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Thy-What?!: The Beginning
It was 1991 and I was 19, just finished with my freshman year in college. I was getting ready to spend the summer as a counselor at a sleepaway camp in rural Massachusetts.
During the week or two after school ended and before camp began, I’d scheduled an annual visit with the ob/gyn. I sat on the examination table in that impossibly-thin and useless paper excuse for a robe and tried to think about anything but the exam itself.
In the middle of the routine “pat-down” portion, the doctor stopped short. She returned her fingers over and over to a bulge in my neck that she said she didn’t like (I later learned this was called a “goiter.” What an ugly word.).
I wasn’t paying much attention, but I remember thinking it seemed weird for a gynecologist to care about what was going on in my neck. When I checked out up front after the appointment, I learned that she’d ordered further blood tests, a follow-up visit and the whole nine yards!
Seemed strange, but I soon forgot all of it, as I was far more focused on the summer adventure ahead than I was on whatever it was she thought she was looking for in my neck.
Fast forward six weeks: Camp is in full swing. The gynecologist’s office and the vials of blood they took from me before I left for Massachusetts are a distant memory.
“You have a phone call from home. It’s your mom.”
No one at camp gets phone calls unless it is some sort of an emergency. And in 1991, no one was texting, emailing or Googling so the phone was the main means of getting the most important – and sometimes dire – messages across.
Panic. If my mom was calling, it couldn’t be about something good. I immediately thought of my beloved grandmother, of my grandfather, of my sister or my dad.
What? Who? Please let it be something I can live with….
I raced to the camp office, huffing, puffing and sweating.
“Mom?!” I half-asked, half-barked as I grabbed the phone. “What is it? What happened?”
“Everything is ok, calm down,” she told me. (I didn’t.)
“Then what?!”
“Remember when Dr. H took all those vials of blood from you, right before camp?”
Yea…that weird neck thing….
“Well, it turns out you have some abnormal levels in some areas, either blood something or hormone something. I can’t remember, all I know is that it is nothing life-threatening. Turns out your thyroid isn’t functioning as it should be.”
Silence.
Huh?
My thy-what?!
I have something in my neck by that name? Me? Really? I don’t even get colds or fevers, and now I have some condition? In my neck? With some thy-thing? It can’t be that important because I’m not sick…but then again, she is calling me…
“So what do we do now?” I asked.
“Well,” she started to explain, “You have two options: Come home now and visit a special doctor, or wait until the end of camp and then come home and visit the special doctor. Dr. H. seems to think now is the better option.” (The “special doctor” turned out to be an endocrinologist.)
I’d certainly be calling lots of attention to myself if I were to leave early from camp (it was unheard of unless death or grave illness were factors). I’d also be bummed to leave because, in all honesty, the real reason I’d chosen that camp in the first place was because my boyfriend at the time was also a counselor there. I certainly didn’t want to leave that situation…but thoughts of my own bed and a hot private shower were more than tempting after six weeks in a bunk and shared bathroom with 15 13-year-old girls.
“OK, Mom, let’s do it. Let me know what the flight arrangements are.”
The next few days was a whirlwind of cars and planes, civilization with its showers and clean toilets, medical appointments and words like “hypothyroid ,” and “underactive” and “Hashimoto.” Lots of photocopied pieces of information were given to me (remember, no Google or WebMD in those days!) with reassurances that as long as I took this innocuous little pill from then on out, I’d be fine. And in the process, I was told, the overwhelming fatigue I’d felt my entire life would magically disappear.
Wow, that’s a bonus!
Maybe this whole drama, and this thy-thing that I still didn’t totally get, weren’t so bad after all.
Maybe, I was excited to think, this was all happening for good reasons and now that I had this magic pill everything would be even better than before!
Maybe I wasn’t really a tired person, but an energetic person whose thy-what made her tired.
And maybe, just maybe, now that I had all the answers and the magic pill everything would be perfect.
Right?
Maybe.
What about you? What is the story of your beginning?
–Written by Allison Nazarian, our latest columnist. We are so proud and honored to have her on board. Please give her a warm Dear Thyroid welcome.
Tags: discussions about initial diagnosis, do you remember when you were diagnosed with thyroid disease, do you remember when you were first diagnosed with thyroid cancer, the beginning of thyroid disease, Thy-What?!: The Beginning, thyroid column written by Allison Nazarian
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13 Responses to “Thy-What?!: The Beginning”
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Thank you for sharing! I was in college too when I was diagnosed. Strangely, I was passing out randomly. After a blood panel was done, the doctor was astonished. He couldn’t believe my TSH level when I looked so normal (I think he was surprised I wasn’t overweight, to be honest). He said I displayed no symptoms, but as he began explaining what the thyroid was and what it did, it began making sense. That’s why my fingernails turn purple during the winter! I would later learn the hard way many other symptoms were caused by my thyroid, though my drs. claim I’m depressed. Did the magic pill work for you? I stopped passing out, and I don’t get so extremely cold, but other symptoms are there and have since then developed.
Hi Rachel,
I totally can relate to symptoms you didn’t even know you had, “little” things like fingernails, that now have a reason behind them.
I think for a while the “magic pill” did work for me. I was still tired, but I considered myself a tired person (more on that in an upcoming column!). Now, though, 20 years later, I am learning that the magic pill never addressed most of the underlying issues, which after 20 years, are more pronounced, to the point that I knew there was so much more to this picture than what I was told.
I am glad you stopped passing out! I often think that if I didn’t already live in Florida, I’d have to move here because of my issues with the cold. Another thing I thought was just “part of who I am.”
Thanks so much for your comment!
Allison
Isn’t it amazing how “they” seem to think that one magical little pill will make everything right in the world again? Sorry you had to get it so early, it sure sounds silly but I am sure some of us wish our thyroids could have at least lasted a little bit longer, maybe even enough for us to feel what normal was, before it pooped out. I wonder how long you actually had it before being diagnosed? Or maybe your just like me and never knew anything different. Hope your doing better now! I thank God everyday for the internet, otherwise we would all still be taking that one little pill and wondering what in the world was wrong with us 🙂
Best Wishes!
Hi Heather,
I think “they” only know what they know and they have to stick with that, because “they” don’t know there may be other or better options (and sometimes there aren’t). I totally agree with you about the Internet. I recently went gluten-free and I walk around the grocery store or go to restaurants and am constantly typing in “is such-and-such gluten free?” when I don’t know. I can’t even imagine how isolated and confused I would have felt without these resources, both the informational and the human. It gives all of us more power.
I have also thought about how long I had it, I wish I knew. What about you?
Hi Rachel,
I totally can relate to symptoms you didn’t even know you had, “little” things like fingernails, that now have a reason behind them.
I think for a while the “magic pill” did work for me. I was still tired, but I considered myself a tired person (more on that in an upcoming column!). Now, though, 20 years later, I am learning that the magic pill never addressed most of the underlying issues, which after 20 years, are more pronounced, to the point that I knew there was so much more to this picture than what I was told.
I am glad you stopped passing out! I often think that if I didn’t already live in Florida, I’d have to move here because of my issues with the cold. Another thing I thought was just “part of who I am.”
Thanks so much for your comment!
Allison
Thanks so much for sharing! I love hearing about other people’s experiences, although I’d never wish this awful disease on anyone… I was about 17 when I started getting weird pressure feelings in my neck. It was really uncomfortable and I remember asking my mom and grandma if they had ever felt anything like it, but they didn’t know what it was and I never ended up going to the doctor for it. I was 18 when I finally made an appointment because of feeling tired all the time. My doctor ran some tests and put me on the lowest dose of the “magic pill” because my TSH was a little high, and honestly I didn’t notice much of a difference except I started getting really bad headaches every afternoon. I complained to my doctor and she told me to try cutting the pills in half. The headaches continued, and because of some bad advice and the constant headaches I stopped taking the “magic pills” and that was the end of that.
Fast-forward through 12 miserable years of having unusual fatigue, extremely dry skin and eyes, brain fog, and many other strange, non-specific symptoms – all while fending off accusations of being a lazy hypochondriac by a certain person who is no longer in my life, AND told during this time by 2 other doctors that since my TSH was only slightly high it really didn’t warrant treatment… Well, you can see why a person might become a little bitter about this disease. I did finally get diagnosed while I was pregnant with my son, and I’m still struggling to find a balance with this awful disease as I’m sure many others are too. So good luck to everyone, and stay strong!!
Oh Joyce, I can relate to your journey. Glad you are here 🙂
Allison, (and anyone else reading this)
I was in middle school, always tired, sleeping at school, sleeping after school, eating dinner then going to bed. I don’t remember how many times we went to the doctor, but it must have been enough to upset my dad because we went for a “second opinion” which is something he doesn’t do even to this day. Well, as soon as this new doctor walked in, he looked at me and said, “You have a goiter!, We need to run some blood work”. That was before he even felt my neck! Of course the TSH came back high, and I was put on 75 mcg and the TSH went back down.
Around that same time I put on 30 pounds over summer, which made all the other moms feel bad for me (mine had passed away 4 years earlier) because my pom pom uniform didn’t fit over my now bigger stomach 🙁 After my mom died at age 8, I was never “skinny” again (I assume because my poor father took us out to eat EVERY single night), but there in middle school is when I really gained weight. The school was pretty good with me, even had a class taken out so I could go down to the nurses office and take a nap midday, and no longer required me to take the typing class (which was mandatory at the time, but they let me out of it anyway) because the constant clicking of the keys was driving me crazy!
Fast forward a couple of years, and I had already been diagnosed with migraines, IBS, I had Mono, and pityriasis rosea. So, not the healthiest person through high school, but still on 75 mcg of Synthroid. There were even months at a time that I would forget to take my medication, but my TSH never seemed to change.
In 2006 I learned of this “new” treatment for hypothyroidism, and drove 90 miles into Chicago to find a doctor who would prescribe Armour. Well, only SIX WEEKS after changing medications, I was pregnant. I had been married for 4 years, with no desire to have children, no thought that we ever could (we didn’t use anything to avoid it) and then it happened! I don’t care what anyone says, to be married for 4 years without protection, and then to get pregnant after six weeks, that is all the convincing I needed that different medications do different things!
So, from then until now I have tried a lot of different meds, but lost my great DO who moved to FL. He would have worked with me, and was even willing to try out the Cytomel, but he returned to the room all sad and said they no longer made it. Had I known then what I knew now, someone somewhere lied to him. It was his suggestion, so I know he wasn’t trying to just shut me up. Now I am on Naturethroid, and although my TSH is now 0.00, and my FT3 is in the high range, I am still working on getting my FT4 up, as it still won’t go above 1.0. So much to learn, and so much to do, but since I finally admitted to myself that I will never have a normal life, and treat it as if it is any other lifestyle changing disease, now I have the strength to carry out the day and do what I have to do, and not get discouraged if I can’t do it all.
So how is the gluten-free going for you? That is my next step, as soon as I become savvy on what to look for. That, and putting together some sort of Thyroid Lifestyle Protocol, so other people won’t’ have to spend their lives looking everything up. Maybe just a top Ten Commandments thing, with links mostly to Thyroid.About.com so they can look it up if they have the time. Your right about the internet, I just read a book called Life Wish: one woman’s struggle against medical incompetence by Paula Carroll. She had thyroid cancer back in 80’s, and although it deals more with the cancer and the doctors, it is amazing to read what patients had to do back then before the internet.
I realize there is a lot of BS out there about thyroid disease, but there is a lot of life changing info too. All we have to do is create a group of people, bigger than the Cancer Society, and maybe they would start to listen to us 🙂 I can dream, can’t I? he he
Hope you’re doing better, and I look forward to hearing how the gluten-free has been treating you, and what types of things you notice.
Take Care!
I totally agree with you! There is such a silence (not as much anymore, and thank goodness for this website and others!) around thyroid disease — everyone knows what cancer is, but who knows what their thyroid is and what it does?!
Your story is amazing, thank you for sharing it.
P.S. As for the diet, it has been a journey. The gluten-free helped a lot. I then realized that it was a big chunk of the problem but not all of it. I am not sugar-free, caffeine-free and grain-free (except for occasional brown rice or oatmeal). It has made a huge difference. But each of us is different and there is so much trial and error figuring out what works for us….
Thanks for sharing this! I was diagnosed with Hashimotos five months after I had my first child. I went to the dr. because I felt like something was wrong and I couldn’t seem to lose the baby weight at all. I found out at that appointment that I had Hashimotos AND I was pregnant with my second baby. Through the entire pregnancy no doctor could assure me 100% that the baby wouldn’t be affected because the thyroid plays a role in brain development in the first trimester.at the same time I found out I was pregnant with my second child- such a nightmare time. Thankfully she is not 5 and perfect but it was a really stressful time. It’s amazing how the thyroid can affect your body- if my levels go off I feel sick for weeks- fatigue, depressed and really irritable. It’s a tough disease to understand.
Hi Raleigh,
Yes, pregnancy brings in a whole new fun dimension, huh? I remember my synthroid went up right after Kid 1 and my metabolism was going nuts. I knew I was overmedicated but I felt energetic and was losing a ton of weight (who doesn’t want to be effortlessly skinny after giving birth?!?!) so I kept my mouth shut. The next blood text gave my secret away, of course.
xo
Hopefully one day the doctors will have it all together, until then I guess we just need to gather all the data for them and do the educating 🙂
Of course I don’t mean the ones that are smart enough to think for themselves, but the ones that continue to hold us back for whatever reason.
People just don’t realize how much thyroid disease effects a person, but with the way things are going, just about everyone may find out sooner or later!
I wish you ALL THE BEST in treatment, and may we all find good health one day 🙂
Yes! And I wish the very same for you! :)))