I HAVE A SITE DEDICATED NOW TO POSITIVE POST THYROIDECTOMY STORIES. PLEASE VISIT AT HTTP://WWW.LIFEWITHOUTATHYROID.COM!!!
Wow, this has been such a busy month, I haven’t had time to update the blog.
I’ve been healing from having my thyroid removed. Sorry for all my normal readers, but I wanted to post about the thyroidectomy experience and post healing process. Mostly because I haven’t been able to find any that are NOT insane horror stories and were all non-normal scenarios. So hopefully someone who has thyroid cancer (or has to have their thyroid removed) will do a Google search and read my experience and help them feel better.
3 weeks after the cut. Note weird neck line above the cut - that was not there before - I think it's cuz there is a chunk of body missing on the inside, resulting in excess skin.
1. The worst part of the whole experience is waking up in the holding room after the surgery. You might find it hard to breathe – DO NOT PANIC. Take slow, deep breaths. It will be uncomfortable, but you should really focus on trying to breathe.
2. The hospital sucks. They will take your blood once at night and again in the morning to check your calcium levels. If they went up a bit overnight, they will probably set you free. I was able to leave by 8 AM the next day.
3. People will try talking to you. Your vocal chords are temporarily damaged and you can probably croak at them but it will suck. Text them on your mobile device and tell them to stop trying to make you talk. Texting is your friend for the first few days after the surgery.
4. You’ll be able to walk around, etc. In fact, two days after the surgery, you will start your new medication and you might feel AMAAAAAAAZIIING!! You will feel like you can run, bike, go hog wild. Don’t do it! It’s your body hyped up on hormones, since the old thyroid hormones take over a week to go away, so you are doubled up. The thyroid controls your energy levels, so of course with too many thyroid hormones coursing through you, you will feel amaazing!! wooo! superwoman! yaeahhhh!!
5. This will end. You will crash. Sleep is your friend.
6. You might feel great after two weeks and decide to go back to work. DO NOT DO THIS. You will get tired really easily and by that 1 PM meeting, feel like you got hit by bricks. Take THREE WEEKS OFF. I made this mistake and suffered heavily.
7. It takes about three weeks for the neck swelling to go down. My scar looks like a red line drawn on my neck, but that all depends on your skin type, etc. I smear Vitamin E on it every day and wear my hair back so it doesn’t stick to my neck. Classy.
8. It’s been about three weeks and I have most of my voice back. It’s hard to talk loud and I can’t hit the high ranges. Expect to NOT sing in your car for about a month.
Overall, I feel great CONSIDERING that only three weeks ago I had my neck slit open and my thyroid and surrounding lymph nodes cut out of me. I’m still a little tired, but overall pleased.
Please feel free to contact me if you were diagnosed with Papillary Thyroid Cancer and want to talk about it.
No need to apologise to your regular readers. We all love you (some in a good way, some in a way that will make you want to check the bushes outside your house with a LONG poking stick) and none of us are normal.
This is really interesting and written in your inimitably humorous style. My own thyroid doesn’t work; it’s just sitting there and hasn’t tried to endanger me the way yours did. You helped me understand what you’ve been through. Even if you ARE a dashed Colonial, I’m glad you’re feeling better.
Go buy something pretty. xx
Thank you soooo much for your sweet words and I hope the post made you smile. That is always my goal with anything I post (for the most part).
Is your thyroid underactive (hypo)? That is super common on the maternal side of my family – almost every female family member has a poorly performing thyroid and they have to all take synthroid.
I totally want to go buy something pretty =X i have to be careful, especially this time of year with all the cute halloweeny stuff.
If you aren’t already doing it, go to an endincronologist, get your blood checked, take back your body from the goobery thyroid!
Goobery. Lol. Love it!
Yep, I’ve been kicking the crap out my thyroid for over ten years now. I’m hypo, and I’m on thyroxine (175 micro gram thingies) a day. Hypo is common in older women, so to be diagnosed as a twenty-something chap was a bit of a surprise!
Have been pretty stable for a while now, feel lucky that it doesn’t get in the way of my life!
If you do go for cute halloweeny stuff, your loyal readership will expect photographic evidence!
Hypo thyroidism is very common in my family on the maternal line. Anyone else in your family have it?? It’s common in older women unless you are like my family; they all start the pills by 11 years old. =\
You may want consult about using Mederma cream to make the scar almost non-existant!
I will look into that 🙂 I am currently using Vitamin E but will check out mederma. Thanks!
I had a total thyroidectomy in 2006, due to Graves disease and they found a small pappilary carcinoma, removed closest lymph node and no spread (thank God) my scar is very minimal, my surgeon did an incredible job. Keeping it out of the sun for a year, wearing a pretty scarf around it helped alot. The only problem, they can not seem to regulate my thyroid hormones. So I never feel well. But I am hoping one of these days, it will happen and I will feel normal again. So I wish you luck on your recovery.
WOW. SO great to hear that you dodged a bullet with the thyroidectomy. Right now it feels too uncomfortable to wear something around my neck but I have been digging up some scarves.
I’m really sorry to hear about your thyroid levels. Do they fluctuate a lot? Any advice for me? I’ve only been on the meds three weeks, seeing the endo for the first time on Friday.
How is your T3 level? About 15% of the patients may have T4 to T3 conversion issues (85%of T3 is produced in the body outside of the thyroid)
Not sure what my T3 levels are, they do not regularly test that on me basically the t4s and tsh. The levels fluctuate alot between high and low. I am going to talk to my primary care about referring me to a new endo, one that will listen.. The best advice I have for you is to find an endo that listens to you, and how you feel. Everyone is different.
For me, the hardest part is trying to determine what was normal and what is from not having a thyroid.
Example: getting out of bed in the morning. I was never a morning person and i hit snooze a billion times before the operation. Today, I had a hard time getting out of bed. Which is it, you know?
I know that I am extremely tired all the time. And very grumpy, lol, and lots of aches and pains. Supposed Fibromyalgia because of having thyroid removed. I don’t have the energy that I used to that is for sure. But I stay positive and hope that one of these days I will be back to the old me. 🙂
I do know hypothyroidism makes you fatigued.
I find out Friday, haven’t had my blood tested yet. I take both T3 and T4 every morning. (synthroid and cytomel)
Pingback: Commuting in the Cold
Hi ! Yes I googled the side effects of thyroidectomy and your blog popped up 🙂 I have just done my surgery for papillary thyroid cancer and I’ve been suffering from poking sensations in my throat. Also, there is this really hard vein that stretches from my jaw to throat area. I would like to ask what you’ve experienced after the surgery and if they are similar to mine. I am unsure if they are side effects after the surgery or if there is something wrong with my process of healing. I will be going for the radioiodine soon, did you do that too? If so, please advise me what to do. Thank you very much ! 🙂
Hey congrats on your thyroidectomy, welcome to the ‘broken butterfly club’!! 🙂
How long has it been since your surgery? I know I personally had my bandages on for at least a week after the surgery, and it was about a month before things seemed to ‘back to normal’ (like getting my voice back!).
The poking/choking sensations will take a few weeks; it’s been over half a year for me and I still can’t wear anything around my neck (ie T shirts). Not sure what you mean about the vein? Have you called your doctor/surgeon about either of these side effects? The support group I’m in has shown me that there are a looottt of different kinds of side effects to this surgery 🙁
What stage were you in? Did the surgeon feel that the cancer has spread and he/she wasn’t able to get it all out? I refused radioiodine; my endocronologist backed me up on my refusal and said that the surgeon did a really good job and they’ll just keep checking my bloodwork every six months for the next five years. If something comes up then, THEN i’ll submit to RI. But that was just my path!!
Please keep me updated!!!!!!!
“broken butterfly club” ??? can you explain that reference
Hey Diane!
The thyroid gland is often said to be “shaped like a butterfly” so some friends of mine (who also had thycan) made up the term (or perhaps heard it somewhere? I’ll have to ask them) that our thyroids were ‘broken’ (cancer) so we had them removed, so hence, broken butterfly club 🙂
Hello. I had TT 17 June. Still struggling thru recovery. I just found out that the surgeon left surgical clips in place. I think this is what is causing my shortness of breath, tightness of my chest, chest pains. I have had numerous visits to the emergency room for chest pains. You may want to find out if surgical clips were used, they are supposed to be safe, hypoallegenic titanium, but you may be allergic to them. It would be a risky and complicated surgery to have them removed.
Hey Ashley,
Wow, are the surgical clips supposed to be left there or was it an accident? Have you had them replaced yet?? Did you know you had metal allergies?
I hope you are feeling better ! 🙁
Cheers,
Sparky
your experience sounds similar to mine as far as surgery goes…. it was truly terrifying to think about having your neck cut open…. quite a vulnerable area…. and, yes, i had trouble thinking i wasn’t breathing in the recovery room….wished i had read your blog before…. i am almost 3 weeks past the surgery….. the scar is small but it pulls and feels tight…. with a ridge…. i am putting coconut oil on it daily and some aquaphor as well…. i used it on another scar and it did a good job…..my pathology results revealed microcarcinomas throughout my thyroid so i am grateful to my doctors for encouraging me to have it out…… thank you so much for sharing your positive experience….it will be helpful to many who read it and are facing similar surgery….
WOW Three weeks ago! CONGRATULATIONS on your surgery and being THYROID CANCER FREE WOO. Do you know yet if you will be doing RadioIodine? That weird ‘tight’ feeling took awhile to go away (at least 2 – 3 months) for me. And I don’t think I can ever wear a turtleneck again 🙂
Please keep me up to date on your recovery. Take it EASY (I did not and suffered) and know that you ROCK!!! 🙂
thank you! i never was much of a turtleneck wearer…..never liked anything like that around my neck, but i do rock the scarf look pretty well….. thanks for letting me know about the tightness and that it may be around for a while…i also have a numbness under my chin and upper neck….. i don’t need any treatments other than the increasing dosage of synthroid…. my doctor thinks an annual scan will be enough to make sure all is well…. the cancers were small and contained…. and the lymph nodes were normal…. i am taking it as easy as i can… i am retired now so i don’t have to worry about when and how to get back to a full time job…. i am so glad that i found your information…. so many other sites and postings offered up a dreadful scenario…. and the surgery question was hanging around my brain for over a year…. so glad to be done!!! and thank you again for your enthusiastic energy….. 🙂
Hi there! Thank you for posting your positive thyroidectomy story. I’m having a TT on Jan 3rd. Can you please tell me how you’ve experienced you weight to be since your surgery? Everything I read says I should expect to gain 10…20…30…50…pounds! I am so terrified!
Thank you!
Hi Jen! Sounds like you are starting off the new year with a bit of a kick!
Great question – I am really obsessed right now with my weight/diet, so I really should update with some more details. I saw the same posts about severe/incremental weight loss and vowed I would eat healthy and great after my thyroidectomy. So I proceeded to pig out UP to the thyroidectomy. DO NOT PIG OUT before your thyroidectomy! LOL
There was an immediate weight loss of 10 pounds that I gained right back, solely because I was so tired/exhausted/didn’t want to eat/hospital.
And then I did NOT change my eating habits. My weight slowly crept up, but honestly, it was because I pigged out all the time. Seriously. I was in a new relationship, my work offers free breakfast and lunch and all you can eat sundae station, etc.
I just changed my eating habits three weeks ago (to a keto lifestyle) and have already lost ten pounds 🙂 I’m lighter than I was than before my thyroidectomy, and I’m shooting for another ten!
My advice – just watch the processed carbs (regular soda, bread, pasta, rice). If you really experience a lot of weight gain even if you are eating right/exercising, then it’s about thyroid levels, so ping your doctor right away. My meds run high so that really helps me as well for my metabolism. I hope this all helps!
Please let me know if you have any other questions and I would love to hear from you post-thyroidectomy!!!!!
How did your thyroidectomy go??
Thank you so much for responding. Wow! That’s wonderful that you’re down below what you were before the surgery. I’m so happy for you! That really gives me hope. Did you get regulated on your medication and how are your TSH levels? Also, how is your tired feeling/depression you alluded to in the post back in Aug 2011? Better?
Jen
I’m aiming to get down to the weight I was in college. I just hit 149 yesterday yay!
There is definitely hope. I had given up hope and THAT is what led me to not lose any weight.
My next check up is not till December (grrr). My last check up around May said everything looked good. We run my meds a bit high to help counter the depression. Sadly, it didn’t ‘take care’ of my depression (guess I’m deficient elsewhere) BUT it didn’t make it worse. ACTUALLY since I started my new diet change, I haven’t been depressed AT ALL!! (And I just went through a break up, a standard depression-trigger for me). And I can stay up all day (I usually go home and pass out after work).
BUT I’m worried that now there are ten less pounds of me, maybe that increases the potency of the thyroid meds? I need to email my endocrinologist and check on that, before I start proclaiming all this new found energy and positive brainwaves to low carb diets LOL
Anyways, since your surgery isn’t until January – if you are already a healthy weight, just maintain it. If you are overweight, maybe now is the time to change your eating habits/exercise/review other biological stuff? 🙂
Let me know if I can be of any help!!!!
I am a middle-aged male that just went through this wonderful experience about a month and a half ago and I can tell you that Sparky’s post op experiences were almost identical to mine. I wish I had found her blog earlier. I had a total thyroidectomy to remove a 7 cm nodule (yes, that big. Long story, I felt nothing, just had a persistent, intermittant, sore throat and indigestion that I ignored for about 2 years while I pursued my career. Moronic, I know). It turned out not to be cancer (i really believed my drs thought it was cancer. major good shock!), but they did find an incidental, less than one mm, micro cancer on my “good” lobe (no treatment necessary due to such small size). Surgery went well and I was released the next day. I felt great, just like sparky described, and returned to work less than 10 days after surgery. Well, I found myself crashing in the afternoon, passing out at meetings, and generally exhausted. I now know, thanks to Sparky’s post, that this was the transition from my naturally circulating hormones to total reliance and adaption to synthroid. Why the drs didn’t make me aware of this is a little suprising. After about 4 weeks, I guess my body adapted and now I’m at about the same energy level that I was before. Other than a nice scar (Which i like to refer to as my Colombian necktie), I feel pretty good. The swelling and scar is down considerably and my voice is practically back to normal. As sparky noted, there are loads of horror stories out there on recovery. I think these are the exception and not the rule. like sparky’s, my experiences were rather good. Best of luck to all others dealing with this.
Thank you for sharing your experience, and I’m (partially??) glad it’s similar to mine, in the sense that you are doing well. Yeah why did the doctors NOT tell us that we will go through all that? Mine just said ‘oh wait a few weeks before going to work’ but didn’t tell me WHY. SIGH!!!
Love the term ‘colombian necktie’. I’m going to start using that. 🙂 Is your neck now visibly slimmer? 🙂
I know. My doc basically told me that I should base my return to work on how I felt. Nothing more. I wish i found this blog at the time because i was very concerned. As far as my neck swelling, yes, it’s visibly slimmer than it was six weeks ago after surgery. However, its still not totally normal. Keep in mind that i think I had the equivalent of a baby’s head removed from my neck! My scar is about 3-4 times larger than yours, judging from your pic above. I wish I had a scratch like yours (instead of my c-section), but I can’t complain. I’d be in much worse shape if it turned out to be a 7 cm cancer.
So far no weight issues/mood issues. I ‘ve always had a weird diet. mostly mediteranean and low carb, during the week and whatever I can eat on the weekends. Regular exercise and only slight alcohol abuse during football season. So I don’t know if this has helped.
I found this bc I just googled “post thyroidectomy return to normal” b/c I just had my thyroid surgery Friday! I am sooo tired! I was normally an active person, and now I feel like I can’t hardly move from the couch 🙁 my fingers also seem to not be functioning properly, like when you wake up and can’t grab things bc you’re all sleepy…I’m on a temporary hormone until my endo apt. Could it not be enough hormone being the reason I feel so down? My doc doesn’t think this is so abnormal, and is only concerned if I have tingly fingers rather than sleepy ones 🙂
Any advice for gaining energy? I’m not used to feeling like this!
Hey Megan,
Thank you SO much for writing me. I am going to send this response to your email directly just in case you don’t get it as a reply.
You just had a MAJOR SURGERY!!! Your largest endocrine gland was removed from your body. That is HUGE! Please please rest rest rest and take care of yourself.
It hasn’t even been a week yet 🙁 The next few weeks will be exhausting. I was falling asleep every day by 2 PM.
What hormone are you on? (Sythroid?) It’s interesting that they have you on any hormones right now, as it takes about a week before you will feel the effect of having no more thyroid (as the thyroid hormone lasts for days in your system).
Right now, my advise is to EMBRACE the sleepiness – it’s your body’s way of saying ‘omg we had our neck cut open and a gland responsible for our energy levels snatched from us arghgh we need to ressssssssst and heaaaal’. I did not embrace the sleepiness and really suffered – I really think my heal rate would have been better if I just sat on my butt on the couch and snoozed/chilled out.
You WILL get back to normal!! I just did a triathlon less than a year after my thyroidectomy AND even lost 20lbs after that. If I can do it, so can you.
So bottom line – REST!! SLEEP!!! Take it easy on yourself 🙂 And welcome to the ‘broken butterfly’ club 🙂
Thank you for this site. I just had a total thyroidectomy to remove a malignant 2.8 cm tumor. I have an incision much lower than yours, almost around my collarbone. I am fortunate to live near Philadelphia and had my surgery performed by one of the best thyroid surgeons in the country. My voice is fine and my calcium levels appear ok. I do have swelling under my chin, almost like a turkey neck, has anyone else experienced this?
I am worried about my energy levels dropping. I was put on synthroid right away and feel good. I am planning to go back to work next week on a part-time basis. How abrupt was your energy loss once your natural thyroid hormones disappeared? How functional are you? I am on a 200mg dosage prescribed by my endocrinologist due to my physical size (ex-football player) and wonder if this will be sufficient to allow me to do office work for a few hours a day?
Thanks again for this site. I was in denial for several weeks following my diagnosis but my wife encouraged me to reach out to other survivors for support and once I did, felt much more comforted. I very much appreciate all of you sharing your experiences as even self-professed “big strong guys” like myself benefit from not feeling alone in all this.
Hey Ted,
I’m super happy to hear from you. How long ago was your surgery – it sounds like it was really recent.
I’d say it took a few weeks for the swelling to go down for me. Also you had a pretty big tumor so loose skin/swelling is to be expected!
I had no drop in energy due to the thyroid loss – I had a drop in energy from exhaustion from the surgery. I was pretty lucky 🙂 You can actually be extremely tired/lethargic/etc if your meds are TOO high! I found this out the hard way.
I think you could do some office work but I really DO recommend you take at least two weeks off. Note that your thyroid is a MAJOR gland and can effect your memory and other things; I had a hard time getting back to work because it was hard to focus and stay awake.
Only 25% of the people diagnosed with ThyCan are men, so it was really interesting to hear from you. Spread the word – even men should get their neck palpated for ThyCan!! You are a great representative!!!
Hi. I just had a total throidectomy one week ago today. I am so glad to find this blog because it surely seems as if I’m on the road to zombieville. Its comforting to hear others going through (or gone through) what I’m experiencing. I will keep this blog bookmarked. Sadly, I’ m too tired and shakey to continue this comment. Thank you for your information and humor!
CONGRATS on your thyroidectomy. You’ll be a zombie for a few more weeks. Please refrain from consuming any brains during that time, as there are transmissible diseases in those pesky brains.
SLEEP and hope you feel better soon : )
hi… today is 15th of january 2013 and there will be a medical mission next month… but unfortunately before you can avail the mission you must still has totally belong to the indigenous people… Glory to God i could say we’re not indigenous yet thyroidectomy costs a lot… i wont have such amount and my doctor has required me to undergo operation as soon as possible… 🙁 i really pray i would be granted… i am a multi nodular… at first going through an operation where you’re neck will be cut and the scar really scared me to death, but yeah i thanks for writing this blog about it.. i feel better and ready to undergo it now… I WISH I WOULD BE GRANTED… oh… bye now… thanks again.. and you’re beautiful
Hi! Hope you’re doing well. Im feeling a little more human now. I will persevere! My issue now seems to be something off with my blood chemistry and bruised parathyroids. Numbness and tingling in my hands and feet accompanied by brain wracking headaches. Waiting on blood work to find out the definite cause. Any familiarity with thse issues?
Hi MikiLew,
I’m so sorry, I just saw this post now. I never got an email notification 🙁
PLEASE LET ME KNOW HOW YOU ARE DOING, as those are symptoms of calcium deficiency. I hope the tests came back with something and you are doing well!!!
hi there… i had thyroidectomy 10 days ago…. and i should say i printed this blog before the operation 😛 it helped a lot.. but i guess every patient has different cases… numbers 1-4 i had them but not 5-8 lol..
i had my surgery feb.12 and was sent home the next day… i took pain relievers for the first 2 days then stopped since it doesnt really hurt much…. days 1-3 i cant turn my head left or right and lying to bed and rising from bed is really a struggle im having my water with a straw and was able to drink with a glass on the 3rd day…. days 4 i was able to rise on my own, lay on my on, can turn my head 45 degrees to left and right… but all the swolens gone… day 5 im so good.. day 6 better.. day 7 im back.! my surgical tape was stripped off the same day and i was really amazed how good the stiches are.. its barely there except for both ends…
over all im very happy… and i love my ENT, Dra. Mabini. She’s simply THE BEST… so if your in vancouver, canada check her out.. she’s the best really…
-oh and by the way i had 8 lumps… the others lumps are sorrounding the main thyroid gland… they had it on biopsy… i havent had the result yet… if its cancerous or not… is there anyone here who knows how many days it takes for the result to come out?
oh and anyway… my dosage doesnt seem to suit me… before the operation im having thyrax .025 mcg .. after the operation, they increased my dosage into .075 mcg…. and i could not sleep…. really…. i stay awake until 3-4 in the morning….
Hey Darl!
Thank you so much for writing me and I hope my post helped you a little.
Congrats on joining the thyroid-less club.
Sounds like they are running your dosage pretty high, if you are unable to sleep. I just had my dosage seriously upped and I’m wiiiiiiiide awake at 3 AM.
You may have had a different experience in regards to my bullet points of 4 – 8 because it sounds like the doctor immediately had you taking meds right after the surgery? If that is the case, that can explain why you are wide awake; it takes up to a week before your existing thyroid hormones exit your body completely, so if you started immediately taking a hormone replacement while your body has a normal level, you’d be ‘flyyyyyyyyyying’ (versus the crash, which I went through).
My endocrinologist told me he ran my meds high intentionally as it can suppress growth of any cancerous cells that may remain.
Lab results vary by doctor/hospital/lab, but I think two weeks is a safe estimate to find out if the lumps were malignant. Please let me know the results!
It’s only been ten days so take it easy – having your largest endocrine gland removed is no small thing!!!
Hi the re my name is Shannon and i just had tt march 28,2013 .for very early stage pap thyca . Surg went well but i too feel like im really shaky and jittery as i started my synthroid a few days before surg. Im terrified of weight gain as well but will be d oing my best to eat well and not GAIN:( i had a boss who was worried i would be a disruption to our office after all of this so he has decided to let me go ( totally illegal i know) but maybe its a blessing as i was going to return to work this week. After reading about how hard it can be maybe ill look for a new job in a month lol anyways just glad i found a site i can talk to people about this as this journey has been kind of lonely with no one who really understands thyroid issues:)
Hey Shannon!
Wow I can’t believe your boss fired you. BEYOND illegal. When you feel better, you should really consider pursuing justice so that jerk learns to not treat people like that!!
But like you said, one door closes and another opens – you can use this time to heal!
I gained maybe 5 lbs in the year after my thyroidectomy (from very bad eating habits, though!) and just lost 20 lbs!! So it’s VERY possible to not only NOT gain weight, but LOSE weight. For me, I switched to a low carb diet and it worked great (I run a low carb blog at lowcarbkitty.com fyi).
Wow it’s only been a few days for you – don’t over exert yourself and if you still feel really jittery/shakey in about two more weeks, let your doctor know!!!
Feel free to contact me ANY TIME you want to talk.
-Sarah
Hey Sarah thanks so much for replying ,it s really great to have someone who can relate to all of this crazy ness lol
Im a 34 year old mom of two little girls and I live in Kelowna British Columbia ( canada) just to let you know a little bit more about me .
So yes its been a scary ride all this cancer talk but thinking im at the end of the part anyways.
I so far have been told I don’t need RAI Therapy so as long as the rest of the pathology from my TT are ok I should be done with this!! (Except the whole Synthroid madness )but
god I hope to hell I wont be feeling that badly from it all. Today was a better day for jitters so I think my body is adjusting a little bit!!!
I am taking this UNEMPLOYED( lol ) time to rest , and yes ill be fighting this one let me tell you once ive healed a little more!!!
Just BLOWN away at some peoples level of in humain qualities or uncompassionate quailities!!! I don’t know whats worse but they are not worth it obviously .hit
Love this website , IM SO glad I came across it and can ask you and others different questions as I really have not met anyone else going through this!! I have a lot of support but its
hard when people don’t understand exactly what thyroid problems are all about .
Talk soon cheers Shannon From Canada
ThyCan is still considered an ‘uncommon’ cancer, and 3 out of 4 of the people who get it are women! AND the common age of diagnosis is 30-35! I got diagnosed at age 32 (i’m 34 now, just like you but alas, no children.. yet!).
Also, it takes over a week for the thyroid hormones to leave your body, so right now you are doubled UP on hormones! And this gland is sooo important and controls your energy, so totally understand the ‘climbing up the walls’ jittery.
How old are your kidlets?
I promise, you’ll get better! DO NOT be afraid in the next few months to admit if you are tired/weary while adjusting to your meds/major surgery – the people that are there to support you, let them help you! My mommy moved in with me (that is how I gained the weight, mom is an amazing cook) and I’m normally super independent but she was a huge help.
You need to resssssssst , woman! 😀
Thank you for a positive article. I was actually in a horrible panic and almost considered cancelling my surgery due to all the horror stories. I had the surgery on May 07 this year and so far I am not feeling much different than before I went in. I’ve been on synthroid for 5 days now. Other than a sore throat and a bit of fatigue I really don’t feel bad. I fully expect by the time my stiches are out I will be feeling pretty normal.
So glad to find others with good experiences also.
Congrats on your thyroidectomy!!! LOL!! WOW It’s been a week for you, please please remember to take it easy, rest, your body just had a major gland removed.
Keep us updated!!
Thank you for sharing:) I found out three weeks ago I have Papillary Thyroid Cancer. My sister had it 7 years ago, so I am semi familiar with it. However, I am a bit anxious about the surgery. After reading about your experience, I do feel better and more aware. I am a very positive person and am grateful it was found and I am able to have it taking care of soon:) Thanks again for sharing! ~Gina
Hey Papillary is the ‘good one’ for thycan 🙂 Rock on for being a positive person, please check back after the surgery and let us know how you are doing!!
<3
Thanks! I will def keep you posted. I know there will be a lot of ups and downs so will try my hardest to be patient:)
Just found your site. So glad as I have read some pretty depressing stories. Needed more positive ones. I have upcoming thyroidectomy in about a month. No cancer. I have large nodule (over 3 cm)plus enlarged thyroid 11 cm. I am afraid for the surgery. I suffer from panic attacks and cannot even have oxygen mask on my face for anesthesia because it panics me. I do better when they just inject the meds into the vein (learned this from shoulder surgery). Anyway I’m already panicking when I read how you feel you cannot breathe after surgery. I have a very difficult time even going to the dentist because I feel I can’t swallow when he’s working on my teeth. I realize these feelings aren’t normal but they are for me. I also suffer from depression. Trying to stay positive and pray alot.
Hey Susan,
Sounds like you should def talk to your doctor and anesthesiologist before you are put under to figure out how to work with your concerns. I also suffer from depression so it’s extra important that you ensure you are taking the right dosage of meds to help with that. I have faith in you, please let me know how the surgery goes!!
Day 10 post op. Surgery went well. Dr was surprised at how large (11 cm) my thyroid ended up being. No anxiety before or right after surgery. I didnt have the feeling that you did of not being able to breathe. Felt fortunate about that. Recuperating at home and trying to rest. Had insomnia before surgery. Seems I still have it. Was put on 75 mcg of levothyroxine day after surgery. Really don’t feel too bad. Some tightness in the incision area. Still swelled. Hoping that will subside soon. Does cause me some anxiety but not all the time. Am surprised how well I feel considering.
Oh and no cancer. Mine was just too large and had to be removed. Love this site. Horror stories scared me! Lol!! So glad to read positive stories.
YAY THANK YOU for writing with an update!! VIVA no cancer and I’m glad surgery wasn’t traumatic for you.
WWOWW 11 cm, that is huge. Your neck must look all pretty and slender now 🙂
It will definitely take a few weeks for the swelling to go down, I know it was about 2 months for me and I had all the same symptoms you have (swelling, tightness, anxiety).
I just registered a new site to have a more central place to go called LifeWithoutaThyroid and if you are open to it, I’d love to have you share your story 🙂
Luv,
Sparky
Hey guys, I am now 12 days post TT surgery and am so glad to have found your blog – I am in the UK and was getting sick of reading all the horror stories – surely someone has had a good time with this, I asked – and then ping I found you all!!!! I feel good. Not much appetite and lots of trips to the toilet (sorry) as i dont seem to be holding down any food but with over 30lbs to lose i am feeling happy with that!!! am staying with my parents as i have young kids and didnt want to overdo it looking after them full time. The surgery itself is remarkable. I had multinodular goiters two of which were over 5cm and so now i have a beautiful slim neck (allbeit a bit swollen and scarred!). Am hoping the meds will be a nice easy journey and i can get back to being me again – just better!!!!! Planning on following low carb, clean eating although i had a major sugar thing before so i need to wean myself of the candy and i should be ok!!
Wooooooo! Go Caroline!!
BUT! Not holding down food? That is an odd symptom – please definitely consult with your doctor/endocrinologist regarding that. Are you having a bad reaction to anti pain meds?? Are you still on any anti pain meds?
I totally loved getting my slim neck back, so I hear you there. Yay for feeling pretty again!
Also I have a separate blog that is solely dedicated to low carb eating, as that is how I lost 20lbs (a year AFTER getting my thyroidectomy). It is awesome, so if you want check it out at http://www.lowcarbkitty.com
ALWAYS happy to hear another success story. Please let me know how you are doing and keep us updated!!
ah what a lovley reply. am heading over to lowcarbkitty now. will let you know how i get on xx
Thanks for this ! I’ve just been diagnosed with Papillary Thyroid Cancer, I’m 30 and 15 weeks pregnant with my second baby. I’m a little nervous about everything especially recovery being a preschool teacher and I go back to work in a month. Surgery has not be scheduled but they want to do it soon! Dis you have to do radioactive iodine? They are saying I will need to once the baby is born! I’m sad because I won’t be able to be around my babies! Anyways, thanks for you info!
Hi Maggie,
I am sorry for the delay in response – I have been out of town for awhile!
I did not need to do RadioIodine. What a tough situation – having a child then doing RadioIodine. But if the doctors say that is for the best, then godspeed to you. When is your surgery scheduled for? Congrats on your pregnancy 🙂
Cheers,
Sparky
I am so happy to have found this site. It is so positive and something I really need. I’m three weeks post op today and couldn’t have felt better! I was hypo since 1999 and then in late 2011, my lovely thyroid decided to go bonkers and bounce back and forth between hypo and hyper, high thyroid antibodies (it was attacking itself) and greatly enlarged. After well over a year and a few months of being on PTU (blocks the thyroid hormone), trouble swallowing, digestive issues, weight gain, tired, depressed, you name it, I got the courage to have the surgery. I do NOT regret one second of it. Surgeon said my surgery took longer than usual due to its size and was starting to wrap around organs and head toward tongue. Ewwww! TMI! LOL! He actually called it a monster! I am sooooo happy to have a normal size neck again, to be on thyroid hormones again (I do better on cytomel or thyrolar). Unfortunately, he apologized my scar was larger than most but surgeon said it was the largest he’d ever removed. I guess we have to choose our battles. Thank God the biopsy came back fine! Scar is healing really beautifully – using scar pads and mederma. I am hopeful to get some energy back and start to exercise again. Went from 128 lbs to 148 lbs over past year. The only issue I seem to be having right now is “testiness”????? Will need to talk to the dr about it…..
Thanks again for a great site. It is positive and encouraging. Enjoy all the stories and humor….
Terry
Hey Terry,
Thanks to comments like yours, I have decided to start up a website dedicated to positive thyroid cancer/thyroidectomy stories called LifeWithoutaThyroid.com. Would you be willing to write your story to be posted on the site? And share a pic of your thyroidectomy scar? Your story is super important because you had to have a thyroidectomy due to an EVIL gland!
Thanks 🙂
Sparky
Sparky: BTW, what doses of synthroid and cytomel are you on? Thanks!
12.5cytomel, 112 synthroid 🙂
Thanks, Sparky for your reply. Do you mind me asking what your T4 and T3 levels were on your last blood? I’m asking because my one month post op with my regular doctor (not surgeon) he took me off the synthroid and cytomel because my T4 was 8.8 and my T3 was 30. He said too high and probably needed to not start on replacement so soon after surgery. (Surgeon started me 10 days post op).
Thanks.
Hmm I honestly don’t know what those are off the top of my head. I need to get my blood tested any day now (OK I needed to get it tested a few weeks ago but have been busy and hate needles) and when I get the results, I’ll let you know!
10 days post op sounds normal/fine to start taking med replacement =X To my understanding, many doctors will run the meds high the first few months. Better high than low lol
Thank you for this great blog.
Thank you once again for this site. I had a TT June 14, 2013. I’m officially at my 6 week post op point. I was diagnosed with “papillary thyroid carcinoma, conventional type with tall cell features”. (I’m still struggling with the terminology). Lymph nodes were removed. On my medical report it says pT3 N0.
Thanks to my most excellent surgeon, recovery was great. Didnt lose my voice and the sore throat lasted only for three days. Popsicles are the greatest thing after a thyroidectomy. When they put me on 125 mcg Levothyroxine, I was jittery for about 2 weeks and sweating bullets. About a week ago, I noticed that the jittery feeling really wasnt there anymore but now I was starting to feel tired and want to take three hour naps in the afternoon.
I was back to work after two weeks and feel I should of taken that extra week. Is it normal to go from a “hyper” feeling to a “hypo” feeling. My first appointment post op with my endocrinologist is next week. I don’t know if I’m feeling depressed or a little introspective with this cancer scare.
Another question I have is about RDI ablation. Why do they wait so long after surgery to administer it to you if you need it?
Thanks again for your wonderful blog.
Sharon
Hey Sharon!
Congrats on the thyroidectomy and glad to hear you had Papillary thycan. It can take awhile for the existing thyroid hormones to leave, so you were doubled up on thyroid hormones, hence the jitteryness.
Not sure about the RDI – last I knew there was a shortage of the meds in the market which led to a delay. Also, doctors will only use it if they suspect there are still cancerous cells they didn’t get. I didn’t have RDI, personally.
I went back after two weeks and it was definitely not enough time 🙁 Your body just lost it’s largest endocrine gland and it’s totally fine to have a wide range of emotions afterwards.
How are you feeling??
Sooo happy I came across your account of the surgery. My fiancé is having the surgery done on Tuesday and we are both kind of freaking out. Googling and watching you tube accounts has been very troubling on us. They are either super scary or too professionally medically worded. I can’t wait to let him read this thank you so much for publishing. While we understand each persons experience is different we needed some hope that he will feel better overall after the surgery because this has made the last six months pretty difficult.
Hey Krystal!
I apologize for the delay in response, I was out of town.
How did the surgery go?? I don’t understand why there is so little positive info about post thyroidectomy so I’m starting a blog called LifeWithoutaThyroid and would love it if you and your fiancee would share your story with me/the blog to share with all.
Is he having the surgery due to cancer or thyroid issues?
Cheers,
Sparky
Like most of those who have responded, I had my complete Thyroid removed on July 29th. I thought (crazy) I would be able to return to week just two days later. That was a mistake. I have not felt real discomfort from a pain perspective, but have just felt out of sorts. It is good for me to see that these feelings are common and not out of the ordinary. It helps me to know that it may take some time until I feel normal again. I appreciate the feedback by so many. I have finally started to realize that sleep is my friend. Going in I didn’t view this as major surgery, I do now. Thank you for your encouraging messages. (and the time you have taken to post them) i am going to have my wife log in and read the comments. It will provide an excellent glimpse as to what she will expect from me. Blessings Tom
Hey Tom!
Congrats on your thyroidectomy and oh nooo that you went back to work just TWO days later!!!! You just had a major surgery; your body and brain need to heal.
I hope you are feeling well but don’t be hard on yourself, ok!?
Cheers,
Sparky
Hi Sparky:
Apologies. I did not see your comments about starting a web site Life without a Thyroid and me sharing my story. I’d be more than happy to share it wherever needed! Yes, it was quite the EVIL gland for sure!!!!
Thanks again!
Terry
I am so happy that I found this site.
I will be having tt on the 27th. I have multiple nodules that are hypoechoic and have changed over the past year. I also have compression symptoms, hoarseness and frequent coughing when I eat.
I do. To feel that it will be cancerous, but we will see.
Paulette.
Hi! Awesome reading and education here! I am 2 weeks post op tomorrow. 3 of my 14 nodules were pap cancer. I am wondering if ppl experienced bad heartburn or reflux. I am struggling with that. My body also won’t go to sleep until like 2 in the AM and then I am exhausted. All day. I also have pain this far out of surgery. Manageable- yet annoying. Did any of you!? What about pain under chin/jaw line down to incision? Another annoyance!
Such a pain in the neck!!! 🙂