By Cassie Johnston
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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.
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Oh Cassie, I’m so sorry. Sending good vibes your way and I hope you’ll figure this out soon so you can start feeling like yourself again. I feel like a dumbass now because when you described all the craziness on instagram I actually did think about thyroid (after another blogger I read was diagnosed with Graves disease after a bizarre health “adventure”), but I assumed your doctor would be on top of any thyroid problems after your cancer scare. Hopefully you’ll find a new doctor who takes her patients seriously. <3 Take care of yourself in whatever way you can.
All my love to you and your family Cas! Xx
thanks for being open & honest about your health. I have missed you & appreciate the update. I like what your therapist said & look forward to being part of the journey that is going to make you even better than ever!
Sending positives thoughts your way for you and your family. Looking forward to hearing from you again in the future :)
We love you and will be thinking about you! Don’t concern yourself with us or the blog and just do what you need to do for you! Hugs!!!
Geez Cass! I’m so sorry that this is happening to you. My love and hugs go out to you and your family. I truly pray that you find the answers that you need to help you feel better than you ever have before.
You’re in my thoughts and prayers.
Something similar happened to me and the best advice I can give you is to stick to your gut feelings. If you do not feel right in your gut with what a doctor is doing or not doing, look elsewhere. Move forward – there is hope!
My prayers are with you.
I love reading your blog, but take care of #1 first. Wishing you success in getting to the cause of your issues, and a speedy recovery to feel great again.
Feel better soon
Lots of LOVE, girl! Hang in there!
I literally thought to myself this morning “I wonder how Cassie is doing, it’s so unusual for her not to be posting post-vacation” (which is kind of weird since we don’t know each other at all, but that’s how blogland works, I suppose). I’m glad to hear that you are hopefully on your way to finding some answers. As someone who has had disappointing medical experiences in the past couple of years (including a family doctor that told me to “just put some hydrocortisone lotion” on a spot on my nose that turned out to be a basal cell carcinoma (since removed, all is well), I feel your pain. You definitely have to be an advocate for yourself, especially when you live in a rural area (as I do), where, let’s just say, the creme de la creme of medical professionals do not always end up. Hugs to you and I hope you get the answers you need soon!
I had been thinking the same the last week! Sending good vibes, Cass!!
Thank you for your vulnerability. Thank you for having given up the personal aspect your blog to focus on your to followers. Thank you for giving so much for so long. We care about you and know we do not have a way to repay you for all you have given other than to let you know our gratitude. We are thankful and hope you receive the help you need.
Take care of you…the Internet is not going anywhere and until you return (if you choose – no pressure) we will still be here, sending all our best, healing wishes and vibes, from the sidelines.
Sending you so many good vibes. You’re on the right track and you WILL feel better than ever when this is all over. Finding the answers you need and giving your body the tools to heal will help so much. Many, many blessings to you. I’m so sorry you’re experiencing this.
I hope you get some answers soon and that you feel better than ever when this is over (I love that!)!!!
I can only imagine your frustration! Trust your gut and keep seeking answers! I hope your appointments this week next week lead to healing.
Had the same kind of trouble from the opposite side (hypothyroid). Years of ‘it’s just stress’ and ‘your just eat too much’ and ‘maybe early onset menopause’ (I’m an old mom)….. Till my GP decided to treat me on how I felt instead of the official guidelines fro lab results. My thoughts are with you and I wish you strength and a lot of patience (changes in meds have to happen in very small steps). Hugs!
Oh Cassie, I’m so, so sorry you’re going through this and appreciate you sharing even though your story isn’t neatly tied up with a bow and a happy ending (yet!). I did LOL at your WW comment (“I just thought it was that awesome’), so thank you for that.
I threw my back out last year and was diagnosed with a soft tissue disorder and, just as I was finally starting to feel better, I broke and badly sprained my ankle. I literally felt like I would never feel better or be able to function without medication again. This was a lie! It definitely didn’t happen overnight, but slowly and surely, I began to feel better, and rely on medications less and less. I’m still not 100% back to where I was physically before these injuries, but am well on my way, and I’m so incredibly grateful. I have no doubt that you will be feeling better, too.
Also, as someone who has a thyroid disorder, this post was a much-needed reminder to be vigilant about labs and knowing what our baseline in terms of how we feel is, so that we can best advocate for ourselves when these change. Thank you! Sending love, light, and healing thoughts your way.
I’ve really missed you but completely understand how you feel. My daughter went to the doctor months ago for heart palpitations, shortness of breathe and chest pain.. The doctor said it was anxiety and gave her meds.. After a scary trip to the ER in the middle of the night, several studies later, we learned that she has a heart defect! I was enraged! Fight for your health honey because the doctors sure as heck won’t. Rest all you need and be assured that we’ll all be waiting for you when you’re healthy and up on your feet again. Hugs and positive thoughts going your way!
Sending you positive, healing thoughts for your journey ahead <3
I am so sorry to hear you are going thru so much pain and suffering. I am relatively new to your website but have loved every posting. you are such a loving and caring person and I firmly believe this is happening for a reason that is bigger than us. I would be happy to send Reiki (I am a master reiki practitioner and volunteer at a major hospital rehab in boston) it does not diagnose or attempt to fix anything but it can help you relax and we all need that even if we aren’t going thru a health crisis. I hope I do not offend you in offering this. Bless you on your journey and I will keep you in my prayers.
Best wishes and prayers for a complete diagnosis and healing. It is so frustrating to trust doctors and then find out they missed something. It has happened to me also. So keep after those answers no matter what it takes. Sounds like you are on the right track now.
Bless your heart. Once you get the right diagnosis/medication, you’ll feel like a new person. I’m sure of it! Keep your chin up.
Love and health and healing to you! I’ve had some other medical/mental struggles this summer so I commiserate with the googling everything. here’s hoping this doctor will have a more clear direction that makes sense for you!
Oh Cass, I’m so sorry to hear about your health troubles! Thank you for sharing your life with your readers. I’ve been following since 2010 and will continue to do so. Praying for you, girl…
Cassie I’m so sorry!!!! That’s the worst feeling, knowing that somethings off but not knowing how to fix it. Prayers for you right now. I hope you get direction SOON on how to proceed!
Best wishes to you and I’m so sorry you’re going through this! It’s awful that you’ve had such bad experiences with medical professionals. I’ve heard this type of story all too many times, sadly. It’s actually well-documented that women’s pain and health concerns are often dismissed. :( Glad you are closer to getting some answers, though.
There are thyroid problems on both sides of my family (hypo- and hyper-) and all of my family members live very happy and full lives with medication. My mom literally doesn’t even have a thyroid (she had cancer and got it removed) and she’s doing great. So whatever happens, and even if you have to make some adjustments, I’m sure you’ll come out of this just fine. That’s not to downplay what you’re going through at all because I know how awful and scary it must be, but luckily with modern medicine thyroid issues are so manageable these days and whatever happens you can maintain a really amazing quality of life.
I’m glad you’re able to take some time to focus on the most important thing, your health. I’ve been reading your blog for years and years now (probably since 2011?) and I appreciate all of the amazing content you’ve put out. My friends and family have always been impressed with your recipes! However much time you need to take off you will still have your readers’ support. Take care!
Cassie, I just want to say that I hope you find answers soon. Dealing with an undiagnosed medical issue can be extremely frustrating, both mentally and physically. I’ve been there, wondering for months what was going on with my body and it ended up being an autoimmune disease.
Navigating through multiple doctors can definitely wear you down, but it’s also when you need to be the strongest. So, even though it may be hard sometimes, stay strong and keep fighting for your health!
So so sorry. Health stuff is just awful. Sending positive thoughts and hugs!
Know that you’ve been missed here, but you are doing a HUGELY positive (and these days , an incredibly exhausting and frustrating) thing in being proactive in regaining your health and wellness. Thyroids can be tricky – but have hope, they can be managed if that’s what it turns out to be. Fingers crossed for you that the combo of the naturopath, endocrinologist, and the functional MD will be a significant movement toward feeling more like yourself. Hugs
Cassie, I’m sorry you have been dealing with this and that your doctors have been less than helpful. Keeping my fingers crossed that your upcoming appointments will be productive in getting you feeling better. Gentle hugs and lots of positive thoughts!
I’ve been a reader of your blog for a while now though I’m not sure I’ve ever commented. But I felt like I needed to tell you that you aren’t alone! It’s so difficult to feel broken, especially with the uncertainty that you will ever be whole again. Thank you for your honesty with us. I will be praying for answers, wisdom and ultimately, peace for you and your family.
Thank you for your update. I am hopeful that you will be feeling better soon. Thank you for all you have given to us
I’m so sorry. Having a longtime sickness is hard and sad. You are in my prayers.
Cassie, my heart goes out to you. First, I want to say thank you for having the courage to share something so personal in such a public way. We, your followers, care about you like a friend, even if we don’t know you in person. With everything you have going on, you taking the time to talk to us about it is humbling.
Secondly, I debated whether or not to share my own healthy journey, because 1) this post is and should be about you and 2) it is a public forum. But your own courage give me courage, and I hope that sharing my own health crisis journey will give you hope as you go through yours.
In 2008 I went in for a regular check up with my gyno and he said, “you’re 3 months pregnant”. Well, considering I’m a lesbian, I knew that wasn’t the case. And like you, I ignored the red flags. He ran a pregnancy test and then told me “you have options” while I cried waiting for the results. I knew I didn’t need “options” because I wasn’t pregnant, I knew something was wrong. It turned out what he thought was a baby was a huge cyst. I wish I had gone for a second opinion, but I trusted him. So I went ahead with major surgery to have not only the cyst removed, but one of my ovaries as well.
He insisted I get on birth control after the surgery to prevent another cyst from happening. The pills made me suicidal because my hormones were so off. When I met with him about it, he said “well, there’s no scientific evidence the birth control will prevent another cyst”. I went from being suicidal to homicidal and I fired him on the spot.
For 2.5 years after that I struggled to find someone who would listen. I was given tons of different prescriptions… 4 birth control, 3 anti-depressants, 2 narcotic pain killers, 1 muscle relaxer, and a partridge in a pear tree. I would tear up the prescriptions in front of the doctors and tell them they weren’t listening. I know my body best… and I knew what I needed was hormone replacement therapy. Everyone kept saying my hormones were within “normal range”… but I knew they weren’t my normal.
I happened to run into a co-worker who had suddenly lost a lot of weight and had all this renewed energy. When I asked her what she was doing she told me she was on “bioidentical hormone replacement therapy” (bHRT). I’m pretty sure I nearly choked her when I grabbed her by the collar and asked for the name of her doctor. I had to wait 2.5 months to get an appointment and then go through a month-long test before the results came back. The doctor sat down with me and not only showed me my results but gave me copies of everything she was putting in my file. She told me I wasn’t crazy and she was going to help fix it. I cried with relief.
I have now been on bHRT (along with other vitamins to combat other symptoms) for almost 7 years. For those first 2.5 years after my surgery, I never thought it would get better. But when I found the right doctors, it finally did get better. I have medication I will have to take for the rest of my life… but it means I have a life.
Everybody wants to give advice to someone going through a health crisis, and you are right, this isn’t the place for people to do that. But I do want to say that you are doing everything right. You know your body best, and finding medical professionals that will listen and work with you is the right way to go. Don’t let anybody tell you different.
Here’s to hoping. We love you, Cassie. <3
Thanks for sharing your story. You just might help someone else in their own journey! Sending healing thoughts your way!
Huge hugs to you! I’m glad you’re taking care of yourself like this. I hope things get figured out soon and you’re well on the road to recovery before you know it.
I went into my doctor this week with many symptoms that I was worried were related to my heart. They did many tests but sent bloodwork to the lab just to get a picture of my thyroid function.
Nurse called yesterday to say my TSH levels came back undetectable. T4 is low normal. They took the initiative to send my sample back for further testing (specifically T3 and antibodies).
I’ve been dealing with what I thought was postpartum anxiety and PTSD for almost a year and a half. It blows my mind to consider… What if it was my thyroid this whole time? What if my life didn’t have to look like it has this last year+ if I had known?
But that is a dangerous road with nothing but “what if” answers. I am a better person today than I was… By a long shot. Adversity has a way of shattering our perception of ourselves and forcing us to rebuild from the pieces. What I am building is even more beautiful than what was broken.
You’re not alone. Whatever comes, you have an army of love surrounding you.
Best wishes in your journey.
I’m glad you put that note and applaud how it was sweetly written. Believe it or not, just sharing your story will hopefully be cathartic in itself – and you won’t have to worry about all of us during this ordeal (you’re like the good friend we don’t have to hear from all the time in order to still love!) Thank you for sharing and I’m so sorry to hear about how un-individual and blasé (at best) your initial care was. While it took a bit to realize you needed other help, you did take those steps! Give yourself credit for that and remember to be gentle with yourself. Hang in there. I pray you see some light at the end of the tunnel soon!!
Thank you so much for opening up with your story. You are in my thoughts and I’m sending positive energy your way. So glad to hear you’re listening to what you need. and we’ll be here when you return :-)
I’m so sorry you are dealing with this. It sounds incredibly difficult and frustrating. As a stranger on the internet I am sending love and positivity. Thank you for sharing and hope you find a solution soon.
Hopefully you find some answers and start to feel better soon.
Just sending you a BIG HUG and lots of love!! I have missed you and look forward to when you’re much better!! You can do this!!
I just want you to know you have an army of people sending good thoughts your way! From similar experiences I now understand why they call it the “practice of medicine”. How about stop practicing and do what you’re supposed to do, please? ;)
In 1996 I went through a similar situation. Thyroid dysfunction is very character-building! I had hoped after all these years, the allopathic medical community would’ve gotten a handle on this. Sigh… You are very wise to listen to your heart, change docs, pull back and take care of YOU! I’m praying for you…
This is a test. This is only a test!
Sending love and hugs your way,…now, to go make up my fall batch of Five Bean Soup jars and thank God again for you….
Sorry to hear youre not well but keep searching until you find answers. My sister was misdiagnosed for months as hypothyroidism but it turns out she has Addisons disease, a rare autoimmune diseases that attacks the adrenals. I think an endocrinologist appt is a really great idea.
Like so many people, I was worried when we didn’t see a post from you for a few weeks! I’m relieved to hear you are taking steps towards the answers you need but I’m also annoyed that as a patient you got the run around. I just want my doctor to be “on it” when I’m sick (and somewhat vulnerable) so it’s frustrating when they aren’t.
At any rate, I truly hope you feel awesome soon and that your family/friends are giving you all the love you need right now.
Best wishes Cassie!!!
My ex-“doctor” blew me off too when I went to him for my thyroid dysfunction. I now have a new doctor who diagnosed me with Hashimoto’s and is actually interested in helping me. Don’t worry, you will find the right doctor too and you will feel better. Best of luck to you :)
I hope you find the answers and care that you are seeking, and that you begin to feel better soon! <3
sending you big hugs!
Oh, Cass, sending you big hugs, healing thoughts, an extra dose of compassion, and hope. Thank you for breaking your rule and disclosing this very personal and very challenging time. Hats off to you for utilizing your supports and continuing to seek answers.
Four years ago I felt a strange tightness on the front of my throat. It was the beginning of my hypothyroid journey. Every cell in our bodies (every.single.last.one) has thyroid hormone receptors – that’s how important and impactful it is. For me, there has been no quick fix, no easy answers. I bounce from hypo to hyper. Sending you love. Have patience, it’s not an easy road. Allopathic medicine is horribly lacking in this area. You are already on your way if you’ve figured that out.
thinking and praying for you, Cassie :) We will be waiting for you to return when you are ready to!
Thank you for sharing even though it was hard for you! Thinking of you from Canada :)
Sending so much love your way… lots of hugs
Sending positive thoughts to you and your family.
It feels like I’ve read a lot of horror stories lately about women with thyroid issues that took months even years to be properly diagnosed. Mostly because they had doctors who didn’t listen or take them seriously.
I’m super grateful that when I went to my doctor and told him my symptoms (I thought I was dying) the first thing (literally) he said was that seems like classic Graves’ disease and sent me to the lab and to an endocrinologist who confirmed it.
I hope your new doctor really listens to you and can get you answers.
We’ve missed you Cassie! Thanks for updating us on all the craziness that has happened. I’m sorry that your doctor has been so useless. Your new doctors will be able to get you on the right path towards health. Keep hanging in there. Thanks for being a role model on how to advocate for your own health – it’s something women really need. xx
That’s a lot. I went through something similar trying to get the doctor to recognise adult onset asthma that presented as a terrible cough whenever I caught a cold and it just wouldn’t stop. A cough so bad you can’t sleep lying down which goes on for 3 months is not reflux. Then I got pneumonia because I’d been ill for 9 of the last 12 months. All that to say that I understand a little bit of what’s happening with you and the frustration and anxiety it causes when you know something is wrong and can’t get the right people to listen. I really hope it gets better soon and you get the help that you need. I don’t like to think that bad things happen so we can have a teachable moment but if you can come out of this with a different outlook then it’s something and proof of what a strong and ultimately positive person you are! Look after yourself. x
Read, “Undoctored”, Dr. William Davis, it will make you realize you are not to blame for your poor diagnosis! Hugs
I’m sorry you’ve been feeling so awful, Cassie. I have an autoimmune thyroid condition and getting diagnosed was a frustrating process, to say the least. My mom has thyroid issues too and when she unexpectedly went hyperthyroid (after decades of being hypothyroid) she also thought she was having severe panic attacks. I hope the endocrinologist can help you out and get you moving toward better health. Also, as another mother who struggles with her health and sometimes feels like she “isn’t a mother” or isn’t mothering well, I try to remind myself that sometimes the best way to be a good mom is to take good care of myself, even if that means lots of couch time for now instead of running around with a little one. Parenting is a marathon and sometimes you just have to take a walking break, you know? Of course quieting that critical inner voice is easier said than done. Anyway, take care of yourself. Your community will be here when you feel up to posting. Sending healing vibes!
Please don’t worry about taking a step back from the blog – your health is more important. Sending positive thoughts your way!
I went through the same thing as you 3 years ago. Saw over 20 doctors, some at Mayo Clinic here in Phoenix and none of them diagnosed me properly. I finally found my ND who diagnosed me with Hashimoto’s disease. At the time, I felt like I was dying and no one would help me. I almost gave up because no one would listen. Once I found my ND, it was life changing. She now sees patients remotely so perhaps that’s an option for you if you’re interested let me know and I’ll pass along her info.
I will be praying for you – God is a marvelous healer and He loves you! Hang in there.
My mom struggled with thyroid issues when she was younger and it IS totally miserable. I’m sending all the good juju your way for you to find the most compassionate and capable medical team, the grace to give yourself the time to heal and good answers that resolve this baloney. And, perhaps not the biggest priority, but I’m sending juju for you to get gluten back. ;)
Take car of you. I’ll be here waiting for you when you are ready to come back!
Cassie, thank you for sharing. I was worried about you. Sending you lots of healing thoughts and hugs.
Thoughts and prayers are with you – and big hugs! I have a sluggish thyroid that led to mood swings and feeling so tired I could hardly put one foot in front of the other some days. I’ll be taking levothyroxin for the rest of my life, but it has helped me regain energy. I call my B vitamins my happy pills. I still have some minor anxiety issues, but not the mood swings. You are on the right track to take some time off and look for help that has your best interest in mind. God Bless.
I’m so sorry for what you have gone through! Sending positive thoughts that your new team will help you feel better so that you can live your life again. Cyber hugs!
I am so very sorry that you’ve had to go through this, and that your medical care has been so…less than ideal. Good for you for pursuing this. Best of luck.
When my daughter started seeing a functional medicine doctor, she finally felt heard for the first time. She said “Finally, someone who doesn’t think it’s all in my head.” I hope you have the same experience. That, in itself, is uplifting.
Thank you so much for sharing, Cassie! I think of you often and am sorry you are going through this. But I am hopeful that you have found some new doctors who will understand what’s happening and help you to heal. Sending healing and positive energy your way and all good thoughts for your upcoming appointments.
Oh dear Cass. This all sounds horrible. I really hope the functional medicine MD and endocrinologist can help set you on the right path. You should concentrate on just healing for now.
Much love to you
Sending you all the positive vibes, warm wishes, and love love love! xo
I’m sending you healing vibes! I can’t imagine how frustrating and difficult this must be. I’m glad you’re taking the time to get better. We’re loyal readers; we will stick with you through this. I’ll be praying for you and your family as you go through this.
I am sending all of my love. I am so sorry that you had such a terrible health care experience… though, to be honest, I am unfortunately not surprised. I began recovering from an eating disorder two years ago and, though it’s a different issue from yours, I had many of the same distressing experiences you had: anti depressant recommendations immediately, inadequate labs, a long wait for an endocrinologist, unconcerned np’s. I’ve found time and time again that you have to be an extremely pushy advocate for yourself ( not how it should be!). It took me a while, but I did eventually find a good doctor!
It’s really scary when you know you’re sick but nobody can (or will) help you. When I was in Iowa I found a naturopath who had a medical background so he was able to get around the legal stuff. He was the first person who was able to point me in the direction of why I was sick: food allergies. I saw an allergist and immediately had answers I was seeking for the last 10 years. GI specialists, 4-5 general practitioners, etc.—nothing until I saw the naturopath. Not saying that naturopaths are the answer, but in this case it was for me. (Also I had a random physical therapist sub for my regular one once and she figured out that my feet issues were actually a sciatic nerve issue and not plantar fasciitis).
Anyway, glad you are sharing because hopefully somebody will have a suggestion for you that will get you some answers! Hope you feel better and glad it’s not cancer (I have a friend who had thyroid cancer and it was scary).
Feel better soon, Cassie! We’ve all missed you on Instagram and here on the blog, but your deserve to put your health first. I’m pulling for you!
You are strong. You are smart. You are amazing. You know what is best for you. Keep breathing.
You got this.
I am here for you! I get it. Thank you for sharing friend. Please keep us posted on the next steps.
So sorry to hear, sending lots of love and prayers
Your therapist is absolutely right. You will come out of this feeling better than ever. An illness like this doesn’t happen overnight. It has likely been creeping up for years, like the proverbial frog in a pot of water. When I got my Graves disease under control with a combination of diet (Autoimmune Protocol) and medication, it was a whole new level of well-being. The biggest thing I learned from the experience was that no one cares as much about my health as I do – I needed to listen to myself as well as my doctors. Good luck navigating your unique healing journey!
Hey Cassie, Sending good thoughts and strength your way. Post your What if I feel Better where you see it several times a day…it’s got great stuff there!. Being a knitter, here’s something to check out that is positive and fun. The American Heart Association Little Hats, Big Hearts campaign…
knitting hats for newborns. I did it last year…very rewarding and uplifting! Something that might help your spirits. Be strong! Lynda
love, hope, support, and positive thoughts. check, check, check, check! If I could hug you from Alaska I would. Thank you for sharing your struggle with us. Makes me like you even more. <3
Adding my love and good wishes to all that already surrounds you. You are an impressive, inspiring person and we will all cybercelebrate the return of your good health. :)
I really feel for you! I have multiple thyroid disorders and have been where you are. It’s exhausting, stressful and overwhelming… hang in there and take all the time you need to heal. I’ll personally be thinking of you.
In the meantime, I’d recommend looking into the book “The Wellness Project.” It’s one girl’s experiment to holistically help her thyroid issues — things like removing gluten, drinking more water, trying various types of exercise, etc. While it’s obviously not a protocol, it was really interesting to hear the different things someone else was trying. I’ve been dealing with thyroid issues for 10+ years and this was the first book that made me feel like it was okay to deal with it.
Stay strong <3
SO sorry to hear and so hearing you because so many of us have been through all of it or very close. Sharing a lot here: sorry if it seems like TMI especially at first but many of us have gone too long without this information!
I’m up and down instead of hyper, but went through a period of weight loss and adrenal flares (“panic attacks”) two decades ago. It’s been a journey since then with many chapters. But I will share that the hyper-endocrine and goiter folks I know who got better with alternative health included a lot of anti-inflammatory foods, leafy green veggies, and absolutely no grain products or derivatives. This can be tricky since most additives in foods, meds, and supplements are frain-drived. But if possible, try it for a day or two at a time and see how it goes. The other route many have taken with surprising results is a gentle, anti-parasite diet, starting with protozoa (like toxoplasmosis and babesia, similar to malaria) and helminths. The above can be surprisingly common l, but can be very elusive because of how these critters modulate the immune system, and going too hard at it can cause problems as well. Pumpkin seeds, garlic, berries, papaya, food grade diatomaceous earth, cod liver oil, probiotics, cloves (concerns about cytotoxicity seem to be outweighed by anticancer and antiparasitic benefits), and other gentle approaches from ayurveda and traditional Chinese medicine have really helped a lot of my friends. Hope this helps and you feel more like yourself soon!
Ooh, sorry just saw the addendum about trying to fix! Sorry…sharing what worked for me after DECADES of feeling like a shell. Because no one offered me those tools. But there is a lot more out there now, and I pray that everyone finds it in spite of a medical ssytem that ignores diagnostic and treatment options. Best wishes and please feel better soon!
@ happy wheels @
as a nurse practitioner, i just want to say that i’m horrified by the way that NP treated you. i hope you quickly get the good care you (and everyone, really) deserve.
take care ?
Nothing but love and healthy thoughts are being sent your way from NYC!
I wish i had more words than I’m sorry, and I’m thinking of you. I wish i knew what you were going through so I could tell you something that you need to hear right now, but all i can do is send my love. Your doing this right thing taking your time. Keep us posted.
Big hugs, light and sunshine coming your way! Your “Frozen” band-aid seemed so perfectly you :) May you have a wonderful appointment with your new doctor and feel better very, very soon! <3
Oh I so feel for you! I have been dealing with panic attacks (post partum anxiety) and it is a thief of life and joy.
My husband went through issues with his thyroid last year and it was shocking how much it can affect the entire mind and and body. He ended up on synthroid and then eventually found an alternative to it that has allowed him to go off to it.
I hope your appointment goes well and you get some answers that you are looking for.
Oh my word your situation is so similar to what happened to me! Not trying to diagnose you but in my case I was running hyperthyroid and was eventually diagnosed with both Graves’ disease and Hashimotos. I tend to run hypo after that hyper swing and take a small dose of synthroid.
I have found that gluten free, dairy free, oat free, corn free and Egg free work for me (with the assistance of naturopath food sensitivity testing and just day to day symptoms. Not easy but worth it.
One thing I would add is please don’t rush into Radioactive Iodine treatment even if it’s pushed on you by MDs. Not saying it can’t be the right treatment for some just do your research and consider alternatives and time before doing it.
Wishing you all the best!!!
One other super important note – check out the Autoimmune Wellness podcast by Mickey Trescott and Angie Alt. So so encouraging when you’re struggling.
I’m sending positive vibes your way for a speedy and accurate diagnosis. ❤️
This hits so close to home for me. I used to deal with panic attacks a LOT. Then I had an incredibly weird cycle. After dealing with OB-GYNs brushing me off (because I thought this had solely to do with all that), I finally found one who helped me advocate for myself. I also had a primary doctor brush me off and my ob-gyn helped me find an endo who would run all the labs and listen to me. I was finally diagnosed with Hashimoto’s, which is an autoimmune disease that causes hypothyroidism. I was diagnosed probably about 4 or so years ago, but am still trying to lose the weight that the hypothyroidism caused before I could get on the proper dosage of medication. My panic attacks are less, but I do see a therapist and am starting medication now to help with my constant stream of anxiety (that is likely not related to my thyroid). It’s still a constant battle to advocate for myself. Sometimes doctors see the labs that say “within normal range” and yet they refuse to listen to your symptoms. I’ve found an endo where I live now that I think will also listen to my symptoms, but I have to always be sure to keep track of those symptoms. And sometimes I make myself anxious because something will happen to my body and I constantly question if it’s just an anomaly or are the antibodies attacking my thyroid again.
There IS a light at the end of the tunnel, though. It’ll be frustrating to get there, but you’ll get there. Track your symptoms but also track your good days and when you feel your own level of normal. Continue to advocate for yourself and get angry if you need to. You’re allowed to feel any way that you need to feel.
I’m here with you, thinking of you, and sending you lots of positive thoughts!
I’ve been reading your blog for years and have never commented. Just wanted to say YOU GOT THIS. Hoping you find some peace, answers and support. Sending love from afar.
Cassie, I just found your blog through simple Podcast and got your auto email response and I’m so sorry this is happening. I’ve had a broken right wrist for 2 years that has taken me down a similar path with similar complications, so a lot of things you shared hit home. I look forward to learning blogging better from just browsing around your blog and finding great content to fill up my new Tailwind cue! All the best!
I had this and it isn’t anxiety. You are having a thyroid storm and only a good endocrinologist would see it. No one operates on thyroids regularly so take the radioisotope soon. It is bad for you heart. Every symptom is classic.
-from a medical gal
So sorry to hear about this!! I hope you are recovered soon.
I’m so sorry you’re going through this, and I will be thinking of you.
Cassie my daughter had graves disease when she was in 9th grade and as I read your post I felt like a was thrust back into that time before her surgery. I just want to tell you to be patient with yourself. It takes time to get sick and a lot of time to get well. I hope you have a board certified endocrinologist ❤️ You can email me if I can help❤️
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