How frustrating!
So, you really have no choice now but to drive 6 hours??? If you talk to this doctor on the phone and make him aware of the distance you're coming, he might be able to order labs prior to your appointment so that they're all available for the appointment...one six-hour trip rather than two.
On the other hand, if the risk is that the doctor will only (once again) review your daughter's lab history and refuse to see her (as just happened), it might be better to go to the appointment "cold" and spring everything on him while you're there to dispute any objections he might have.
Your daughter's lab history clearly shows that her high T3 and T4 levels are clearly not a "blip" on the screen...they've been consistently high over almost two years.
So, what are your thoughts?
Thought I would give you a quick update.
Local Dr. called to talk to the new Dr. I found, got a partner in the office, who told her that she didn't see any need for further evaluation into my daughter's labs. Said that with her age the upper normal range on the FT4 can be higher. So she felt that my daughter was "normal".
Local Dr. could NOT get a copy of the labs from the Ped Endo (Aug 2011) So had me request them. Turns out they did NOT run the FT4 equilibrium dialysis, as they told me they were going to.
So we had an appointment with our local Dr. yesterday to give her the copy of the lab report. She told me that the "Specialists" that have looked at my daughter's case don't feel that there is anything to worry about, but since I still have questions she would be glad to refer us to this new Dr. I wanted (6 hours away) I explained that I might be comfortable with the "normal" diagnosis, if she would just do an ultrasound and run the Thyroid Panel + antibodies test again. She will NOT do this. Said she doesn't know anything about the antibodies and is not a Thyroid Dr. So she wouldn't know how to order or interrupt the labs, that's what the "specialist" is for. So it looks like in order to get the labs run again we are going to have to make an appointment with this new Dr. 6 hours away. AUGHHHH! there has go to be a better way!
FYI I do have a better lab history now; the copy of the results from the Aug 2011 also had a July 2011 with them So this is what I have now June, July and Aug were all run at different labs:
June 2011:
TSH: 5.59 (.34 - 5.6)
FT4: 2.17 (.58 - 1.64) H
TSI: 83 ( < 123)
TPO AB: .4 (0 - 9)
TgAb: <20 ( < 20)
July 2011:
TSH: 2.7 (.3 - 5.0)
TT4: 15.4 ( 5 - 12.5) H
FT4: 1.7 (.8 - 1.8)
T3: 172 ( 88 -190)
FT3: 4.4 (2 - 3.5) H
Aug 2011:
TSH: 3.53 (.4 - 5.0)
TT4: 15 (5 - 11) H
FT4: .51 (.70 - 1.85) L * I was told this was going to be done by direct dialysis but turns out it was - Competitive immunoassay.
TT3: 160 (83 - 213)
Nov 2012:
TSH: 2.03 (.34 - 5.60)
FT4: 1.89 (.58 - 1.64) H
FT3: 4.02 (2.5 - 3.90) H
TBG: 21 ( 13 - 30)
My assumption now as to what might be going on: I think this is early graves and she might have hetorphile antibodies interfering with the TSH assay.
I wish you all the luck in the world. It sounds like he CARES, and that's invaluable. Let me know how it goes...
Small Update :-)
I faxed her medical records to a new Dr. I have my fingers crossed that this is FINALLY the right Dr. In talking with his office, he seems to be VERY good. Will NOT accept dictation as the medical records. He wants to see and review the actual labs himself ect...
He would like us to run a T3 uptake test locally then fax him the lab results so he can determine if we need to drive all the way to see him (6.5 hours). He is the first Dr. to even mention that her TSH is slightly elevated as well.
Our local Dr. is going to contact him directly to discuss my Daughter's case and see exactly what his thoughts are, and how he wants the T3 uptake test ran. We will test the antibodies again as well :-)
Cross your fingers I have some hope I might start to actually get some answers!!!!!! I can't THANK YOU guys enough for the information that you have provided me!!
They often do that with antibody tests. If it's under range they just report it as such...you don't get an exact count. Keep in mind that we often see antibody counts in the high hundreds, or even thousands, on diagnosis of Hashi's. So, with an elevated TSI, Graves' is still my best guess.
I understand that your pedi isn't a thyroid whiz kid, but if she ordered new tests at least YOU would know what you're chasing and know how aggressively to pursue finding another pedi endo. Also, it's coming up on 2 years since the TSI of 83 in 6/11, and that could have changed significantly since then. TPOab and TGab could have as well. If you're really, really "lucky", TSI might have actually moved above range, which would make them sit up and take notice.
I do wish you the very best of luck. Let me know how it goes.
Ahh your correct her TgAb was <20 - so I might have interupted that wrong.
Her TPO was .4 (0-9) So just slight there.
And yes our local Ped would probably run the tests again, but I'll have the same problem - she doesn't know enough about the thyroid to catch and interupt the results (example TSH 5.59 is normal HA). And we will keep running in the same circle :-(
I'm going to continue to make calls, and see if begging and pleading for SOMEONE to see her will work, so far not working. My next call is to a Dr. about 6 hours away. Before we travel that far again I want to make sure the Dr. is THYROID and NOT diabetes, and how he would work with our local Dr.
Wish me Luck!!!