[mistrepl]

#1060262

Hi everyone! First I’ll provide a little background – around the beginning of September we took our son to our PCP for an ear ache. While there he noticed that his thyroid was enlarged, we had some blood drawn and had an ultrasound the following week.
Blood work:
Free T4 3.1 (range .8-1.
Anti-thyroid peroxidase (hatpo) 5597.4 (range 0-39.9)
Thyroid Stimulation hormone with reflex (htshr) .010 (range .350-5.5)
Free T3 (hft3) 10.6 (range 2.3-4.2)
Anti-thyroglobulin (hatg) 483.3 (range 0-39.9)

Ultrasound:
Right Thyroid Lobe is within normal limits in size measuring 4.1×2.1×2.1 centimeters. The right thyroid lobe is markedly heterogeneous in appearance, there is significant hypervascularity seen on the color images. There are occasional heterogeneous hypechoic nodules scattered throughout the right thyroid lobe, all measure 5 millimeters or less in size, I favor predominantly cystic nodules with increased through transmission.

Left thyroid lobe is within normal limits in size measuring 4.0×1.4×1.6 centimeters. The left thyroid lobe is heterogeneous in appearance, there is significant hypervascularity also seen in the left thyroid lobe on color images. There are a few small heterogeneous hypoechoic nodules scattered throughout left thyroid lobe, all measure 5 millimeters or less in size

Thyroid Isthmus measures I estimate 4-5mm anterior to posterior dimension. It is heterogeneous in appearance, in the anterior aspect of the isthmus there is a heterogeneous hepoechoic solid nodule seen measuring 6x6x3mm. color images are within normal limits at the level of the isthmus

Impression: Thyroid gland is within normal limits in size, it is how ere markedly heterogeneous and hypervascular in appearance. There are scattered small nodules bilaterally, but no worrisome dominant solid or cystic nodule clearly seen.

So with this blood work and ultrasound our PCP referred us to a pediatric endo at our local Childrens Hospital. We were into see her within a week. Her diagnosis was Hashimotos disease, but saying that he was going through a transient stage being hyperthryoid at the time. Her suggestion was to wait out the hyper phase, retest blood in 2 months and to not begin treating until he begins to go hypo.

In the meantime my son’s blood pressure is going through the roof, a normal reading for him was 160/80. And I have hashimotos disease, so I know my blood tests have never looked like his?? So I pressed further, while at my PCP with him again just 3 weeks ago I insisted on seeing a pediatric cardiologist for his high BP at a large university hospital (about 90 miles from me) and while I was there I wanted a 2nd opinion with a pediatric endo out there as well. I’m sure as you know the cardiologist had us in the office within the week, the endo was booking into january – so I took the cardiologist appt, and hoped like heck that he could help get us into the endo there sooner.

Went to cardiologist appt this past Monday, they did an echo, ekg and ultrasound of heart. Thankfully no damage to heart from the high BP. They started him on low dose of BP med metoprolol and called the on call endo. The on call endo ordered additional blood tests and was sure it was graves. So we had blood work done.

Thursday the cardiologist called me with the blood results, saying he for sure has Graves disease.

The thyroid Stimulating Immunoglobulin test was 4.1 (I don’t have the range)

He suggested we head back to our first pediatric endo – I said I would like to see your pediatric endo but was having difficulties getting in. We ended up back out at their endo yesterday.

The university endo confirmed the graves disease and recommends the RAI – with medication not being a great option for adolecents and would tie my very active son to a ton of blood work and possible adverse reactions. My husband is totally for the radiation – me not so much!!

In the meantime I have contacted the first pediatric endo and she wants to see him in office on Monday and she recommends surgery, based on the fact that there are not any long term studies done yet on the effects of RAI therapy given to adolescents that are prepubertal.

So I need to fix my son! He is a very active 5’1″ 11 year old that weighs 84 pounds, he plays travel baseball, basketball and hunts like a crazy kid. He has been seeing the symptoms of graves, headaches, nausea vomiting, he eats like crazy, lots of bathroom time with some diarrhea. I am looking for opinions on each treatment – surgery and RAI. I know this is a board for typically adults but if anyone has any information on treating a kid it’s appreciated.

Thanks in advance!!,
Penny

[npatterson]

#1181619

Dear Penny,

For once, I cannot say there is not enough information! We are not doctors, but any doctor you may ever see would be well-informed by this post, so print it out and keep it.

There are pros and cons for every treatment, even for children and adolescents. I will send a note to Kimberly and ask her to get you the information that was in a fairly recent newsletter about surgery becoming much more a selected treatment. The recovery is relatively brief (Christmas vacation is coming) and the adjustment of thyroid replacement must go on with whatever treatment is selected.

While he certainly needs parental guidance, you son needs to have an informed say in this process. I hope parents who have been through this will get on the board and post; even some teenagers.

In the meantime, go to the Home Page, and then to “About”. It takes a couple of clicks, but there are articles in there about comparing treatments, surgery, and children. Print them out and read them.

Take care,

Nancy

[Kimberly]

#1181620

@Penny – If you would like to send your mailing address to info@gdatf.org, we can get you a copy of the article that Nancy mentioned.

In the meantime, the “Treatment Options” thread has a couple of nice links that go through the pros and cons of each treatment option. The one with the guidance from the American Thyroid Assoc. & American Assoc. of Clinical Endocrinologists actually has a section on children. Also, this article might be of interest:

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

http://www.karger.com/Article/Pdf/320028

You might also visit the GDATF’s YouTube page and check out the videos on children and Graves’ from Dr. Scott Rivkees and Dr. Michael Gottschalk:

http://www.youtube.com/user/GravesAndThyroid/videos

I know this is a difficult decision, especially to make on behalf of a child. Wishing you and your family all the best!

[Megan]

#1181621

Hi Penny!

I’m so sorry to hear about your son, maybe my experience will help?

When I was first diagnosed with Graves Disease I was only five and too young to understand. My parents didn’t tell me anything about why I was constantly getting poked and prodded with needles, why I felt so sad, why I couldn’t sleep but was so tired, why I had a noticeable bulge in my neck, or why I had discolored skin.
Growing up I got made fun of in school and day care (when I was really little) for many of the symptoms of Graves that I couldn’t control nor understand. Needless to say my childhood was anything but happy.
When I was about nine my mom explained to me why I was so sick all the time and why I wasn’t “normal”. I had many questions that my mom kind of evaded because she didn’t want to scare me. I can only imagine how terrified she was because of how research there was for children with Graves at the time. Looking back I understand why she tried to downplay it for my benefit.
What she didn’t know was how alone I felt through all this. I felt like I didn’t know myself. I’m tearing up as I write this because what truly scared me and still scares me the most is I don’t know who I am without Graves Disease. I’ve always had it (for as long as I can remember) and I always will because there is no cure. I was very depressed as it was and throw in my thyroid levels being extremely low didn’t help things.
One if my most prominent symptoms was (and still are) panic attacks. I would hyperventilate and freak out (for lack of a better word) at the littlest things that didn’t seem so little to me. For example, loud noises such as fire drills in school, bugs, and needles made me have severe panic attacks. Whenever we had a fire drill in school and I lost control I was made fun of and stared at like a freak, my father would scream at me when I lost control when they would try to take my blood, and he would also scream when I lost control when a bug flew in the car. No one understood and after being called a freak so much I started to believe it. That’s when I decided to do my own research and it was mind opening as well as devastating.
Not only is Graves rare but at the time it was unheard of in children my age. I felt alone and some days I still do. Everything kind of turned around when I started seeing a therapist who helped me find a different perspective and way of dealing with the whole disease. For example: when I was younger and my father would urge me to cover up my vitiligo (the discolored skin) because he was ashamed of it I would feel ashamed too. When people would stare at my neck and the bulge in it I would feel embarrassed and ugly. When I cried during class because my levels were off and people stared and whispered about me I would be even more sad.
Now? Well, now I look at everything differently. I don’t know when I became so empowered but it definitely didn’t happen over night. Now when my dad tells me I should put tanner over my discolored skin I tell him I am proud of it, which I am. It’s something different about me and I refuse to feel bad about something that I think makes me beautiful in a unique way. When people stare at my scar (since I no longer have a bulge thanks to the thyroidectomy) I am proud and flaunt it, in fact I try to wear shirts that showcase my scar because it shows that I will never let Graves Disease overcome me, not anymore. When people make fun of my weight (one boy once told me to join Jenny Craig) I remind myself that through the self defense class I take I can take them down with a flick of my wrist and am physically and mentally stronger than them.
It’s hard to focus in school some times and I do miss a lot because when I’m sick I’m in bed for a week but I am very stubborn and refuse to let Graves effect my life more than necessary.
Another thing that shocked me was how easily people would say that I am faking being sick or faking my disease because they can’t see it. You can’t see Graves Disease unless you have a bulge and or a scar, it’s what doctors call a silent disease. I try to teach my friends about Graves and have a tight knit group of friends who understand, everyone else doesn’t matter.
My mom and I went to a Graves Disease convention last October and both our minds were blown. She finally realized the internal demons I have been battling and decided to let me make the decision that I had wanted since I was ten: thyroidectomy.
I won’t lie, it was a painful recovery for me and felt like it took forever but that was a personal experience, everyone’s recovery is different. I love my scar and flaunt it whenever I can. I talk more openly about my feelings with my mom about my disease after confronting her about downplaying my disease. The thyroidectomy was the best option for me personally and I would do it again in a second even though I was only fifteen.
Does it still sting when people make fun of me because of side effects of Graves Disease? Yes.
Does it still sting when the needle pierces my skin? Yes.
Does it still sting when adults and doctors can’t grasp the emotional pain I’m in? Yes.
Does it still sting when I get inside my own head and wallow in self pity? Yes.
But the difference now is that I am one stubborn girl, I will let myself cry and scream and throw pillows at walls but I will not let Graves beat me. I won’t let Graves hold power over me because I’m sick and tired of feeling helpless to a disease.
Something I cannot stress enough is the rage I felt towards my parents as they made all the medical treatment decisions without me. I know logically that I legally can’t make those decisions but having a say was important and I didn’t get that until recently last year. I felt like everyone (my doctors, my parents, and Graves) was taking away what little control I had left and I still harbor some unresolved anger over that till this day.

So, I’m done ranting and I hope sharing part of my story helps both you and your son. If he needs anyone to talk to I’m just an email away. I know what it’s like to go through Graves and I can remember how desperate I was for another teenager/child to communicate with who had Graves. Hope this helps, I hope this doesn’t overwhelm you or overstep any boundaries.

Sincerely,
Megan

[Kimberly]

#1181622

Thanks so much, Megan! This is wonderful info…would *love* to turn your first two posts into a bulletin specifically for teens! Contact me if you are interested!

[Author]

Posts