I don’t have a final diagnosis yet, and what I’ve been diagnosed with so far will change my life forever.
I have Multinodular Goiter in my thyroid.
Over the last several months, people around me have been noticing how much weight I’ve lost since my gallbladder surgery last year. I have to admit, it was really nice at first.
Before the surgery, I got all the way up to 169 pounds. So when the pounds started to melt away, I was pleasantly surprised.
Then the weight kept melting off and didn’t stop. When I dropped below 120 pounds, I thought it was curious. I hadn’t weighed that little in decades. When I fell below 115 pounds, I knew something was wrong.
Especially since my hair had been falling out, I hadn’t been sleeping well, my energy levels had been all over the place and I was feeling more moody and anxious than normal.
I wrote it off. It must be the effects of spring allergies. And my hormones must be balancing out with my new weight. My hair is just shedding now that spring is here. I could explain it all away.
I explained it all away until I couldn’t anymore. I felt an internal sense of urgency that something had gone wrong in my body, and fast.
I made a doctor’s appointment for a checkup because there’s no point in sitting around wondering. I assumed if anything was wrong, it was something from my surgery or residual effects from the pancreatitis, so I wanted a referral to a gastroenterologist.
The doctor happily gave me that referral and the others I needed. However, she noticed that my thyroid was swollen during the exam.
She ordered thyroid hormone tests. They came back normal.
She ordered thyroid antibody tests. They came back normal.
She ordered an ultrasound. We learned I have a multinodular goiter.
It explains why I have started to have so much trouble breathing and speaking comfortably.
It explains why I’m exhausted yet unable to sleep.
It explains why half of my hair has fallen out and why I feel like I’m walking through a thick fog.
It explains why my mood shifts from high to low and back again.
It explains so much.
Now comes the scary part. Waiting to see an endocrinologist so I can get a biopsy.
I have nodules in both sides of my thyroid.
On the left side, the largest nodule is mostly solid and 3.5 cm long. That same lobe has another cystic nodule that’s 3 cm long. Then there are smaller ones scattered in the gland.
On the right side, there is a solid-cyst lesion that’s 1.8 cm long containing a small solid 7 mm nodule. This is along with multiple small benign colloid cysts in that side.
I’m not going to lie. I’m freaking out – completely and totally. Mostly about the large, solid nodules since those pose an increased risk.
The cysts aren’t there because of hormone or antibody dysregulation, so it’s hard to think it could be anything other than the Big C.
I’ve had melanoma, so I’m no stranger to the beast. That was caught very, very early, cut out and that was that.
I’m afraid this thyroid problem has been growing far longer. That it explains why I couldn’t lose weight for a few years and why, now, I can’t keep it on.
That it explains the neurocardiogenic syncope diagnosis. That whatever destroyed my gallbladder is what is now destroying my thyroid.
That my thyroid has been sabotaging my health for years, and the doctors missed it – because my thyroid levels have always been normal when they were tested so there was no indication of an issue.
What I’m most afraid of is that I won’t be able to stop it in time. That I’ll do everything I possibly can, and it won’t be enough. Just like with my gallbladder. That I’ll lose the fight.
That I’ll leave this earth before completing my work here. And that the work I have done educating people about health will simply become a joke – because who takes health advice from someone with cancer?
Worst of all, I fear that I’ll leave my daughters without a mother and my husband without a wife.
It hurts so much to think of leaving my family and the amazing life we have struggled to build. As much as I want to keep my spirits up, to keep a positive attitude, it feels impossible right now.
It feels like the universe wants to rip the happiness right out from under my feet just after I’ve found it. Right when I have reconnected with the deepest parts of myself that I’d hidden away, it’s time to go through an even bigger struggle.
Why? Why is this happening to me? I’ve had my fair share of near-death experiences. I really think I have that one down.
I am not ready to go through something so big again. I almost died 15 months ago. I don’t want to look death in the face again already. It’s not fair.
I make healthier choices than 90% of the people in this country. And yet I’m sitting here in tears, scared that I’m about to get a life-changing diagnosis that is going to rip me out of the arms of my loved ones.
That like everything else in life, I’ll be the rare case people talk about. The one who gets the rare form of thyroid cancer. Because that’s my life.
When I had my tonsils removed, I was the rare case who had an artery rupture a week later, causing me to lose a tremendous amount of blood along with my sanity.
When I was diagnosed with skin cancer, it was melanoma, not one of the less scary types.
When I had the gallbladder attack that finally sent me to the hospital, it was because of pancreatitis. Rare and very, very dangerous.
So why would anything be different this time? It’s like I purposely set up a very difficult life path for myself. Like I wanted to challenge myself to my absolute limits.
I know there is a reason for this like there is for everything else. I know there is a lesson to be learned. I know there is – there has to be.
Right now, I’m trying my best to see it for what it is. A roadblock I can get past if I can just find the right approach.
But right now I can’t see around the big giant effing bolder in the middle of the road. I’m just standing in front of it, wondering what exactly it’s made of. Because until I know exactly what I’m looking at, it’s hard to forge my path.
Really, really hard. Waiting is the absolute worst.
And the struggling healthcare system in this country doesn’t help one single bit. My doctor received my ultrasound results back the same day of the procedure and she didn’t get them to me until I asked 3 days later. I won’t wait that long again before opening my mouth.
Next, the referral for the endocrinologist was put into the wrong department, so it had to be re-submitted. Thank goodness I was able to talk them into approving it that same day.
Now there are around 120 people on the endocrinologist waiting list ahead of me. They’re currently booking appointments for the end of August, so I have to guess that’ll put my appointment towards the end of September. They book in order of referrals received.
Something is wrong with this picture. I am highly symptomatic. I’m having issues breathing and have discomfort in my neck. And according to my 23andme data, I have gene mutations that indicate an increased risk of thyroid cancer, including one of the rarer genetic forms. Yet I wait.
I sit here and wait, hoping that I’ll get a biopsy in time if it is a rare form. And I sit here and pray it’s not the genetically inherited form of thyroid cancer, because if it is, the data says my daughters will almost certainly walk the same path in the future.
Even if every single one of those cysts and nodules are benign and there isn’t a speck of cancer in any of them, I still have a rough road ahead of me.
Most thyroid nodules don’t cause any symptoms. I’m not so lucky. I often have the sensation of breathing through a straw so I can barely speak 2 sentences before I have to huff and puff to catch my breath. I feel like I’ve been run over by a truck most hours of the day, my body never stops shaking inside and my thinking is foggy.
This situation is going to have to be dealt with even if it’s not cancer because it’s impacting my ability to function in my life.
That’s scary, because the conventional treatment either way is surgically removing my thyroid and going onto thyroid hormone replacement therapy for the rest of my life.
There is so much up in the air right now and nothing but time to think about it. While we’re waiting, we’re doing everything we can to take a natural approach.
I cut alcohol out of my diet almost a year ago so that isn’t an issue. Now I’ve eliminated all sugars, dairy and grains as well. I’ll be eating a very low carb, vegetable heavy diet to try and starve whatever this is out of my body.
If you follow me on Instagram, you know that I am also doing a parasite cleanse. There are so many links between parasites and thyroid health as well as parasites and cancer that is just makes sense to try it to see if it might help.
I’m taking other supplements to try to bring my body back into balance and I’m exercising gently when I feel up to it. I’m refusing to accept stress in my life at all.
I’m doing everything I can so I can continue to live this beautiful life that I’ve built with my family.
I’m not ready to say goodbye to it. I’m not ready to give up on my dreams. I still have so much to do.
I’m not giving up – it’s not in my nature – and I’m scared for the future.
I will be sharing my journey with you until I’m back to 100% health because I know there will be a lot of questions. And I need an outlet.
I have been resting a lot more than normal, so I may not post as much of my normal DIY and recipe content for a while. I do have many of these types of posts saved up that I haven’t shared yet, so I will trickle those out probably once a week on the blog to keep your DIY fixes going.
In addition, Brian will be helping a lot more with content creation on the blog. I’m so grateful to have him by my side while I’m going through this. I don’t know what I’d do without him.
If you’re the praying type, please pray. If you’re the woo-woo energy loving type, please send plenty of healing energy my way. I can use every bit of help I can get right now.