Sunday, November 7, 2010

That Other Thing.

I'm setting the snarky humor aside on this one.  (Well, most of it.)

This wasn't an easy post for me to write, and I've been going back and forth for a while about whether or not I want to share this part of my personal history.  I've also spent several days writing and rewriting this story, as I want to make sure to tell it the "right way".  Some part of me, the part that won this internal debate, feels that this story needs to be told - because I hope that sharing it might help someone else.  And, unfortunately for me, the story needs visual aides.  You've been warned.

Aside from type 1 diabetes, I also have hypothyroidism.  It's another auto-immune condition, and it essentially means that my thyroid gland is not making enough of the thyroid hormone.  It is fairly common in women, and is also common in those with type 1 diabetes (as it seems a diagnosis of one auto-immune condition makes it more likely that you'll have another).  It's usually no big deal (compared to diabetes, I guess) if you catch it in a timely manner.  You show a few symptoms, they prescribe you some Synthroid, and you're golden again. 

Unfortunately, "no big deal" wasn't the case for me.  It took a significant toll on my physical and emotional well-being, and I can say with reasonable certainty that it caused me to become a totally different person for a few years.  It felt like I didn't even know the person I had always been.

I was diagnosed sometime in 2003, and I'm reasonably certain that my thyroid had started to slack off long before then - years before.

Here's why I'm reasonably certain of that.

Aside from the whole diabetes thing, I was a healthy person up through college.  See?  Here I am in high school - actually, this picture was taken at diabetes camp, the last year I went.  I had permed hair.  (It was the early 90's.  Don't judge.)  I did cheerleading.  I took Tae Kwon Do (I wasn't kidding about that black belt).  I tried some ice skating lessons, as well as a good decade of dance classes.  I was a happy, active, and optimistic person, much as I am now.

I went off to college out-of-state, and things began to change.  My mom has described it as "sending me off to college one person, and returning from the first year as someone completely different".

Case in point: here I am, junior year of college.

Aside from my gothy transformation, you can tell that my skin had lost some color.  I also gained weight, but I attributed that to different eating habits and less exercise (as I was then living on my own, several hundred miles from the parents who had encouraged those good habits).  I never felt like I got enough sleep, and I would frequently miss my morning classes (which, again, is "typical college behavior", and so I didn't think much of it).  And here I am, about a year after that - notice that my skin is even paler, which hardly seems possible, and even my eyebrows have thinned out.

Aside from the physical manifestations of undiagnosed hypothyroidism (which for me were thinning hair, paler skin, relentless exhaustion, feeling cold all of the time, and weight gain), it also had a significant impact on my mental health.  I dealt with a great deal of depression back then - some of it diabetes-related, and some of it not.  The smiles in both of these pictures are misleading, as I never truly felt happy during those years in my life.  Moments of contentment existed, but in between those times, I felt lost.  I felt trapped in my own life, and wasn't sure I could do it anymore - or that I wanted to.

I did things during that time of my life that I wouldn't have ever done previously, and I wouldn't ever do again.  I know that college is a time for stupid decisions, but it was more than that.  The worst part may be that I never thought anything was wrong with me.  I knew I was a changed person, but I felt that was because the realities of life had finally settled on me, and this was how I was intended to exist.

One thing I always did, as a child and up through my teens, was to express myself through journaling and art.  I recently found some of that stuff from my college days, and even I can't believe some of what I wrote and drew.  (The picture below is the most tame one I could find.)  If I could time-travel myself back and give myself a reassuring hug, I would.  It all turned out okay, but it was hard to see back then that it ever could be.  Instead, I drew things like this:

By the way, I'm not wearing a headband
in this picture.  I had bleached my hair,
and dyed the bangs black.  Badass!

The aforementioned "stupid decisions" included things like dropping out of college (I went back and finished later on), and moving from Nebraska to Connecticut to go live with a dude I met on the internet (I eventually realized how dumb that was, and moved back).  Stupid decisions also involved hurting myself physically in ways I won't share here and would rather forget, but I can say that there are still marks on my arm to remind me. I can very vividly recall the night my mom noticed what I had done. Watching my mother's heart break right in front of me is something I won't ever forget, and I unfortunately can never take back.

The happy news is that I finally did "come back".  Getting my thryoid levels straightened out with the proper Synthroid dosage (and subsequently adding in Cytomel, too) got me back to feeling like myself; and the support of my parents, who never gave up on me even when it would have been so easy to, helped me to come out the other side.

Why my hypothyroidism wasn't caught early on, I'm not sure.  It's a big part of the reason I refuse to see one of the endocrinologists in town - I was under their care as this change took place.  It took an endocrinologist in Connecticut to get an accurate diagnosis. 

That diagnosis was a tough one for me.  I was already struggling with the idea of a lifetime of diabetes (even though I'd already been at it for 17 years), and having to add "pills you'll take every day for the rest of your life" didn't go over well.  It upset me that another one of my organs was giving up.  First my pancreas, then my thyroid gland... what else was next?  It felt like I was falling apart.

But, like most things, the body and mind adjust to the "new normal".  And I learned a lot of things:
  1. Doctors aren't always right, and sometimes you need a second opinion.  And a third.  And maybe a fourth.
  2. Severe changes in personality aren't just "life hitting you", and there's nothing wrong with asking for help.
  3. Some of the toughest parts of life can have good outcomes - you just have to hang in there for a bit to see them.
The good I can see from living through this situation is the ability to empathize with and help others who are going through tough times, depression, etc.  It's a large part of what I do when I respond to Online Diabetes Support Team questions, and it's a topic that catches my eye on diabetes discussion boards. 

I also learned that you're never alone.  Sometimes you're just looking in the wrong places for help.


  1. lots of love for you, kimface. i'm glad you "came back" so to speak, and i'm even more glad you're my d-bff. where would i be if you had continued to be a death-kid (as we so lovingly termed them in high school)? i'm not sure, but i'm glad i never have to find out :D


  2. Nicely written. This 'D'isease comes with a lot of buddies and although it takes a lot of guts to write something like that, I can sympathize. No I don't struggle with thyroid problems but I have other buddies that require daily meds as well. Kudos to you. great post.

  3. This is a brave and beautiful post, Kim. Thank you for writing it, and sharing it with us all.

  4. I relived some of my own years between onset of hypothyroidism symptoms and actually being diagnosed through reading this. Only in my case, I developed type 2 diabetes as a result of this untreated hypothyroidism. I don't like the person I was during most of my 20's. But I wasn't myself, really.

  5. Thank you for sharing this. I think we all have things about our lives with these conditions that we don't want to share and yet don't want to carry either. I know I have things that may or may not every see the light of day via a blog post, and that's why I am so proud of you for putting this out there for all of us to see.

  6. Thanks for taking this deep dive to share your experience. As the mother of a CWD, this is insight I really need.

  7. I agree; this is a brave, well written post. But more, it is an important one. Thank you for sharing. You have, no doubt, helped others. Well done!

  8. I'm so glad you wrote this; I'm sure it will help someone out there. And I'm really glad that you're feeling like yourself again.

  9. Wow, awesome post, excellent writing of tough subject matter. I went through so many of those feelings myself over the last few years, I can sympathize with you. You're so brave for putting it out there, telling the world, going for the bigger goal of trying to help others. Awesome for you.
    So glad you are back to the person you want to be.
    Breaking your parents hearts, but then realizing that they never left your side, and never will, that is a very powerful experience to go through.
    Thank You very much for writing!!

  10. My daughter also has Type 1, hypothyroidism and Celiac disease... Luckily, her hypothyroidism diagnosis was not delayed like yours. Glad that you came out of OK.

  11. Thanks for sharing, I could empathize with your pain just from reading this, diabetes is such a tough grinding disease to deal with that additional pressures of hypothyroidism makes life just that little bit tougher.Its great to see that you are handling it well

  12. My daughter also has hypothyroidism. Of course being the oblivious parent I didn't notice things were off until about after a year. Her hair looked like shit and wasn't growing. The endo should have picked it up though.

    Thanks for writing this. It is a common add-on disease with T1 Diabetes and many people have it but no one talks about it. Your post about having it and being on your own in college was a good educational read. I mentioned hypothyroidism today on my blog too, however no where near as well as you did!

  13. Beautiful & fearless!
    Thank you for sharing your hypothyroidism and how you struggled with us!
    Somethings are really hard to share, and the fact that you shared this part of yourself with us has helped every single person who reads your post
    And as always, thanks for being so awesome!

  14. Awe my comment didn't show up yesterday :( I wanted to thank you for sharing with us. My hypothyroid diagnosis was very similar to yours.

  15. just a few words and just to tell you that I'm type 1 since 1967 and hypothyroid since 2OOO... my was thin but I didn't gain weight! And hello from France!

  16. This post is helping me already, and there's only speculation me having of a thyroid problem. Thanks for sharing, Kim. Your insight always leaves me in awe.

  17. I felt every word you wrote. After being diagnosed with Type 1 Diabetes in February 2010, Grave's Disease in April 2010 and Celiac Disease in July 2010 (all autoimmune), I understand the depression and the fear. Thanks for sharing.

  18. Thank you for sharing your story Kim. I was diagnosed with Hashimoto's Hypothyroidism in the 5th grade. I can't imagine how I would have managed in college. I had one responsibility at the time, which was going to school, and I couldn't even do that because I just couldn't get out of bed. Although I have the disease too, I just never realized how much it could affect a person psychologically if untreated. I'm really glad you figured out what was wrong and everything turned out alright (although you did look pretty bad ass with your bleached hair and deftones shirt...just sayin') ;)


  19. Hey, Kim... Thank you so much for writing this. I've come back to it now because I honestly feel my world is out of whack, and some if not most of the blame can be laid on my overly-slacking thyroid gland. Not to bore you with details, but I'm feeling much of the same things you're describing here and it's honestly starting to scare the Eff out of me... Just not feeling like myself. I've been on Synthroid since my mid teen years and have been "golden" on it for the most part since then, but feel things are totally off now and I'm trying to get back to where I need to be. Anyhow, your words and sharing is incredibly helpful and - once again - I'm honored to say I know you.

  20. Hi Kim, reading your story takes me back to the days when I got diabetes, or when I got diagnosed, 13 years ago. I can still feel the feelings while reading your post.
    We do some stupid things during those tough phases in life (I didn't communicate at all with my parents and brother at home for a whole month after the diagnosis). But maybe it's just the way we have in that moment to deal with that new and life-changing situation.

    Anyway, it got my attention that you have hypothyroidism as well, since recently I wrote a post about The 21 Causes of Diabetes, and hypothyroidism was one of them.

    If you want to take a look you can read it here:

    Thank you for sharing your experience

  21. Kim,

    New time follower of yours. Sent a post earlier today in response to your childhood and diabetes - I was diagnosed at 9 years old.

    I could totally relate to your comment, "It upset me that another one of my organs was giving up. First my pancreas, then my thyroid gland... what else was next?" as at 18 years old and a freshman away at college, I was diagnosed with uterine cancer and ended up with a hysterectomy. I also felt betrayed by my organs. I was in the hospital and then at home for 4 weeks as the surgery and recovery was more difficult with diabetes. When I went back to college, I felt like I would be dead by 27 - diabetes at 9, cancer at 18, what would hit me next in 9 years? I also made some very poor choices as I figured I might as well live my life my way, I was going to die anyway. I made it through college in spite of myself (and with honors!) and graduated with a degree in Psychology. My first job was at a hospital working with kids emotionally who had physical afflictions. As you stated, one's empathy is greatened by experiencing difficulty.

    I lived through my 27th birthday and my 37th and 47th and next year will be 57! Glad I didn't give up on life.

    I was diagnosed with hypothroidism a few months ago after complaining to my doc about gaining weight for no reason, being tired and emotionally down. Am feeling better now that I'm taking the generic synthroid and was also told of the tie in between diabetes and low thyroid.

    Kim, than you for sharing your insight and your humor, empathy and intelligence.


  22. I am so glad to hear that you are feeling better, Mindy! (I left you a comment response on the other post, too.) :) And thank you for your kind words. They mean a lot.

  23. I think this is an older post, but I was excited to read it! I had this SAME problem when my thyroid gland failed at the end of my college experience. I didn't get to hurting myself, but it was still awful. I was practically bipolar. My husband and I got engaged and then married during all of that. Quite frankly, after all I did and said without even realizing, I'm surprised he's still married to me. Ugh. The docs checked my thyroid levels every 3 months with my A1c but when I was diagnosed my hormone levels were ten times higher than normal. What? How does that even happen?? Anyway, glad to know I'm not the only one who has been given the hard lessen that hypothyroidism is just as serious as any other auto-immune disease. I hope more people will get their thyroids checked when experiencing depression.

  24. Kim, ur amazingly brave!! Thank u for sharing ur story!! I don't have thyroid issues but I do have other significant health issues that help me to relate to ur story. U've inspired me to keep seeking answers if something doesn't feel right to me.


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