You're right about the TSI test. It has a huge gray area. The top of the range for TSI (123 in your daughter's case) is where people usually start having symptoms. However, as you said, people who don't have Graves' have TSI of less than 2. So, there's a lot or real estate between 2 and 123.
TSI can change rapidly, and the antibodies can soar or can go into remission. If her TSI was questionable in 2011 (ancient history), it really ought to be repeated now.
I doubt "...the TSI present is blocking something that is preventing the TSH from being surpressed". However, she may have more than one issue happening. I have both Hashi's and pituitary resistance to thyroid hormone (PRTH), and it took my doctors a looong time to realize that my pituitary had a little issue of its own. The PRTH keeps my TSH permanently around 20.0, no matter what my FT3 and FT4 levels are.
Considering her 11/2012 labs, no, I wouldn't stop testing the thyroid. Her FT4 is high, and her "normal" FT3 is actually above range as well. I
What about symptoms? Hypo? Hyper?
I think the very first thing I'd do is update that TSI.
Thanks for the response.
Her symptoms are "Hyper":
She is an 11 year female does well in school not ADHD she is in the 18% - 19% for height and weight, symptoms: Excessive sweating on the hands and feet, thicker arm hair, Irritable, sensitive (cries about EVERYTHING), Anxiety, very low pain tolerance, recent changes in vision one "Lazy Eye" - This eye is also slightly larger than the other, IBS, Frequent Bowel movements (3x/day), headaches, and shortness of breath. Thyroid does NOT appear to be enlarged.
For the record, there are two types of thyroid hormone resistance, the terms are similar.
In T3 resistance, or better termed "reverse T3" (RT3). For simlicity, T3 can mirror or reverse its shape so it wont fit into the cell receptors. Adding even more t3 forces the backup of T3 into the cells. Like taking a plunger to a plugged toilet. It gets confusing when its called thyroid hormone resistance instead of RT3.
Thyroid hormone resistance (with out specificaly stating T3) is not the same as reverse t3, and is vary rarely talked about. Most Drs have never heard of it. Its really hard to find anyone that knows anything about this.
I think you need clarification on what they mean by Thyroid Hormone Resistance.
So if you are offered a reverse T3 test, get it. If its realy a Thyroid Hormone Resistance test, thats pretty much unheard of, why not do it? More tools the better in this case.
The last tests does look more like graves developing.
Pardon me for repeating, but an updated TSI is an absolute must.
I think the only reason her doctor wants to test her for THR is her "normal" TSH, but people who have THR (peripheral or general) tend to have hypO symptomns despite high FT3, high FT4 and high (non-suppressed) TSH. Free levels have to be extremely high (sometimes several TIMES the upper limit of the ranges) before they stop feeling hypO. Perhaps there's some pituitary resistance involved?
Also, I do want to clarify one point. You said, "From my research I'm gathering that ANY TSI present suggests Hyper." Any TSI doesn't suggest hyper. It suggests that antibodies are present at higher levels than they are in the normal population, and that the person could be or become hyper, and that the person is probably developing Graves' disease, but the TSI level itself does not mean the person is hyper. Most people with TSI over 123 will have hyper symptoms, some will have them sooner, some later, some will go into remission.
Everything in your daughter's labs, except TSH, suggests Graves' to me. I'd rule that out before doing anything else.
They want to test for the actual Thyroid Hormone Resistance not the RT3. They are looking for a gene mutation. The Dr. says it's extremely rare and most children with THR are ADHA, so he is expecting her results to come back negative. He went on to say that even if she were to test positve for RTH he believes that they would NOT treat her, but he would consult with a Dr. out of Chicago to confirm. Her Dr. nor the University that he's at have ever had a patient with this. That's were my questioning comes in if we are going down the wrong road and it might be time to start over with a new Dr?
Goolara: Is this the same as what you have "pituitary resistance to thyroid hormone"?
Thanks for clearing the TSI research up :-)
Your right her symptoms don't fit with the THR, it's just that non-suppressed TSH that has them scratching their heads - thinking that could be it.
Does measuring via equilibrium dialysis change anything? Could this be the difference between our local lab and the university lab results?
Moose and i were typing at the same time. I agree that RT3 dominance is often called THR, and it is a different condition. It gets even more complicated because THR comes in three varieties (according to most authors, some say two): peripheral resistance (only in the body, not in the pituitary), general resistance (both) and pituitary resistance (only in the pituitary). All three are a genetic mutation. I have pituitary resistance to thyroid hormone, NOT the same thing as RT3 dominance.
Your daughter could have pituitary resistance, which would keep her TSH higher than it should be and could cause FT3 and FT4 to rise, with hyper symptoms. However, with general resistance or peripheral resistance, she should have hypo symptoms with high levels of FT3 and FT4.
Do you know with one THR test (through quest diagnostics), If she has THR would they be able to tell if it's Pituitary - General - or Peripheral resistance?
I have this test scheduled for tomorrow, so I'm thinking that I will proceed with it. I will also call her Dr. to see if we can't add the antibodies test again also.
I don't think I'm keeping up...I'm about two posts behind!
From what I'm reading (never saw "equilibrium" dialysis on a lab report before), I think it's the same as what we usually see as just "direct dialysis" because it's also called "direct equilibrium dialysis". The other method of measuring FT4 is analog immunoassay, which apparently can return invalid results if a certain protein is present and causing T4 to bind chemically to it. You may be onto something there, because her FT4 was low, but her total T4 was high, indicating that there is some protein binding going on.
I wonder if the 2012 lab uses immunoassay...might be worth asking them.
I really don't know if the genetic tests discriminates between the different kinds. No reason not to go ahead with it. Maybe they could throw in TSI at the same time.
Yep I'm pretty sure the 2012 lab from our local clinic would have used the immunoassay - I don't believe they have the ability to measure direct dialysis.
Well, you know what happens when we assume! LOL
I'd verify...it could be important.