[Megan]

in reply to: Worried thyroid removal will ruin my singing #1181587

Jason,

I was afraid of losing my singing voice too when I got my thyroid removed. After speaking with my surgeon he told me that there was little to no risk in my case because he would isolate the vocal chords first to make sure no damage was done to them, in his words “only a sloppy surgeon damages the vocals during a thyroidectomy”. Even though I trusted him, I was still nervous.

Well I had the surgery this past June and I could not be happier with the results. My singing voice is the same as it used to be, the only difference I’ve experienced is it is harder to sustain notes longer, and it is harder to sustain high notes in my range (which lowered after the surgery but only by a small margin). The affects on my voice after the surgery may have had nothing to do with the surgery, it may have all been a coincidence but those were the things that I noticed. I’m lucky enough to have a vocal lesson program in my high school so I as able to get right back to lessons with my coach of three years and after working with him for only one month I’m able to sustain notes longer (not as long as before the surgery but we’re almost there!) and I have seriously improved my range.

I completely understand your hesitation when it comes to the thyroidectomy because I went through some of the same fears, especially with my voice. In my case with my thyroid being such a nuisance and such a prime/persistent issue in my life I was willing to take risks with my voice in order to have my thyroid removed.

I hope what I’ve shared helps! Good luck.
–Megan

[Megan]

in reply to: RAI vs Surgery for adolescent with Graves? #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

[Megan]

in reply to: Thyroidectomy scheduled #1179967

Hi everyone! Maybe my experience may help?
I am sixteen years old now and I was diagnosed with Graves Disease when I was five years old. Needless to say my childhood (from what I can remember) was painful and confusing. I didn’t fully grasp what my disease meant until I was nine years old. Since then I had done all the research I could and was terrified. I felt as if I was in this alone because my parents tried to downplay Graves as to not alarm me and I was the only one who wanted to get the thyroidectomy. I went through constant ups and downs on the medications but with no one agreeing on the thyroidectomy plan of action like I was, I had no choice but to stick it out until I was eighteen.
That all changed when I turned fifteen. My mom and I attended our first Graves convention and she was floored by all the suffering I had experienced in silence and all that I would experience later in life. By no means is this disease unbearable, although sometimes when I wallow in self pity like every teenager does it can feel that way. My mom and I FINALLY agreed that surgery was personally the best option for my course of treatment. Everyone is different and responds differently to different treatments.
Just before I turned 16, on June 26th 2013 I had my thyroid completely removed. It was a hard recovery, I won’t lie I was in a lot of pain, but there was no part of me that regretted going through with the surgery.
I remember when I was a kid I got made fun of for having vitiligo, having a bulge in my neck, for crying for no reason, for being too hyper, for gaining weight out of nowhere, and when I was young it bothered me. Now? I’m stronger. It still stings when people criticize me about Graves side effects but I am secure enough in myself to let it roll off my shoulders. It was tough and probably always will be but something Graves gave me that is a great attribute is it gave me unwavering strength, empathy, and bravery.
One thing I struggle with now that some other teens/children with Graves may struggle with as well is that I don’t know who I am without this disease. Adults sometimes reminisce about how they changed when they developed Graves but I don’t know how I changed because I developed it before I even really developed myself. I have always had Graves and I always will, it is a part of who I am. Another thing that I have come to terms with–yet still internally battle over–is that Graves does not identify me. It may be in the fine print at the bottom of my identity but it is not the header or the paragraphs of my attributes below it. It is at the bottom for no one to see but those who I chose to tell and it does not define who I am. There’s hope, I’m living proof of that. I do think teens/children with Graves need a stronger support system than what is available now so if anyone ever needs to talk I’m all ears.
I hope this helps and if now, thank’s for sticking it out and reading till the end.
~~Megan.

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