DownSyn Forum

Diana64 · Posted: January 26 2010, 7:35 AM Post subject: TSH (thyroid) of my son

Hi dear parents,

I'm from Germany and our son is 8 year old. I just thougt it would be good to hear your opinion in this certain topic. Recently the blood control showed that our boy has increased THS level ( 5,7), which is too high ( it has to be under 4). His Endo said, such levels are quite common by children with DS and he needs no meds. I'm not satisfied with his answer, because I know that he is giving hormons to the "normal" kids with the same TSH level and our son has already few symptoms of hypothyreosis. So, if many kids with DS has such increased THS, does this automatically mean it's normal?? I mean, our kids have in many cases heart deffects, but are they normal only because they are "common"?
I have also a thyroid disease and I'm taking meds for it, although my TSH level was much lower as his! I just can't understand why my son don't need any meds, if his thyroid isn't functioning normal.
How are the physicians in USA dealing with this problem? Do they prescribe meds to the kids with increased TSH levels?
Our son is such a clever and activ child and I'm affraid he may slow down in his intelectual abbilities because of untreated thyroid which is very important for the whole development. His endo is allegedly the best in the city, so I don't know what to do.
Can you please give me some advice and share your experience with me?

Thank you!

Courtney · Posted: January 26 2010, 9:01 AM Post subject:

Lucy just began seeing an endocrinologist for hypothyroidism. Her T3 and T4 numbers were in normal range, but her TSH was high. The endo prescribed up a low dose of synthroid. While she acknowledged that hypothyroidism is common in kids with Ds, she did not indicated that that meant it didn't need to be treated. If I was in your situation, I think I'd ask for a second opinion.

_________________
~Courtney
{Lucy, 5, Ds, AVSD repaired 1/08; Brodie, 3}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

MegansMom · Posted: January 26 2010, 11:33 AM Post subject: TSH

My daughter also has normal levels of T4 and elevated TSH. Our endocrinologist calls it "compensated hypothyroidism." Here is the explanation that worked for my brain:
It's like if you are driving a car and you want to go 50 kph (switching to metric for you, Germany), but in order to get the car to go 50 kph you have to put the gas pedal all the way to the floor. Sure, the car is going the speed you need, but it is working way too hard to get there. So you know that something is wrong because you shouldn't have to push it so hard to that speed.
The TSH from the pituitary gland is the gas pedal of the thyroid and it is having to push too hard to get the thyroid to make the right amount of T4.

Megan is also being treated with a low dose of synthroid. From what I have learned I believe it is very safe to give her synthroid and is safer to add synthroid that is not needed than to do nothing.

Sometimes a doctor that is not known as being the best is more open to listen to the parents. If your son has symptoms of hypothyroidism and you think he should be treated stick to your guns!

_________________

Courtney · Posted: January 26 2010, 12:17 PM Post subject:

That was a fantastic explanation. Lucy's is considered compensated hypothyroidism, as well.

_________________
~Courtney
{Lucy, 5, Ds, AVSD repaired 1/08; Brodie, 3}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Tom · Posted: January 26 2010, 12:52 PM Post subject:

Heart disease is more common in smokers. Does that mean we shouldn't treat it? High blood pressure is more common in older people. Does that mean we shouldn't treat it? If the proper course of treatment in people who do not have Ds is to treat it, then the proper course of treatment for people who do have Ds is to treat it.

Len Leshin in his article on the thyroid and Down syndrome says that if T4 is normal but THS is high then some doctors will consider retesting in 3 to 6 months while others will treat immediately with synthroid. The condition needs to be closely followed and treated. If there are symptoms then it definitely needs to be treated.

By the way this condition is called "idiopathic hyperthyrotropinemia."

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
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kokiechick · Posted: January 26 2010, 1:13 PM Post subject:

Osiyyah has had a high TSH since he was born. His T3 & T4 levels have always been fine. We (or his doctors) have never put him on any medication because it has just been his TSH. His doctor has not wanted to put him on medication because it could throw him into hyperthyroidism if we weren't careful . . . because it isn't true hypothyroidism.

It's best for the TSH to be under 2.5. Osiyyah's has gone between 4.6 to 2.6 over the last several years. We have chosen to do a few things to help bring his TSH down, in hopes of preventing or at least delaying having to put him on any thyroid meds. We give him about 30mg/day of zinc and that has been a HUGE part in keeping his TSH down. When his zinc levels are low, his TSH is higher.

His TSH is good now and has been for a little while. But, when we were really trying to get it down a couple years ago we'd give him 2-3 teaspoons of coconut oil. It really made a big difference.

And of course we tested his TSH, FreeT3, FreeT4, T3 Uptake & thyroid antibodies every 3 months.

Qadoshyah

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happymom · Posted: January 26 2010, 1:22 PM Post subject:

When Netanels TSH came back high the first time our endo said to retest in few months. Came back high again, normal T4, btw loved that explaination! So we have had him on Synthroid. Qadoshya, Why the zinc as opposed to synthroid?

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girl 26 married with dd,boy & baby boy 1/17/11, boy25 married with, boy, & baby boy 4/6/11, boy 22, girl 20 maried 5/3/11,girl 17, boy 14, boy 12, Netanel 6 with DS

kokiechick · Posted: January 26 2010, 11:59 PM Post subject:

happymom wrote:

When Netanels TSH came back high the first time our endo said to retest in few months. Came back high again, normal T4, btw loved that explaination! So we have had him on Synthroid. Qadoshya, Why the zinc as opposed to synthroid?

Because Osiyyah's TSH is only high, so he is not technically hypothyroid. And by putting him on a thyroid med (like Synthroid), you could do more harm than good, because it isn't treating hypothyroidism. It's only treating a high TSH. And could throw the child into hyperthyroidism.

From some medical studies I have read, zinc has been found to be low in individuals with a thyroid problem and we have found this to be true with Osiyyah. We test his zinc levels and when they are low or deficient, then his TSH is higher. If we don't give him about 30mg of zinc/day then he will be low or deficient.

Qadoshyah

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Diana64 · Posted: January 27 2010, 7:06 AM Post subject:

Thank you to all of you for your informations! You were great help! Next week I will introduce my son to another endocrinologist and ask her for a second opinion. I hope we will get the best solution for my son.

All the best for you,
Diana

Karien · Posted: January 27 2010, 7:44 AM Post subject:

Diana, please introduce us to your son ( and your family) It's always interesting to meet new people and please stay in contact with us.

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Karien: happily married to Neels
Mom to Ewald (19), Eduan (16), Alvin (12) and KALLEN 6

eli'smommy · Posted: January 31 2010, 9:25 PM Post subject:

My son too has the elevated TSH and we started him on synthroid in September.
Megans Mom you describe it so well. I love it.
Since Eli has been on Synthroid it has made a big difference in every area. It's a low dose and we have not had to change the dosage.
I hope you are able to get some good feedback from your second opinion.

_________________
Melissa
Elijah 4
Gavin 8 months

KatieB · Posted: March 17 2010, 1:38 PM Post subject:

Julia had her thyroid levels done last October, and was within normal limits, just had it redone for other reasons, and it has more than doubled. The Dr that ordered this, not an endo, felt it was fine and will recheck it soon along with other labs Julia needs to have done. Call the Pedi, E mail an endo for another opinon?
Katie

TheBradyBunch · Posted: March 17 2010, 1:58 PM Post subject:

We just started Synthoid with Noah. His TSH was 14, and the ped said they generally start treating high TSH at around 10.

Someone said something about high TSH not being treated because it would do harm...

I was doing some research of my own...high TSH indicates that the thyroid is not doing it's job properly so the pituitary gland sends out the high TSH to make the Thyroid function where it should...just as if there was a low TSH the Thyroid would be in overdrive so the pituitary gland would lessen the TSH to balance out what the Thyroid is doing. I'm not sure I would go against my dr's advice and not give my son synthoid since his TSH was high. Especially since he's not gained any weight since Jan and his appetite has been sucking lately...I thought it was just because he was fighting something off...I had no idea high TSH could do this to him.

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"Sometimes the things we can't change end up changing us"

kittycat3376 · Posted: March 21 2010, 7:53 PM Post subject:

David's TSH is slightly elevated and he has been treated with low-dose thyroid pills since he turned 1.

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