Diagnosis: Impossible

Here is an actual picture of my arm after the lab incident!

Every cancer patient has a moment in their story where they knew something was off. Mine is a bit more complicated. As stated in my “About” section: My butterfly (thyroid) was already broken before cancer. I started thyroid hormone replacement therapy when I was 16 due to Hashimoto’s thyroiditis including a goiter (enlarged thyroid gland).

I was losing my hair. My skin looked like the Sahara Desert. My nails were brittle like glass. My face was droopy like the sad cat memes. And oh, the fatigue! No vitamin, supplement or caffeine amount would save me. Something was wrong. In an effort to find out what was causing my symptoms I visited several doctors. They said I had some sort of “anxiety issues” or puberty is rough for everybody so stop complaining about it. Or the big one: I was too young to have health problems. Just “relax” and all my issues would ~*magically*~ disappear. Did they learn these lines from med school? And if magic IS essential to my recovery, does that mean they attended Hogwarts School of Medicine? Your guess is as good as mine. I kept trying and found a doctor who ordered lab work for me.

I had 20 vials of blood taken. While that was a lot, it feels like even more when the much older phlebotomist is hitting on you the whole time. He got both my blood and on my nerves. Medical staff can’t claim ignorance of your age, that pesky wristband crushes any excuse. I wanted to run, but the needle in my arm kept me in that chair. I hoped Chris Hansen would pop out at any second and declare this was an episode of: To Catch a Predator. Unfortunately, Mr. Hansen never appeared. For the record, I did jump up as soon as my arm was bandaged and ran out afterwards. I also freaked out the receptionist. “What did they do to that poor girl, am I next??” were probably her thoughts. I apologize.

Since I finally got diagnosed with a thyroid problem, I was prescribed Armour thyroid for my replacement therapy. Armour is essentially dried pig thyroid in a pill. I used it for 3 or so years. For whatever reason that was making my levels worse and caused uncomfortable side effects. I had uncontrollable urges to roll around in mud and oink instead of talking. I knew the pain and embarrassment I was causing my family had to end. Just kidding, obviously. I started having issues with forgetting things and passing out randomly. I had some other problems, but I actually don’t remember them. Which proves the whole forgetfulness thing. My primary care doctor told me it was time to try Synthroid (levothyroxine), the most common and synthetic option. I didn’t want to because I saw so many horror stories and read that I would be making a terrible mistake. Not to mention it might appear that I was abandoning my holistic health philosophy. I was expecting a tar and feather treatment at my next visit to Whole Foods. Shockingly, none of those things happened. I started doing much better on “levo” and felt like I turned a corner at the time.

When I was 20, I was in an unfortunate (violent) situation. As a result of that, I had to visit my primary care doctor. He checked my neck again and told me something felt abnormal. He said he would order a neck ultrasound. Even though I was monitored with labs regularly, I never had an ultrasound before. Although it was awkward that my appointment was sandwiched between ultrasounds of babies, it was easy. Just lay there with some inconsistently warm goo on your neck. I didn’t think much of it really. I thought my neck was still swollen and that my doctor was just doing his due diligence. I received a phone call quickly after the radiology results came in. I had 3 nodules and they were large enough that they needed to be biopsied.

I was referred to a local endocrinologist and a biopsy was quickly scheduled. I was told it was going to be easy and that sometimes patients fall asleep. It wasn’t. I received no numbing medication on my neck and was expected not to swallow for an unrealistically long time. I know this now due to my second biopsy. It was nothing like my first one. Only 2 nodules were able to be biopsied. The samples were poor, and they were blamed on my skill as a patient. This statement still confuses me because I didn’t complete multiple years of schooling and residencies like the doctor did. But my skill gets blamed? Yeah, okay. This made me feel horrible, like a failure. I had been through more painful tests in the past. I pride myself on being a strong, red-haired lass. My morale was very low after the biopsy and it haunted me for years. It was something that “defeated” me. It was “stronger” than me.

If you are a patient or potential patient reading this before I write about my second biopsy, PLEASE KNOW: They aren’t all like this! Don’t worry, my second-opinion doctor looked at me like I came from the dark ages when I described this to her. If you have a good doctor, you should be in good hands. To the patient who has had this bad experience before PLEASE KNOW: Your biopsy excessively hurting, going bad, or not good samples. That is NOT YOUR FAULT! I have seen in other areas of the Internet where this story repeats. Please understand me clearly, it is not your fault. And it doesn’t mean your next biopsy will go that way, just like mine didn’t.

Answers were not coming from the biopsy. The pathologist understandably lacked enough cells to give any opinion on my nodules. The endocrinologist shrugged and said most nodules aren’t malignant (cancerous) so we could do follow-up ultrasounds. That was fine with me at the time, as long as I didn’t have to go through that again! I took my yearly ultrasounds seriously. My nodules kept growing, but I was prescribed higher doses of “levo” in hopes of shrinking them. I was concerned about the growth, but I was once again assured that most nodules were not malignant, and it could just be my Hashimoto’s. I tried to reassure myself. I was being a responsible patient after all.

After a few years of the monitoring, there became a point where deep inside myself, in my spirit, I knew something was wrong. I was having more fatigue than ever. My mind seemed like it stopped working. It felt like having the flu all the time. I wasn’t functioning well in daily life. Not only was my health failing, but I had this unshakable feeling. I blurted out months before what was my second-opinion appointment (even before it was scheduled) “I have cancer” to my confused family. No, I didn’t “speak this on myself”. It already was cancer. I just finally realized it. I knew it was time for a second opinion, including at a different hospital.

And that is when the story changed.

3 thoughts on “Diagnosis: Impossible

  1. Oh oh oh! Reading this post is bringing up all kinds of PTSD, kinda, in me. I had thyroid cancer in 2003, started years prior with Hashimoto’s thyroiditis too, been on meds for years and years and years. Didn’t know the connection to PTEN mutation/Cowden Sydrome. And, here I am 13 years later and my endo theorizes my thyroid is growing back. I am supposed to get my 3rd – THIRD – fine needle biopsy next week. ❤

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    1. Oh noooooooooo! The horrific dreaded “thyroid strikes back” I’ve heard about. I am so sorry you are having to go through that. That must be crushing after you’ve physically recovered from a thyroidectomy that many years ago. I will be hoping and praying for an easy and painless as possible biopsy (with great cell sample) for you.

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