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Oh, You Think My Thyroid Disease Is Fake? FABULOUS

Post Published: 06 January 2011
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Category: Dear Thyroid Letters, Thyroid Awareness Month
This post currently has 42 responses. Leave a comment

Dear People with “Normal” Thyroids:

January is “Thyroid Awareness Month”. Do you know where your thyroid is?

I do, but last January I did not. Your thyroid is a lovely butterfly shaped gland in your neck that pretty much runs your entire body.  It sure does. No one ever told you that?  You thought your brain and heart were the powers that be?  Well they are f’d without your thyroid, or with a thyroid that is not functioning correctly.

Last spring, I found out what a thyroid is and I found out fast.   I became hyperthyroid pretty suddenly. All symptoms hit at once, and they hit hard.  Being a busy, overworked, stressed Mom, I attributed the racing pounding heart, sweating buckets, shaking, severe anxiety, insomnia, overheating, rage/anger, loss of period, severe and rapid weight loss, increased appetite; and icky bowel changes to that … Stress.

But, damn.

I have had one or the other of each symptom [except the pounding heart] before here and there.   Calming down, breathing, meditating or resting had always helped.  Not this time.  Nothing like lying in bed on a -30 degree below zero night in New England with nothing but a tank top and shorts, sweating buckets and listening to your heart beat in your ears….. ALL NIGHT.  Sweet.

My thyroid was working overtime running; over running all of my systems because I have Graves Disease. It appears I have had it for a while and the symptoms have been, as I said, here and there.   But last St Patrick’s Day, they all came calling and would not leave [no, it wasn’t green beer].  My actual diagnosis of Graves didn’t come until a few months later, after blood tests, scans, uptakes, more blood tests.

Luckily, during some of that time, I found www.dearthyroid.org and I began my own research and reading.   When my endo said “You have two things, Graves Disease and thyroid nodules”, I knew that was what she was going to say.  I was prepared for the words, but not the disease, and definitely not prepared for the reaction of the “normal” people.

So, I am writing to the world of people who don’t know what a thyroid is. I hope you never ever find out the hard way like I did.  While I am still learning everyday about my thyroid, I suggest you read about yours, too.  Just know where it is; know what to do to make it stay healthy.

If you think this is a waste of time, then read through some of the letters here.  Read about the pain, stress and struggles that each person here has been through.   Read about people who have had the whole thing removed due to cancer, and now struggle to take medication to replace the million things that your thyroid does to run your whole body.   Read the letters about people who have had RAI [Radioactive Iodine Treatment] and the trouble they have keeping their levels correct.  Some struggle for years to get things somewhere near “normal”.

Years of playing games with pills and doctors that don’t listen or hear.

I am not the best advocate.  Being that I am a bit backward and very socially awkward, it isn’t what I would choose.  I have a hard time going in a grocery store when there are more than 10 cars in the yard, I just don’t do well with people and crowds.   But this thing has gotten under my skin [ha], and I speak up. Mostly I get angry and the spoken word doesn’t get my point across.   So I need help, I need others to understand thyroid issues.   Here are a few things that need to be understood:

1.  Thyroid issues are not fake:  I can speak from personal experience, there is nothing fake about sitting quietly and listening to your heart pound so hard that you look down to see if it is coming out of your chest.  Who in their right mind would fake having a thyroid issue?  No one.   If you have any sort of thyroid disease, you wouldn’t wish it on your worst enemy.   Not fake.

2.  People do not say “I have a thyroid issue” to cover up for gaining weight.   If you think that, fuck you.  Go away and eat dirt.   I lost nearly 30 lbs in as many days, and I was eating like I had a tape worm.

When I only knew my problem was “thyroid related” someone asked me “Did you lose a ton of weight” and I replied, “I have a thyroid issue”.

The immediate response from this person was, “Isn’t that what people say when they get fat”.   Then, I just got flustered and embarrassed.   I sort of hope she says something to me again, because she will have a tirade the likes of which she has never heard.   Fuck.

3.  We, thyroid patients, need help.  We need love, understanding, and support.   Don’t you dare say “Oh that excuse again”.   Just don’t do it.   I personally hate “EXCUSES”.  Hate them, and I am not about to start making excuses about why I didn’t do something or why I spelled my name backwards [random bouts of dyslexia now; awesome].   It just is; now help me fix it.   That’s all, just reach your friggin arm out and help.   Turn your ear in this direction and listen, AND hear what I am saying.   Support is that simple.    Just listen, understand, and believe.

You will?  Thanks a bunch.

Amanda

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42 Responses to “Oh, You Think My Thyroid Disease Is Fake? FABULOUS”

  1. ashton says:

    oh. my. word.

    if you had talked about being hypo instead of hyper, you would have essentially been saying every word i never could.

    wow.

    amazing letter! you had me tearing up when you talked about it not being an excuse (especially concerning weight). love love love it!

    as for your recent diagnosis, i can’t really give any advice about graves or hyperthyroidism, but i’m always here to talk or just listen 🙂

    • Amanda says:

      Ashton,
      I am so glad you liked what I wrote! Thank you for reading and leaving this wonderful comment. I am sorry we all feel the same way, but at least we have each other to lean on.

      Amanda

  2. Amy says:

    Wonderfully written letter! I really get this. I have hashimotos. Two very different thyroid disease but, yet so very similar. It is very real. Why would anyone want to fake it? Why do people think we fake it? Amanda, you really wrote a terrific letter! Take care, Amy

    • Amanda says:

      Amy,

      Thank you so much! I am glad you liked my letter. And I agree, who would have the energy to fake all the things thyroid issues cause? Not me!

      Amanda

  3. Raynelle says:

    Bravo!

    I feel the same way, like people don’t believe me. I had cancer and had my thyroid removed. People, think oh, she’s on meds now so everything back to normal. I AM NOT! I hurt, I am exhausted and tired, I can’t walk up stairs without feeling like I ran a marathon. I just get a roll of the eyes like yeah she’s just looking for attention. Of course I am overweight, so that’s another roll of the eyes when I say I have thyroid issues. I mean do they want me to say hey I have cancer wanna hear the whole story?

    Anyway thanks for saying what we all feel!

    • Amanda says:

      Raynelle,

      Thank you… thank you for getting my point here! That rolling of the eyes things makes me insane, I so agree with you on that. Sometimes I feel like I should have pamphlets to hand out about what I am dealing with.

      Amanda

    • Mitra says:

      The reason why I have come across this thread is because I typed in “Are people with thyroid problems not believed?” I have come across your letter and feel heartened that I am not the only one here. My thyroid cancer was not really taken seriously by my friends, nor did they understand what a thyroid was or why I talk about being tired etc etc. It is very isolating because you feel like people are thinking that you are milking a situation or are not willing to get on with things. Whenever I mention my state, people switch off. I am lucky that my mother understands at least because she has a medical background. I am usually a very empathic person and always have time for others but recently I find that I just feel resentful that I have not been given any understanding myself. I know everyone around me cannot understand why I am still having fits of day time sleeping even after 18 months have past since starting thyroid replacement hormones.

  4. Katie says:

    I liked your letter. Very true and informative up to #2.
    There are many different illnesses within thyroid disease.
    Hashimoto thyroiditis sufferers and Hypothyroid sufferers do gain weight and usually eat very little which actually wreaks more havoc on our whole body. I know because I have had the hyper symptoms as well as the hypo that make up Hashimoto’s over a 16 year period.
    Hashimoto’s thyroiditis gets the worst of both Graves and Hypothyroidism.
    Good luck on your journey :0)
    -Katie

    • Amanda says:

      Katie,
      I wasn’t trying to mis-inform. I know very well that thyroid issues cause weight issues, mine has climbed up like crazy since being on meds to control my Graves. I only meant that it we don’t use it as an excuse either way. It happens, weight is hard to control. The person who made the comment to me thought that people use “thyroid issues” as an excuse to eat a lot and gain weight. I should have made that clearer. Sorry,

      Amanda

      • Katie says:

        Hey Amanda – I figured you knew, but I tend to clarify things for the brand new thyroid sufferer’s that are just reading the letters for the first time….they need to understand that they are one of us…plumpy, skinny, or just right….
        It has been a long time since I have been on here….thanks for getting me back to reading these letters at Dear Thyroid. Have a great day!! Katie

  5. Amanda says:

    Amazing! I couldn’t have said it better! I am on the verge of hyperthyroid, yet still have very real symptoms and I agree with you 100%! People have no idea what it is like to sweat buckets when it is freezing or listen to your heartbeat out of your ear! Keep advocating! You do it so well! ~Amanda

    • Amanda says:

      Thank you so much! Maybe people will have some idea if we all keep shouting about it here!

      Thank you for your support.

      Amanda

  6. Tami says:

    Thank you Amanda.I also have graves disease and have a big problem expressing myself. If I could put my thoughts into words your letter would fit me to a “T”.

    • Amanda says:

      Tami,
      Thank you for reading. I can usually do pretty well typing out my words, but speaking them is another story.

      I am glad you liked my letter.

      Amanda

  7. Bmsol says:

    Thank you thank you thank. So well written-you said exactly what I want to scream all the time. I have Grave’s disease and I have dealt what you have for 5 years until recently when I went hypo for no apparent reason-they saw I have thyroditis and we are waiting to see if it’s acute or if I have both Grave’s disease and Hashimoto’s at the same time. This disease rapes you of your personality, your health and your love of life. I went from extreme Type A personality to type C-. Anyway, I read alot of these letters and just had to respond and tell you THANK YOU for your words… they are like medicine to those of us who know exactly what you are going through.

    • Amanda says:

      You are very welcome and thank you for your wonderful comments. Graves Disease sucks, but I have found that writing about it, and supporting others has helped me feel better. I don’t want to be “normal” if it means not understanding what thyroid disease is all about.

      🙂

      Thank you!
      Amanda

  8. Bmsol says:

    Ok I just sent that before I realized how many typo’s are in there. Sorry- You’ll get what I’m trying to say 🙂
    Must be the Klonopin talking 🙂

  9. Dawn says:

    Right on! I have Graves and I underwent RAI so I can relate to everything you wrote. Excellent article.

  10. Suzanne says:

    Well done, Amanda!

    I am very happy for you – that you wrote it all down and let it out for all the world to read. I had my thyroid removed because of cancer and have been very upset that the assumption is: “everything is fine, now” because it just isn’t true.

    I am very proud of you for speaking up and encourage you to keep going 😀

    Suzanne

    • Amanda says:

      Suzanne,
      Thank you! I get the “but you are being treated, right?” comment. Just because I know what I have and am taking medication doesn’t make it go away. It is incredibly frustrating to feel that total dismissal by the “normal thyroid” world.

      Amanda

  11. Elaine Savard says:

    I had my thyroid gland removed in 1997, had 5 RAI treatments and was told that I was “clean”. After changing oncologist 3 years ago and starting a clean slate with him, it was discovered that I still have cancer cells in a couple lymph nodes. My thyroglobulin antibodies have always been high and I was always told because there were no other markers showing for cancer that it must be just my body. About the same time as this discovery I started a health and wellness product that contains ellagitannins and fucoidan, both known for their effects on cancer cells, and since then my antibodies have gone down over 33%. I invite you to my website fucoidanforhealth.com for more information on thyroid cancer and the importance of proper nutrition.

  12. Monica says:

    Amanda, I love, Love, LOVE your letter! Thank you, it says it all!! I was diagnosed with Grave’s Disease last March and it has been one hell of a ride. I was so scared in the beginning because I had no idea what it even was. Yes, people need to be aware of their thyroid and how it controls their body. I felt as though I was trapped inside a tornado being spun out of control…tremors, muscle weakness, anxiety, feeling hot all the time (I called it the devil inside of me), and yes, the pounding heart beat as your trying to sleep at night, and people telling me there’s something wrong with your eyes…Not Fun At All!! I pray that we thyroid patience will experience remission some day. Best wishes to you and everyone through their journey with thyroid disease!!

    • Amanda says:

      Monica,

      Whats up with this March madness of Graves Disease? I know exactly what you are talking about, “the devil inside” is a very accurate description! Thank you for reading my letter.

      Amanda

  13. Missy says:

    Amanda,

    Thank you! This is perfect. Ohh the eye roll….UGH I just want to reach out and slap someone. I’m a thyroid cancer survivor. And I get SO sick of the “you look fine” comment. Or the “I don’t understand why you’re so tired, your on meds right?” Ohhhhhh dear non thyroid sufferes wake the fuck up! Read up on what the thryoid does, it runs you’re WHOLE body!!! I could keep going, but I wont. Thank you again Amanda, because you took the words right out of my mouth!

    • Amanda says:

      Missy,

      Thank YOU for reading my letter. I agree… wake the fuck up… what a great way to put it. Those “normals” out there don’t think they have to know about thyroid health. … I just hope they don’t find out like we did!

      Amanda

  14. Amanda, this is BRILLIANT! Thank you for writing it; we need letters like this so more people will understand what we deal with day in and day out. Thank you for being such a fabulous advocate. You rock!

    xoxo,
    Joanna

    • Amanda says:

      Joanna!

      Thank YOU! I don’t know about brilliant, but it sure felt right to put those words out there for others. Thank you for all you do!

      Amanda

  15. Linny says:

    Dear dear Amanda…..I want to tell you how wonderful this message is. I wish I could give you my address book and spread this word to my little world.
    I wasn’t planning to write in anymore, too much stress for me, but you keep doing what you do. You have made such a strong impression on me. You have one of those hearts that just get the love and understanding out there. Thank you for being you and I’m sorry you are sick like me. Love, Linny

    • Amanda says:

      Linny,
      Thank you! You have been such a great, sweet inspiration to me. I love your writing and hope you continue to do it, even if it is just for yourself. There should NEVER be pressure on writing as therapy. Thank you for all of your kind words.

      Amanda

  16. Dear Thyroid says:

    Amanda;

    This letter took my breath away. My darling, you are an awesome advocate. You have more strength, compassion and kindness than you realize. You impact our lives daily by ‘bringin’ it!

    So many of us relate to this, it seems. I sure do.

    Thank you for writing this really thought provoking letter.

    You’re inspiration!

    xo

    • Amanda says:

      Thank you Katie!

      I know I have a lot of strength and many other good qualities… They just get jumbled up sometimes. I am so glad I wrote this letter out, I forget how great it feels to let it out and get support. I will continue to encourage everyone to write and send things in. Even one sentence helps!

      Amanda

  17. Good job Amanda!
    Hardly any of my friends, family or co-workers had heard or knew anything about thyroid disease let alone Grave’s Disease and thyroid cancer. It is horrible to go through and I went to the extremes of writing and publishing a book so as to explain what was going on with me in order to keep my job! Now that I am thyroid-less I am dealing with hypo symptoms which are so different from feeling hyper. To this day I still hear the same comments: but you look fine, shouldn’t you be better now that you’re on medication….
    Lisa

  18. Anna says:

    AWESOME!! thanks for putting down what so many of us face daily with our invisable disease.

  19. Lolly says:

    Amanda Great letter I can so relate to every bit of it, down to the beat boxing heart palps, the sweating like a pig and the loss of weight.. even though some people can actually gain weight with hyperthyroidism and Graves.

    There is nothing Fake about Thyroid diseases just Fake people who really don’t understand or give a shit and come out with fucking BS statements who needs these kind of people in there lives, making a bad situation even worse..Nice thing about having Graves if there is anything nice about it, you tend to grow balls you never knew you had, along with the tash and beard…even though it maybe seen as the ravings of a mad women we know better and even if what comes out your mouth sounds like something off another planet at least you’ve had the guts to tell those fuckers to get the hell outta of your life the GD ragey way and don’t it just feel good.

    I hope you get in control of your Graves and can start living again, it is possible just takes time and knowledge.

    Lollyxoxox

  20. savannah says:

    Great Job! It was such a lovely letter and it seemed to explained everything so perfectly. I was diagnosed with Graves Disease in 2005. I was in the middle of my college exams and attributed my symptoms to the stress of school. My teachers didn’t seem to understand why I couldn’t sit still in class, or why I’d run out of the run sweating and shaking all over. I wish i could mail this to them!

  21. April says:

    I’m 17 years old and have been recently diagnosed with hashimoto’s. I know what you mean about the people. It hard on my social life when I’m with my friends and I have to make multiple trips to the restroom. Those who don’t know, think I’m anorexic or bulimic because I am skinny. It’s also hard on my boyfriend and when we go on dates. I know he cares and he is very supportive and understanding I just don’t like going on dates because I feel scared I will get sick.

  22. Lori says:

    Great letter on how frustrating hyper/Graves can be, both internally (physical and emotional) and externally (dealing with the questions, the presumptions, the accusations, the misinformation). If one person with a “normal” thyroid can learn from this, it’s worth it.

  23. rachel says:

    thanks Amanda
    but where are you?
    it is now August 2012 and I typed “i hate my fuckin thyroid” into my search engine and was grateful & tearstained to find your ‘dear thyroid’.
    I never liked doctors but now I am homicidal with rage almost all the time (except when I am too tired to move, or just trying to get my 6 year old through a joyous, constructive day)

    thanks for your writing

    • Amanda says:

      Hi Rachel,
      I am here. I don’t write much anymore. But I still have a thyroid… and it still messes with me on a daily basis. I just want to say that I love that you found my very long letter here on Dear Thyroid… especially love that you found it by typing exactly the phrase we all feel… “i hate my fucking thyroid”. I hope my letter helped. Dear Thyroid is a great resource, I hope you find more here that will help you to know you are not alone.

      Since writing the letter, I have been more vocal about my disease. Especially defending myself against negative thoughts towards thyroid disease.

      Take care.
      Amanda

  24. Sara says:

    Amanda,

    I’m not sure when you will read this (I am late to the party!!!) I have just come from my Endo, and I am scheduling surgery to have this hateful gland removed from my body. I have been dealing with this for about 5 years now, (I”m hyper) and I can’t take it anymore. My husband, the person who is supposed to be my support no longer understands me. My personality has totally changed, and I don’t really even like me that much right now. The frustration is almost unbearable. I even went to a surgeon a couple of years ago, and HE HAD THE GAUL to act like if I can swallow, and I don’t have trouble breathing, I am wasting his precious time. I have found another surgeon and I am calling him Friday to schedule. As hard as it is for my sick Thyroid to be inside of me, causing me much turmoil, the thought of not having it, and dealing with the opposite scares me as well. Again I will say it. THE FRUSTRATION HAS GOTTEN UNBEARABLE. And not one person understands unless their Thyroid has decided to stop, grow, spit out too much hormone. Thank you for writing this letter. I wish every person on the planet would read it. I don’t feel quite alone anymore. You are amazing.

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