Part 1- Obscure Hashimoto’s Symptom No One Really Talks About (Vertigo)

“There are other seemingly unrelated mystery conditions that have been strongly linked to Hashimoto’s, especially chronic hives and vertigo. While your doctor is likely to tell you that those conditions are unrelated and difficult to manage, I can assure you they are not.”

Hashimoto’s Protocol by Izabella Wentz PharmD

Even on the online Hashimoto’s communities, I’m part of, I didn’t come across anyone mentioning vertigo until I asked specific questions about it in a post.

This is why I wanted to write about it, if you are experiencing symptoms of vertigo, know that you are not alone. 

In this post, I will share what my vertigo symptoms are, how others may experience vertigo and list underlying causes of vertigo.

My Vertigo Symptoms

My symptoms are:

• loss of balance
• not being able to properly place myself in a space
• feeling like everything is tilting to one side
• blurred vision
• jumpy vision
• double vision at times
• migraines
• the sensation of ear fullness and pressure
• nausea
• sensation of falling

Triggers

• motion sensitivity
• light sensitivity
• blinking lights
• scrolling too fast on devices
• food dyes
• menstrual cycle
• speed, especially when driving or in a car
• slight changes in movement

Vertigo is defined as “a sensation of whirling and loss of balance, associated particularly with looking down from a great height or caused by disease affecting the inner ear or the vestibular nerve; giddiness. “Oxford Languages

Vertigo is and has been one of the most persistent, life-altering symptoms I have experienced with Hashimoto’s (way before I was officially diagnosed).

From 2016-2018, my vertigo symptoms were constant with no breaks. 

In 2019, I had eight months with little to no vertigo symptoms.  

Then at the beginning of 2020, my vertigo symptoms returned.

I listed my symptoms, but how does this actually feel as you move about your day? I will try to paint some common scenarios even though my words cannot fully capture the sensations.

Scenario 1

While driving my eyes begin to feel misty and clouded.  

The road seems like it’s tilting up towards the left. 

Passing objects such as other cars or the walls on the side of the highway, appear to be tilt towards me. 

This makes me feel lopsided.

I start to have trouble focusing on my lane, I can see the lines, but my body’s position doesn’t seem to match up where my eyes tell me I’m going.  

I feel displaced in my surroundings and floaty. 

Scenario 2

As I’m scrolling on my phone while seated, I feel jolted out of balance, thinking I’m falling off my chair. 

I realize my body hasn’t moved at all, even though it felt like I did.

Scenario 3

I’m walking down the aisles of a big supermarket, the ground beneath me feels like I’m walking on marshmallows.

This makes it hard for me to keep my balance. 

The bright lights and endless items on display cause my eyes to shift back and forth rapidly, having a hard time deciding on where to focus.  

Everything I see starts to mesh together. 

Scenario 4

I reach to get something and I miss.

My brain and eyes are not giving me the right coordinates in space. 

I often bump into things because of this.

Scenario 5

Driving on windy or hilly roads makes me feel like I’m in a boat that’s slightly rocking back and forth.

Each passing car causes my eyes to shift left to right rapidly. 

My eyes cannot decide where to look, even though my brain is telling them to look at the road in front of me. 

I have trouble perceiving where to steer my car.  

This makes me feel nauseated, dizzy, and anxious. 

How This Affects My Life

As you can see by these scenarios, driving is the biggest challenge for me when I’m feeling symptoms of vertigo. 

The tricky thing is the symptoms can come and go daily. 

I never know when I will go from being okay to suddenly having symptoms.

I’ve been far away from home several times when it strikes, making it hard for me to drive myself back.

So, I’ve learned to adjust my life accordingly. 

It isn’t easy giving up your freedom to go wherever you want and how far you want. 

By necessity, I limit my driving close by, and if it’s further I have to take city streets because taking the highway means high speeds which also trigger my symptoms.

I’ve clung to this verse:

Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first, I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it’s all you need.

My strength comes into its own in your weakness.

Once I heard that I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

The Message Translation. 2 Corinthians 12:10 

Let me tell you, I am learning to slow down through this!

I’m learning that I’m not all self sufficient and it’s ok to have a weakness and admit to it.

I’m shedding off my old way of being, that self sufficient, self reliant girl that thought she could conquer the world in her own whit and strength.

Testing

I mentioned my vertigo symptoms to my doctor, although she was very empathetic, she didn’t offer a diagnosis.

I was referred to an Ear Nose Throat (ENT) Specialist.

The ENT performed a hearing test, balance test, and some other tests I don’t recall. 

At that time my symptoms were so bad that I could not walk a straight line without falling over.

My ENT said jokingly that if I got pulled over by a cop, they would think I’m drunk. 

He sent me to balance therapy, which only helped just a little.   

He also referred me to get an MRI. 

Aside from my balance test, I passed all other tests and nothing was resolved. 

Since the ENT couldn’t find anything wrong with me, I was referred to a Neurologist.  

The Neurologist performed an electroencephalogram (EEG) study in the office, nothing came up. 

So I had a three-day EEG study at home. 

Once again, nothing came up. 

The Neurologist suggested I see a Heart Doctor next.  

As you can see this is becoming a rabbit trail of a process. 

I decided to not see yet another type of doctor and I’m in the process of getting a second opinion from a well-respected and recommended Neurologist in another city (I will keep you all posted on this). 

I’m also looking into eye therapy per my Optomotrist’s suggestion.

What I Have Noticed About My Symptoms

I felt my best in 2019 when I was following a strict elimination diet (Autoimmune Protocol or AIP, see resources below) and focusing on getting at least 7.5 hours of sleep per night. 

During this time, I felt almost 100 % “normal.” 

My vision wasn’t as blurred. 

I stopped seeing the world at a tilt. 

I tried out driving a small stretch of the highway and I felt “normal.” 

Before I knew it, I was back to driving 100%.   

My migraines nearly disappeared.

Unfortunately, I’m currently in a “flare” since January of 2020. 

It started after I came back from traveling for two weeks.

I visited Mexico, and my diet had to adapt to what was available for me to eat. 

I ate a lot of corn, nightshades, sugar, and dairy. 

All of which I had eliminated for the 11 months prior.

I have since cleaned up my diet again and I’m sticking to the foods I learned are best for me from doing the AIP diet. 

I don’t have the “what” figured out yet, but I do have some of the “why” figured out.     

Here Are Some Resources on Elimination Diets:

What is the Autoimmune Protocol: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Uncover Your Hashimoto’s Root Cause With An Elimination Diet: https://thyroidpharmacist.com/articles/elimination-diet-for-hashimotos/

What Is AIP, The Definitive Guide: https://autoimmunewellness.com/what-is-aip-the-definitive-guide/

Book: The Paleo Approach by Dr. Sarah Ballantyne, PhD. 

Vertigo May Look Like This Too

I wondered if anyone else with Hashimoto’s felt the way I do, so I recently asked these questions on a Facebook Hashimoto’s group:

“Does anyone experience balance issues?

Issues driving because of the balance issues?

If so, have you found anything that helps you with this?

Have your doctors given any answers to what is causing it and how to heal it?

I’ve been dealing with balance issues since being diagnosed. For me, it comes and goes but is especially triggered when driving higher speeds, or driving inclines/ curves, etc. It feels like I’m going nuts, I’ve had many tests done and nothing shows up.”

To my surprise, a handful of women responded with ways their vertigo was manifesting itself, here are some of their responses:

• “I was diagnosed with Vestibular Migraines at the same time as my Hashimoto’s diagnosis.”
• “Yes, but I wouldn’t call it balance issues.  I’d say more displaced, issues with depth perception, feeling of impending doom when riding as a passenger and sometimes driving.” 
• I have issues with veering to one side when my levels are off. I’ve also had spells where I can’t look at anything passing me at speed–even scrolling too fast sets it off.”
• “…sometimes when walking, I will fall over for no reason.”
• “ I was diagnosed with vestibular and facial migraines…”
• “…room spinning even when eyes closed.”
• “…recently have noticed balance issues…”
• “I get dizzy when my levels are wrong. And I have noticed it while driving. Especially early in the day before my meds kick in.”

I felt relieved that I’m not alone and that what I’m experiencing is a real thing. 

My heart also goes out to all these women and readers who are dealing with this. 

It can alter how you live your day-to-day life. 

I think it’s important to write about this because if you are experiencing these symptoms you may think you’re alone, or that it is some other random symptom not related to Hashimoto’s. 

But be assured, there are many of us that are experiencing this obscure symptom that isn’t usually associated with autoimmune thyroid.

Possible Underlying Causes

So we know that Hashimoto’s can increase your chances to have vertigo symptoms, but what causes it? 

There are many disorders that can be the underlying root, I will review some causes and their symptoms that related to vertigo.  

1. Vestibular Migraine (VM)– VM is interesting in that it does not always cause a headache and has many associated symptoms such as:

• Nausea
• Vomiting
• Balance problems
• Extreme motion sensitivity
• Feeling sick or dizzy  with head, eye, or body motion
• Feeling unsteady
• Feeling like you’re in a rocking boat

You can have migraines for years before other symptoms appear, or can have these symptoms without a migraine. 

2. Meniere’s disease–  Recurring episodes of vertigo, heating loss, ringing in the ear (tinnitus, and feeling of fullness in the ear.

3. Benign Paroxysmal Positional Vertigo (BPPV)– Dizziness, the feeling that your surroundings are spinning or moving (vertigo),  a loss of balance or feeling unsteady, nausea, vomiting

4. Food allergy– “Having food allergies or sensitivities can lead to dizziness and/or lightheadedness.  Of course, not everyone who has a food allergy or food sensitivity experiences dizziness or lightheadedness, but it’s still something to look into.  Elevated histamine levels might be responsible for the symptoms, and as a result, sometimes antihistamines are used “ 

5. Drop in blood pressure–  When your blood pressure drops suddenly, you can feel lightheaded and faint. 

6. Neurological conditions– “Some neurological disorders — such as Parkinson’s disease and multiple sclerosis — can lead to progressive loss of balance.” 

7. Low iron levels (anemia)– Dizziness.  

8. Low blood sugar (hypoglycemia)– Dizziness (lightheadedness) and may be accompanied with anxiety.

9. Nystagmus–  A feeling that the world is moving, loss of balance, vertigo, dizziness, inability to walk straight, blurry vision and jumpy vision. 

10. Labyrinthitis and Vestibular Neuritis– Vertigo, loss of balance, inability to walk straight, nausea, and vomiting.

As you can see, many of these disorders share symptoms which can make it tricky to diagnose your underlying cause. 

I have a strong suspicion that I may have Vestibular Migraines but have also experienced the symptoms of Nystagmus with blurry/ jumpy vision and a season when it was hard to walk in a straight line. As mentioned earlier in this post, I have some upcoming appointments and hope to get some answers soon.

The Takeaway 

Vertigo has been strongly linked to Hashimoto’s, even if your doctor does not make that connection. 

There are other people with Hashimoto’s that experience vertigo, but probably do not think it is related and therefore do not speak about it much.  

Feeling dizzy is not the only symptom of vertigo.  

Symptoms can present themselves in many ways such as losing your balance, blurry vision, trouble with depth perception, and many other manifestations. 

There are many possibilities for the underlying cause of vertigo, that can make it tricky to treat and diagnose. 

Takeaway Encouragement

Even though I still experience these symptoms and haven’t received an official  diagnosis, I have experienced a significant improvement in symptoms by making  lifestyle changes and eating healthier.

Perhaps, in the beginning, when I first had a long stretch of relief from symptoms I was too simplistic thinking I beat vertigo forever. 

I’m learning that this will not be a linear process, that I will win some, and lose some. 

If you are in the same boat, do not get discouraged! 

It’s easy to.

But keep fighting for your health.

Keep praying.

Keep hoping. 

Keep tweaking your diet as needed. 

Don’t be hard on yourself (as I have been through some of this process).

Trust in God that He has a purpose for this.

 For now, we see in a mirror, dimly, but then face to face. Now I know in part, but then I shall know just as I also am known.

1 Corinthians 13:12