Life After Thyroid Cancer

Craftsy

For those that don’t know, I had thyroid cancer about 4 1/2 years ago.  It made changes to my life that still affect me & will always affect me.  September is thyroid cancer (thyca) awareness month & you may notice some color changes to my background.  Those are the ribbon colors for thyca survivors – blue, teal, & pink.  I’d like to share some facts about thyroid cancer with y’all today.  I’ll also tell you a little about what my life is like since I lost my thyroid to cancer.  There is life after thyroid cancer, sometimes you have to remember to live it!

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How Important is Your Thyroid?

It’s vital, to say the least.  Your thyroid produces hormones, T3 & T4, that you cannot survive without.  I have to take a little pill everyday for the rest of my life to replace this hormone.  Well, it replaces the T4, which usually converts to all the T3 you need, but not for everyone.  Some people need to take both hormones.  Personally, I think everyone without a thyroid should take both, your thyroid produces both for a reason.  But then again, I’m not a doctor.  Anyway, you can read here for more information on what the thyroid does.

Some people loose their thyroid because of other reasons.  You can have a goiter that grows so big it affects your breathing & swallowing.  These are usually cause by an autoimmune disorder like Hashimoto’s or Graves disease.  There are some people that are born without a thyroid.

The hormone that the thyroid produces affects nearly every cell of your body.  So, yeah, it’s very important.

Thyroid Cancer Awareness Month

My Year with Thyca

“Thyca” is short for “thyroid cancer”.  It’s a term people affected by the disease use & it’s also shorter to type!  I’ve added a page under the “Life Lived” tab called “My Thyca Journey“.  It’s all about the year I had thyroid cancer & it’s long & has no pictures.  I thought someone might benefit from reading my story, so that’s why it’s there.

That’s where you’ll need to look to find out more about what I experienced the year I had thyroid cancer.

My Life 4 1/2 Years Later

I’m sharing this to help others affected by this disease understand that it has life long implications.  I had a golf ball sized follicular carcinoma that was mostly encapsulated, so It had not spread.  You can find more information about thyroid cancer at thyca.org.

There are too many people that have the idea that thyroid cancer is “the good cancer”.  That’s because, for most people, it’s highly curable.  You still lose a vital part of your body that requires taking medication for the rest of your life.  Pills cannot fully replace a body part.  No cancer is good, period.

The Medicine

The generic name of the medicine I have to take is levothyroxine, but I take 150 mcg of the brand Synthroid.  A brand named drug has a tighter tolerance for the ingredients used, which is why my doctor insists I take the brand name.  Less ups & downs.  I have to wait an hour before eating or drinking anything, other than water, after I take it.

This required some changes to my schedule because I can’t get up at the last minute & grab breakfast on the run. My regular schedule is to wake at 6 a.m., take my meds, go potty, & lay back down until 7 a.m.  Sometimes I fall back asleep, sometimes I don’t.  It’s hard for me to function until the medicine takes affect & I’ve had some coffee!

The doctor tells me this builds up in your system & it should take a couple days of missing the medicine before I feel the affects.  I personally can tell by 2 p.m. or so if I forgot to take my meds because I have a hard time staying awake.  Sometimes I can even feel it kick in in the morning.  My heart rate will suddenly go up & I feel a little rush of energy.

The Checkups

For the first 3 years after thyroid cancer, I had to visit the endocrinologist every 3 to 6 months.  I go one week to have blood drawn, then to see the doctor the next week.  If my levels were good, I could wait 6 months for another check up.  If not, I went back in 3 months.  Last September I got the okay to wait a year for a checkup.  This was wonderful news because usually you have to wait until you’re 5 years out for yearly visits.

Regardless of how often I visit, I will have to see the endocrinologist for the rest of my life.  This always requires blood work first.  My family doctor likes to do extra blood work to check on things like cholesterol levels.  She also likes to keep an eye on my heart rate because all of that is affected by the medicine I take.

After thyroid cancer, your TSH levels are suppressed to keep cancer cells from growing back.  This makes levels look like someone who is hyperthyroid, but I’m eternally hypothyroid since I have no thyroid.  You can read more about this here.

The Scar

Here’s a very close up picture of the scar on my neck…

I had minimally invasive surgery, which left me with a smaller scar than some have.  I went to a specialist, but not because I wanted a smaller scar.  There are lots of important things in your neck & I didn’t want any more damage than necessary.  Some people will have a scar across the whole neck or down into the chest area.  It depends on how large the tumor is & if they have to take out lymph nodes as well.

I never try to cover my scar because I’m happy to have a scar.  That means I’m a survivor.

General Health

Most people would look at me and think everything is fine.  For the most part, it’s okay.  I have a near constant feeling behind my eyes of tiredness, if that makes any sense.  My body aches on a regular basis & when I’m tired or stressed it’s worse.  I experience “brain fog” on a regular basis, which is also worse when I’m tired.  There’s nothing like talking to my students & completely going blank in the middle of a sentence.  So fun.

I usually only have so much energy to get through the day, so I have to gauge how I feel that morning.  If I’m having what I call my “zoomy” time, I know I can tackle more things that day because my energy is up.  These days are great, except I can’t sleep very much.  My heart rate feels like it’s going too fast even when I try to lay down & rest.  I still feel tired, but can only sleep for about 4-5 hours a day, if that.

When I have a hard time waking up & getting my body to move, I know my energy is limited, so I need to do less stuff.  If I try to do more on a slow day, I wind up not being able to do much of anything the next day.  Sometimes I have a whole week or two of feeling like this.  It really impairs my brain function so I do things like pour orange juice into my husband’s coffee cup after I’ve added the creamer & sugar.

I also have either PCOS or endometriosis.  The doctor doesn’t know for sure without going into my belly button & having a look around.  That has an affect on everything as well.

In Conclusion

While all this may sound horrible to some & some will relate, I try not to let it control my life.  I do have to plan out activities around how I’m feeling that day, but it’s just part of my life now.  Even if I don’t have control over what my body may feel like from one day to the next, I do have control over my attitude.  That’s why I choose to have a “life lived!”

If any one has any questions about my experience with thyroid cancer, please feel free to leave a comment or email me.  Y’all have a great Labor day weekend, stay safe, & remember to check your neck!

 

 

 

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10 comments

  1. Joyce says:

    Kristie, I am so sorry you have to go through this. I can totally relate though my tumor was in my pancreas. I was never so scared in my life when I was told what was causing my severe case of pancreatitis. The surgery got the whole tumor but I only have half a pancreas so like you I must take a pill everyday in order to digest food and I have really bad, pain filled days if I eat too much fat or fiber. But, I also believe in living life to the fullest so I try to be as positive as possible. Keep hanging in there and keep on winning.

    • Kristie Cook says:

      Thank you Joyce! I’m happy to hear they were able to get all of the tumor, sorry you have to rely on a pill as well. We are survivors & we are strong! Keep having a life lived! 🙂

  2. Skye says:

    Hi, I thought I’d leave a comment, I haven’t had thyroid cancer but have suffered from both hypo and hyperthyroidism, and still do. Alot of what you’ve said makes so much sense, our thyroids are so important to so many areas of our body. It’s also confusing for doctors because of how many different things it could be. I’m so glad you’re on the road to recovery and you’re sharing your story for others xxx

    • Kristie Cook says:

      Thank you Skye! I never had any issues with my thyroid until I found the lump. It’s an important little gland that I think doctors need to study more. I hope your levels are good & you remain in good health! 🙂

      • Skye says:

        That’s one thing I think they need to research and study further, the different hormones and levels and their interactions with each other, my T3 + 4 levels show up as normal but I get so many symptoms, but that means no medication, just management of symptoms. Luckily now it’s on my watch list, when so many people don’t know about it.

        • Kristie Cook says:

          Skye there are more resources here: https://www.teadoddles.com/thyroid-cancer-information/ This is under my “Life Lived” tab in the menus. I recommend checking out Very Well.com. Mary Shomon writes all about thyroid issues, not just cancer. It’s important to be informed because most doctors only look at the numbers. If yours are in a range considered “normal”, they will insist it’s not your thyroid. It’s very frustrating!

  3. Leanna says:

    I know that the endocrine system sends the messages to all the other systems. Congratulation on finding the lump and being treated for it. I am sure having to be under care is challenging as would the energy level differences.

    I can only imagine. Wonderfully written and informative article. I enjoyed the read.

    • Kristie Cook says:

      Thank you so much Leanna! It is a challenge but life is full of challenges. This is one that makes me appreciate life even more! 🙂

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