[kms1246]

#1059036

My 16 year old son was diagnosed a little over s year ago. His levels were under control for a while. I noticed the start of a goiter and contacted his endo. His T4 is 1.8 TSH is undetected?

[Bobbi]

#1171692

Undetectable TSH means that the pituitary gland has shut down its production of thyroid stimulating hormone (TSH). Or at least lowered it so far that the normal tests for TSH cannot find it. The pituitary acts as a kind of thermostat for thyroid hormone levels. In a healthy person, when there is too much thyroid hormone the pituitary lowers its levels of TSH. Or, conversely, if it detects too little thyroid hormone, it raises its production trying to stimulate thyroid cells to make more hormone. When we have Graves, that mechanism gets broken. The pituitary still works, but the thyroid cells no longer respond appropriately.

[kms1246]

#1171693

Thanks…. We are seeing the endo on thursday. The goiter is a new side effect for him. I am hoping that we can maintain his levels on tapazole for a while. He is really upset and does not want to remove his thyroid. Thankfully I was able to see the goiter, we were not due for blood work until July.

[kms1246]

#1171694

Another factor in all of this is when the time comes, and I am sure it will, is which method to use when his thyroid needs to be removed. I am not sure about either of our options and at this stage I really need to be informed so that we can make the best choice. He is a really good kid and I hate that this is so life altering for him. He has not been feeling well for so long, even when his levels were “in normal range”.

[Kimberly]

#1171695

Hello – All of the treatment options have risks and benefits, so it’s definitely important to do your research and make a decision that you (and your son!) are comfortable with. Some — although not all — doctors will support longer term use of anti-thyroid drugs.

There are some good resources in the “Treatment Options” thread in the announcements section at the top of this forum. Also, this is a link to an article that compares the three treatment options as they relate to younger patients.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=320028&Ausgabe=254650&ProduktNr=224036

Wishing you and your family all the best.

[Bobbi]

#1171696

One thing to keep in mind: living without a thyroid is no big deal. It may not be anyone’s “first choice,” but if your son’s doctor should recommend removal, it is important to recognize that it is a viable way to return your son to health. There are lots of us who, for one reason or another, have had our thyroids removed. And the replacement hormone pill we take works to keep us healthy.

[kms1246]

#1171697

Thank you for your response. The doctor does feel that removal is in his best interest. We have decided to have it surgically removed rather than RAI.

[snelsen]

#1171698

There are some good posts about the thyroidectomy experience. It was my choice, the recovery was smooth, and I return to my normal state of health quite rapidly. Kimberly gave some nice references to you. The most significant thing is to have a surgeon who does this procedure on a routine basis, at least 50/year. I imagine your endocrinologist will guide you in that direction.
lch11 or lhc11, I can never remember which, described her experience nicely.
I think I recounted my experience, too, basically saying that my neck and throat were a little tender for a few days, and basically no pain that a tylenol or ibuprofen (later) would not help. BEst to not begin by eating food that needs a lot of chewing, cause you are sore. This partially because of the surgery, and partially because of having our neck extended in a backward position. The kind of sore that you have if you go running, and have not run for a while, lifted weights, etc.
The drops you take before the surgery (potassium iodide) taste terrible. I cut it with cranberry juice and orange juice.
shirley

[kms1246]

#1171699

Thanks….I read her links. They were very helpful. I am glad my son chose surgery. I am not comfortable with the RAI although I tried to keep an open mind about it. I was really worried he would prefer it over surgery. I feel so much better now that the decisions have been made and there is a plan. He will have his surgery at Yale by a thyroid surgeon who has been highly recommended.

[Bobbi]

#1171700

I do wish him good luck with the surgery and hope he is feeling much better, soon.

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