This posting is for everyone out there who has had to fight to get diagnosed and treated for thyroid disease. You are not alone, you are not crazy and finding the right doctor takes persistence. Here’s Rochelle’s story.
Fighting For My Thyroid Diagnosis
Getting a proper diagnosis for your thyroid, for some reason, isn’t easy.
I just want to share my story so that you can know 3 things.
- You’re not alone
- You’re not crazy
- You can get a proper diagnosis
Let’s start at the very beginning…
A very good place to start… (know what that’s from?)
In 2009, my mother-in-law pointed out my neck. It was swollen. A goiter, she called it.
Insert paranoia of my neck protrusion.
2011, I was pregnant with my 4th, and my OB/GYN noticed my neck and wanted to run a test. The test came back fine. If I had known then what I do now, I could’ve figured this out years ago.
I had my 5th child June of 2014. He was big. He was adorable. He was perfect. Well, I ought to say, is perfect.
Then, somehow (I know how it works), we were unexpectedly pregnant in September that same year. Yes. September.
We thought we were done with #5. Well, Mr. Barlow was done. I was like, 90% sure I was done. Then, I got pregnant.
I was elated. Nervous, but elated. They’d be Irish Twins.
I had a somewhat normal, for me, pregnancy. Normal = super super sick for 10 months.
This time, I got anti-nausea medication. Hallelujah. It helped a ton.
Two weeks after Thanksgiving, I started spotting. Which was weird for me because with my 5 pregnancies I never, not once, spotted. Ever.
I called my doctor, we ordered an ultrasound. I was a wreck. A straight up mess.
We went in. As soon as I saw that little baby, I knew. She (or he) had passed.
It was an awful awful moment. I bawled. I’m so glad Mr. Barlow was there. He is like a calming drug. He can just walk in the room and I know everything is going to be okay. We held each other.
I was devastated.
Then came the worst part.
Waiting for the baby to miscarry fully. Two days later I was in “labor.” It felt like full on labor. Remember, I have experienced labor without meds. It ain’t pretty and it ain’t comfy. It hurts like hell. I don’t care what any mother-earth woman says. It hurts like hell and give me an epidural now!
No such luck. I was given pain meds and ibuprofen. That was a joke. It took it from pain 10 to pain 9.5. Anyway, needless to say, it sucked. There was lots of blood. Contractions and misery. For several days.
The absolute hardest part was when I was in the shower and huge clots and placenta were coming out. I just prayed and prayed and prayed that I wouldn’t actually see anything that looked like a baby. Then I had to flush all those bits down the toilet. It was torture. I felt like I was flushing my baby away. My gut twists even thinking about it now. I was a bawling mess.
Heavenly Father carried me through that storm. Prayers from my family carried me through. “I’ve-been-thinking-about-you’s,” carried me through.
I felt a strength within me – that didn’t come from me – build and hold me up.
My emotions and heart healed quickly. I knew I’d be blessed with another precious one. Someday soon.
I felt inspired to take care of my health and my body. At that time, I only thought of lose weight, and eat right.
I started right away. I ate clean – I followed Trim Healthy Mama. (They have a new book coming out Sept 2015) I felt better. But not much was happening weight wise. I looked more into their book and they kept talking about the thyroid and hormones.
Well, I have had, for years now, an enlarged thyroid. Some would call it a goiter, but I refuse, because it sounds like something Quasimoto-ish. Yuck. No offense Quasi.
So, I started searching around for other information. I kept seeing thyroid, thyroid, thyroid. I read Wheat Belly. Well, skimmed it. Until I got to the good parts. The HOW of the book (1 chapter). Then read Wheat Belly Total Health, this book talks a lot about the thyroid. Then I read Grain Brain. And on and on and on.
Yikes. It was time to get my thyroid figured out.
I was freaking out. I was looking for natural remedies and food remedies. I did not want to go to the doctor. I have no idea why. I just wasn’t ready for that step. But all that information. All that information!
And discouraging. And confusing. Oh… and scary.
Who in the H am I supposed to follow? Believe? What am I supposed to do??
Enter, Mr. Barlow. He calmed me down. Said to call the doctor and take it one step at a time.
I did. I called Doctor #1 and she ran some tests and ordered an ultrasound.
Results: My thyroid was fine, but I was low on iron.
Turns out, she ran the archaic tests. Boo.
I was all set to call her back and demand further testing and to look at my neck, when a dear friend of mine pointed me to another doctor.
Had the neck ultrasound. That was weird. I’m used to seeing a baby during an ultrasound, not gray neck matter.
I called Doctor #2, and got an appointment for two days later (thanks to a cancellation). Got in, and she ordered tests.
Results: I was borderline low thyroid and incrediblely deficient in Iron and Vitamin D.
I was put on a prescription for Vitamin D3 and was ordered to take a ton of Iron. At this point I had been eating wheat free, and sugar free for 2 – 3 months, and sticking to Trim Healthy Mama.
She referred me to an endocrinologist (Doctor #3) to look at my enlarged thyroid because in the ultrasound there was a nodule found.
A nodule could mean three things:
- It’s fine.
- Your thyroid’s dead.
- It’s cancer.
We monitored my vitamin D and iron levels. Over the next few months they rose towards a healthy level. Doctor #3 ordered an uptake scan and blood tests. I got to swallow a radioactive pill!!
Results: My uptake indicated that it was a “normal” nodule. No one wants to explain what that means. Basically, it’s not cancer and we just monitor it.
In the words of my endocrinologist, “It’s not cancerous…[super long pause]…probably.”
She forgot to tell me about the blood test results: I had to remind her a few times to get the results .
I officially have Hashimotos, an autoimmune disorder.
My endocrinologist said, “oh it goes away, you don’t need to do anything to your diet or take meds.”
That is the stupidest thing I’ve ever heard a doctor say.
I told Doctor #2 that and she said she’d be finding me a different endo and would not be referring any more patients there.
Doctor #2 put me on an autoimmune diet and on thyroid medication.
I’m telling you. The autoimmune diet sucks. Straight up sucks. Like, I’m crying it sucks that bad.
I’ve read books on the Autoimmune Protocol Diet for Hashimotos and Autoimmune Disorders. They eat poop foods and take out all the good ones.
I made a list of all the foods I can eat, that I like to eat. Here they are:
- turkey bacon
- herbs and spices (but not the good ones like cumin, chili powder, pepper)
Here’s the list of foods I am not supposed to eat:
- ALL dairy
- nightshades (peppers, tomatoes, potatoes, etc)
- sugars (even stevia, xylitol, truvia, swerve)
- citrus fruits
- corn anything
Seriously people! Seriously.
Who wants to live like that?
They say, “oh you’re not deprived. You can drink bone broth and eat liver.”
That’s disgusting; don’t come near me with your liver-bone breath. I’ll throat punch you.
The funniest bit in The Paleo Approach about the Autoimmune Protocol (you can eat beef and pork with this one, but nothing else good) said, hey, if you don’t like fish you can eat offal. You know what offal is? Brains and guts of animals.
Then she said, if you want protein powder, go to the pet store. Buy some crickets. Dry them out, grind them up, and use that as your protein powder.
I kid you not. I even took pictures of the pages to prove it. Sick and wrong I tell ya. Sick and wrong.
What am I eating (or not eating)?
I’m cutting out all grains (which is in EVERYTHING), sugars (except for the sweeteners xylitol and swerve). I’m slowly cutting out dairy.
That’s it. That’s most of my diet anyway. You are not taking my tomatoes and peppers from me. You are not taking the only breakfast I have: eggs. You are not taking beef from me. I don’t give a rat’s behind, you’re not going to get me to not eat that stuff. They’re my favorite foods.
I’ll eat hard cheeses and butter every once in a while. Seriously, I am not going to be miserable eating chicken breasts, lettuce, and apples for my only food for the rest of my life every meal.
I have honestly tried the other foods that I say I don’t like. I do not like them. I cannot swallow them. Will I die sooner? Possibly.
Maybe in a few months I’ll be better able to cut some more things out, or at least, scale back on my frequency of eating them. For now, tomatoes are in nearly every meal.
And I’m okay with that.
After about a month of my thyroid meds I stopped losing weight and started to feel like garbage again. I also have Adrenal Exhaustion (worse than fatigue). I am now being treated for both.
I’ll go into what tests you should run and the symptoms and all that goodness in another post. I didn’t want your eyes to glaze over longer than was necessary.
In the end, I was lucky. It only took me 3 doctors to get it right. Many people have to go to 5 doctors or more to get one that will run the right tests and listen to them.
Why is this the case? I have no idea.
I wish you luck if you’re on a similar journey. If you ever need to talk to someone — I’m here.