So confused by Endo appt for daughter

[invisiblyme]

My daughter has been diagnosed with POTS.  Her doctor is a Cardiologists which specializes in Dysautonomia and Mitral Valve Prolapse and has said most of his POTS patients have thyroid issues.  My daughter had classic signs starting with brittle hair and nails, skin problems, weight gain, problems staying asleep at night and tired all day.  Her thyroid was checked (TSH only)by her ped.  It was almost 4 which they felt was slightly elevated.  They wanted her to come back in 4 weeks and have it checked.  It had risen to 5.23 and then it was checked again after 6 weeks and it had risen again.  The endo doctors said it was normal and that they would not consider it a problem until it was 10 or over.  Her Cardio finally prescribed her synthryoid (25) when it went over 7.  He checked it about 8 weeks later and it was about 6 so he upped her dose to 50.  After being diagnosed with PSOS her ped finally pushed that a ped endo would see her.  I went today and was told that they felt her thyroid was fine and she shouldn't be on meds.  I asked why her TSH continued to rise and they blamed it on lab mess ups, that she maybe had a short problem with her thyroid that had corrected itself or differences in appropriate ranges.  They also said that children's ranges are different than adults and that children aren't considered high until it is over 10.  They also said that because her thyroid antibodies were normal that that showed that there was really no problems.  They want her to stop her thyroid meds but I along with my daughter are very unsure about this because she has shown great progress since she has been on the 50 and her TSH has even dropped under 3.  I have tried to get her free T3  and B12 checked (because low B12 runs in the family)but had no success.  They did check her vitamin D and it was very low so she does take vitamin D.  I am not sure where to go from here.  The endo ped is the only one I could find in this area and I believed because she was at UAB that she would be good.  Anyone know of any GREAT endo doctors in the Central/South AL area that sees teens?  HELP!!!!

[gimel]

Just sent PM with info.

[mandyree06]

I also Have POTS and Dysautonomia etc etc. IS it always at a level considered to be hypo? Have you heard much about Hashimotos?  It is an autoimmune disease that attacks the Thyroid. If she would be checked on a tuesday the Thyroid could appear to be fine.. Then say a week later on a tuesday she could be elevated. That is showing that antibodies are attacking her thyroid. Then lets say a month later the test could appear in normal rangers or so. Most Dr's only do the test once. But Hashimotos is more complexed than just a one time testing.