Dos and Don’ts for the Thyroidless

10 Mar

Throughout my thyroid cancer experience, I have had unlimited amounts of support from my family and my closest friends. I have even been supported by new friends online who are having the same experiences. I am one of the lucky ones. I only have to deal with the annoying “helpfulness” of acquaintances and strangers. So, to help those of you who know someone who had thyroid cancer or is struggling to overcome uncontrolled hypothyroidism, here is a list of dos and don’ts.

DON’T EVER SAY…

“I know someone who had thyroid cancer and they’re totally fine!”

Would you say that to someone whose house burned down? “My friend’s house burned down and they are fine now!” No, you wouldn’t say that. So don’t say that to someone who also just had a devastating, life-altering experience.

“If you had to get cancer, that’s the best one to get, right?”

This one is my favorite, because even I said it when I was first diagnosed. What it really means is, “I’m not going to look sick to you and I probably won’t die from this, so people around me won’t have to feel guilty and uncomfortable.”

“At least you are alive.”

Again, is that something you would say to someone who told you their house burned down? Yes, I am happy I am alive. At least we are ALL alive. That doesn’t mean it is okay when crappy things happen to us.

“Have you tried (fill in the blank here) to lose weight?”

No, I haven’t tried that! Wow! What a lifesaver you are! Let me assure you – I have tried EVERYTHING.

“Were you a smoker?”

No. But would that make you feel better about my diagnosis? Like I brought it on myself or something?

“Not everything is because of your thyroid.”

You’re right! Not everything! Just my body temperature, my metabolism, my hormone regulation, my digestion, my ovulation, my energy level, my brain processes, my hair, my nails, my skin and MY MOOD.

DO SAY…

“What can I do to help?”

We are tired. ALL THE TIME.

“…”

That’s right – just don’t say anything. Listen to us vent, and then just don’t comment.

“It’s okay.”

Be there for us, and cut us a lot of slack. Sometimes we get overwhelmed and we overreact to things. Imagine waking up one day and not having any control over how “off” you feel. Imagine having the rug pulled out from under you and everything you have ever known as normal is GONE. Sometimes we just don’t have the energy to pretend that we are the same. We’re not.

I am doing well…I really am. And I know how blessed and lucky I am. I know how much worse it could be, and I am grateful for what I have. But that doesn’t mean I don’t miss life as I used to know it. That’s why I keep fighting. I am working so hard to put the missing pieces back together, and I have to believe that someday I will. Just don’t tell me that you know someone else who did…and now they’re totally fine.

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20 Responses to “Dos and Don’ts for the Thyroidless”

  1. Jenifer Mangione Vogt March 10, 2012 at 6:50 pm #

    A brilliant post. I stopped my Thyroid Cancer blog, but I’m still following you! I have an art blog you can follow here: http://www.FineArtNotebook.com if you’d like. I just posted this on my Facebook page – it’s all true and I can relate to everything you say here! Thanks! Jenifer

    • sarahyoung1119 March 10, 2012 at 6:51 pm #

      Thank you Jennifer! It’s us against the clueless, right? I am following Fine Art Notebook…hope you are doing well!

      • Jenifer Mangione Vogt March 10, 2012 at 7:01 pm #

        Sarah – this is such a great post. I just read it again.

        I want to also comment that last week I was out with my mother and I was talking about how frustrating the weight gain is and how judgmental people are about it and how angry that makes me. She responded, “Well, I guess not angry enough!” By this she meant that I wasn’t doing enough to try to lose the weight.

        I just looked at her, my mouth open. I didn’t bother to explain that I’m up every morning at 4:45 am and at the gym. That some weeks, I’m eating less than 800 calories a day – just to lose a pound. Or, about how I pushed myself so hard to lose this weight that I ended up with a stress fracture in one foot and a bad sprain in the other knee resulting in 6 weeks of not being able to work out at all!

        When I go out to events, which I must do often, I just get people looking and judging me because of my weight – they have no idea how difficult this struggle is.

        And, the hair?! My hair was my best feature. Now, sometimes, I want to cry when I run my hands through it. It’s so dry and brittle. I’m almost all grey now, too. Thank God for L’Oreal.

        So, please know – I can totally relate to you and I’m just grateful you posted this. I do everything, everything to maintain a positive attitude – and I believe in that. But, sometimes, I think it’s OK for us survivors to accept and come to terms with some of the really bad results of this cancer.

        Best
        Jenifer

      • sarahyoung1119 March 10, 2012 at 7:08 pm #

        I am so sorry that your mother said that to you. I am sorry for every time I, myself, judged someone for being overweight. All I can say is, I believe you. You’re not crazy. And I pray that it gets better and that someday you and I can be normal again.

  2. jannajones73 March 11, 2012 at 4:54 am #

    I was driving to the salon today to get my hair highlighted and thinking about people telling me, “They say if you get cancer, this is the one to get,” and how I wouldn’t wish this on my worst enemy. I was formulating a blog in my head, a temper tantrum blog, about how thankful I am that I should not die from this at least not for many, many years to come (mine was stage II, 4 cm, 10/13 lymph nodes positive, so good chance it will return some day) but at the same time my whole world has changed. While I was under the dryer at the salon my phone notified me that I had a new email and it was the notice for your new post. I read it and couldn’t believe it. You wrote so many of the same things I was thinking about.

    There is a national shortage of Thyrogen so I had to go off Levothyroxine for radiation. My radiation was on February 3rd. Since 5 days post radiation I have been on Synthroid 150 mcg and I took Cytomel for 3 weeks. I felt quite decent on the Cytomel, but since my doc had me stop taking it I am back to be exhausted, my joints hurt so bad I have dreams about how bad they hurt, I have frequent muscle cramps and I am back to being the ditz of the century. Oh and the weight, I am 3 months postpartum now but I lost all my baby weight prior to surgery, but now it is a coming back on and so fast! We are rechecking my labs on the 23rd, so hopefully then there will be an increase in my Synthroid dose. I am an ER nurse and I don’t even know how I will go back to working 12 hour shifts. I know things should get better, but I just was not prepared for this.

    I wanted to say thank you for sharing your thoughts, it was a great post. I read it a second time and cried. You just nailed it!

    • sarahyoung1119 March 11, 2012 at 1:56 pm #

      Thank you! I wish we didn’t all have to feel this way, but it is helpful that we can all understand each other! I can’t believe you went hypo for RAI. You deserve a medal for that! I am waiting for Thyrogen even to have a scan. I would get bloodwork as soon as possible and beg for Cytomel if I were you. It helps a ton. I don’t feel perfect, but I definitely feel functional on the Synthroid/Cytomel regimen.

      • jannajones73 March 13, 2012 at 11:08 pm #

        I did not intend to go hypo for RAI. I was 6 weeks post surgery (8 weeks postpartum) and my TSH was 16.9 and the Thyrogen was still at least a month out. With how extensive my cancer was both my endo and my surgeon thought I needed to get the RAI ASAP. So when my TSH came back at 16.9, my doc and I decided since I was more than half way to the TSH of 30 they like for RAI, to just go for it. I got the RAI a week later. I did not expect it to take this long for me to rebound. I have spoken with my doc and he is insistent on waiting until the 23rd to draw labs and then a week later I will see him. If there isn’t a significant change in how I feel by then I will beg for the Cytomel. I hate that anyone else is going through this but it is nice knowing someone else truly knows how I feel. I have been going back through your story and reading it. Thanks for taking the time to share it.

    • peggy chandler July 5, 2012 at 1:58 am #

      Are you sure some of the cramping is not from low calcium? After thyroid surgery your parathyroids might have been cut out or damaged, can cause severe cramping and joint pain. I know how you feel!
      I would get calcium checked if I were you.

      • sarahyoung1119 July 5, 2012 at 7:27 am #

        Hi Peggy! I have had my calcium checked several times…a perfect 9.2. I take calcium supplements too. I have most of my pain after exercising. It’s like my body aged 20 years!

  3. Melissa Moreno July 3, 2012 at 7:56 pm #

    This is an awesome blog! I stumbled upon it by accident and it’s just what I need! Thanks!

  4. Anna September 25, 2012 at 12:16 pm #

    This post is awesome, and the reason I began following you some time ago! Please return the favor and follow me too! I’m trying to get my blog going…http://thyroidwhat.blogspot.com/
    Appreciate you and thoroughly enjoy your blog!!

  5. elainesantello July 5, 2014 at 10:16 pm #

    Thank you for this blog!

    I also heard that this was “the best cancer to get” from the endo who gave me my biopsy report. I was so scared, but I laughed myself out of the building saying “best cancer!” to my (two-months-new) husband, trying to be brave, because a cancer diagnosis is very very scary. Granted, papillary thyroid cancer has a very low mortality rate, in the short term. But the initial diagnosis of cancer-the big C- is so frightening. I went through a time of re-evaluating and re-affirming all of my most important relationships, pre-op (total thyroidectomy).

    Post-op, I struggled with energy and mood levels. In the days right after the surgery I had some very icky days when I felt nobody understood my recovery process. I tried to put on my game face but I felt angry and sad.

    At one point a few weeks after my first I-131 treatment, I was in my elementary classroom nearly fainting, and an aide had to come take over the room so I could call and be driven to the hospital by my (5-months-new) husband. I recovered my TSH “balance” after some insistent and aggressive health-care-industry nagging. Turned out I should have been taking not methimazole but levothyroxine or the brand/generic equivalent.

    Anyone had experiences like this?

    • Sarah Young July 6, 2014 at 9:05 am #

      Thank you for sharing your story! I am flabbergasted that they have you an anti-thyroid medication post-thyroidectomy. That is dangerous and must have been very scary for you! I hope that you have found good health and some sense of normalcy now!

      • elainesantello July 7, 2014 at 11:16 pm #

        Thank you for the outlet! And the response also! I’t been 5 years since the thyroidectomy but that experience has stayed with me (clearly). I’ve learned to always ask for a second opinion and also to be my own first and best medical resource. Now that my thyroid levels are stable I feel pretty good most of the time but I have to be prudent about how I spend my energy each day. As in; before thyroid cancer I was in grad school which was about a 30-hour-a-week commitment plus working @ 30 hours a week, and for many years before that I maintained a similar schedule. Now I’m lucky to make through my 45-hour work week!
        Also thanks other bloggers for the links to their blogs. And Sarah, I hope you are also feeling well. Thanks for sharing your experience!

  6. ajxpressionz July 10, 2014 at 5:30 pm #

    This is the first article I posted on my new blog at WordPress (ajwritz33480pb). Your written voice is so clear and the anger and frustration come through clearly. I ate up every word.

    I began my journey 29 years ago with papillary Ca. Since that time, I have had 5 recurrences and 2 of renal cancer. My surgeon could not believe at age 26, I could have thyroid cancer bc the lump appeared literally overnight (one of the many tumors had finally hemorrhaged). The female endo I saw thought it could be Thy Ca; she did not want to stick a needle in my neck for fear it could spread and sent me to a surgeon.

    When I went for the consult, he stepped out of the exam room to make a call but left the door open. I could hear him speaking to another doctor: he also planned a round of golf with the guy.

    He sauntered back into the exam room where I had been patiently waiting. He said I needed surgery STAT and was bringing in another surgeon to assist him; he had planned a surgery for next week.

    I was appalled at being handled like a piece of meat. I said, “Are you kidding? Why would you schedule a surgery without consulting with me first to see if I wanted a second opinion?”

    I got out of there as fast as I could I did not want this aggressive, egomaniac on my team. At this point, I realized I would need a team to follow up and work together with me. He clearly was not kind of that doctor.

    I got a second opinion. I went to the best hospital and consulted with the Chief of Surgery. He thought (as I had already stated) I could not possibly have cancer but the thing on my neck had to come out.

    He went in as if he was doing a normal thyroidectomy with an incision at the base of my neck. After 5 hours, he went to the waiting room, and told my assembled family, “I did the best I could given the incision I made, AJ has well-differentiated papillary carcinoma from ear to ear. She has probably had it since she was 16.” That would be 11 years at the time of Dx.

    I will tell the rest of my story on my blog. There is no sense hogging yours. My story is astounding.

    But the best part is through thick and thin; being my own best advocate; I am still here.

    Best wishes to you and all who come here on their journey!

  7. Jill Attenson Gurfinkel March 24, 2015 at 2:57 pm #

    I love this post! You express what most of us feel so perfectly! Thank you!

  8. Limner April 8, 2015 at 10:55 pm #

    I want to cry. Self-pity. I have not felt well since and even before losing my thyroid gland. My entire body is . . . My primary care physician is still adjusting my Synthroid dosage, and I’m only feeling worse. I should feel better after two years. Right?

    My therapist pointed me here today. The horrible symptoms I’m plagued with are listed here. Thank you. I will schedule an appointment with an endocrinologist tomorrow. Thank you. (More than you know, I thank you.)

    • Sarah Young April 8, 2015 at 11:29 pm #

      You are not alone, and you’re not crazy. I wish you the best of health and thank you for reading!

  9. Lisa Steller January 16, 2016 at 1:16 am #

    Love it…atlast

  10. Kate Stirek March 15, 2017 at 1:23 pm #

    I’m 6 weeks post total thyroidectomy. Your blog is awesome! Thank you for the great info! I am printing out your do’s and don’ts…they are spot on! Anyone else have voice issues? Surgeon says vocal cords were not damaged but voice very soft and low. Kind of a struggle to talk.

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