Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • msgraves
    Participant
    Post count: 15

    Hello there,

    I’ve been reading your forum for the better part of a year now. I’m a 20-something who was diagnosed with Hyperthyroidism/Graves’ Disease last January. In hindsight, I was able to see that I had been experiencing symptoms since my late teens.

    I’ve been on methimazole of varying doses since February of 2013. Tomorrow I’ll be going to my endo for another appointment and I know he will be taking me off my medication, as we discussed it last time. If my thyroid doesn’t begin functioning again correctly (I have a strong feeling it won’t) my endo seems to be leaning towards RAI, rather than TT.

    Unfortunately, my Graves’ has hit me hardest emotionally, etc. I find the physical symptoms easier to deal with. Since thyroid disease is something that people are largely silent about, I haven’t really spoken to anyone with Graves’. I’m hoping that you all can tell me there is hope.

    Best,

    Ms. Graves

    Kimberly
    Keymaster
    Post count: 4294

    Hello and welcome! The emotional issues that come with Graves’ are just as real as the physical ones, even though most of the general public doesn’t understand this. In fact, the GDATF participated in a landmark survey on the emotional/behavioral aspects of Graves’ almost two decades ago – and now we are working with the research team to help update the results. The original survey results formed the basis of one of the GDATF’s most popular bulletins, “What’s Wrong With Me? I’m Not Myself Anymore”.

    (Note on links: if you click directly on the following link, 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).

    Bulletin:
    http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

    Survey Info:
    http://gdatf.org/news/new-survey-on-graves-disease-please-participate/

    One question for your doc would be whether you have recently had antibody testing done (TSI, TRAb). The American Association of Clinical Endocrinologists and American Thyroid Association recommend antibody testing prior to withdrawal of anti-thyroid drugs. The reason is that if antibodies are still raging, a relapse of hyperthyroidism is much higher.

    This board is a wonderful place to get information and support…please continue to check in to let us know how you are doing!

    npatterson
    Moderator
    Post count: 398

    It is good to hear from you. Welcome to our little corner of the world.

    In a word: Yes, it gets better

    In a sentence: It may take time, and always longer than we wish, because “already” is when we would have liked to feel better!

    In a paragraph: if you have to decide on definitive treatment, try to do your research with reliable resources. There is a good bulletin on comparing the treatments (go to the Home Page). There are even good articles on surgery (by Dr. Cord Sturgeon). I have a packet of articles on the emotional manifestations of Graves’, because that is the original reason for the Foundation’s creations. Send me four stamps, and your name, address, etc. and I will mail them immediately. My address: 84 Streamside Drive, Hendersonville, NC 28791. I will write more later. My eyes are giving me a hard time right now, and I just can’t see well enough to type lots of information.

    Best news: You are NOT going crazy–even if it feels like it.

    Take care,

    Nancy

    msgraves
    Participant
    Post count: 15

    Hi Nancy,

    I just finished addressing the envelope, so you should be receiving my address and stamps this week. I’m very interested in seeing the articles you mentioned. It’s always comforting to have further confirmation that I’m not going crazy and that these symptoms have (sadly) been experienced by others.

    Best,

    Ms. Graves

    gatorgirly
    Participant
    Post count: 326

    I too was diagnosed in my early 20s – as if that part of life isn’t hard enough. I felt like I was completely alone, living 1,000 miles from friends and family working my first full-time job (a job I hated) after grad school, and my then-boyfriend was six hours across state in law school. I knew two people with Graves’ but they were both women in their 50’s. I couldn’t connect with anyone my own age, or even close it. This site was helpful but it would’ve been nice to have someone in my area. Even now when I attend Boston support group meetings, I’m the youngest person in the room by at least two decades.

    Like you, physically I was able to handle the symptoms. Being a lifelong athlete was a blessing and a curse. A blessing because I had a high tolerance for pain/sickness/injury and a “tough it out” attitude but a curse because I was VERY hyper and the meds weren’t working, and my heart gave me problems so I had to completely stop all workouts for about six months. That took a huge emotional toll, as did the eventual weight gain from steroids (for TED) and lack of exercise, the way my eyes changed, and just the general lousy response from most people: “But you don’t LOOK sick” when I had to bow out of social commitments.

    It DOES get easier and I bet once you decide on a treatment (TT vs RAI since the meds aren’t working for you either), you will start down that road to feeling better emotionally, which is important to feeling better physically.

    msgraves
    Participant
    Post count: 15

    Thank you to all who have answered my original post. While it makes me sad to know that anyone else has had to experience all the unpleasantness that goes along with Graves’, it’s comforting to know that others have gotten through it.

    I’m not a very patient person (probably the Graves’ on top of my normal personality) so it’s tough to have to wait it out like this. This is my fourth day without any methimazole and I can’t say that I’ve really felt any better or worse. I did have a “good day” on Friday, where I felt really connected and healthy. I don’t have another appointment for three months, which is tough. It’s just one day at a time.

    In the meantime, I’d love to hear from anyone else who has encouraging words or has reached the end of the awful roller coaster that is Graves’.

    Best,

    Ms. Graves

Viewing 6 posts - 1 through 6 (of 6 total)
  • You must be logged in to reply to this topic.