Last Updated on September 24, 2023 by Anna Baumann
Living with Graves Disease and Other Strange Health Conditions
I’m in the habit of blaming all of my aches, pains, and bodily dysfunctions on Graves Disease. I think it’s the same with many Gravesters. Whenever something feels even a little bit off our first thought is, “Could this be Graves-related?” The truth is that although it is common for people to have more than one Autoimmune Disease, not everything is Graves-related. But, I am learning (first hand) that a lot of other non-autoimmune diseases spin off of Graves. Some of them have strange and frightening symptoms! Since I know I’m not the only one out there living with Graves Disease and other strange health conditions, I thought I’d share my latest woes.
Graves Disease and Thyroid Eye Disease used to be my only serious health issues. Well, I did deal with Perimenopause for quite a while. But I think most people consider that more of an inconvenience than a serious problem.
Last March (2022) I woke up one morning with pain in the toes on my left foot. I’m not a graceful person and often bump into things, so I fluffed it off and got on with my morning. By the time I got to work and put my foot on the ground to get out of the car, the pain was unbelievable! I removed my shoe and sock and saw that my toes were purple and yellow on the bottoms and two of them were dark purple and even a bit swollen.
I was really scared and not even sure what kind of doctor I needed. So I called a Podiatrist and limped along for two days until she could see me. After taking an x-ray to be sure I didn’t have broken toes, she confirmed that I have Raynaud’s Syndrome. (This is a pic of my sad, painful toes.)
What is Raynaud’s Syndrome and What Causes it?
I’ve never heard of it before, but Raynaud’s is a condition that decreases blood flow to your extremities.
My Podiatrist told me that cold temperatures trigger attacks and that it is common in people with Hypothyroidism.
Raynaud’s can be either Primary or Secondary. So either I have it because my thyroid removal made me Hypothyroid (secondary), or it’s a precursor to another Autoimmune Disease (primary). But, great news! After a blood draw that extracted TWELVE vials of my blood it is determined that so far, I do not have another Autoimmune Disease. (HOORAY!). It’s “so far” because unfortunately, they can pop up at any time.
Graves Disease is a crafty little devil! It made me HYPERthyroid, so I had a thyroid removal. That made me HYPOthyroid, which caused Raynaud’s Syndrome. So fixing one problem eventually caused another.
How I Cope with Raynaud’s Syndrome
Raynaud’s doesn’t only affect feet. An attack can happen in fingers, toes, and noses too. But since I’m not eager to experience that horrible foot pain again anytime soon, I give my tootsies extra insulation. I told my Podiatrist at my follow-up visit that two pairs of socks are my new normal. Her response was, “Good call”.
I hoped that I could still wear cute sandals and slides in the heat of Summer. But I can’t because of air conditioning. Pain, tingling, and discoloration made me run right back to double socks and closed shoes. (Closed shoes that are a half-size larger than I usually wear to accommodate the extra pair of socks.)
A warm body core
My Podiatrist’s main advice was to keep my body core warm. She said our bodies direct warm blood to the center when we’re cold. Which makes our extremities get even colder. So when you have Raynaud’s it’s important to think ahead and ensure you’re properly dressed so that you don’t feel cold.
I bundle up well in the Winter and wear super warm mittens. In Summer, I bring hoodies and sweaters everywhere. My favorite lightweight hoodies are these Hanes Jersey Hoodies. I have five of them! They’re thin and cute and fit well in my purse. I just stuff one in there before I leave the house and I’m good to go for running errands in and out of air-conditioned places.
Don’t hold cold stuff
My fingers get discolored and uncomfortable just by holding a cold drink. Good thing for me I love hot tea. But for cold drinks, I use Tervis Tumblers. There’s nothing like them for keeping the cold inside the glass. If you don’t like them, then use cups with handles so you’re hands stay off of the cold parts.
Stress is a trigger for Raynaud’s. Coincidentally it is also a trigger for Graves Disease.
The thing about stress is that we can’t always avoid it. Usually, stressful situations come at me too fast for me to dodge them.
Last September (2022) I experienced another strange (and terrifying) health issue. I woke up in the middle of the night and something felt off. I wasn’t sure what it was so I sat up. All was quiet so I looked at the clock, repositioned my pillow, and laid back down. Suddenly the room was spinning; fast! I screamed thinking and hoping it was a nightmare. Sadly, it was not and the spinning quickly caused severe nausea. I fell twice on the way to the washroom and remember thinking, what the hell’s happening, and what if it doesn’t stop? The episode lasted maybe 5-10 minutes. And for the rest of that night and throughout the next day, I felt sluggish and lightheaded.
Normally a violent, room-spinning incident would prompt me to contact my doctor immediately. But Google seemed to think that an isolated episode of vertigo was nothing to be concerned about. So I decided to take a wait-and-see approach. If it happened again, I’d get it checked out.
The next episode happened about a month later. I messaged my Endocrinologist because (of course) I assumed it was Graves-related. She said she didn’t think so and referred me to an Otolaryngologist (ENT).
They did a hearing test and a VNG test and determined that Vestibular Migraines cause my vertigo. I always thought migraine meant pain, but vestibular migraines can happen with or without it. That’s a bright side to this for me; no pain.
How I Cope with Vestibular Migraine
There is no cure for Vestibular Migraines. Like Graves and Raynaud’s, you treat the symptoms and do the best you can. Migravent is a supplement that contains Magnesium, Vitamin B2, and Coenzyme Q10. A Neurologist created it and my ENT highly recommended it. I’m glad she did because I haven’t had a full-out vertigo episode since I started taking it. I feel so blessed! It doesn’t work for everyone. But, it works for me like a miracle!
I still have occasional mild tinnitus (ringing in my ears) along with feeling slightly unbalanced. That’s when I know I’m having an episode. But, it’s nowhere near as violent and terrifying as my first experiences.
Go somewhere dark and quiet
I’m not a fan of loud noises to begin with. And when I feel like I might be in a Vestibular Migraine episode, noise makes me more uncomfortable. When I can, I move to a quiet room and turn out the lights.
If I’m at work and can’t physically relocate, I close my eyes as often as possible and try not to move around too much. It’s not perfect but it does help.
Because of course, it’s a Vestibular Migraine trigger!
The Role of Stress in Graves Disease and Other Strange Health Conditions
There was an entry that did stand out though. It was the day I marked as the one-year anniversary of the end of my cycle. I achieved the peace of full-on Menopause! I describe it as peace because Perimenopause was zero fun for me, and I was happy when I wrote that entry. For me, it was a good thing that promised less stress. Then it hit me that my cycle started when I was 9 and ended at almost 52. For my body, that’s a huge change, and what’s more stressful than change?
My new theory is that although I perceived Menopause as a stress reduction (emotionally), my body was still adjusting to its new hormonal status (physically). It’s possible that that transition period was a stressful time for my insides. And maybe that stress caused some things to pop out of whack. I could be wrong. There may be no correlation. But it makes sense to me so in lieu of a better explanation, I’m sticking with it.
Just Roll With It
I could wake up every day fearing the next strange thing that goes wrong in my body. But that’s no way to live. Having Graves Disease was the beginning of me realizing that I have no control over my body. I do my best to take care of it. And to find new ways to soothe it when it goes off the rails on me. Sometimes it’s scary but what doesn’t kill me makes me stronger so, I just roll with it!
“The best of healers is good cheer.”
Disclaimer: This post is based on my own personal experience. It is not intended as medical advice. It is not intended to diagnose, treat, cure, or prevent any disease or medical condition.