live over a thousand miles away. We had to continue with evaluations at home. Mayo Clinic provided very detailed recommendations on how to pursue management of her symptoms when we returned home. That was three years ago.

She is experiencing a dramatic resolution of her issues with muscle fatigue after taking Synthroid properly and at an appropriate dose. Her TSH continues to be high, but we now are receiving very effective treatment from a board certified endocrinologist here. We are like a lot of families who visit Mayo Clinic to hopefully get pointed in the right direction and continue care at home.

Your post echoes one of the greatest difficulties patients like my daughter face. It is assumed that if doctors can't figure something out with a few visits, the best course of action is to accept that and do the best you can with what you have. That has never been acceptable to my daughter. She has always felt that if she persevered, someone would put at least some of the pieces together so that she could enjoy a better quality of life.

We have see some of the very best physicians in this country. Some of those are at Mayo. A majority of them agree this has been a confounding case. As her mom, if I had simply done what her first doctor advised, I know that we would simply be watching my daughter slowly deteriorate. LIke so many parents of children with undiagnosed conditions, I had to take on the role as her primary advocate because doctors do not have the time to document symptoms, medications, test results and research the possible causes of a plethora of health issues. I have always appreciated the ones who will openly acknowledge their limitations.

No, I am not interested in "one upping" any doctors. All I have ever wanted is for someone to figure out at least some of the answers that could provide her a better quality of life. She enrolled in college today, something that just a few months ago would have seemed an impossibility. Her endocrinologist used the information we have collected over the last ten years to determine what has turned out to be a very effective and promising treatment.

you have obviously never been faced with a situation where you or a loved one has been to countless doctors and been given no answers and at times looked at like you were crazy...you should not be so short to judge. thankfully for this child, her mother was her advocate and kept searching.