Today’s theme is: Stay Off Google

The following story is from Steven who had a thyroidectomy as a result of papillary carcinoma. He had his thyroidectomy a week prior to this story, so he has a journey in front of him. SO happy to have this fantastic first chapter in his story, and we hope Steve keeps us all updated!
Love, Sparky

Hello all,

Today’s theme is: Stay Off Google.

My name is Steven, and I am a 27 year old male from Kansas City. Today marks one week since my total thyroidectomy. While I’m sure there will be changes to come, I at least wanted to share my experience so far in an effort to boost morale for other readers. This website helped my mental quite a bit before surgery, so I felt an obligation to do my part to contribute.

On February 27th, 2018, I went into my physician for a standard checkup/physical, due to the fact my longtime physician was retiring soon, and he wanted to see me before then. I have battled with anxiety and depression most of my life, but was almost excited to go in and see him. This is because I had been feeling FANTASTIC. I was happy with my job, happy with my hobbies, happy with my family, etc. It was the best I’ve felt in years. During the physical, he indicated he felt a small lump on my thyroid. He talked to me about the chances it was nothing, but advocated I go get a sonogram the next day at a referred hospital. I left unsettled, frustrated, felt cheated, etc. I felt ZERO symptoms, and didn’t even know what a thyroid did 🙂 . The mind is funny. I left the physician feeling sick and unhealthy, despite 30 minutes prior feeling outstanding. Crazy right?

I went and got a sonogram the next day and again was told it was probably nothing, and 90% are benign. A few days later, I was called back, and the ENT Doctor explained his concern. The odds were stacked against me a bit. Reason being I am 27 and a male and healthy. The first BAD sign was that he saw some calcification in the sonogram. This is often a bad sign. The chances kept getting worse and worse for a “non-issue” nodule. The next step was an FNA Bioposy. If you are nervous about these, don’t be! It takes 25 minutes, and the worst pain you get is the numbing needle. After that, it just feels weird. Not painful. The sensation of having something inside of your neck is strange, but its over quickly.

This brings me to my first point that I’ll tackle later. The waiting around for the results from the bioposy was 10000x worse than hearing the diagnosis, going through the surgery, and recovering. I’m not exaggerating. That week of waiting was far worse on my psyche than anything. This is something to consider. Please God do not do what I did. I started googling every experience ever since the human body was developed. I surfed every message board ever reading horror stories. I blocked out the good ones, and focused on the bad ones. I convinced myself I had cancer days before I was even told there was a suspicion. It did me no good, and if I could go back in time, I would have handled that anxiety much differently.

Moving along, the reports came back as Suspicious for Papillary Carcinoma, and a TT was recommended. My world came to a stop. I defeated all the good odds. My surgery was scheduled for about 10 days later. I tried so hard to get out of it. I could not come to grips that in 2018 a TT was necessary for something “suspicious”. I sought second opinions, and looked at every method possible to keep my thyroid. But the day came closer, and I was forced to accept it.

But let’s move on to the happy stuff… : )

On March 21st, I had my thyroid removed. I was nervous of course. I was in a full gown, with an IV in my arm, being constantly asked what the doctors were doing and what my name was to protect themselves. The doctor asked “Would you like something sedating to relax you?”… If you are asked this, DO IT. It is amazing. Idk what the hell it is, but it rules. Next thing I know, I gave my dad a fist-bump and my mom a kiss, and was wheeled away.

I don’t remember going “under”. I don’t even think they warned me. BOOM! Hours later, I awoke in a strange room with someone handing me a grape popsicle. It was the best treat I’d ever had. I was in ZERO pain. I was still sleepy but realized what was happening. I was told I was being goofy and making nurses laugh, so hopefully I didn’t say anything dumb : ) But please note, I had ZERO pain. That was great of modern medicine to grant me. Soon, I was hanging out in my own room with a TV and buttons for help where I stayed the night. I got woken up at 12 and 4 for vital checks, but that wasn’t bad. I was discharged the next morning with instructions.

So here I am a week later, expecting my life to be miserable. I expected a scar under my chin that would freak everyone out. I expected to be sleepless in pain. I expected to be called back and told they had to go back in. I expected the scar to get infected. I expected to have bouts of anxiety, depression, sickness, headaches, nausea, hair loss, etc. This is because I googled all of this.

HOWEVER, One week later, I feel exactly the same as I did before. Perhaps a tiny bit more tired, but I blame that on staying up late and the mental fatigue following coming off as anesthesia. I was back to work on Monday and came back to supportive and curious coworkers. I don’t blame them. My scar is so far down my neck that you can’t even see it, and my follow up appointment noted it was healing wonderfully. Are there going to be changes in the future? Probably, but I have the full support of medicine and doctors that monitor this stuff. Will my life change? Probably, but was my experience the same as Google told me it would be? No. Not even close.

Moral of the story is please note the positive stories, and catch yourself before falling down the rabbit hole of horror stories. You have NO idea what other medical issues someone is dealing with on top of having their thyroid removed. You are not them, and they are not you. If you google the symptoms, you will convince yourself you have those symptoms.

It’s 2018. Find a trusted and experienced surgeon, recognize your options and resources, take your medicine, and hopefully your first week experience is as good as mine.

Thank you for letting me share, and hang in there!

33 Comments

Filed under Papillary

33 Responses to Today’s theme is: Stay Off Google

  1. Maree

    Great advice, thanks for sharing. Glad all went well for you.

    • cindy sherman

      Hi! I was wondering what hosp in KC and drs you went to? I have been going to NKCMO. I’m really scared and worried about having my thyroid removed. I have Hasimotos, a goiter, nodes and now graves eyes. Thank you!! 🙂

      • Steven

        Hi there,
        I went to Olathe Medical Center, or Olathe Health that I believe it’s called now. On 151st street. The endo I went through was Dr. Brian Metz. I am now seeing Dr. Mennen for my post op iodine/follow ups. He’s also at Olathe med. Highly recommend although at the time I felt somewhat “against” him as a roadblock to accepting what I had and what needed to be done.

        • cindy sherman

          Steven, Hi! Thank you so much for the reply. 🙂 I’m happy you are doing well! I wish you the best!! My surgery will be Aug. 7th. (My fingers are crossed!!)

  2. Grace

    Go Steven! You’re a week ahead of me! I had my TT March 29, 2018. Also for Papillary Carcinoma and I also googled the hell out of this. Big mistake. Keep on keeping on and thanks for posting your story! I’ve had basically the same experience with the exception that a little hiccup where my parathyroids didn’t work for a couple of days. No big deal. I just took a lot of calcium and gave a lot of blood samples. Actually, the needle bruises hurt more than the TT incision. I’m pretty tired, but my doctor says that’s because of the calcium issue. Should be back to the new normal soon!

  3. Debbe

    Thank you so much for posting this! A loved one is going through this now, with surgery coming in the next few weeks. Please update us as you continue your journey, and have fun being 28!

  4. Chris Bondurant

    Steven,
    Your story sounds almost identical to mine. My wife even stated that you were a younger version of me. I had my thyroid removed 10 days ago on March 30, ’18. Good Friday. Took the bandages off today to see what things looked like. Overall looks pretty good for removing an important organ from ones neck. The area around the incision is rather swollen and hard. Had you heard if that will eventually disappear or am I supposed to do some kind of therapy to that area?

    I haven’t really had a dip in my energy level yet. My doctor stated that it would take a couple of weeks for my hormones levels to drop. I took off 10 weeks from work just so I would be 100% ready to go back. Energy level and meds to a good point. My job is fairly physical so I wanted to make sure I’m ready.

    I will be going on a special low iodine diet in a couple of weeks to prepare for my Radioactive Iodine treatment. Don’t know what it will be like not being around the fam for a whole week. I’m already getting teased about being Radioactive Man. I think I am going to pull the camper out front and live in it until I stop glowing.

    This life event kind of took me by surprise. I’ve always been really healthy and stay fit with ongoing exercise. Plus I’m not on any medication. Not a big fan of pills. This will be a change. You are right about not concentrating on the negative. There are usually two sides to any story. I like my cup half full. Plus if you keep positive about things and walk right beside the Lord, no way things can go wrong.

    I enjoyed reading your story and thoughts. Its good to share one experiences when life events such as these come up. If you have any info you want to share about anything, give me a shout. Remember, your the Ginny Pig here. Your two weeks ahead of me.
    Take care
    Chris

    • Steven

      Thanks for responding, Chris!
      It does indeed seem like we are in a very similar situation as each other.

      I have to do the iodine treatment as well.
      I live in an apartment in KC so there’s a chance I have to stay quarantined in the hospital for 24 hours which would suck, but I’m hoping they will let me stay home.

      I’m a few days away from a month from surgery now.
      Still feeling pretty normal. I have bad anxiety as well, so I think I “trick” myself into feeling symptoms. For example, I’ll stay up until 2 AM and wake up for work, and blame the no thyroid for being tired : ). I saw my Endo Tuesday of last week. He said if there was going to be any crazy changes, I would have already felt them by now, so I’m hoping I’m approaching “adjusted”. It’s a huge hospital with a lot of experience, so I’m thinking they got the dosage right first time. Fortunately for me, and a bit selfish, I do not have a physical job. I do account management and sit in a chair for 8 hours a day, so i’m guessing you’ll feel the energy effects more than me.

      Aside from a few headaches, I don’t have too many complaints. I wish I could post pics on here, because my scar looks awesome.

      To answer your scar question, yeah it’ll be red and swollen and hard for while. My doctor had me remove the bandage 2 weeks after the surgery, then one week of anti-biotic, then after that I could put any oil/medicine on it I wanted. I bought Vitamin E oil, Bio-Oil, etc. They sort of made it inflammed so I switched to a moistourizer. If you google how to massage the scar, there’s plenty of videos. that’ll start breaking up the “hard” stuff underneath. Here’s a pic of my scar about 1 month after surgery. I go back on 4/27 for a scar review and I’m hoping he’s pleased as well! This was taking in a bright bathroom with no filter to give you a true feel.

      https://m.imgur.com/a/WArEq

      • Chris Bondurant

        Steven,
        I was wondering if you have had your radiation treatment yet? How did you feel on the Low Iodine Diet? I am almost done with my first full week of it, and can say that I have not felt any effects of low energy yet.
        Just don’t know what to expect next week fatigue wise. My doctor says I have to be isolated from human contact for one week. Is that your case also? I’m just going to live in our RV out front for a week. (Boring). Let me know how you are doing. If you don’t want to respond via this blog, you can e-mail me direct at zzbonz@yahoo.com.
        Blessings. Chris

        • Steven Criss

          Hi Chris,
          I have not done the Radiation yet. I am aiming for some time in June.
          I live in an apartment, so i might have to spend 24 hours in the hospital so I don’t contaminate my neighbors through the wall. My isolation is only a couple days they said. They did not mention an entire week. I think the low iodine diet is going to suck lol, but it is what it is. I just want to move on with my life now mainly but this is still standing in the way. Overall, I’m still feeling pretty great. Perhaps a tiny bit more tired, but that could very well be attributed to my job, golfing a few times a week, going “out”, etc. I’m sure it’s all relative!! Something I had not considered is that my hangovers seem to be a lot worse, even if I just have a couple of beers. I’ll have to watch that going forward!

        • Tracy

          I am about to go in next week for my Radioactive Iodine treatment (also in the Kansas City area), and have to stay in the hospital for 48 hours followed by me staying in a hotel for 4 days. That is because I have three young kids at home, my youngest is 10 months old. I have been on the LID for a week now, and am a little more fatigued then I thought I would be. Today I stopped taking my synthroid. So I am not looking forward to the next week with this. I hope you are doing well.

          • Steven Criss

            Hi Tracy,
            Best of luck!
            I don’t have to stop taking the synthroid luckily before my pill. Perhaps that’s worth a question to your doctor.

  5. Buddy C.

    Your theme, “Stay off Google” is funny to me because I found this site and your story via Google…. If I had stayed off of Google, I would not ever found your story… Hmmm.

  6. Christina Solis

    Good morning! I found this site this morning on Pinterest and am breathing a sigh of relief! I was told 2 days ago that I would have a thyroidectomy, due to a weird storm of sorts of Graves and Hashimoto’s and an immune system that isn’t having it. I’ve looked everywhere online and several sites say it’s impossible, so I don’t know. It was my first visit with this endocrinologist, but he’s supposedly the best in the city.

    My concern is that I am a glass half full kind of gal, but I also like to be educated, especially when it’s my body. To do any research on this surgery and the aftermath is to find some scary, scary stuff. I don’t know when my surgery is, but he said we need to do it soon. I go to the referred surgeon 2 weeks from today and I’m more confused than scared.

    I appreciate you all sharing your stories and adding the positive…this may be the only source for that!

    • Steven

      Good morning, Christina!
      I did not have any bouts with Graves and Hashimoto’s, or any issues with my immune system, so I’m probably not the best source on the medical side! I know a few people that have had much much much much improvement after getting rid of their thyroid. The whole official Thyca committee suggests a surgeon that does 75-100 a year, which mine did, so that might be worth asking about.

      “more confused than scared” could not be a better explanation for how I felt as well! The confusion and anxiety was 100x worse than the surgery itself. There’s a sigh of relief when it’s all said and done. I felt immediate control of my life again and wasn’t just sitting around pouting and worrying and confused. Something else to consider is that my recent visit to the Endo told me if I had waited another 5 years, it would have been 10x more complicated, and looked at it as a pure blessing that it was caught early.

      Please keep us in the loop! and don’t be afraid to ask a bunch of questions to the doctor! They’ve heard it all before.

      • Christina Solis

        Thank you so much, Steven!! I am now 5 days out of meeting with the surgeon and I am ready to do this thing!! I feel determined to use this event as a reset button and make the most of it all! I will keep in touch and again…thank you all for positive stories!

        • Steven Criss

          That’s where I am currently since I haven’t done my Radiation yet! I just want to get my life back a little and not have to worry about anything anymore, but it’ll come with time. Try and keep yourself busy and enjoy your hobbies. The less time sitting around googling and lost in thoughts, the better. Modern medicine and care is amazing, especially even comparing it to the knowledge/practices of a few years ago.

          • Hi Steven,
            You are spot on about how much is learned in modern medicine over just a span of a few years. Check out my latest post:
            http://www.lifewithoutathyroid.com/radioactive-iodine-not-always-necessary-for-papillary-thyroid-cancer/

            Suggested treatment, such as even needing radiation after having papillary thyroid tumors removed, has dramatically improved since I had my thyroidectomy!
            Hope you are well,
            Sparky

          • Chris Bondurant

            Steven,
            I was wondering if your voice has come back yet? I am 5 1/2 weeks post surgery and am still quite groggly. It takes awhile to get going in the morning too, but never ever sounds like it use to before surgery. I can carry on a low conversation but voice still crackles a bunch. Tonight, I tried to hit a Lionel Ritchie high note and nothing came out of my mouth. Just not there. Have you had any feedback from anyone about this? At my doctors follow up a couple weeks ago, he said my vocal cords weren’t compromised in any way and they should be fine. Hmmm. Let me know. Hope you’re doing well my friend.
            Chris

          • Steven Criss

            Hi Chris,
            I actually had zero voice issues. My voice was not changed at all luckily, so I can’t really speak on that. I’d give it some more time though.

  7. Tracy

    So I am glad to have found this site. I am a Hashimoto’s Thyroiditis patient. I have had bouts of depression and anxiety for years, anger and frustration, lack of desire, lack of motivation, trouble focusing, brain fog, weight gain even when I was working out 6 days a week. I never thought to have my thyroid checked and blamed all of my troubles on a stressful career and babies. fast forward to Nov. 2017 when I was admitted to the hospital for a gallbladder that wasn’t functioning and they found my TSH levels to be at 35. I had been taking an antidepressant to combat my depressive feelings, and it kinda worked. When my doctor saw all the labs and my meds he stopped the use of the antidepressant and did a sonogram on my thyroid, they found a large lump, biopsied, and found papillary carcinoma. December 2017 I had a partial thyroidectomy, they hoped to save some of the functionality of my thyroid. Well, after they checked the half they told me that with the size and scope of the cancer, they had to remove the rest of my thyroid. So Jan 2018, last surgery to remove my thyroid scheduled. In Nov 2017 I started on synthroid. After one week on the medication, my who body felt different. I wasn’t anxious, I wasn’t depressed, I wanted to and would work out again, I had more energy, I was able to sleep, and I had desire again. I was able to feel again for the first time in who knows how long. It was a blessing to have someone look into my thyroid, find a problem, and fix it. It has made all the difference. I haven’t taken an antidepressant since Nov 2017 and am better then I have been. Today I am struggling with the LID and Radioactive Iodine treatment. But I am confident after that I will be able to follow up on my medication and get all of my issues addressed. I may never be the same again, but I will be better then I was last year.
    Also, I changed my diet in Jan 2018, going gluten free and doing a slow elimination to the paleo diet. Since starting it, I have had good luck with my weight not going up, and my body not being so sluggish. I have been more regular then I was before, and my body doesn’t feel as broken. I had a few warts on my fingers and feet, and those are beginning to fall off, something that a dermatologist couldn’t make happen. My skin is clear and looks more youthful. I should also mention that I was breasfeeding my youngest, and that is the reason for the delay in treatments. I am ready for this part of the journey to be done and to move on with my life, working toward a healthier future. Hopefully I can get my medication right and get rid of the dry skin patches, hair loss, dandruff, feelings of cold, and general moodiness.

    • Christina Solis

      I’m so sorry for what you’ve gone through, but what an amazing, positive testimony!! You and everyone on this page are a huge source of relief.

      My total thyroidectomy will be scheduled tomorrow, when I meet the surgeon, and I keep coming back to this site whenever I get anxious or some idiot in my family tells me a horror story that happened to a friend of a friend. You all are keeping me sane!

      • Tracy

        There are always those that will tell you all the bad things that could happen, and leave out all of the good things. I never knew how important my thyroid was l, or how much it was hurting my body until they took it out and put me on synthroid. With it, there are small side effects that I listed above. But the good things that have come from it are so much bigger and better. I am not angry, my kids aren’t afraid of me, my husband said he feels like he has his wife back, he said that I am more normal then I have been in years. It was almost night and day. I will take some dry skin and meds over how I used to feel any day. Good luck to you for the future! There are good things to come!

      • Hi Christina,
        We hope your surgery went well 🙂
        Here are my post-thyroidectomy notes/thoughts. Let me know what was same or different for you!
        http://www.lifewithoutathyroid.com/post-thyroidectomy/

        Love,
        Sparky

        • Christina

          I am 4 weeks today and feel amazing!! I’m scared to hear that this might end, but I had to check in! The surgeon said that my thyroid was one of the largest he’d ever seen and the surgery lasted 5 hours! But, I felt better an hour after surgery, pulling my IV to the bathroom, than I did walking into the hospital that morning. I was only sick for about 5 weeks, but that’s another story! Since immediately after my surgery I had zero pain and only one weird thing with low calcium levels. I am 41 and don’t just feel better since before surgery, I feel better than I did before my 30’s! Please, please don’t tell me this is gonna go away! I feel fantastic!

  8. Donna

    As a mom of a 15 year old boy scheduled for a TT tomorrow, thank you!

  9. Jill

    Great idea, share good stories! I had a thyroidectomy in 2005 and I am doing just fine. I was pretty healthy before but now I take even better care of myself and am now eating better and practicing mindfulness and meditation. My advice is to really listen to your body as you are adjusting to your thyroid medication, get an endocrinologist who will listen to you and be willing to help fine tune your dosage.

  10. Bern

    Hello Steven (and all),
    Thank you for sharing your stories. I am scheduled for Monday, Dec 3rd and have been on an emotional roller coaster the past two months waiting for my date. Nervous about voice loss, and hormone level adjustments. I will be having a TT due to cancer, right now they say lymph nodes look good and may not need iodine therapy after. Did anyone have calcium issues, this is my biggest fear as I have become used to the thyroid level fluctuation due to hashimotos.

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