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Who Am I This Minute, Thyroid? You Tell Me!
Dear Thyroid,
You make me look like a fool. I live in Florida, yet I am dressed for winter in July, because I fear the air conditioning. You know how we Floridians rely on our precious AC. Surely, my toes will freeze, my fingers will go numb. So there I sit, hoodie on, hands in pockets. I’m sure upon meeting me, upon the first hand shake, people think, “Man, that girl has freezing hands.” They over look my striking blue eyes, surely;and remember only the cold hands. I suppose, I have you to thank for that.
My moods. My exhaustion. My emotional fraility. The Casie I know, The Casie everyone loves — is gone. Thyroid Casie takes over. Everyone hates Thyroid Casie, even I hate her. No one knows what to do with her, they think she’s crazy, unemotional, robotic. Even I think that, regardless of what my heart knows; sometimes I think my thyroid is stronger. I convince myself it’s not as I stare into the mirror. It’s just the thyroid fog taking over. They are my eyes, my hair, my dimple;kind of. My heart pounds in my chest, but only because you will not let it rest. I feel sorry for my friends, my family, my boyfriend. They all have to deal with Thyroid Monster Casie. It’s like I am The Hulk;like I change in a split second, except;I do not turn green, I don’t become a giant;and so, no one knows there’s been a change, that there’s been disruption, until I’ve already exploded. Until, it’s too late.
I’m 26, and I can’t remember shit. If I didn’t write that down, I would’ve already forgotten it. I stock up on post it notes, but I’m not sure why. Because I write it down, and then I forget where I wrote it. Where I stuck it. I’ll find it months later, but by then, it’ll be too late.
You rock my confidence, and I am usually quite confident.
I’m 26. My tongue is fat. My words are slow. My brain is swollen. My body hurts. My joints, they ache. This is not me. The 96 year old woman in the mirror;is not me. I feel isolated, although surrounded. I don’t feel ugly, I know that I am not; but I surely don’t feel pretty. My hair is stringy. My eyes are circled in darkness. And I think that fat tongue has made my whole face turn chubby. I feel far, far from sexy. Being simply pretty is difficult, if not impossible. You have done this to me. This is not me.
I’m patient, but my patience wears. They try this dose, this medicine. I research everything. I don’t want to be on synthroid anymore, I want nothing to do with the drug. It works wonders for some, works great for my friends; for me? I feel it just eats away at the very person I know I am to be. I’m nervous. What if the next medicine doesn’t work? What if I run out of medicines, of doses, to try? Then what? Where will that leave us then? But, I know, I have to keep going. I just will not let you win.
I’m waiting for you, when I finally feel like me again. I’m waiting for you. What will set you off, what will anger you. What will cause you to spiral down on me again, and take over? You’re sneaky, and you’ll use any excuse that you can find. One day I feel great, and then the next, I could feel your wrath again. I know you’re lurking, waiting to kidnap my normalcy. Waiting to steal this girl I love. I am more empathetic because of you. I have to be, I feel for people; because;sometimes I know they cannot feel for me. They just don’t understand, I cant blame them. I learn to value the good days I have. I cherish the great days. As for those crappy days you love to throw at me? I keep on moving. It is all I know. I just will not let you win.
I hate you. Everyone hates you. And it takes all the energy I have (which you, Dear Thyroid, know is limited) to remind myself;
THIS. IS. NOT. ME.
It is you. And you suck!
I tire quicker. I need more sleep. Forget it, I’ll just rest my eyes — the world does not stop, simply because you have.
The loss of hair, however, is something I will probably never forgive you for. You even control my HAIR, you stupid mangy thyroid. A 19 year old female, and no one could understand why I’d cry in the bathroom, at the mirror, with chunks of my signature blonde locks laced between my hair brush, tossed within the sink.
Now that I’ve lost the weight? I absolutely live in fear of the morning where I will wake up and put on my “big girl jeans” again. Surely you’ve seen them sitting at the bottom of the drawer, you know — “just in case”. It’s been almost five years since the weight fell off, and yet still;those jeans remain.
At 150 lbs on my tiny 5’4 frame; I never considered myself “big” – The pictures, however, do not lie. My swollen cheeks, my dark and droopy eyes, my wider hips. I had an ass! I wish I could’ve kept that from time to time — you know, it is a family trait;to have a bubble butt. Now, I swing from 120 to 130. I look thinner than that though, and people notice. They think it’s an eating disorder, because along with the weight? Well you’ve stolen any sense of a normal appetite, as well. I pick, I snack. It’s not an eating disorder; it’s you.
I worry, as I get older, if someday when I get married — will it all be too much to handle? Will the groom know what to do with Thyroid Casie? I barely know what to do with her. I’d hate to put that monster on him, too. I read your books;you run people out of our lives; they just run — and who could blame them, if given the choice? I’d run too. You cage us. You end marriages practically before they can even begin. You just won’t give us a chance, will you?
We’re not crazy. Our thyroid is.
Please let me be happy. Please allow my groom to understand; I have no control over you. Help him recognize when you crash — the sluggishness, the moods, the emotional distress. How could you NOT recognize it, I know. I think the same thing. But some people think it’s US, when, really;it’s YOU! Help this man, my groom, to help me. To be patient when new doses are in order. To let me rest when I need to rest. To help around the house, when I just can’t. To just;wrap his arms around me and hug me, when I least deserve it; because it isn’t ME. It’s YOU.
Do not run that groom, my groom, off. He is my happiness. He gives me everything that you do not, stupid thyroid. Most of all, I need him. Whether he knows it or not, I need him.
Please, just let me be happy.
I worry, too, about pregnancies. Will I even be able to be pregnant, someday. Will it be an easy pregnancy, or will you make that unbearable too? Will my symptoms equate to misery? Will all the hormones be able to live peacefully inside of me — or will they erupt? Let me, please, just be happy.
Let me be a good woman – a good wife – a good mother.
You scare me, thyroid. As I get older, the fear creeps into me more and more, as life becomes less about me and more about we. What will I do on the days when my energy is too limited to lift my baby, when my body aches too much to pick up toys, or to clean a kitchen — and you know how much I love a clean kitchen. Will people question me? I’m not perfect. I never have been, but you make it more noticeable. Will they look at me differently? Will you team up with post partum? Why can’t you just make things easier, thyroid? I will not let you win, you do know that by now, right?
It’s because you’re selfish though. I try to take care of you, I do my absolute best. I’m on top of my health and yet you fight me. You’re mean, thyroid. I swear I’d punch you;if you weren’t in my own throat, that is. I’m jealous of people who don’t understand, of people who don’t HAVE to understand; because they have normal thyroids. If I had three wishes, you bet that could be one of them — a normal thyroid.
How nice does that sound? I particularly think it has a beautiful ring to it.
I hope those people, those normal thyroid people, appreciate their thyroids. I hope they thank them every day, and then — I know they probably don’t;.because, most people, don’t even know what a thyroid is. Where it is. Or what it does.
It does; EVERYTHING. And even that is an understatement.
Brain fog. Confusion. Frustration.
I know you’ve become so impossible, that even good doctors rarely know what to do with you. How am I supposed to figure you out, if even they cannot?!
I preservere.
Thyroid, I assume it’s safe to declare you erratic, and unpredictable, and indecisive. I’m grateful for a good, strong heart. I’m grateful that I am positive – that I know how to dance in the rain and navigate rough waters. You’re lucky you have me, really.
But, I swear — I’d get rid of you, if I could.
I will not let you define me. I will not let you win.
(Bio) Casie Shimansky, 26, is a vibrant chick living in the sunshine state. By day, she is chained to a cubicle. By any other light, she is an Orlando Area Wedding Photographer. Diagnosed with Graves Disease at 19, she’s been fighting the battle since. Recently, put on Natural Thyroid — she finally feels that she is LIVING, not just SURVIVING. Blog and Facebook
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Tags: Graves disease Dear Thyroid Letter, graves disease support, hyperthyroid blog, hyperthyroid community, hyperthyroid support, hyperthyroidism, self-esteem issues thyroid patients, thyroid changes body, thyroid changes mind, young adults with thyroid disorders
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29 Responses to “Who Am I This Minute, Thyroid? You Tell Me!”
Leave a Reply to Joanna Isbill
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Casie – Absolutely loved your letter. You took me on a journey and granted me permission to see your life in a glimpse.
Thyroid Casie and Casie, even when Thyroid Casie is calling the shots, Cassie will find her way back to her fabulous, wonderful, brilliant self.
Thank you for sharing so much of you with us.
xo
Casie-thank you for finally putting into words what I have been feeling for the past 5 years after being diagnosed with Graves when I was 25. This made me cry. I can sympathize with so many things you said in your letter and it is very encouraging to read that other people go through the same crazy symptoms as I do and that I am not insane. Thank you for confirming my sanity. I hope you are feeling terrific.
Casie, I loved your letter. It was very true for me too. The only differance is it did destroy a marrage. I am now with a man that tryes to understand, but I fear he will not be able to handle the Thyroid Linda much longer. He says he can, but there is alway doubt. I am glad you are still fighting. Your letter inspires me to keep up the fight too. Thanks!
Oh honey…I could have written that letter myself…made my eyes well up with tears. Keep fighting the good fight – don’t let that thyroid beat you! Much love, hugs and empathy,
J.A.
Yeah! Casie!
B- You are not insane. You are not alone. Everything you feel, from what you wrote, is related to your thyroid. The sad part, is that you have to endure it. We are so sorry that you do.
One thing to note, my dear, you are not alone. We are all in this together. We will get through it together.
Thank you so much for expressing yourself so honestly.
xo
Casie-this letter was amazing. When I was reading it I almost thought I wrote it! Just wish I could get my husband to read it. We just seperated and it’s.mostly because of my “thyroid gwen” as you put it. June 29th would have only been 3 years of marraige!!! Never really knew there was a reason for my moods and anger. I Hate, when, you, wake, up, too, tired, to, face, the, day, and, there, is, no, reason, you, should, be, tired, except, that, you, have, a, crazy, butterfly, in, your, throught, that, controls, your, every, move, and, it, decides, it, doesn’t, feel, like, waking, up, today!! Then it’s the moods that Wake up instead! Out pops thyzilla!!! Then two hrs later I’m apologizing because I didn’t know why I was mad in the first place but I pissed him off so much he’s still steamed and…..next….which emotion will tha butterfly send out next!! I can’t stand it. I’m on 2 meds for mood swings. Two for depression and one for anxiety! I hate taking everyone of them! My psych can’t even figure me out from day to day! On day ” u have bi-polar tendencies” the next “ur not bi-polar ur mood is justified by the situation” I don’t like you either thyroid! You wrecked my life!!! Thank Casie. For shedding some lite on my craziness lol. Never was like this before my “butterfly” decided to fly away!!
Linda – So sorry to hear that Thyroid Linda ended a marriage. I’m sorry there’s dissension in this marriage. Why do our thyroids do this to us? How do you get the support you need? How do you take care of you?
I wish you didn’t have to go through this, my sweet.
Very glad we have each other.
xo
Joyce-Ann;
I wish this wasn’t something you could’ve written, too. Simply because it means that you are suffering.
Your show of support is appreciated.
Hang in, love.
xo
Lisa – Love what you wrote 🙂
Gwen – Very proud of you, too, as I am of everyone, for sharing so much of you with us.
You have Graves disease, yes? Is your thyroid balanced? The psychiatric disturbances with hyperthyroid and Graves’ disease patients can run the gamut: from bipolar, paranoia, delusions, severe depression, unbelievable rage, etc. etc. etc. Hypothyroid patients experience SEVERE depression. I’m not as well versed on other psychiatric issues. In short, I wonder if your thyroid is so off, that it’s causing all of the psychiatric disturbances.
What do you think?
After 3-years of marriage, so sorry to hear that you’re on the brink of I-don’t-know-anymore.
We are all here for you, and for each other.
xo
Dear thyroid- I don’t know what I am anymore. Started out w/ hypothyroidism with my t4 count at 469. Now I’m on the hyperthyroid side. Medication dosages change with every visit! Started seeing an endo that was even recommended thru this site and he seemed more concerned that I had sleep apnea and celiac disease (don’t have so grateful, he tested) than with my levels changing so much. This was the reason I went to him because 20 + years I have yet to be regulated. I’ll give up again because After this many years it’s just never gonna be regulated! Then after a while I’ll try again. It’s all just a vicous circle I’d like to break free from!
Casie, thank you for your beautiful, open, honest letter. You truly gave us a glimpse of what you go through everyday.
“I will not let you define me. I will not let you win.”
In the midst of all you are dealing with, your outlook is amazing and inspiring. That, I know, must be Casie, not Thyroid Casie.
Thank you for sharing your life with us.
xo,
Joanna
I equate living with thyroid disease with highways; you’re riding along nicely with the normal flow of traffic on a little country road and you need to get over on that highway (of Life) , so you get on the On ramp and can’t bring yourself to merge onto that busy 8 lane ——it requires too much thought, energy, decisiveness, will power—so you stay on your little country road afraid of the big cars and trucks jostling for position and try to be happy just going from point A to B—
Casie-there really will come a time when you’ll ride with the big kids but realize that there’s plenty of us here still trying to merge right along with you
And if your future groom isn’t up for the ride, maybe he needs to drive himself; but at least give him a chance to prove that he’s a good passenger
Also, be thankful that you were diagnosed young. So many of us had to wait yrs to find out we had a reason to travel in the bitch-mobile
Thank you EVERYONE for your comments & support! I’m filled with hope, not only for myself — but for every single one us.
Gwenygirl – I hear you. I understand your frustration. From what you’re saying, and I’m speculating because I’m not a doctor, it sure does sound like you’re swinging between hyper and hypo. Where are you located? Maybe we can find you another doctor.
I know you’re done. I know the idea of getting back on the medical wheel seems EXHAUSTING, and considering you’ve walked this mile for 20-years, even more so. Maybe we should give it another whirl. What do you say?
You, my dear, are worth fighting for.
xo
Love this, Joanna — In the midst of all you are dealing with, your outlook is amazing and inspiring. That, I know, must be Casie, not Thyroid Casie.
Beautifully said, and so true…
xo
Bee – Eloquent and hysterical as always. xo
Cassie – Thank you so much for joining our discussion, and again, for sharing more of you with us.
Each letter and comment brings us closer as a community, and reminds us that we aren’t alone.
xo
Bee’s metaphor was outstanding. Her comment really got me to thinking.
Here we are, all members of the Jacked Thyroid Club, has anyone had a positive experience as a result of their disease? I’m genuinely curious.
xo
I’m in nj. Saw mark sandberg. I’ve tried levoxyl and synthroid. I’m wondering if I should try armour? Any suggestions on that? I just don’t understand why I swing back and forth. Seems most people get normal and stay there, could we have a discussion on that?
Gwen —
I was on synthroid for 7 years — just about every dose of it. Went on Synthroid AND Cytomel about a year and a half ago which was “okay” but not really much different.
I truly, truly feel that some people are “allergic” to synthroid — they just do NOT do well on it. (and I say “allergic” simply because its an easier way to understand it for some people) I know I, for one, was miserable on it. I think I had a year where I felt “my best” on it — but I was SO eradic and ALWAYS swinging between hyper and hypo.
I wanted to be put on Armour a year+ ago (when I added cytomel to my mix) but “waited” because of the shortages. This past February I marched my tired, achey little tush in to my doctors office and said “NO MORE.”
She put me on Armour — and I found a local pharmacy that COMPOUNDS the prescription for me. (Mary Shomon on About.com has links to Natural Thyroid resources & a list of places where you can FIND pharmacies that either have natural thyroid OR will compound it) We’re still playing with the dose to find where I am at my absolute best, so I do still have my sluggish days and my foggy brain moments, and do my best to “rest up” — BUT — I have NEVER felt better, and it is a complete “night and day” situation. It isnt a CONSTANT “thyroid casie” situation as it was when I was on synthroid.
Within the first month, I was BACK to that “26 year old” I thought I had lost. I even went out with my friends TWO nights in a row — something even they jokingly noticed was “unusual” — because USUALLY Im too tired the next day to do much of anything, let alone get dressed up and venture back to the clubs!
EVERY thyroid patient is DIFFERENT, and that is why I am such a HUGE supporter of the Natural Thyroid treatments. As patients, and as PEOPLE, we deserve to feel our best and LIVE our best — for some, synthroid simply doesnt cut it.
From what Ive read (and Ive read a lot) there’s an alarming amount of patients that do not respond to synthroid but do really well on natural treatments. Obviously, Im not doctor — but for me personally — it’s be a life saver.
It’s definitely worth looking in to and talking about with your Dr! Good luck!! & dont give up — you WILL get through this!! xoxo.
Casie-u seem like a young carbon copy of me lol. Everything u say I can relate to! I work late on Wednesdays and Thursday I feel like I’m too tired to talk!! I was jealous when u said u went out two nights in a row. That would cripple me. I wish I could get a dr to test my t3 but after this many years they just keep doing the same thing and I keep feeling the same crappy way. It’s not like my numbers are off by crazy amounts but they ate off but all dr’s say they are afraid to change my dose for fear of going the other way so it stays off. I’m just tired of not knowing which “Gwen” I’ll wake up with and so was my husband. I just cry when I leave the dr’s because it’s always useless. I wish I could let them wear my Gwen suit for a month then they would do something. I go back in July and I’m going to ask about the Armour. Thank you so so much for listening and telling ur story. I truly appreciate it!
You’re more than welcome. I have learned that I have had to really push my doctor’s and TRY a lot of different doctors. I have been to three endo’s — none of which I was thrilled with — one of whom made me feel crazy, and the other who all but called me “fat” when, yes, after I ate a ton of Christmas Cookies I may have gained a couple of pounds (and my friends will tell you that a couple of pounds is actually “good” for me because I DO appear to be a lot thinner than the scale even says) Most wouldn’t believe Im actually closer to 130 on average.
There was a doctor who wanted to put me on depression medication and “call it a day” — I refused. I am NOT depressed, I WANT to go out and enjoy life and experience life — I DONT HAVE THE ENERGY!!
So I told HIM if HE didnt “fix” my thyroid then he surely wasnt going to stick me on a medication I, personally, did not feel I needed. (I do realize that some patients do better with this medication, and it was an option I had on the table if Natural Thyroid didnt seem to do the trick)
You…kinda…more or less have to be a bitch to get any where with doctors.
My current Nurse Practitioner is who I deal with regularly in terms of my thyroid. SHE understands me, ASKS how I am FEELING versus just looking at “results” — and genuinely understands that Im honest with her. I KNOW, at this point in my life when I need a medication change.
Doctors are so frustrating, trust me — I have a thousand stories on battles Ive waged with them. Some made me give up and just “settle” for wherever I was at, but in my heart of hearts I KNEW there was an answer, it was just a matter of finding it and finding the doctor who’d allow me to treat CASIE versus lab work.
Casie,
I felt every word of your letter and could relate to many aspects of it. well T Lolly has a rage for fook sake run for cover. you know we got to take the good days and hold onto them. they are few and far between.
I hope one day you will have more good than bad and enjoy life while you are still young.
Great letter heart felt and honest.
Lolly
Gwenygirl;
Not everybody gets normal and stays there. I want to make sure you know that because, well, sadly, you’re ‘normal’. Thyroid disorders aren’t a one-size fits all kind of disease, neither is thyroid cancer.
I wonder, have you tried a T3 medication? I’m going to post on the boards on Facebook your location and see if we can’t find a good referral for you.
Maybe desiccated thyroid would be worth trying. The goal, is never to give up, and to keep fighting. You will get back to yourself, and you will find your way. I just know it!
xo
Katie-
Positive experience: BOOBS—something i was missing before hypoT…Now they’ve become very impressive companions to my big fat ass and round tummy
A year and a half after being diagnosed with Graves disease, receiving radioiodine treatment and on levothyroxine, I still feel dreadful. I am desperately trying to find a new doctor in Manhattan that doesn’t tell me my blood results are fine so I should be fine, and is then surprised when I become completely overmedicated again and his answer is that he is baffled and it shouldn’t be so. I don’t look like myself, I don’t feel like myself, I am so tired of being tired. Can anyone recommend a great doctor in Manhattan who actually listens? I’ve made multiple calls today to find my 3rd endo and the one doctor I’ve found in the area who is even open to discussing the natural thyroid drugs with me doesn’t take insurance and charges $1,000 and up for a consultation. Shouldn’t all doctors be taking a more holistic approach to their patients? If anyone can help….
Thanks for this article, I felt like I was reading my own life. I totally feel you lady. It says that you are feeling better on the natural thyroid, mind sharing which one? I would love some insight!