[hannahsmom]

#1058660

Hi –

My name is Brenda and my daughter may have Graves disease. We are awaiting her thyroid antibody and TSI results. To make a long story short, she is 13 years old, has had a goiter since the age of 4 and has been hypothyroid since she was 5. 2 months ago her T4 and free T4 started to rise, and her TSH was low. After decreasing her synthroid dose, her T4 and free T4 continued to rise, and her TSH fell to 0.011. Her goiter is getting larger, she has a high resting heart rate, has lost 4 lbs and is jittery. I am very worried that this is Graves disease, but the endo says it could just be a temporary flare up.

Does anyone have any feedback, advice, etc for me? I am having trouble sleeping and feel like crying all the time. I would be able to handle this a lot better if it were me. Maybe I am worrying for nothing – but I don’t want my daughter to go on potentially toxic medications.

Thanks in advace for any help/advice. If she does have Graves, we are thinking about coming to the conf in Nov. Do you think that would be helpful for us?

A worried mom in Texas

[Bobbi]

#1169218

Hi, and welcome to our board.

A bit of perspective: aspirin and tylenol can be toxic in too large a dose. The medications that we are put on for hyperthyroidism have side effects in only a small percentage of people who take them (I believe it’s less than 5%), as long as the dose is appropriate.

There are also other options sometimes for treating thyroid issues. For example, the thyroid can be completely removed via surgery. Typically, with adolescents the doctors prefer not to use RAI, but that is also safe, long term as far as anyone knows. I know that you can find tales on the web that contradict that last statement, but they are bogus. Long term studies of people who have had RAI show that BEING HYPERTHYROID is vastly more dangerous than any of our treatments, including RAI.

So the main issue is to stay on top of your daughter’s condition, making sure that her thyroid status is being checked reasonably frequently. If she stays hyperthyroid too long, it can have long-lasting implications for her health.

My heart goes out to you both. It’s hard enough to make decisions for ourselves when it comes to treatment, but making the choice for a child is an additional burden. I hope that she is feeling much better, soon.

[Nat82]

#1169219

Hi There:
Before worrying too much, I would wait and see what the doctor has to say about her lab results as it may just be a "flare up". If it is Graves Disease then at least you’ll know what it is and she can begin treatment sooner rather than later.
I was diagnosed with GD when I was 12 (no one in my family has any thyroid issues) but the doctors think I may have been hyper for a couple years before the diagnosis. At 15 I had a full thyroidectomy as was recommended by my Endo but that’s because they were unsuccessful in keeping me in remission for longer than 6 weeks. In your daughter’s case if this is GD, you’ll have at least gotten treatment early and in my experience/research, that makes a world of difference in keeping her stable.
Please post again when you receive her labs back and let us know.
Feel free to send me a private message if you ever want to speak with someone who was also diagnosed as a child.

[snelsen]

#1169220

Hello. If you have any chance for you and your daughter to to the conference, I think both of you would like it a lot.
I went for the first time last year. Perhaps Kimberly and Ski will chime in on this post, for they might be able to tell you if there were other teenagers attending last year. I know there was a fifteen year old girl, for I sat next to her. She loved it.

I sure understand how painful it is to have a child with this condition. She will be better. Bobbi mentioned that many drugs can be toxic. But the same drugs are also life-saving, and the other relevant factor is dependent on the dose. But I am not clear how the decisions have been made at this time, ie, you have said the endo is decreasing her Synthroid because of the labs and her clinical symptoms. How soon will there be a discussion on further treatment for her? As Bobbi said, it is really dangerous to be hyper with too much thyroid hormone running around. It’s hard on the heart, the weight we lose is muscle, we feel terrible. I know you have dealt with labs and levels for a long time, since she has had thyroid replacement for so long. But the symptoms are worrisome, and I am hoping that you and your daughter are not in limbo too much longer about this. I suggest you do have another discussion with the endo and your daughter about your reluctance about beginning treatment. Treatment does begin with ATD’s, and a beta blocker if necessary, to reduce the amount of thyroid hormone in her body, which is also very toxic, because it sounds like there is too much hormone. Perhaps the endo drew the antibodies for further information. I hope you don’t have to wait too long for the results. But I suggest the next time you talk to him/her, you are ready give the information on her heart rate, and all her other symptoms. I am not familiar with temporary flare-ups. But if it were my daughter, I would be asking the endo a lot of questions treating the symptoms and not treating the symptoms. Think a lot about Bobbi’s statement,

"So the main issue is to stay on top of your daughter’s condition, making sure that her thyroid status is being checked reasonably frequently. If she stays hyperthyroid too long, it can have long-lasting implications for her health."

And you are doing that. Try to learn more about anti-thyroid drugs (ATD’s) and maybe read some of the posts about how much they helped other people. Ask the endo if it is better for her health to treat the perceived temporary Graves’ with ATD’s anyway, for if she stays with these clinical symptoms, it is my thought that they are equally harmful for her if not more so, that taking the ATD’s.

I suggest you try the search engine above, typing in "teenager" or "childhood Graves" and see what pops up. I think I remember some posts on this subject.
I look forward to your next post,and wish the best of the best with her getting on the right path to feeling good again.
As you know all of this is a balancing act, with dose, labs, how we are feeling, and physiological changes that can be harmful if not treated. Then throw in a growing girl, and her own endocrine changes at the age of 14. At the end of the day, you will find the right path for her. We ALL feel that everything related to the thyroid gland takes to long to get the information, and treat.
Shirley

[hannahsmom]

#1169221

Bobbi, Nat82 and snelsen –

Thank you so much for your replies. Here is an update:

We received the results of her anti-TPO, thyroglobulin and TSI last night – and they were all "negative." To my understanding – that probably means the results were within normal range, not necessarily zero. I am going to try to get a copy of the lab results tomorrow.

The plan is this: she is going to have her thyroid panel repeated Oct 4 (about one month after last synthroid dose), an exam to check size of goiter and consultation on Oct 6. If she is still hyperthyroid, we will schedule a RAIU scan.

I have been doing some research, and evidently in one study 91% of children with Graves had an abnormal TSI, but only 57% did in another, larger study. So the RAIU will (hopefully) give us a diagnosis?

Still considering coming to Boston – would it still be helpful if she does not have Graves (or the tests are not complete)?

Nat82 – I will contact you if she does have a diagnosis of Graves in the future – and I really appreciate the offer of letting me consult with you.

Thanks again to all of you –

Brenda

[Kimberly]

#1169222

Hi Brenda – It’s definitely helpful to get a hard copy of your daughter’s labs. The TSI test is a measure of how much stimulation the thyroid gland is receiving from the antibodies in our system. A result above the “normal” range indicates that there is enough antibody activity going on to make us hypERthyroid. The term “normal” in this test is a little confusing, though, because someone without Graves’ should have a reading well below what the lab calls “normal”.

As for the conference, I would say that depends on how easy it is for you to get to Boston. The material will be mostly focused on Graves’, but *all* of us with thyroid disorders can relate to the challenge of dealing with symptoms while trying to get our levels balanced out. Also, one of the presenters (Dr. Rivkees) is an expert on all pediatric thyroid issues, not just Graves’.

I don’t recall any teenagers attending last year (perhaps Ski can refresh my memory), but I do know we have one confirmed attendee who just graduated from college.

Hope this helps!

[DeaKai]

#1169223

I agree that the medication is a more promising alternative to the devastating affects and effects of hyperthyroidism. There’s a Dr. Ridha Arem (MD) who I believe still resides in Texas–he actually treated the Pres. Bush family–and has written a book titled ‘The Thyroid Solution’. This gland is so complex and needs special care and this book is very comforting to those who need more understanding about it. I know that we become empowered when we study and obtain knowledge regarding anything in life as I have my faith in God as well. Currently I’m not GD diagnosed but I’ve had the thyroid inflamation and harmone highs and lows since my early 20’s as I am now 48. I’m pursuing an allergist to find out if my allergy to corn is predisposing me to adverse prescription medication reaction. It’s a road you may want to pursue regarding a number of allergies undiagnosed that effect digestion brought on by thryoid imbalance. Finding out what causes allergic reactions may take stress off the system and in turn may help the thyroid…just a thought…not a diagnosis. I’m currently reviewing surgery with my Doctor as well. Keep studying and I know it will ease your mind greatly! I have three grown children who have benefitted from my experience immensley. All the best!
D.K.

[hannahsmom]

#1169224

Finally got my daughter’s most recent lab results in the mail today:

TPO Ab < 6 (ref 0 – 20 IU/ml)
Antithyroglobulin Ab <20 (ref 0-40 IU/ml)
TSI 46% (ref 0 -139%)

Please let me know what you think these mean as her Dr’s nurse described these as "negative."

By the way – she seems to be doing better – no increase in goiter size that I can tell – maybe has gone down a little? (she says it’s just my imagination that it might be shrinking).

Anxiously awaiting your feedback

[Kimberly]

#1169225

Hello – We aren’t doctors here, just fellow patients, so we aren’t qualified to interpret labs. I would suggest following up directly with your daughter’s doctor. If he/she doesn’t feel that the antibody tests are conclusive, there is another test called an RAIU uptake & scan that can help determine if your daughter’s hyperthyroidism is being caused by overactive nodules or by thyroiditis.

[snelsen]

#1169226

Hi Brenda,
perhaps you need some help interpreting the print out of the labs. Once you get some health problems, it is helpful to have a beginning understanding of them. BUT, as Kimberly said, the interpretation is definitely up to the doctor. IT is a big subject. There are labs when being up or down out of the range a little bit, does not matter a lot, and there are others, where the range is really small, and the result being high or low is very important, and sometimes life threatening.
In this email, I am simply writing a little bit more about your daughter’s labs, and why your doctor said they were negative.

Generally, the first number is the "result" The numbers in parenthesesis represent the calibrated range of "normal."
So, with the TPO lab, the result is 6. The range is between 0-20.
And the same with the other two.
Anththyroglobulin Ab, the result is 20, the range is between 0-40
TSI of 46% with the expected range to be 0-139%
This should help you understand why he called them negative. You can double check with the office again if you need more answers. It depends on the lab.

And, some of the antibody labs results are listed negative, indeterminant or positive. In other words, no activity, unable to determine if it means activity, or high activity. As an example, here is one of my labs,and the way it is listed.

Anti-thyroid peroxidase (EIA) reference range: 11.2 [<2.0 SD negative] [2.0-10.0 SD indeterminate] [>10.0 SD positive] 0-1.9

I hope this helped a little bit.
Shirley

[hannahsmom]

#1169227

Thanks Kimberly and Shirley –

I know you are correct and I need to have the Dr. interpret these – but I appreciate the clarification. It’s hard to sit and wait and not do anything. I will focus on being thankful that she’s doing ok and wait until we have her exam and consultation next week.

Will keep you posted.

[snelsen]

#1169228

Hi Hannahsmom,
it is great that she is doing ok, maybe even better? And, to be clear, your doctor did interpret the labs, telling you they are negative, which means that they are indicative of high activity of any of those test. And you can clarify all of this at the appointment next week.
Suggestions
1. Sign a medical release of information form at the front desk. Check or state that you would like all lab results and narrative reports of all visits. Then, when you get home, and say to yourself, "What did he say? I can’t remember this!
Or that!" That is the value of having a file of your (her) health records at home. It is your right, more and more people are doing it, and it a wise and careful thing to do. Do it for yourself, too. Hope you do. After you sign that, ask the front desk if they will print out her recent labs, and copy of your last visit. THey might, or might not, they might say Medical Records has to send them, but many offices will just do it for you right then.
2. Write your questions and Hannah’s before your visit, leave room for brief answers during your visit next week.
Shirley

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