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When Were You Diagnosed With Thyroid Disease or Thyroid Cancer, And

Post Published: 23 August 2010
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Category: thyroid blog, thyroid patient discussions
This post currently has 12 responses. Leave a comment

Today we are dishing disease a little bit differently. We want to share resources, get to know each other’s diseases better and how each has managed/muddled/thrived through it. Every time we write, we learn more about our diseases and each other.

Here are a few questions to get us started:

  1. When Were You Diagnosed With Thyroid Disease or Thyroid Cancer?
  2. How are you managing your diagnoses?
  3. Do you understand your disease
  4. Do you have thyroid cancer, what type of thyroid cancer?
  5. Do you have a thyroid autoimmune disease, or a thyroid condition?
  6. What research have you done about your disease that you can share with others?
  7. What would you tell newly diagnosed thyroid patients

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12 Responses to “When Were You Diagnosed With Thyroid Disease or Thyroid Cancer, And”

  1. jillautumn says:

    I was diagnosed officially in May. Im not quite sure if I am mentally “managing” my diagnosis yet because of all the other health complications that have been thrown into my mix. I have changed my diet, because of other health concerns, but discovered that a gluten free diet is also recommended for thyroid disease as well. Bonus! I don’t fully understand all there is to my diseases yet, but I am learning something new every day. I have two autoimmune thyroid diseases. I was diagnosed both Graves and Hashimotos. I have talked to GI specialists as well as have done online research and have found some interesting information. I was diagnosed with Celiac disease, an autoimmune disorder of the digestive system, prior to finding out I had any Thyroid issues at all. What I have been told, and from what I have read, eating a normal diet into adulthood when you have undiagnosed Celiac disease can trigger many autoimmune disorders, including Thyroid autoimmune diease – Graves and/or daughter was also diagnosed with Celiacs disease after becoming very ill and being hospitalized last October. This was great information to find because her GI was able to get base thyroid numbers on her. That way if there is any change she can be treated right awayJust some info I found interesting and so I thought I would pass it on.

    • jillautumn says:

      Forgot to say that I would encourage newly diagnosed Thyroid patients to stand up to their doctors, surround themselves with supportive friends and family, and READ READ READ!

      • Donna says:

        1. Diagnosed with follicular thyroid cancer September 2006.
        2. Cancer is gone, annual follow up necessary. Living on the mercy of a little pill which color keeps changing. Follicular has a higher recurrence but I don’t live in fear. I live.
        3. I do now but did not realize that I had thyroid disease after cancer and swung hypo to hyper for years without fully realizing it. Am currently hyper, am on second dosage change of synthroid and will probably need another reduction in 3 weeks to bring my levels where they need to be which is a ptocess that requires patience. May need another one after that too.
        4. Not right now, see above
        5.. I am thyroidless which means that I have thyoid disease. Yeah, I said it: I have thyroid disease. I’m a cancer survivor with thyroid disease. This is important for others to get. It is so easy to be happy you are cancer free that you ignore the next phase.
        6. I have read and read and read some more but I learned the most from the DT community who graciously put it out there and share the good, the bad and the ugly fearlessly. I adore each and everyone of them.
        7. Take the time to learn about thyroid disease(s) and cancers but don’t overwhelm yourself, Come here and ask questions and get the real scoop. Most importantly, listen to your body and don’t assume symptoms you are having have nothing to do with your thyroid disease because they may. That was my biggest mistake. I wasted years chasing good health assuming it was other stuff and looking back I know now my levels were out of whack and I was swinging hypo to hyper. Please don’t do that. Get your levels checked often and if they are in range and you still feel crappy make certain that you get a full panel of bloodwork. Advocate for yourself and find a partner in your health, a doctor that is willing to let you spew out your knowledge and admire you for it. Don’t sit back and accept mediocre care, you deserve better. Eat well, live well and reach out for support from those of us who have traveled in your shoes.

      • Donna says:

        Just wanted to say you are awesome honey :)x

        • Donna says:

          Color me cluelesss, the above comment was for Jill, lol!

        • jillautumn says:

          Thanks so much Donna. You are as well. I admire your strength. I can sympathize with “swinging both ways” LOL. I have to laugh about it. Humor helps. I’ve been experiencing this for years but just recently discovered what it was. Over the past few months I have been introduced to the “hurry up and wait” routine. Its hard. I’m still learning patience. Thanks for posting. I can relate.

          Jill

  2. Justi says:

    1. When Were You Diagnosed With Thyroid Disease or Thyroid Cancer? Nov. 23rd 2009

    2. How are you managing your diagnoses?
    I did RAI 131 100 Mci, then a full body scan. This is followed by my endro, and her constant watch over my TSH, and tg levels, while I take 175 of synthroid daily.

    3. Do you understand your disease?
    Very much so, I have not learned it all, but I am constantly researching, and learning more.

    4. Do you have thyroid cancer, what type of thyroid cancer? Papillary Follicular thyroid cancer on the isthmus of my thyroid.

    5. Do you have a thyroid autoimmune disease, or a thyroid condition?
    I was diagnosed with PCOS, and Hashimotos Sept. 2009.

    6. What research have you done about your disease that you can share with others?
    I spend about 30 hours a month reading, and researching my disease. It fascinates me each time a new doctor asks, did you live near a nuclear power plant growing up? Any x-rays on your face as a child?

    7. What would you tell newly diagnosed thyroid patients.
    Educate yourself! Do NOT rely on doctors for your answers. Join support groups, go to the library, befriend doctors, read! Be vigilant in your research of not just your disease, but the doctors you choose to help you on your path of better health. Do not let this disease define you, rather help be someone who helps change the very definition of this disease!

    • jillautumn says:

      Absolutely Justi. My doctors have asked some ridiculous questions also. I have had to remind myself that they are, after all, just “practicing” medicine. 🙂

  3. Scarlett says:

    Here you go, ya’ll!

    1. When Were You Diagnosed With Thyroid Disease or Thyroid Cancer?

    I was diagnosed with Thyroid Cancer in 2003 at the age of 22.

    2. How are you managing your diagnoses?

    Total thyroid-ectemy, RAI treatments (twice), daily synthroid, yearly scans.

    3. Do you understand your disease

    Yes, I think so.

    4. Do you have thyroid cancer, what type of thyroid cancer?

    YEPPERS! Papillary carcinoma.

    5. Do you have a thyroid autoimmune disease, or a thyroid condition?
    No more thyroid…so…no!

    6. What research have you done about your disease that you can share with others?

    MOST IMPORTANT RESEARCH: Vodka has NO Iodine!!!

    7. What would you tell newly diagnosed thyroid patients.

    Take someone with you to the Dr. because all you’re going to hear are the bad things. The other person can listen more objectively.

    ALSO – keep hard copies of ALL your medical records and tests. Its really useful to have them later.

  4. Jen says:

    1. I was diagnosed with a thyroid condition in 2003 and thyroid cancer this spring.
    2. I am not really managing my disease since my surgery other than taking my meds everyday.
    3. I have tried to understand everything, and my husband has spent a lot of time researching my diagnosis and treatment. I have tried to be very proactive when it comes to doctors.
    4. I was diagnosed with papillary cancer on both halves of my thyroid
    5. I was diagnosed with Hashimoto’s two years ago
    6. Watch what you eat, certain foods just make your condition worse
    7. Make sure you know as much as you can about your condition, fight for yourself when it comes to doctors, and if you can take a friend or loved one in to doctors’ appts to help act as an advocate and a second set of ears for you.

  5. Becca says:

    I was diagnosed with papillary at about 9:30am on my 32nd birthday. There’s no good time to get that news. But my birthday is now forever THAT day, too. Also, I don’t think a diagnosis like that should be given over the phone…

    I guess I’d echo what others have said and tell the newly diagnosed to educate themselves. I’d also refer them to support groups where they could share their feelings and get comfort from the feeling they’re not alone. I heard a lot of talk about how I had the good cancer, what an insignificant breeze my treatment would be, etc. That sort of thing didn’t help at all, and only made me feel more alienated from the world, and more scared (because not at all comforted). It also made me feel like I had no right to be so terrified and devastated. After all, I had the “one you’d choose if you had to choose a cancer.” ?????!!!

    • Jen says:

      I am so sorry you had to get that news on your birthday. I agree, there should be a rule that doctors are not allowed to give you that kind of news over the phone, I got it the same way sitting at my desk in my office.

      We all need to remember that unless someone has been through what we have they have no clue what to say to make us and themselves feel comforted. We need to take comfort in the love and support of those closest to us and that going through what we have been put through will make us stronger and more compassionate to others. We are all entitled to our sincere feelings of fear and grief (let’s face it our lives have drastically changed, even if others can’t see it).

      I could not find a support group in my area, but websites like DT have been a huge help to me. I hope you find the strength to appreciate every birthday you have, it will eventually become a day to celebrate, not mourn, and I will send you what strength I have to spare so that can happen sooner, rather than later.

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