[Stymie]

#1060078

Hi

I had my daughters thyroid tested last week. She has been complaining of heart racing and being hot. She eats constantly and has recently been having a hard time sleeping and she’s very irritable. Btw she’s 15.

So her results

TSH .6 ref .5-4.3
Ft4 1.0

Not sure what the range is on that one.

Not sure what to do. Do I wait til she goes out of range? Which for me was about 6 months.

Or do I just take her to a pediatric endo now. Another thought is if I should have the antibody test done ?

I’m absolutely heartbroken. And not sure where to go from here. I think I know what I need to do. I think I’m just looking for confirmation …

Any advice?

Diane

[Gabe]

#1180155

Hi Diane.. so sorry to hear about your daughter. I’m sure as a parent you are heartbroken that she’s potentially on the GD path. Personally, if it was me I would schedule her now. Why wait for some test to tell you she’s hyper when all signs indicate. But for a slightly different number, she would officially be hyper. I’m sure you don’t want her to wait until she’s much worse than she is. And it could take a while to get the appointment. I vote for calling now and taking action now…you and she both know this isn’t ‘normal’ so why wait.

I’m not a parent so I just can’t imagine how you are feeling… hugs….

Karen

[Steph82]

#1180156

I would go ahead and have her antibodies tested now!

[Stymie]

#1180157

Thanks guys.

That’s what I have planned. I have a call into her pediatrician and hoping she will just schedule the antibody test so we can know for sure what this is.

I had a feeling but I was hoping for a better result.

I will let u all know how it goes.

Thanks for the hugs Karen I needed that!

Diane

[snelsen]

#1180158

Just a quick note right now. i am so darn sorry. To be 15, and have probable Graves’, not feel well, is pretty much over the top! As you know already, we are other Graves’ people, but we learn so much from each other!

Yes, I think definitely she should be seen by a peds endo, and/or any endo who is familiar with Graves’. Regardless of the labs, the fast heart rate is a bad place to be. Plus, she has cardinal symptoms of hyperthyroidism. My thinking is that she needs treatment now. Not later.
I think in her case, antibody labs are very good idea.

I have gone to a couple GDATF conferences. I met teenage girls both times. I am hoping Kimberly weighs in here, for she may have more information about teenagers and Graves. I remember how THRILLED these girls were to find each other. They were at the conference, probably under some degree of protest, and the whole experience was soooooo empowering to them. Especially in a reliable, trusting environment, with very skilled and experienced speakers on all aspects of Graves’.

Shirley

[Stymie]

#1180159

Thanks Shirley.

I just got this information this morning because her pediatricians office needed a form signed in order to get her results in paper form. So I had been told by the nurse all her labs were within range.

So anyhow my daughter and my husband at this point think everything is ok. I was going to start looking into a pediatric cardiologist for her. But now this explains so much.

It’s hard for me to reconcile that her dr says she’s within range and fine when she is .1 away from not being fine and not in range. If I hadn’t asked (just from being a graves patient myself) I would still be in the dark and wondering what’s wrong with my daughter. It’s a little frustrating you know?

But on from here. At least I have some knowledge and experience to try and wade through these muddy waters again. That is the plus for her.

Do we have a link for pediatric endos? I got my endo from a friends recommendation and she ended up being on our list here. And I lived her the first time I met her.

Does she absolutely need a peds endo?

And once I do get home and talk with my husband and her about all of this I’m sure she would love to meet with more people like herself. I’m hoping it doesn’t come to all that. But I’m prepared to help her either way.

So many questions…

Thank you to all!

Diane

[snelsen]

#1180160

Hi, no, you do not need a peds endo. They are rare as hen’s teeth, anyway.

I suggest you get copies of her labs Also, b/c she is a teenager, you might have to hog-tie her down, take her pulse. A rapid heart rate is not good.
Do you know what it is running?

I would not be able to reconcile her being OK with her labs so close to being out of range. Plus her symptoms.

Yes, if you did not have Graves’ yourself, you would know nOTHING about Graves’. And since she is 15, you could have attributed all her symptoms (except rapid heart rate) to being a teenager.

It is hell to be hyper, and not good for her. If you can’t get her to an endo, maybe your primary doc. She needs some education, too, perhaps the rapid heart rate is something that can concern her if you can relate it to the fact that it will impact her health and what she can do.

The symptoms are so classic, I hope she can be seen and treated. I know it is easy to say, hard to accomplish.
Shirley

[Kimberly]

#1180161

Hello – I’m so sorry that your family is dealing with this. I think the first step is to get a look at your daughter’s actual labs (including ranges) and make sure that she gets a correct diagnosis – whether the racing heart is due to thyroid dysfunction or some other unrelated cause. Obviously, every lab’s range is different, but if my F4 was 1.0, I would be almost out of range hypO.

If you would be more comfortable getting an evaluation from a pediatric endo, the link in the “Looking for a Doctor” thread for the American Association of Clinical Endocrinologists lets you select a specialty, including pediatric endos.

Hopefully, this *won’t* turn into a diagnosis of Graves’, but if it does, there are some nice videos on the GDATF’s YouTube channel at http://www.youtube.com/user/GravesAndThyroid from Dr. Scott Rivkees and Dr. Michael Gottschalk. There is also a Facebook group for parents of kids with Graves’.

Hope that you can get some answers soon, so that your daughter can get back to enjoying her life!

[Stymie]

#1180162

Hi and thanks Kimberley for the info.

ft4 is 1.0 range .9-1.4

I looked back at my old records and 7 months before being officially diagnosed I was at

TSH .74 ref .4-4.5
Ft4 1.0 ref .8-1.9

So right around where she is now.

Pediatrician called me back wants her to come in for another visit.
My husband is really in denial right now. Just keeps telling me her labs are in range. But he doesn’t realize (and I’ve repeated many times this evening) is that its not just her labs. It’s all the symptoms I’ve been trying to tell myself were normal over the past year. They all add up to one thing. And I know because I’ve been there myself. It was 73 out yesterday and she’s complaining its so hot out.

She is spending a few days at a friends house so I haven’t had a chance to talk to her about this at all. Which my be good since I will have that time to mentally prepare myself for the discussion.

Ok so what do you all think. Yes labs “in range” but I still think I need to follow up on this.

Diane

[snelsen]

#1180163

Hi Diane,
What is her heart rate? Do you know what it was when it was rapid?
Of course the heat intolerance is part of it, as you know.
Of the symptoms that she has, heart rate and blood pressure AND how she feels, AND her sleeplessness (what a word!) certainly lead you to watch, see what happens in the following weeks. Her racing heart and BP should be checked.
Is she willing to do that, or even talk to you about how she feels? Does she know how to take pulse, count it for 15 seconds, multiply by 4, write it down?

YOu do have a dilemma with her.

I suggest you get hard copies of her (and your labs) keep them in a folder.
You do not want to rely on being told on the phone that her labs are in range.
Not good enough. GEtting copies is always a good idea.

Also it is a great idea during any visit to get the lab order for the next time, so ou can go at your convenience.

I suggest signing a release of information form, getting copies of what is said for each visit. That is what I do.

YOu have a little time, I guess, if her heart rate is not crazy. If it is faster than 100, somebody needs to know this. You can also explain to your daughter that you know this is all a big pain, and you understand, but if there anything going on with her, you want to deal with it so she can be ready for school, and life.
Shirley

[Stymie]

#1180164

Hi Shirley,

I have a blood pressure cuff and every so often I would have her check it. Her blood pressure is always pretty good. Her heart rate is usually 95. Couple times when she felt it was racing was 110 & 130. And it came down later in the evening when I had her check it again.

When we were in the drs office they manually calculated her pulse at 84. Idk if that’s more accurate than the bp cuff?

I got the paper copies of her labs yesterday. And I’m gonna have to call back her dr again since she didn’t call me back again.

I’ve been with this pediatrician for 15 years. I would hate to have to switch. Although if they give me a hard time that is exactly what I’m gonna do. My husband agrees.

Going to give them another call.

Diane

[Stymie]

#1180165

Yes! They ordered the antibody tests and an ultrasound as well!

Diane

[snelsen]

#1180166

Gosh, I am not sure what to do/think, either.

In my opinion, feeling a pulse and counting it ranks a bit higher than a machine, but as i reflect on this, a lot of medical decisions are made with machines in the hospital, and feeling a pulse manually is less common now.

Certainly a pulse rate of 59 is a bit rapid, but does not meet the criteria for rapid, tachycardia (means over 100 for an adult)

YOu’ve got a historic relationship with the peds endo. I think it is better to try to work with him if you have generally been happy with him.

I can see, with the labs, pulse rate, and perhaps a bit of understandable bias toward a 15 year old who is irritable (i think being a teenager is tough for everyone!) that a “watch and wait” plan seems to be what the endo might be thinking.

Maybe the antibodies will help with a definitive diagnosis, plus the ultrasound. Seems they are doing all the right stuff.
Shirley

[Stymie]

#1180167

Having my daughters tests done on weds morning.

Wish us luck!

I will keep u all posted.

Diane

[Kimberly]

#1180168

That’s good news that you got the tests scheduled – hope you can get some answers!

[Author]

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