I had posted previous about my 11 year old daughter and strange lab results. As I learn more about Thyroid Tests the more frustrated I'm getting with her Dr's. In my last post it was suggested that I have her TSI and TPO also tested. The nurse called me back yesterday and informed me that they DID run these tests back in June 2011:
TSI: 83 (<123)
TPO: .4 (0 - 9.0)
From my research I'm gathering that ANY TSI present suggests Hyper. Right now, they want to test her for Thyroid Hormone Resistance Due to the elevated FT4 and non-surpressed TSH - If this comes back negative they will just call her thyroid function "normal", and suggesting that we stop testing her thyroid. But now that I learn that she DOES have TSI present - I'm not sure that the test for THR is needed.
So do I proceed with the test for THR, or is this the time to find a new Dr. for her and start over? Is it possible that the TSI present is blocking something that is preventing the TSH from being surpressed?
The following labs were run in different locations. 2011 - at university location, these labs differ quite a bit from the labs ran at our local clinic. The labs run in our local clinic have always been simular to the latest one from Nov 2012:
Labs from ped endo aug 2011:
TSH: 3.53 ( .4 - 5.0 ),
FT4: 0.51 (1.1 -2.0) - Measured via Equilibrium Dialysis
Total T3: 166 (83 - 213),
Total T4: 15 (5.0 - 11.0),
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)
Sorry for the lab re-post just wanted all the information together.
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.
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"?
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.
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.
"FT4 is usually measured by automated analog immunoassays. In most instances, this will result in accurate results. However, abnormal types or quantities of binding proteins found in some patients and most often related to other illnesses or drug treatments, may interfere in the accurate measurement of FT4 by analog immunoassays. These problems can be overcome by measuring FT4 by equilibrium dialysis, free from interfering proteins."
I also find it interesting that her TT4 was so high above range and her FT4 was below. That would beg the question of why her TBG (thyroid binding globulin) or other protein was high. Was she on meds or undergoing any medical treatment when either test was done?
This article cites pregnancy and oral contraceptives as culprits, but I’m sure there are others:
“Measuring FT4 directly requires complicated laboratory procedures, so FT4 is usually estimated based on the ratio of binding protein to total T4. Normal FT4 levels, when the total T4 is high or low, indicate the issue is the binding protein, not the thyroid. For example, pregnancy or the use of oral contraceptives increases levels of binding protein in the blood. In this case, the total T4 will be high due to the binding protein but the person does not have hyperthyroidism. Severe illness or the use of corticosteroids—a class of medications that treat asthma, arthritis, and skin conditions, among other health problems—can decrease binding protein levels. The total T4 measurement will be low as a consequence, but the person does not have hypothyroidism. In either case—having high binding protein or having low binding protein—the FT4 will be normal and the person has normal thyroid function—also called euthyroid.”
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 :-)
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.
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.
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.
Nope no ultrasound has been done, agree this would make sense to have done, could give some more insight on the TSI being present.
Called this morning to inquire about appointment with a new Endo. She is booked out and entire YEAR. They told me to have my current Dr. talk to the new Dr about the referral and they MIGHT be able to see her sooner.
Current Dr is out of office till Monday, so can't do much more till I can talk with her :-)
Hey there just wanted to give you an update/non update.
I'm NOT having any luck finding a Dr. to get a second opinion. With her being 11 the adult endos in town will NOT see her. Our local pediatrian is working on just now getting a copy of the Aug 2011 labs results from the current Peds Endo.
I just got copies of the labs from Nov this year and those ones way back in June 2011 - the last time the antibodies were run. Interesting her TSH then was 5.59 (.34 - 5.6) of course this didn't get flagged because it was in the "normal" range, and that negative TgAB had a value of 20 (<=20)
So she absolutely needs the antibodies run again considering ALL 3 are present, just not high enough to flag the positives. I'm almost thinking that this is early Hashi's now instead of early Graves. I'm also going to push for the ultrasound and try to get a MRI of the pituritary - the change in vision over the last 2 years has me concerned. Now I just need to find a Dr. that will see her!!!
Anyway that's where we are now. In the hunt for a Dr. - Any advice on how to go about finding one.
Oh, I'm so sorry to hear they're tying your hands...
If I remember correctly, her TPOab was very slight and in range? Was her TGab test result "20" or "<20". Sometimes results are reported that way. TGab can also be somewhat elevated with Graves' (and other autoimmune diseases).
Your pedi ought to be able to order retests of all the antibodies. I totally agree with you that all three ought to be run again. 2011 is ancient history when it comes to antibodies.
Wow, I can't even imagine hunting for a pedi endo. A decent endo is hard enough to find. I'm not surprised you're having a tough time of it. I can't imagine there are too many pedi endos out there. Sorry, I wouldn't know where to start myself.
Someone asked this same question on Elaine Moore's website. Elaine Moore is a medical writer and clinical laboratory scientist, MT, CLS, with more than 30 years of experience in immunology. A good person to ask on immune issues! This is from her website:
TSI Test Results
I have been having a lot of hyperthyroid problems lately and just got some TSI test results back that I'm a little confused about. I have a result of 74 with a reference range of 0-139. What should I make of this? It seems like there are antibodies present...but not at levels that are problematic? What do I do from here?
Thank you for your help!
Studies show that most people with TSI develop symptoms when their TSI level is right above the cutoff or higher. But this varies because there are subtypes of TSI, some with greater affinity for the more active receptors. The presence of blocking TSH receptor antibodies also matters since these antibodies block TSI from reacting with the TSH receptor.
Your result can suggest many things depending on where you are in terms of diagnosis and treatment. If you're a new patient, it can suggest that your hyperthyroidism is related to early Graves' disease (in which case you can have more TSI in your thyroid gland than your bloodstream). If you're suspecting remission, you could interpret your result as a declining TSI and the possibility of remission depending on your thyroid function tests.
The TSI result has to be looked at with clinical symptoms and with thyroid function tests. Where it's often interpreted incorrectly is when patients with hyperthyroidism are told their result is normal just because it's below the cutoff. In the normal population, TSI would be <2% activity or thereabouts. In people with a family history of Graves' disease, TSI levels are often higher. If your thyroid function tests are normal, you'd at most be said to have thyroid autoimmunity but not thyroid disease. Best, Elaine
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.
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.
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!!
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:
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.
I think I'm going to have them (local Dr.) Set up the referral appointment with this new Dr. After that is done (easier to get a response when you can say "I have an appointment"), I'm going to call this Dr. and see if we can't run the blood work first. Then I can ask him about running the FT4 via dialysis - considering now that I know this has NOT ever been done and it's the second thing that should have been done when her lab work showed elevated FT4 and non-suppressed TSH (the first is rule out lab error) I can also ask him about the ultrasound and thyroid and heterophile antibodies theory.
If they are going to refuse to see her based on labs after I already have an appointment than I don't think this the right Dr. and would rather know that now vs. driving all the way there for him to feel her neck and check her reflexes like the last peds endo appointment.
Just kills me that 2 years ago they tested her thyroid function because she has symptoms that could be caused by the thyroid. Thyroid tests come back abnormal, but now lets just call her normal and say this is just the way she is......... hummmmm.... scratching my head a bit!!
Good point...if this doctor refuses to see her based on labs, you're right, you don't want to see him.
I just worry because you said, "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." Since the partner wasn't the doctor you'd picked out, I still wonder if the doctor you'd chosen would have seen her. Wow! It's hard to control all these variables.
It sounds like you have a plan...I hope it goes better this time. Best of luck, and do let me know how it goes...
I'm still waiting for the appointment to the new Peds Endo to be set. But found out something interesting today.
I had my other daughter (age 10) in to re-check that albumin level and asked them to also check the thyroid, because of some behavior issues and her sister's labs. Get this:
TSH: 2.48 (.34 - 5.6)
FT4: 2.3 (.58 - 1.64) H
Albumin: 3.8 (3.9 - 5.0) L - was 3.5 last time we checked so this is better.
Looks to be that SAME pattern! This was an initial screening so He just ran the TSH and FT4.
Our family Dr. who ran these tests wanted to refer her on to the pediatrician he sent daughter 1 to. I said to hold up as that road has gotten me no where. I'm going to wait till the appointment is made with the new Peds Endo and then call his office to see if he will see BOTH girls, and bypass the whole pediatrician.
Wow, that's kind of interesting, isn't it? Now I'm really curious as to whether she also has the TSI antibodies. Something's obviously going on. Of course, it could mean that for whatever reason (probably genetic), this is "normal" for both of them as well as they both have "abnormal" labs.
I think it's a great idea to have the doctor see them both at once. After all, one daughter's labs are relevant to the other in genetic terms.
Wanted to post an update incase others are trying to find answers of this same type.
The latest Dr. had genetic testing done on all of our family members. My children all have a mutated albumin gene that is causing the thyroid test abnormalities. This condition is called: Familial dysalbuminemic hyperthyroxinemia (FDH).
The symptoms are more than likely related to something other than the thyroid. Possibly celiac.
This condition could have been found A LOT sooner (2 years ago) had the FT4 been run via equilibrium dialysis, after they ruled out lab error.
THANK YOU everyone for the posts and thoughts on these unusual lab results. Just relieved to FINALLY have the answers!!
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