Does 11 year old have see a pediatric endocrinologist?

[packers52]

Hi we do not have a pediatric endocrinologist in the area we live.  My 11 year old daughter has had some abnormal thyroid lab results.  She has symptoms of being hyperthyroid; labs come back as elevated FT4 and FT3 but her TSH comes back in the normal range.  We have made 2 trips 7 hours away to see a pediatric endocrinologist.  These appointments for the most part have been a complete waste of time.  The second trip all they really did was felt her neck and tested her reflexes.  They sent us home with information on testing for Thyroid Hormone Resistance, but informed us that this is very rare and they have never had a someone with this in their clinic.  If she does have this they would need to consult with a Dr. out of Chicago, but they feel no treatment would be advised.  If she tests negative they recommend we quit testing the Thyroid and that her body just naturally has an elevated T4 range.

I'm wondering if we should seek a second opinion with a regular endocrinologist in the area, or does she have to see a "Pediatric" Endo?

Any advice is welcomed and THANK YOU!

[Mark Lupo, M.D.]

Elevated T4 and T3 with a normal TSH could be a few different things.  Would recheck using a different lab and check Total as well as Free levels.  If it is a true abnormality, then Thyroid Hormone Resistance (THR) is one possibility and a pituitary problem would be the other.  If her growth/activities/schoolwork are all appropriate/good then not likely a pituitary induced hyperthyroidism.  THR can be confirmed with specialized testing.  These are all so rare, that the chance of a pediatric or regular endo seeing this is quite low -- so outside of a university setting specializing in thyroid, it probably doesn't matter which she sees.

[packers52]

I maybe should have included the test results that I do have.  

From the first trip to the Ped Endo Aug 2011 (I don't have the ranges):
TSH: 3.53 (normal),
Free T4 0.51 (Low I believe this was tested via dialysis)
Total T3: 166 (normal),
Total T4: 15 (modestly elevated),
thyroglobulin antibody was negative
thyroglobulin normal 22.8

Test results from our local Clinic Nov 2012:
Elevated FT4 1.89 (.58 - 1.64 ng/dl)
Normal FT3 4.02 (2.50 - 3.90 pg/mL)
Normal TSH 2.03; (.34 - 5.60 mIu/mL)
Thyroid binding globulin was normal at 21 (13-30)

Her symptoms: Sweaty hands and feet, thicker arm hair, Irritable, sensitive (cries about EVERYTHING), Anxiety, very low pain tolerance, Changes in vision "Lazy Eye" - This eye is also slightly larger than the other, IBS, Frequent Bowel movements (3x/day), headaches.