Diagnosed With Gd At Age 10 - Personal Stories - Living with Graves Disease

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Diagnosed With Gd At Age 10

childhood graves disease

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#1 julieann

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Posted 03 October 2012 - 05:28 PM

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Hello!

I really hope that you are still reading the responses to your post. It has taken me since I was diagnosed, at age ten, to join this forum. I am now 21. When I was first diagnosed with Graves disease, I was in critical condition and for several months after my diagnosis I could not participate in normal childhood activities. I missed several weeks of school and stayed on the couch all day because that was all I could do. The only time I was allowed to get up was when I had to use the bathroom. I began my treatment for Graves Disease through use of medication. When I was 13 years old, I went into remission! Although this did not last long, I can honestly say those few months I was in remission were truly a blessing! I released and began my medication again. Although I was truly saddened by this all I wanted from the day I got diagnosed was to be a normal kid again. I eventually had my thyroid removed when I was 16 years old. I now have hypothyroidism. I feel as though this option was best for me because I was at risk for thyroid cancer. Remission is a wonderful gift. One thing that made a huge difference in my diagnosis and treatment was my endocrinologist, Dr. Stephen Duck. Obviously since I am now 21 I need to go to an adult endocrinologist; however I am having a very hard time accepting this change. Dr. Duck saved my life. I could have died the day I got diagnosed. It has been very hard for me to transition into seeing a new doctor. And even now I get upset and teary eyed just thinking about the change I will have to make. I do not know much about how my parents reacted to the news of my diagnosis but I will say that your strength is everything to a child who has graves disease. They do not understand what is going on fully and it is scary! I will never forget the day I was diagnosed. Although my thyroid was removed I still have problems because of my graves disease. Childhood graves disease is not fully understood and research is limited. I have tried researching but I become saddened by certain information; I find it easier to take one day at a time. Each day is a blessing in my life and I am aware that graves disease is going to present obstacles in my life but I have the strength to overcome them and I want you to know that Graves disease has made me who I am today! It has given me my strength and courage to stand up and say yes I am different and I have Graves disease but I can achieve so much. I am currently working on getting my bachelors in science for psychology and I will hopefully be going to graduate school in the spring of 2014 for occupational therapy! Graves disease is a part of me but it does not define me.

Since I was diagnosed at such a young age, it has been so hard for me to connect with others with Graves disease. I have always wanted to talk to someone who understands, in some sense, my situation. If anyone knows of someone who could talk to me or if anyone was diagnosed at a young age, please do not hesitate to chat with me or reply to this. It would make me feel as though I am not a mutant. When I was first diagnosed, I was bullied and children who were my friends stopped talking to me because they thought I was contagious. For the most part, I was bullied all through school because I had graves disease. People would make fun of my eyes and other features like my scar after my surgery. One girl actually joked with me, asking if I tried to commit suicide. I would really appreciate just knowing that I am not an outcast because of my disease.I need to know that there are people who understand what it is like.

Julie


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#2 chelsea93

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Posted 02 November 2012 - 04:18 PM

Hi julieann! I was diagnosed with Graves disease at age 13. I know it isn't as young as you were, but it still was horrible. I was so tired, temperature changes effected my majorly, I was on beta blockers for my heart rate, I shook constantly--the "works", if you will. I had my thyroid destroyed with radioactive iodine when I was 15 years old, and I'm now hypothyroid. It's still hard, though, and am still effected by my Graves... My eyes never buldged, but I still got bullied--my goiter was pretty large, and I was skinny as it was, but I lost a lot of weight. People called me anorexic from this and I still have problems today. I'll never forget my ex was with me for a long time through this, when one day, I said I couldn't do something because of Graves and the side effect would cause me problems, and they yelled out, "I'm so sick of this disease and I'm not going to deal with it anymore! You're on your own!" I lost all my friends, but luckily, my family helped me and now my boyfriend understands/helps me as well. I know how it can affect your life--it'll never go away--but I'm 19 now and am still standing strong! I understand, I really do.

I hope to hear from you and talk about this with someone close to my own age, and good luck with everything!

--chelsea93

#3 Megan

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Posted 23 November 2012 - 11:03 PM

Hi Julieann, I can relate to you! I was diagnosed with Graves' at 14 years old . I know I was a little older than you were. I too was in a very hyperthyroid state at my diagnoses, I was rushed to the emergency room with a heart rate of 150. I was very lucky that I finally caught it that day otherwise I could have died as well. I could not participate in any kind of physical activities for a good 6 months after my diagnosis. The summer after I was diagnosed I literally just laid around my house and became very depressed. I totally understand when you feel like you can't connect with others. I had radioactive iodine at 15 to destroy my thyroid gland. I am 18 now and just starting to try to connect with people around my age who suffer from this. I hope you are doing well and wish you luck finding a new endo, I feel you it was hard leaving my pediatric endocrinologist my new thyroid doc just isn't my cup of tea :rolleyes: I would love to talk to you :)

#4 cstewart300175

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Posted 03 March 2013 - 09:01 PM

Hi girls
I have just joined this tonight really looking for some information. My 16 yr old daughter has just been diagnosed with Graves Disease 4 days ago. She is currently in hospital as she was taken in because her resting heart rate was 160-175 which was very scary. She has been put on 2 beta blockers a day and 2 carbimazole a day. The encrinologist has said she will be on these for about a year. I think she has had this for quite a while as we have been running back and forward to the gp about various conditions. She has all the symptoms listed and has had for a while but they have got worse over the last 6 months. Tremors,hair loss,raised heart rate,sweating,heat intolerance,migraines,nose bleeds,muscle weakness and lastly the thyroid lump. I would be very appreciative to anyone who could tell me their story and if their symptoms subside any and what treatment we should expect in the future as there seems to be very little info on teenagers with graves. Oh and she has also had a blood test for coeliacs disease but we are waiting on the results of that.
Many Thanks
Anxious mum

#5 cd3764

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Posted 07 March 2013 - 06:50 AM

Welcome cstewart!

 

Sorry for the reason you're here but, glad you found us.

 

In situations such as yours and your daughter's, I recommend you consult thyroid expert Elaine Moore.

 

Elaine is the author of "Graves' Disease - A Practical Guide".

 

She maintains a very informative website and, of great use is her Q&A Forum wherein registered users

can submit questions and she answers directly.

 

http://elaine-moore....36/Default.aspx

 

For general questions related to Graves', I invite you to post in our General Discussion area.

 

Best of luck to both of you!



#6 Francis

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Posted 07 July 2013 - 10:19 PM

Hello!

I have a very similar story to yours julieann! I was diagnosed at 10 and I am 22 now. I had radio ablation and graves opthamology.

It certainly doesn't stop though, 12 years later and I am still learning and figuring out things about living with this. It is crazy how little information there is about young people developing Graves'!

 

hope all is well!







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