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I Wish I Knew What My Thyroidectomy Will Bring…

Post Published: 07 June 2012
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Category: Dear Thyroid Letters
This post currently has 15 responses. Leave a comment

Dear Thyroid,

Well it is only two more days until we part ways. I’m not really sure what to think. They say my levels are normal, but I sure as hell don’t feel normal. I had some major mood swings today, and nobody knows why. I sure as hell wish I did. I wish I knew a lot of things that I don’t.

I wish I knew where my story was going. Normally I am good at predicting where a story goes, but this one just seems so beyond me. I don’t yet understand what is going on, where you are taking me. And it is driving me insane. Hell I’m talking to you aren’t I? A mere gland in my body. One that in less than 48 hours won’t be a part of me anymore. And I can’t process it. I can barely think. All I can do is lay back and listen to the world turn.

Written by, Lilly

(Bio): Lilly is a 20 year old college student. She resides in Illinois and spends her free time crafting. Her blog is http://somethingsomeoneorother.blogspot.com/.

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15 Responses to “I Wish I Knew What My Thyroidectomy Will Bring…”

  1. Alyssa says:

    Hi Lilly,

    I had my thyroidectomy 4 years ago, but I can still remember the night before and morning of. I was scared and confused. All I can do is give you support and say it will take some time to heal, but try to relax and stay calm. I can’t say things will be 100% better for you because we are all different, and they say my levels are fine and I am not. Just know there are people rooting for you and best wishes. We are stronger than we know.

    Be well,
    Alyssa

  2. Jen says:

    I won’t lie, it’s not easy. Especially for the first year or so after you become thyroidless, when your body freaks out at the change and spends so much time adjusting to the medication. It sucks and you’ll be exhausted and you’ll gain weight. But you’ll come out the other side of it, a new you, well adjusted, thyroid be damned!

  3. I’ll be wishing you well, Lilly. As hard as it may seem, you’ll be OK. <3

  4. david pretty says:

    Well Lilly i wish i had good news for you ,
    but having a thyroidectomy was the worst decision ive ever made for myself .
    I am a 40 yr old male on the other side of the pond ( gt britain),i was diagnosed with graves disease 4 yrs ago ,after 2 yrs of misdiagnosis i would like to add by my gp.
    I was informed by my endo that surgery was my only option due to the severity of my disease,i had the full range ,severe mood swings ,insomnia,itchy skin ,lost 10st in a yr from 20st to 10st,shakes ,proptosis of eyes,biopular ,weakness of muscles ending in total paralysis from neck down for days at an end .
    Without doubt the worst thing to happen to me in my life ,anyhow because of the severity of the proptosis bacause i am a smoker my endo decided that surgery was my only option ,so after nearly 18 mnths on propananol and propolythouricil 80mg and 750 mg a day my levels were considered low enough for a total thyroidectomy .
    That happened 2 yrs ago ,i must admit i had a brilliant surgeon ,my scar is barely visable ,no nerve damage either so thats a bonus ,but to date i have never felt right .I am on 175 mg of levothyroxine a day and continually emit signs of hypothyroidism even though my blood tests come back within “range”.I feel if i have been left in limbo my the GMC in my country which refuses to budge on its treatment of this condition .
    I have been suffering with total exhaustion all day ,i can never wake up ,i never have any energy to do anything ,the weight gain is ridiculous i am now hovering around 23 st ,i have been diagnosed with severe depression and am on anti depressents for 6 mnths now with no change ,i suffer with skin conditions ,dry ictchy skin,flaky skin my nails are always soft and a funny colour i have trouble concentrating for any time span and i feel this will never end .
    I know your country has different treatments for this condition and the ranges of free T4 etc are considerably different from ours so i hope this benefits you i really do because as far as im concerned this is a living nightmare !!!!!!!!!!!!!!

  5. Louise says:

    ‘All I can do is lay back and listen to the world turn.’ – I love this line of your letter. Well said – I think we can all relate as well. I’ve started describing hypothyroidism as being like the whole world is running around you and you are jogging behind them, out of breath, just struggling to keep up.

    As you can see, I have hypo/hashi’s, so I’ve never had a thyroidectomy, but I am just a year older than you. It must be weird talking to a part of your body which won’t be there soon, but I think you’re allowed to talk to it in its absence 🙂

    I hope you can run alongside, and be part of the sounds of the world, soon.

    Louise

  6. Robin says:

    I know this feeling well. It’s an uncertain journey, made more or less that way by whatever our doctors predict or don’t. All that’s for sure is that changes will happen, and some are good, definitely. For myself, I felt I learned much more about my thyroid after I lost it, and there was relief in that. Some of the quirks and problems pestering my body for years magically disappeared along with my gland, and I only saw the connection in the aftermath. But of course, the new challenges of adapting to the replacement meds and whatnot come as well. You will find your way with that though, and what works best for you.

    One really amazing thing I didn’t expect to learn through this experience, is the number of people I know or am connected to who are also living without a thyroid gland. It’s a much bigger club than I ever realized, which is unfortunate and a sad statistic, but I take comfort in knowing that so many have moved on from this and are living on so well. It’s a ride for sure, but so is life itself.

  7. Missy says:

    I really wish you the best, having been there, it’s not easy, but I can be honest in saying of all the surgeries I have had, this one was the easist. I know, strange. But yes, the road to recovery without a thyroid is not an easy one. Just be your own advacate! Don’t be afraid to ask questions and to get answers. Best of luck!

  8. Jess says:

    I had my thyroid taken out in January and turned 21 in February. (I’m from IL, too…weird.) It’s okay to not know what’s going to happen…you’re gonna feel like that for a while during recovery. It takes a while to readjust. You’ll have bad days and good days, but remember that you have a support system – family, friends, and a ton of people who have gone through the same thing right here. Be strong.

  9. CC says:

    Lilly,
    I just had my thyroid removed a little over two weeks ago. The days before are a scary time and I’m so glad to be on the other side of them. They told me that my levels were ok but I knew they weren’t. My hair was thinning, I was irritable and tired easy. . The surgery really wasn’t too bad, just a bad sore throat when swallowing and a hoarse voice for a few days. Getting up and walking helps so try doing that. I had a lot of chest congestion from the surgery but throat lozenges help a lot. The worst part for me was just the bandage on my throat, I don’t like things touching my neck. You’ll be ok. Good luck
    PS the scar isn’t that bad either, I decided before the surgery to embrace it since its going to be part of me for a long time. Some people tell me it’s beautiful which is funny to hear.
    Hang in there~ CC

  10. Lisa Davis Budzinski says:

    Lilly,
    By this time you probably have had your thyroidectomy by now. If so, I do hope that you are on the mend and doing just fine! Please remember to ask, ask, ask all questions so you will know somewhat to expect. Please let us know how the surgery went and how you are doing.

  11. Hypogirl says:

    Lilly,
    I am thinking of you and hoping that things are going well!

  12. Amanda says:

    Hope that you have found your journey to be okay. I had my thyroid removed in May this year and so far feel like I have been riding a roller coaster – hence why am looking on line for others advice, feelings and perhaps even some solidarity! It can feel like a lonely place to be when your whole centre of your wellness is wellbeing is thrown into chaos and others around you expect you to bounce back all of the time. I feel exhausted all of the time and I raise 2 young children on my own as my other 1/2 lives and works away from home (which sucks), I also work with families in crisis and feel that I am playing a charade most of the time. My levels are still all over the place and seem just as hard to manage as they were before having surgery. I live with a hope that this will all improve – moods, tiredness, weight gain, depression, hair loss, crappy skin and nails as I feel that I have become quite isolated lately as others just frustrate me with their well meaning but uninformed advice.
    But each of us are different and again I hope that your journey has been far better then mine and I wish you happiness and wellbeing X

  13. Kim says:

    I am a 50-yr-old “young” woman, 2 yrs free of invasive intraductal carcinoma (breast cancer). I had two partial mastectomies and axillary dissection, followed by 12 wks of taxotere and cytoxin, followed by 36 radiation treatments (the last 9 with a “boost”). I finished BC treatment in March of 2010, and have been on tamoxifen, then Arimidex, since then.

    Over the past year, my oncologist noticed that my neck seemed larger in the front, and a series of scans and tests revealed a small (1 cm) nodule right in the isthmus (the little bridge) between the lobes of my thyroid. Fine-needle aspirates showed cells suspicious of papillary thyroid carcinoma (at least it wasn’t mets from the BC — hallelujah! That would have been terrible…). Follow-up BRAF mutation analysis was positive, so, given my history of other cancers, we all agreed that thyroidectomy was the best option.

    I go to the surgeon today to set up the pre-op work. Reading these posts makes me feel a little dejected. It has taken me two years to lose steroid weight and get back to any kind of energy level after BC and chemo, and the idea of gaining a pile more weight and being sick again makes me want to cry.

    I know that folks seek out blogs like this when they are scared and not feeling well. What I would really love are posts from people who are positive and encouraging.

    I can relate to the comments from others that people assume you are well because you look well. Through BC I was told I looked great (and I DID), and I learned lots of ways to tie head wraps and wore dangly earrings to counteract my lack of eyebrows. If you don’t look like those folks on TV who have tubes sticking out of them, near death, people assume that you feel well, or are not scared for yourself and (for me) my family, or that you’re not that sick.

    There is NO good cancer to get. That’s foolish! Who wants to hear they have ANY kind of cancer? No one, that’s who.

    Sarah, blessings on you and your household, and on all those who posted here. I am happy that I know the Great Physician, because I can always count on Him.

  14. Elizabeth says:

    I had my thyroid removed at 16. At 27 I am still sensitive about my surgery and my scar but the thing that I have learnt is that you are not alone in this lifelong struggle. Just reading your replies makes me realise that the US and UK are full of people who struggle daily with this burden. It takes your life but it won’t take you everyday. It addanextraweight on your shoulders which few will understand but like every good fighter, wear a smile.

  15. Laura says:

    I had my thyroid removed in June of this year. It was the size of a baseball and cutting off my air and I was choking all the time. I would go back to this choking and shortness of breath in a heartbeat. I can barely function. I do nothing extra these days. If I can work and keep my house, I’m good. I hope things get better. 🙁 Hang in there people.

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