My 13 y/o daughter was sent for Thyroid u/s and labs due to "enlarged thyroid" appreciated by her pediatrician on exam last week.
She does have many hypothyroid type symptoms and also a few hyperthyroid symptoms, however she also has JRA and mild anemia so we just chalk her symptoms up to that. One thing she does not have is any kind of weight issue. she quite thin actually. her TSH and freeT4 are both elevated (TSH 4.83 and fT4 1.75) Labs were repeated to check for error and still the same. Her ultrasound showed that she has a small nodule or cyst in the left thyroid lobe and her right lobe is mildly heterogeneous in appearance, however her thyroid was noted to be upper limits of normal for size so not actually enlarged. Her Dr also ordered the thyroid antibodies labs which were normal or negative. I'm told she does NOT have hashimotos or autoimmune thyroiditis.
We have had her TSH and T4 tested in the past, about every other year. Thyroid disease seems to run in our family, my brother (her uncle) and myself are both hypothyroid and have been on thyroid replacement since we were small children. Also my sister (her aunt) has been treated for thyroid cancer, several surgeries. first to remove malignant nodules and the second time to remove her entire thyroid gland and radiation treatment. so we check all my children's thyroid function at well checks every two years as a precaution. My daughter's labs have always been normal and very much in the middle of the normal values (last one was 2011 TSH 2.1 and FT4 1.03).
We have been referred to endocrine but its Friday and we wont hear anything until Monday at the earliest. Her pediatrician does not know what to make of the labs, she said she would normally suspect hashi or autoimmune thyroid disease with those TSH/FT4 levels but that was ruled out by her thyroid antibody studies.
Does anyone have experience or info on this? I have been trying to do a little research but it doesn't look like this is too common (the lab results) or maybe I'm just not searching the right terms??
Which antibody tests did your doctor order? Did he order TPOab (thyroid peroxidase antibodies), TGab (thyroglobulin antibodies) and TSI (thyroid stimulating immunoglobulin)? The first two are elevated with Hashi's (some of us are psitive for one, some the other and some both). TSI is considered the definitve test for Graves'. JRA is autoimmune, and once we have one autoimmune, we are more likely to develop another. I'd want to make sure ALL the antibody tests were covered.
Do you and the rest of your family have Hashi's?
What's the reference range on her FT4 and TSH? Ranges vary lab to lab and should also be adjusted for age as children run higher FT4s than adults.
TSH and FT4 appear to be a bit at odds (you're right, it's not too common). When one is high, the other should be low, and both look somewhat high. Of course, I'd have to see actual reference ranges to be sure of that. It just might be worth a call to the lab to make sure they did adjust reference range for age.
I am 21 and have also had labs done recently because I have two thyroid nodules one in my left thyroid lobe and one in my right. My doctor also mentioned that my thyroid was enlarged. I have an appointment for an ultrasound on Monday. I had both nodules biopsied about a year ago, but recently had a few symptoms that got me worried. No one else in my family has had thyroid issues. I was diagnosed with RA when I was 17/18 and also am a little anemic. I recently saw my rheumatologist and asked if RA and thyroid nodules/issues are somehow related and he told me no.
Your rheumy is wrong. RA and both Hashimoto's thyroiditis and Graves' disease are autoimmune. Once you have one autoimmune disease, you are much more likely than the general population to develop a second. You should be tested for thyroid antibodies. Furthermore, nodules are associated with both Hashi's and Graves'.
I am honestly not sure if they adjusted for age, however it is the same reference value she has had on her last labs that were run at the children's hospital. But I am not sure.
I got the other labs from the pedi office, the autoimmune tests were:
thyroglobulin ab <20 (0-40)
thyroid Perox ab 7 (0-26)
I don't now if my family has Hashis. I am neg for both of the above two antibodies although I do have a high pos ANA and some form of autoimmune disease we don't know what it is. I have had no interest in doing a bunch of testing- I am pretty healthy and in good physical condition for my age. its a little too confusing, I had a goiter at 2 years old, was tested and found to have hypothyroid, don't know if they had the antibody tests back then (47 years ago) but I have had both tests as an adult and they were neg. I would be willing to have any test needed at this point if it would help figure out what my daughter is dealing with.
My sister did not have hypothyroid as far as we knew. she never needed meds or had signs of hypothyroid until very suddenly prior to them finding the cancer. She was in her early 30s at the time. She is doing pretty well now (30 years later) but had a very tough go of it for about 5-6 years.
Is it possible to have hashis without a pos result on the antibody tests? are there any tests that we still need to confirm weather or not she has an autoimmune thyroid condition? what should our next step be? Thanks!
Well, if the tests were done at a children's hospital, one would assume the ranges were adjusted for age. However, if the tests were sent out to a lab, then that's a leap of faith I might not be able to make. The TSH range looks like a pretty standard adult range to me, and the FT4 range does, too, except that the upper end is LOWER than we usually see (it usually goes up to about 1.8 or even higher). Children typically run higher TSH and FT4 than adults.
Not too long ago, I was "talking" with a woman whose child had had tests. I suggested she call the lab to make sure the ranges were age-adjusted. She did, and kept after whoever she spoke to at the lab long enough that they got "the book" (oh, no, not the book!) out and "discovered" that, lo and behold, the ranges for children WERE different!
PCPs tend to look at the result and the range printed on the lab report. If result is in range, they don't usually do a lot more. However, you're being referred to an endo, who I would certainly hope would know better. The endo should also be looking at your daughter's FT3. FT3 is the test that correlates besst with symptoms.
The two antibody tests your daughter had were for Hashi's. There's some real inconsistency in her TSH and FT4. When TSH is high, FT4 should be low, but hers is considerably over range. Because FT4 is over range, I'd want to test for Graves', which is the TSI (thyroid stimulating immunoglobulin) test.
Typically, with Graves', TSH is very low, so the first thing I'd want the endo to explain is the TSH/FT4 inconsistency. I'd also want him to test FT3. Do you know how FT4 and FT3 work? I'll be happy to explain, but I don't want to tell you what you already know.
You started having thyroid problems at such a young age that it's going to be difficult to know if you have Hashi's or not. If you already had antibody tests as an adult, I don't think it's worth doing again. It's possible you once had antibodies (they can go into remission once the thyroid is effectively "dead"). Some peole also don't test positive for antibodies, but that's rare.
The most compelling bit of information to me is the change in your's daughter's TSH and FT4 (especially) in the last year.
Yes, I do. Thanks though.
I think that's why I'm so confused about the Ft4 and TSH numbers. I know they should be high/low or low/high ( or normal ;) and I know the only time you see them both elevated is in some hashis patients or with a pituitary tumor. Being that her antibodies were normal.... Im just a little on edge about what could be going on.
And I was wrong on that FT4 normal range. I'm typing on my cell and couldn't see the screen too well. It should have been a 1.6 not a 1.5
I agree with you about the change in her TSH FT4 in just a little over a year being a bit concerning.
The answer could be in her FT3. If it's low due to a conversion issue, that could be keeping her TSH high.
There are other things besides pituitary tumors that can cause high TSH. I have PRTH (pituitary resistance to thyroid hormone). My TSH hovers permanently around 20.0. My pituitary lacks an enzyme that converts T4 to T3, but only in the pituitary...peripheral conversion is fine.
Best of luck with your endo. Please let us know how it goes...
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