I really have gone back and forth about writing here about what’s going on with me lately, but I think it’s time. You guys deserve some answers as to where I’ve been. You’ve invested your time, clicks, money, and love in me, and it’s time for me to repay that with some honesty. I really wanted to wait until I had some answers to give you, but I don’t. And I’m not sure when or if I ever will. So for now, I’m just going to write (and cry while I write, but you can’t see that).
Back in the day, when basically only my Mama and sisters were reading this blog, I would share everything I was going through. Every body ache. Every illness. Every sadness. Every story. But then this little place of mine that I love so dearly grew and grew and grew, and no longer did it feel like I was able to be so intimate in my stories. In fact, it became a lot less about me, and a lot more about you guys. I wanted to help you feel your best, and naturally that mean the lens shifted from me to you. It’s been wonderful and fulfilling to (hopefully!) reach so many people, but it does mean that I’m not as comfortable with sharing all of me anymore, so this post is really hard for me to write. Please be gentle with me.
I guess the story starts in earnest back in late April of this year. I was sitting at the dinner table one Friday, happily chewing on a piece of pizza. I rested my hand at the base of my throat while I was chewing, and felt a lump bobbing up and down as I chewed. I immediately started Googling, and realized pretty quickly it was probably a lump on my thyroid, and, thankfully, probably nothing. Many women my age develop them at some point in their life, and they’re almost always nothing—still, it’s good to get them checked out. So I made an appointment with my family doctor the next week.
At the appointment, he confirmed it was a thyroid goiter and decided it felt “suspicious” and ordered an ultrasound to be done that day. I felt normal, healthy, and completely like myself, so the big lingering question at the time was is it cancer? I was so blinded by the c-word (which, spoiler alert—it wasn’t) that I neglected to really gather my facts about what this could mean for me and my future if it wasn’t cancer. I trusted my family doctor. If it wasn’t cancer, it was normal, and I’d be fine.
So, the ultrasound came back suspicious, and my doctor ordered a biopsy. The biopsy came back benign (this whole process took about six weeks from start to finish, and that was mega stressful), and I thought I was merrily on my way.
In hindsight, I should have known better to put all my trust in my doctor. There were red flags. Like that my doctor had no interest in testing any of my thyroid function levels at the time. Or that he never referred me to an endocrinologist (which I now have learned, is pretty much common practice as soon as a thyroid goiter is deemed suspicious—if not sooner). Or, you know, the fact that I’d have to call the office 100 times a week to get any sort of test results back.
But, I went on with my life, and nothing seemed abnormal. I joined Weight Watchers, and started dropping weight like I never had before in my life even though, if I’m being totally honest, I wasn’t really sticking to the program. I just thought that Weight Watchers was SO AWESOME, because I was still eating cookies and drinking beer and generally eating the way I had before, but dropping 3-4 pounds per week. IT WAS MAGIC. Again, hindsight, this probably wasn’t magical at all and instead was an indication of my thyroid starting to disfunction. But my doctor told me I was healthy, so it never even occurred to me.
Then, fast forward to the first week of August. We’re traveling in Canada, visiting my husband’s family, and I had a nasty little cold (nothing unusual, but annoying). Other than being bummed I didn’t feel 100%, I was happy and excited to be on vacation. Three days into the trip, we’re driving in the car, and my heart starts racing, my hands and feet go numb, I start shaking uncontrollably, and I’m sure I’m dying. Absolutely, 100% sure I’m dying.
My brother-in-law was actually the first one to guess what was going on—I was having a panic attack. I’ve never in my life felt like that before. I had some similar feelings immediately postpartum with anxiety, but never an acute, debilitating attack like that one. It was nothing like I had ever experienced before. And since that day six weeks ago, I haven’t been the same. My body feels like it is shutting down. I can’t quite put into words how different the Cass is of now from the Cass back in July. My life now involves trying to sleep (which doesn’t come easily), coloring, knitting, and trying to choke down food. I’m not a mom anymore. I’m not a wife anymore. I’m not a blogger. I’m not anything. I’m a shell of a person. Both figuratively and literally—I’ve gone from 244 pounds in May to 201 pounds today.
The symptoms I’ve felt are way too numerous to list in this already long blog post, but they all point with a big red arrow to having thyroid disfunction. We ended up cutting our trip to Canada short so I could get home and see the doctor.
I first went to my doctor’s nurse practitioner on August 11th and again on August 21st, and she ran a whole battery of tests, including something called my TSH levels. TSH stands for thyroid stimulating hormone, and most doctors consider it the gold-standard of thyroid function tests—however, I’ve since learned it can be an incredible oversimplification of your thyroid function (TSH isn’t even created by your thyroid—it’s created by your pituitary gland).
It’s a good general test to do, especially in the absence of other symptoms, but it doesn’t paint the whole picture. And a more robust set of tests needs to be done to really see what’s up with your thyroid. And even then, thyroid function is incredibly persnickety, one person’s “normal” might feel terrible to another person, and vice versa. I am very grateful to my sister (who has suffered with thyroid issues most of her adult life), told me to get a baseline thyroid test done back when I felt normal and first found the goiter. Did you know you can order your own labwork without a doctor? You can. And I’m so glad I dropped the $60 back in the spring to get baseline levels that felt normal to me.
Anywho, most everything came back “normal”, and the nurse practitioner ended up diagnosing me with a vitamin D deficiency (which I know now can also be a sign of thyroid disfunction), allergies, and anxiety. She literally said to me, “life is stressful, and sometimes we need a round of antidepressants to work through it” even though I explained to her that my life is really, actually, not at all stressful. Except for well, this whole kerfuffle.
It just felt like a brush off. When I mentioned that I’d lost 20 pounds in four weeks without trying, her response was “well, you’re still above your ideal weight, so I’m not worried about it.” So, I started doctor shopping, obviously.
Thyroid disorders are rampant, and unfortunately, understanding and compassionate care for people suffering from them is not. My diagnosis of needing therapy and antidepressants is all-to-common among thyroid suffers—if I do need mental health care, I’m fine with that (in fact, I’m seeing a therapist now, who doesn’t think this is mental health issue, but is helping me work through the emotional aspects of being sick). But the internet is a marvelous thing, and there are hundreds of websites and forums where people come and share their resources for getting answers and getting help. A lot of people recommended seeking out a naturopath if you aren’t getting answers from a traditional doctor, and that was my next step.
I saw my naturopath for the first time two weeks ago, and after a three hour appointment and carefully going over all of my labs, symptoms, and history, he said this was a pretty “slam dunk” case of thyroid disfunction. He was the first person to look at both my “before” thyroid labs and “after” thyroid labs and notice a big drop in my TSH numbers (which is a sign of hyperthyroidism). My doctors before had just looked at my numbers and saw they were within the normal range. If they’d really looked, they would have saw number that was close to the high end of the normal range in May and a number close to the bottom end in August.
Since naturopaths aren’t licensed in Indiana or Kentucky, he couldn’t order labs, prescribe, or diagnose me legally. But he did request that I go get a full thyroid panel done on my own, and I did. Again, the results all came back “normal” but this time, all my levels were really pushing the outer limits of even what the lab said was normal, and, I had thyroid antibodies present in my system—which points to an autoimmune condition.
Because my naturopath is limited legally what he could do, he gave me some herbs and lifestyle recommendations (bye-bye gluten, which is apparently just death poison nastiness if you have thyroid issues—I’m not sure about that, but honestly, I’ll try anything), but also recommended I find a new medical doctor as soon as possible. I did a ton of research and finally found a functional medicine MD who comes highly recommended, and I’m seeing her for the first time on Monday. It’s been a long wait for this appointment (I think she was on vacation), but right now, I’m holding onto the hope that she’ll be able to fix me. Or help me fix myself.
I think the biggest struggle right now is that everyone keeps telling me what they think is wrong with me, but no one can help me feel better. My naturopath. My therapist. My own research. I even ended up in the ER last weekend because I had a panic attack I couldn’t come down from, and the ER doc and nurse thought this was pretty clearly a thyroid issue (my heart is healthy)—and was surprised my family doctor hadn’t referred me to an endocrinologist months ago. Everyone is telling me this is what is wrong, but NO ONE IS HELPING ME. And that’s just…infuriating. I’m hoping that changes next week.
(Apparently the last time I was at that ER was when I sprained my ankle in high school—hence my maiden name even though I’ve been married 10 years.)
Not only do I see my (hopefully) new family doctor next week, but I also managed to finagle myself into an endocrinologist next week, too. Because endocrinologists see people for diabetes management too, getting into one (at least around here) is almost IMPOSSIBLE. Most of them require a full review of your labwork, a referral from your family doctor, and even then, a 4-6 week wait to get an appointment. Which, makes me even angrier that my family doctor didn’t refer me to one months ago.
But I found a nurse at one endocrinologists office in the area who took pity on me and decided that the ER doctor’s recommendation to follow up with an endocrinologist would work for a referral, and that my history of suspicious nodules, symptoms, and the fact that she didn’t feel like I had great care from my family doctor should let me past the gates. She squeezed me in next week.
So now, I’m just passing time until someone can help me. And trying to stay as positive as possible. When you’ve felt this bad for this long (and when your hormones are impacting your mental health), it’s really easy to go to dark places like “I’ll always feel this way.” And my therapist has been asking me to counter those with equal, but opposite statements. “What if I feel better than ever when this is over?” Because it’s entirely possible that will be the case. So I’m focusing on that. Right now, I’m choosing to believe this is my rebirth. This whole experience is going to give me a better understanding of my health, a better tribe of health care professionals, and a better motivation to take care of myself. I just gotta get through this part first.
As far as what’s happening over here on Wholefully, I have a few posts saved up the hopper that I’ll probably be sharing over the next few weeks and months, and I also will be reposting some of my favorite seasonal recipes from years past (there is some seriously good stuffed buried in the archives). And I promise I’ll keep you updated as I have more information about my health. If this does turn out to be thyroid dysfunction, there is a long road ahead that involves all kinds of diet, lifestyle, and wellness changes, and I’d love to have you along on the journey with me.
But, I have to be honest, I’ve been checked out of what’s going on here, and I probably will continue to be. My #1 goal right now is to heal, and right now, working isn’t part of that healing protocol (maybe it will be in the future). One of the great benefits of running a business like this one is that it can “coast” for a little bit when life comes up. I’ve worked overtime for years and years to build up a useful, helpful library of content, and now, I’m cashing in some of my sick days, while you guys still enjoy the work I did. My awesome assistant Julie is running things behind the scenes while I’m healing, so I promise we aren’t going dark. I hope you are all having a wonderful early Fall, and I love you, and I feel you uplifting and supporting me. <3
Important note: I know you are all super loving and compassionate and helpful, but pretty please refrain from trying to diagnosis me or fixing me or treating me or telling me what I can do to feel better. I know it comes from an amazingly thoughtful place, but I’m just not emotionally stable enough right now to have the internet tell me all the things that could possibly be wrong with me. I’m choosing to trust the health care team I’m assembling. And trust me, if it’s out there, I’ve Googled it already. You love, hope, support, and positive thoughts are what will really help me right now.