# Freaked out



## annieo (Sep 26, 2012)

I am a little bit freaked out right now and it's not even about me and my lack of thyroid. When my son was born he had a thyroid test like all newborns. His TSH level was 45. At 2 weeks old he had a thyroid scan and they said his thyroid looked totally normal and come back at 8 months old to be retested. He had a drop in heart rate during labor and I had a c-section so they thought maybe that stressed his body out. So he was retested at 8 months and his t4 was in the normal range but his TSH was a 7. So it had come down but they didn't want to take any chances with him being a baby and developing so he was put on synthroid. We have lived with this for 14 years and it just became a normal part of life. Pops a pill every day, gets tested 1 or 2 times a year at the Endocrinologist and that was that. Well my son is now 14 1/2 and I brought him in for his appointment today and expected them to raise his dose. He wasn't having any symptoms or anything I just figured since he is going through puberty he may need his dose upped. The doctor spoke with me and said that my sons case has always been a head scratcher and that he sat down and went through all of my sons tests and lab results through the years and he wants to try taking my son off synthroid. :confused0081: Woooooooh what????? He said he wants to see what his thyroid does because he would rather him not be popping a pill all his life if it is not needed. He said he would be off synthroid for 3 months and then they would test him. He said it won't do him any harm and if they test him and his results are wonky they can put him back on it. I just feel so uneasy about this. This was totally out of left field.

Ann


----------



## lainey (Aug 26, 2010)

First of all--

Why is this a "head scratcher"?

Do you have his lab results and what is his daily dosage?

It won't do him any harm? Where does this doctor get the idea that it's a good idea to let a kid go hypo, just to see if he is, and back during the school year? That, and as he goes through puberty, his needs will change. Is this a new doctor? I think that the whole idea is a bit cruel, actually.

Thyroid medication is not something that you can take with out having symptoms if you don't need it. If his labs are normal, it is because he is taking replacement, and the replacement isn't doing him any harm.

Personally, I wouldn't agree to it.


----------



## jenny v (May 6, 2012)

I'm not sure I would agree to this either, especially if he's feeling good and his labs are normal while on the medication. Maybe it's just me, but I think popping one pill a day is really no big deal.

It's hard enough being a teen without being treated like some kind of medical guinea pig!


----------



## webster2 (May 19, 2011)

It does seem a bit extreme, maybe a find a different doctor.


----------



## Octavia (Aug 1, 2011)

I might agree to it, but not for 3 months. Maybe 3-4 weeks is a better testing point...you would definitely see "results" by then if his thyroid gland doesn't pick up the slack. (When I go without Synthroid for 3 weeks, my TSH is over 100.)

What is his current dose of Synthroid? That might give us a better idea of what you're up against here.


----------



## annieo (Sep 26, 2012)

I don't have his lab results for all the times he was tested. I did find one result from 2010 when he was on 112 mcgs. which is what his current dose is.

TSH:0.667 (0.700-6.400)
free T4: 1.24 (0.80-1.80 ng/dL

This has been his endocrinologist since he was born.

Ann


----------



## Octavia (Aug 1, 2011)

Oh, wow...if he's on 112 mcg, then I absolutely wouldn't stop him cold turkey for 3 months. No way in #@$%.


----------



## annieo (Sep 26, 2012)

Ok I'm not going to have him do it. It just didn't seem right when the doctor was telling me this. I just didn't have a good feeling about it. My son doesn't have a good feeling about it either. I don't need him getting messed up. He has been doing fine on the synthroid. I'm going to call the doctor and tell him that we've decided not to do this.

Ann


----------



## annieo (Sep 26, 2012)

I don't know a whole bunch about this thyroid stuff but if my sons thyroid were working properly wouldn't he be hyperthyroid if his thyroid is producing hormone and then you add in replacement?

Ann


----------



## Octavia (Aug 1, 2011)

112 mcg is a fairly high dose for someone who still has a thyroid (I take 137 after TT, and I may be about the size of a 14 year old boy, but not quite as active). That tells me his thyroid isn't doing a whole lot of work. I'm guessing the doctor wants to see if your son's gland kickstarts when it doesn't have the "outside help" so to speak. While I can understand the experimentation to a certain extent, I think it would be a lot better to try it in the summer when he's out of school, and only for a month at the most. After a month or so, he'll be pretty darn miserable. Three months is downright abusive if the "experiment" doesn't work.

I seriously doubt his own thyroid would pick up enough to make up for 112 mcg of Synthroid. 25 mcg, maybe. 112 mcg, probably not.


----------



## annieo (Sep 26, 2012)

Thanks! This was my thoughts exactly. If any experimenting is to go on it should not be during school. I wonder if his dose could just be lowered for a while and then see if the thyriod picks up the slack. It just seems so crazy going to no synthroid. Thanks for letting me vent my anxiety. I really didn't have time to think when I was at the doctors with my son.

Ann


----------



## CA-Lynn (Apr 29, 2010)

Don't fix it if it ain't broken. Leave well enough alone.


----------



## annieo (Sep 26, 2012)

lainey said:


> First of all--
> 
> Why is this a "head scratcher"?
> 
> ...


I think when he referred to head scratcher he was talking about them never really knowing why he was showing as hypothyroid when he was a baby.

But it doesn't matter at this point. I am not going to let them take him off the synthroid for now. Maybe at another time we will revisit this but I would have to think there is a better way to go about it then just going plain cold turkey.

Ann


----------



## lainey (Aug 26, 2010)

Your son wouldn't be the first child with a congenital thyroid problem. Just because he was born with a thyroid doesn't mean it has to work. It would just be bizzarre to me that after 14 years, a doctor would suddenly want to find out if a treatment that has been working would be needed. He already has been taking a pill all of his life, and as you have said and most of us know, it is not a really big deal.

I have seen this happen to adults though, who move to a new doctor, where they take them off of their meds to see if they really "need" it. Would they do this to a diabetic on insulin? It doesn't make any sense to me, because you don't tolerate thyroid meds if you don't need them--unless it is a very small dose, and your son is on a dose that is probably close to full replacement for his height and weight, assuming he is not fully grown yet. You are correct, if the thyroid is also working, the patient would be hyper thyroid if also taking replacement.

Who knows, if you have had the doctor all this time and don't dislike him, maybe he was having a "moment". The only people who don't think it's a big deal to be hypo are those who have never been there, so I'm guessing he thinks it's harmless that your son would be a little tired and gain a little weight to "prove" that he really does have a thyroid problem. I doubt any normally active teenage boy would agree to that.

Sorry I sound so sarcastic, but the doc's comment, made me (as a mom myself) a little infuriated. It's not necessary and he should leave well enough alone.


----------



## annieo (Sep 26, 2012)

Just wanted to give an update.

I did not take my son off his synthroid. We had his followup visit yesterday and the doctor was fine with our choice. I had told my son he would need to speak up and advocate for himself. Of course I would too but I had him talk with the doctor first because it would mean a lot more coming from my son then from me. He told the doctor that he was feeling good on the medication and that going off the medication at this point in time was not something he wanted to do and not something he wanted to deal with being in high school. He asked my son a few questions about how he was feeling, if he was having heart palps, how he was sleeping, any constipation etc etc. My sons blood was drawn and we will wait and see what the results bring.

Ann


----------



## Andros (Aug 26, 2009)

annieo said:


> Just wanted to give an update.
> 
> I did not take my son off his synthroid. We had his followup visit yesterday and the doctor was fine with our choice. I had told my son he would need to speak up and advocate for himself. Of course I would too but I had him talk with the doctor first because it would mean a lot more coming from my son then from me. He told the doctor that he was feeling good on the medication and that going off the medication at this point in time was not something he wanted to do and not something he wanted to deal with being in high school. He asked my son a few questions about how he was feeling, if he was having heart palps, how he was sleeping, any constipation etc etc. My sons blood was drawn and we will wait and see what the results bring.
> 
> Ann


Good for your son and good for you, "mom!" Excellent! Please share lab results and ranges when they come in if you like!


----------



## annieo (Sep 26, 2012)

Ugh! All the doctor sent in the mail about my son's recent thyroid labs is that his results were normal and to continue on the 112 mcg of synthroid. I will be calling to see if I can get them to send me the actual numbers so I can have them for my records.

Ann


----------



## Andros (Aug 26, 2009)

annieo said:


> Ugh! All the doctor sent in the mail about my son's recent thyroid labs is that his results were normal and to continue on the 112 mcg of synthroid. I will be calling to see if I can get them to send me the actual numbers so I can have them for my records.
> 
> Ann


And of course you know we would love to see the results and ranges for ourselves as well.


----------

