My Graves' Story (Childhood-Present) - Personal Stories - Living with Graves Disease

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My Graves' Story (Childhood-Present)


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#1 vagabondsatyr

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Posted 05 October 2013 - 05:49 AM

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Hey all,

 

First off, I'm so glad I found this site. I apologize for the content in this post. It feels ridiculously good to relate to others with GD. :(

Back in 1992, my grandma was misdiagnosed with dementia and passed away from GD at the age of 52. I was diagnosed in 2003 with Graves' at age 13, but have been misdiagnosed for most of my childhood (I think we had the same family doctor). First, I had febrile seizures (may or may not be caused by GD). Then starting in the 3rd or 4th grade, I started to get temperature sensitivity. I couldn't keep up with my class in Phy Ed, I couldn't concentrate very well on anything. I felt sick a lot. I didn't get along with most of my classmates because they thought I was weird. I never wore jeans and hated wearing pants because it was too hot. My eyes were bulgy so people would always give me crap about it. Littler kids would call it scary. I tried to make it a prank to scare them with my eyes, but deep down inside it hurt.

 

My family lived in Minnesota. Winter was hell, regarding the heaters in the house and the car. When I was little I would cover up the heater in my room with anything I could find and sneak into the cellar to get a frozen liter bottle of water and stick it under my pillow. My parents kept getting frustrated and eventually my mom took me to the doctor. The family doctor prescribed ZOLOFT to me. 100mg (he thought it was a mood disorder). Then, my mom took me in to see a different doctor and almost immediately he recognized my symptoms, got my blood test, and diagnosed me with GD. A month or two later, they had my thyroid removed via radioactive iodine.

 

Since the treatment, I experienced 8 years of constant downward spirals. My personality drastically changed and I lost a lot of friendships due to it (docs think I may have had schizophrenia when I was hyper), I was hospitalized for suicidal behavior at least four times, most weeks I'd feel sick to my stomach, my middle/high schools literally gave up on me and put me in special education--doing virtually nothing. A lot of the time I'd doodle, expressing myself (eventually I got decent enough at drawing that I got requests a lot). On occasion, I'd read Popular Science and Popular Mechanics magazines, which made me curious about the sciences. However, I wasn't smart like everyone else in my class. I didn't know anything and was considered stupid. I was in special ed. Everyone thought I wouldn't get anywhere with my life. Fed up with the public school, my parents transferred me to a charter school--which regained my hope for getting an education. Managed to graduate.

 

Years passed and I moved out of the house (my parents were getting divorced and I didn't want to deal with it--blamed myself for a lot of it because my dad had three jobs at one point and I thought it was related to my treatments... worst part was that I was stuck in the middle of my parents, really sucked). Moved in with some friends and met my husband there. I had a job on a tour boat on Lake Superior, but struggled because I'd feel ill. I still had a lot of mental baggage as well, so I came off as strange to my coworkers. One of them got so frustrated at me that he'd swear at me all the time. I couldn't grasp things as easily as others... learning the lines and such. I loved doing the bow lines, especially during rocky weather. I loved boats. Specifically the engines. I considered joining the Coast Guard, but was denied because of GD. It depressed me, because GD always seemed to stop me from doing anything. I knew that I wanted to do something ship or technology related, it was just a matter of getting there...

 

I figure it was around that time that I was starting to learn essential things that I could've learned in my middle/high school years. I learned to take care of myself, learned to make a resume, learned how living in a city worked. I had no responsibility when it came to money, however. I found it hard managing my income because my math skills weren't that great. My husband (whom I married last month :) ) said that I had potential academically and that he believed in me. He was finishing up graduating with three degrees (Psychology, Biology, and Business) and wanted to go to grad school for neuroscience. He thought that I should try school again.

 

After a year of dating, getting to know his family, and living in the same room... we decided to move to Washington so that he could go to grad school there. He and his mom (who was a teacher) inspired me to go back to school. His mom was a treasure to me. She was a very good cook, but struggled with Parkinsons'. Despite her disabilities, she taught me how to make pie (I've managed to make some good pies because of her!). Last year, she passed away of heart complications and Parkinsons. It was really difficult. That year alone, my husband lost four family members. It was very heartbreaking for him and he took a lot of his stress out on me.

 

He would constantly get frustrated with me, my low libido (my sex drive is almost non existent), practically calling me stupid over dumb things and treated me with contempt. Every single time he'd say those kinds of things, it was like he was stabbing at an old wound. I knew that he wasn't happy with me and it hurt me so much. I'd start to distance myself, but that only made things worse. I still wonder if he really is happy with me... he gives me crap about my weight a lot, but no matter how much I exercise, I feel like I can't put it off. Stress + hypothyroid = fat just waiting to collect in my stomach. Needless to say with my bulgy eyes, dysfunctional relationship and weight (170lbs), my self esteem isn't very good...

 

Despite this, I pushed on through school (just finished my first year of college--made honors!!). I am currently involved with the honor society and a Women in Science and Engineering group. They empower me to become a stronger woman. I decided to make my goal degree Mechanical, Aerospace, or Electrical Engineering with a minor in Oceanography [a man I volunteered with that works at my husband's school said I should help work with ROVs (remotely operated vehicles) in the school's program--I was pretty pleased with that comment!] (ultimate goal is to work for Lockheed Martin or SpaceX regarding electrical propulsion in air/spacecraft; very difficult regarding my educational background... still catching up to high schoolers 5 years after graduating high school). Sometimes I feel down about myself, but I have to keep myself busy to negate those feelings. The funny thing is, my parents and a lot of my relatives weren't expecting me to go to college, or even make honors!! Pretty proud of myself for that. :)

 

In the end, regarding my career and education, I want to be an inspiration to others like me that have gone through illness and have been failed by the public school system. I want to show them that nothing's impossible, and being an underdog is really rewarding!

 

 

Thanks for anyone who read the whole spiel. It sure helps to compare and relate to others... GD can get super difficult to deal with sometimes. :(

 




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#2 Misty

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Posted 05 October 2013 - 11:06 AM

Hi and welcome! What a great screen name.

 

Thank you for sharing your story, and congratulations on overcoming so many challenges (some of which, such as the docs' failure to properly diagnose you, were so unnecessary). You are a great example of the concept that what doesn't kill us makes us stronger.

 

If you have recent FT4 and FT3 labs to share, we can advise on whether your thyroid replacement is optimal--it could be that your levels aren't at your personal setpoint (you can post your labs in the main forum). In particular, after rai many people benefit from taking some T3 as well as the usual T4. Many of us with Graves' are also low in vitamin D3.

 

I would also recommend the site of our medical expert, Elaine-Moore.com. Elaine had rai for Graves' herself, several decades ago. She has written about Graves' and autoimmunity and is up-to-date on every aspect of the research. She also advises people all over the globe, so she knows what actually works. She answers questions on her site and used to pop over here. She is personally responsible for helping many of us achieve remission or better health after rai.

 

Best wishes,

Yvonne, remission since 2005



#3 vagabondsatyr

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Posted 07 October 2013 - 10:09 PM

Hey Yvonne, :)

 

I'm hoping to get my levels checked again soon, but I have to wait for my hubby's insurance to kick in (got married two months ago). Feeling a little hypo at the moment.

I take Vitamin D3 because I have the deficiency... really helps with mood! 

Thanks for the recommendation of Elaine's website! :)

 

Have a good day!

-Noelle



#4 Misty

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Posted 08 October 2013 - 05:27 AM

Hi Noelle,

 

After I posted I saw your other post--sounds like you have a good handle on your labs and supplements.

 

You should enjoy Elaine's website as she has researched many aspects of Graves' and autoimmunity/

 

And do hang around here as well!

Yvonne







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