# Took 15 yr old Daughter to Children's Hospital due to high TSH from Ped



## Jokelly (Jan 18, 2015)

My 15 year old daughter has been exhibiting symptoms that warranted my husband to say she needed her Thyroid tested. He has hypothyroid that was diagnosed in his 40's. We went to the CMH here in KC and saw an endo dr. Her original test came back with a TSH of 4.7 - and they called that Slightly elevated as they had a different reference range than the Endo dr (which I don't have but it was 4.0 for the top end). - Her T4 Free was 1.0 with 0.9-1.4 ng/dl as the reference range.

We go to Endo and he basically thinks we are crazy. He order's new labs with the T4 antibodies. So he calls and says she tested positive for antibodies but that doesn't mean she is going to have a thyroid problem but higher probablility she will. Her T4 Free was 1.0 nanogram/dL and her TSH was 3.70 mcIU/mL with Reference Range of 0.35 mcIU/ml/mL-5.50 mcIU/mL. the first test was done Dec 22, the second was Jan 15.

When he called he said it was normal and that was it. Her symptoms are irritability, skin issues with face (she is a swimmer, but has been for a long time). short/light periods. She has a lot of hair that falls out - yet her hair seems fine. She has shakey hands - not all the time but a majority of the time to the point where friends at school have noticed. She is tired (but then again she is on high school swim team). She can't seem to gain any muscle from the two a day practices so she is fairly thin compared to the othe swimmers for where they are in the season.

The dr just thinks these symptoms are something else. I find it strange my husband would ask to have her thyroid tested when that wasn't on my radar. the shakey hands concerns me. I told the dr we would talk and call back but thinking I really need to go back to him and discuss. Any thoughts are appreciated.


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## Andros (Aug 26, 2009)

SUGGESTED TESTS
TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

Blocking TRAbs (also known as Thyrotropin Binding Inhibitory Immunoglobulins (TBII)) competitively block the activity of TSH on the receptor. This can cause hypothyroidism by reducing the thyrotropic effects of TSH. They are found in Hashimoto's thyroiditis and Graves' disease and may be cause of fluctuation of thyroid function in the latter. During treatment of Graves' disease they may also become the predominant antibody, which can cause hypothyroidism. 
Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm
(Copy and paste into your browser)

T3 Uptake test
http://www.drstandley.com/labvalues_thyroid.shtml (high, hyper---low, hypo)
(Copy and paste into your browser)

The T3 uptake explained.
http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm
(Copy and paste into your browser) 
Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3
(Copy and paste into your browser)

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm
(Copy and paste into your browser)

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Welcome to the board. What antibodies tested positive?

Your doctor should order an ultra-sound of the thyroid for your daughter and run more tests. If he won't; methinks you need a better doctor.

Listing some info above. Your daughter also needs the FREES, not the Totals.

I'll tell you; hubby should also read because he may not be optimal. And I hope he has had an ultra-sound of his thyroid?


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## Lovlkn (Dec 20, 2009)

> Her original test came back with a TSH of 4.7 - and they called that Slightly elevated as they had a different reference range than the Endo dr (which I don't have but it was 4.0 for the top end). - Her T4 Free was 1.0 with 0.9-1.4 ng/dl as the reference range. We go to Endo and he basically thinks we are crazy. He order's new labs with the T4 antibodies. So he calls and says she tested positive for antibodies but that doesn't mean she is going to have a thyroid problem but higher probablility she will. Her T4 Free was 1.0 nanogram/dL and her TSH was 3.70 mcIU/mL with Reference Range of 0.35 mcIU/ml/mL-5.50 mcIU/mL. the first test was done Dec 22, the second was Jan 15.





> When he called he said it was normal and that was it.


 Um - I'm going to have to disagree - despite my lack of medical training, I can tell you from my experience that your daughter is likely hypo based on her FT-4 testing. She is low range. The high TSH is also pointing toward hypo

Now - the queation you need to ask is why?

Andros said...



> Your doctor should order an ultra-sound of the thyroid for your daughter and run more tests. If he won't; methinks you need a better doctor.


I think you need to find a pediatric doctor who specializes in thyroid issues. DOes this doctor?


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## Jokelly (Jan 18, 2015)

She is seeing an endcrinologist at Children's Mercy hospital in Kansas City. So yes he specializes in kids. I just don't like how he thought we were crazy in bringing her in. I've got a feeling I'm not going to get very far with him when it comes to more testing. If you know what I mean. I appreciate all the posts. Helps so much.


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## Lovlkn (Dec 20, 2009)

Maybe try a peditrition? Sometimes it takes going to several doctors before finding one who is capable of treating a patient properly - sad but true.


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## Jokelly (Jan 18, 2015)

Okay just got further results from her positive Antibody test

Peroxidase was 1,818 with a range of 0-35

Thyroid Globulin was 154 - range 1-40

Haven't looked these up to see what they mean yet!


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## joplin1975 (Jul 21, 2011)

Jokelly said:


> Okay just got further results from her positive Antibody test
> 
> Peroxidase was 1,818 with a range of 0-35
> 
> ...


 :scared0015: Whoa.

If anyone tells you she doesn't have a problem, you should...well, if I were in your shoes, I'd smack 'em right across the face.

Get her an ultrasound IMMEDIATELY.

TPO usually is associated with autoimmune processes. It essentially means your thyroid is under attack. However, it doesn't define the nature of the attack. My TPO was in the 720s (I think) -- I had Hashi's, antibodies associated with Grave's and cancer.

And, speaking of that cancer, thyroglobulin is most often used as a tumor marker. People will have some Tg, but that high really raises a lot of red flags. They didn't run thyroglobulinAB, did they?


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## Jokelly (Jan 18, 2015)

Joplin, Thank you for the reply. No on the test - what they did the nurse gave me. I don't like the looks of them either and now call University of Kansas Endo dept to get an appointment!


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## Jokelly (Jan 18, 2015)

Okay so the original Dr from the children's hospital had the nurse call me. They had another dr look it over...he recommended instead of every year repeating the test maybe every 3 to 4 months. Hello! She has symptoms now - her antibodies are off the chart (of course that is just a marker for her to have issues down the road...I think were down the road). Then I brought up the shakey hands again....oh well he said we could run a full metabolic panel . Its been done. All was good. What would you like done they ask. How about an ultrasound of her thyroid. This is so very frustrating and in the meantime my kid is still suffering!


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## joplin1975 (Jul 21, 2011)

Um, yeah, not doing an ultrasound IMMEDIATELY is - in my opinion -- malpractice. Is there any other doctor from whom you could get a second opinion?


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## Jokelly (Jan 18, 2015)

I made an appt with KU but didn't get in until Feb 25. I called primary ped and they are going to try and get me in earlier. At this point, I want nothing to do with the children's hospital if they don't recognize what's under their nose! thank you.


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## joplin1975 (Jul 21, 2011)

Good for you!  I hope you get some answers soon.


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## Jokelly (Jan 18, 2015)

So we saw the dr at KU. She said we should retest in a few weeks and we did. Confirmed Hashimoto's. Well her thyroid came back 6.86 something and they put her on .25 of levothyroxine. So she has been on it a week and she is having funny sensations in her scale. Tingling...or it hurts. I look it up and says hyperthyroid can cause this. So I call KU. She says she's only been on it a week and usually takes 4 weeks for anything to change. She says maybe it is new hair growth - not what the internet says. Says HIGH THYROID. So I'm thinking this thyroid is going up because of the levothryroxine and not down. I'm having my husband call and make sure that is the medicine they want her on. Any thoughts?


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## Octavia (Aug 1, 2011)

If it's her TSH that's 6.86, then yes, she very likely needs to be on levothyroxine, especially given her Free T4 result in your original post. The dose they put her on is very small. It's likely that her body is simply adjusting to the drug, but she needs it. With the lab results you've posted, I can say with 100% certainty that a dose of 25 micrograms is not going to make your daughter hyperthyroid in just a few days (if ever).

The drug is supposed to bring her TSH down and bring her Free T4 up. She'll need to be re-tested in several weeks (6 weeks or so), and hopefully that is the result you'll see. People with antibodies (and she has a bunch!) seem to have a harder time adjusting to the meds, unfortunately.


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## Jokelly (Jan 18, 2015)

Thank you so much. She has a order for April 24th. Which seems to long to me


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## joplin1975 (Jul 21, 2011)

When you say "in her scale" are you talking about her skin? Sometimes adjusting to meds it tougher for some than other. As long as she's not sweating, feeling very jittery, and is sleeping, I would try to ride it out. She may feel hyper when changing meds initially but it should even out.


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## Jokelly (Jan 18, 2015)

scalp. Sorry. She has had very shaky hands from the beginning of all this. I appreciate all the posts. Helps so much.


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## joplin1975 (Jul 21, 2011)

It's very possible that she has TSI (another antibody). I really have to believe that cancer is a real possibility and many, many of us who have had cancer also had TSI. The deal is that as the cancer disables the thyroid, your body produces a stimulating antibody to try and tell the thyroid to make more hormone. TSI is a nasty, nasty thing...once you have it -- even if you are hypo -- you immediately feel hyper when they treat you with any thyroid meds.

I was on synthroid for a week before my surgery and it was the worst week ever. I only slept for a couple of hours, I was sweating like mad, I couldn't sit still. My husband says it was like living with a meth addict.


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## Jokelly (Jan 18, 2015)

Here are the results. I requested a copy from Doctor Thank you!


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## Jokelly (Jan 18, 2015)

I appreciate any feedback


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## joplin1975 (Jul 21, 2011)

Those results are from before she started the levo?


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## Jokelly (Jan 18, 2015)

joplin1975 said:


> Those results are from before she started the levo?


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## Jokelly (Jan 18, 2015)

Yes. Before she started


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## joplin1975 (Jul 21, 2011)

I still think her numbers warrant treatment....and I still think more than anything else, she needs an ultrasound.


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## Jokelly (Jan 18, 2015)

So day 31 of the levothyroxine and hands still shakey. They don't want us to test until April 24th any thoughts


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## joplin1975 (Jul 21, 2011)

Is shakey hands her only symptom? Not that I'm minimizing that...I'm just wondering if she has heart palpitations? Trouble sleeping? Feeling "wound up?"


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## Jokelly (Jan 18, 2015)

So My 15 year old has been on Levo and taken 32 days of
Pills. Her hands still shake? How long do u think before we can tell if it is helping. She is on .25 mg

She has trouble sleeping. Her hair falls out


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