Isn't it great when you wake up in the morning and everything has jelled in your brain?!
I agree with you about the new doctor. You should have an endo, who is not only the one reading the tests, but who you can sit down with and discuss your concerns. Also, if once you see a new endo, he wants even more bloodwork, you can do it all at once and minimize those dreaded needles. I also tend to think that an endo closer to you, even if not a pedi endo, would be more in tune to this than your pedi is.
Has she had a thyroid ultrasound? Her endo might want to order one of those. It's completely painless. They just squirt some goo (gel as a lubricant) on your neck and run a want over your thyroid to get a good picture of it, check for nodules, etc.
That's all I can think of at the moment, but I'll keep thinking and get back to you if i come up with anything else. Good luck.
THANK YOU AGAIN!! You have been extremely helpful!!
I slept on it and have a plan :-)
I'm NOT going to proceed at this time with the THR test. She hates needles and blood draws, and I just don't want to put her through that considering I don't think that's what is going on. If later we come back down that road then we run the test, but first:
I'm going to switch Dr. I think this is were the problem is. Having our pediatrician run test and then consult with the peds endo 7 hours away is causing problems. Example they ran the TSI antibody test and the peds endo Dr. didn't look at the actual test results and just got the "negative" answer from our local Dr..... She needs the SAME Dr. running the tests to be the one reading the results, and the Dr needs to know what they are looking for and what they mean. Our pediatrician doesn't know enough about Thyroid to know that those TSI antibodies were pretty high.
Then we need to get a fresh set of blood work with ALL the antibodies, and binding protiens included and Ts. The FT4 and hopfully FT3 - HAVE HAVE HAVE to be run via direct dialysis.
That 2011 lab she was technically Subclinical-Hypo and her FT4 was not even borderline low it was LOW. So I need to find out if this is the "actual" picture, slightly elevated TSH, elevated FT3 and low FT4 - If that FT3 is truly elevated this could be what is causing the hyper symptoms.
Anything else you think I should include in my plan.
:-)
Well, tell me when I should quit!
Yes, the T4 does bind to the TBG (thyroxine binding globulin, not thyroglobulin (TG), that's something else entirely). That's how T4 is stored and gets around your bloodstream; it kind of hitches a ride on the TBG (protein). FT4 is the tiny bit (compared to total) of T4 that's not attached to protein and can be used by the body, since it's free (unbound). So, when there's too much TBG, your total T4 can be high, but your FT4 still low because too much of the TT4 is bound to TBG.
Hyper symptoms are caused by high FT3 and/or FT4 levels. That's the ONLY thing that causes hyper symptoms. FT3 is the test that correlates best with symptoms. T3 is the "active" form of the thyroid hormones. It's the only form your cells can use. So, if for some reason your FT3 is high and your FT4 low, you can still feel very hyper. (Unfortunately, we don't have FT3 in that first set of tests, so don't know what it was doing. T3, like T4, can be bound or free, so we can't assume anything from the TT3.)
Crash course in Thyroid 101, just in case: The pituitary is the master endocrine gland and controls all the others, including thyroid. When the pit senses low levels of FT3 and/or FT4, it puts out more TSH to stimulate the thyroid to produce hormone. The thyroid responds by putting out more T4 and T3, and the whole cycle starts over again.
TSI are thyroid stimulating immunoglobulins. They are antibodies created by the immune system, and they attach to TSH receptors in the thyroid and act like TSH. However, once this happens (Graves' disease), the thyroid is no longer under the control of the pit, but under the control of the antibodies. The antibodies are pretty indiscriminate and don't give a hoot if FT3 and FT4 levels are too high; they just keep telling the thyroid to produce more and more, and you have hyper symptoms. But, it's not the antibodies themselves that produce those symptoms, it's the high FT3 and FT4 levels that they cause that produce the symptoms.
When TSI is high, TSH is usually very low (unless something else is going on at the same time) because so much FT3 and FT4 is in the bloodstream that it's suppressed. TSI is doing its job, though a little too aggressively.
Sleep on it...
Thanks for the research!!! So nice of you!
No she wasn't on any medications when the labs were done. And no she wasn't having Hypo symptoms. Her symptoms have ALWAYS been more hyper, main symptom that started the testing was the excessive sweating (hands and feet). And the thicker hair on arms and legs.
Could the T4 be binding to the thyroglobulin? I'm not really sure what the thyroglobulin does.
Could the FT3 and TT4 being on the high side be what is causing the hyper symptoms? And does the TSI play into this at all?
Head spinning from thyroid information overload LOL :-)