If you follow me on Instagram, you know I’ve had some struggles the last few months – seven to be exact. I have been in a bit of a daze since getting diagnosed with two chronic, invisible illnesses. But my journey with Hashimoto’s Thyroiditis and Postural Orthostatic Tachycardia Syndrome (POTS) actually started a long time ago.
Normalizing the Abnormal
The first thing people are surprised about is how “sudden” this all came on. Well, it really wasn’t sudden at all. For as long as I can remember, I’ve had inexplicable symptoms that would leave doctors perplexed. Test result would come back normal, symptoms would subside, we’d both be on our way. I normalized my symptoms for so long that it got to the point where I didn’t even know if there was something wrong, but then…
My vision would randomly be compromised. Depth perception would be off. I’d blink and see spots. Peripheral vision would turn into a tunnel. Everything would be fuzzy, like I couldn’t get my eyes to stay focused. I’d become super lightheaded when standing, dizzy when walking, sometimes just sitting. I’d consistently feel faint without actually fainting.
My arms and legs would be tingly even while laying down. Toes and fingers so cold they would turn purple. Inability to regulate temperature. My speech would slur at random. Frequent migraines coming and going that would lay me out.
Not to mention my intense depression and anxiety. Feeling spacey and disconnected. Chest pains. Heart palpitations. Tiredness and fatigue. And countless other oddities that just didn’t feel right. All these things could happen while driving, working, hanging out. There was no rhyme or reason to it. Symptoms occurred in both my most unhealthy and healthy of times.
Every time they would flare bad, I’d go to the doctor. Guesses for a diagnosis: maybe it’s MS, conscious seizures, vitamin deficiencies. MRIs, EEG, EKG, tons of blood work would be ordered – they couldn’t find anything, so it must be normal. I’d write it off as “everyone must feel this way from time to time” or even “this must be in my head”. When symptoms would subside, I’d pray whatever it was would be gone for good.
Persisting Through Rock Bottom
After spending most of my life writing off these symptoms, everything crashed down around me September 2018. This was the first time I actually fainted. There are more times I can count where I’ve been close and have been able to sit before it happened, but this was the first full pass-out incident. Back to the doctor we went, and this time we were not going to write it off.
Thankfully my primary doctor was just as determined as I was for answers, even though I had only been going to him a year. Since he had already checked for MS (through an MRI that came back normal) and vitamin deficiencies (blood work that only came back with low Vitamin D), he said “we’re going to focus on your thyroid and your ticker”, pointing to my heart. He ordered more blood work, an echocardiogram, thyroid ultrasound, and a tilt table test.
Every test – every. single. test. – came back with something. It was overwhelming, but we were thankful for answers. Off we went to see the specialists.
Meeting With the Specialists
We quickly got in to see a cardiologist. He reviewed the echocardiogram, which showed I have a small hole in my heart between the upper chambers, called a Patent Foramen Ovale or PFO. This is not as scary as it sounds – turns out, it is really common and many people go their lives without knowing they have one. And while in some cases, a PFO can cause some symptoms, mine does not after some more testing. So something to monitor and take a baby aspirin daily (to mitigate the increased risk of blood clots), but not a major concern.
We then went to see an endocrinologist because of some small nodules that were found on my thyroid and slightly outside of normal blood work. After her exam and questions, she asked if I had ever been tested for Hashimoto’s. I really didn’t even know what Hashimoto’s was; I’d only heard of it from a blogger I follow on Instagram. The doctor said “I just kind of have this feeling…” – and her feeling was correct.
Finding Relief Through Diagnosis
She ran additional thyroid panels which showed my TSH level was at 12.8, an increase from 5.6 just 6 weeks prior (normal range is around 0.4 – 5). It’s a little counterintuitive, but when the TSH level is outside the high end of normal, you have hypothyroidism (underactive thyroid), and outside the low end is hyperthyroidism (overactive thyroid).
Another test came back positive for Hashimoto’s. When they first called with the results and I asked what Hashimoto’s was, the receptionist said she had to Google it – I kid you not. So I kindly asked for the doctor to give me a call, and when she did, she told me Hashimoto’s was an autoimmune disease that attacked the thyroid and started me on medication to stabilize the thyroid levels.
Postural Orthostatic Tachycardia Syndrome (POTS)
That left the tilt table test. My primary doctor reviewed it and knowing all my other symptoms, diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS). I heard of POTS because one of my cousins got diagnosed with it many years ago but didn’t know the nuances of it. My doctor didn’t really either, but he said essentially it affects the nervous system. Heart rate, blood pressure, and circulation don’t work together properly. So he said compression stockings to promote circulation, increased salt to raise and stabilize blood pressure (mine is really low), and increased fluids to increase hydration and formation of blood cells. And rest. Lots of rest.
For such a heavy diagnosis, I didn’t feel totally comfortable with my doctors lack of awareness. My cousin recommended her doctor who is a POTS specialist, so I got on his waiting list, which at the time was around six months long.
But I finally had answers. Having these two diagnoses brought me so much clarity and actual peace – this stuff wasn’t in my head this whole time.
Finding the Right Care
Since September, the symptoms I mentioned above no longer came and went; they became constant and worsening. Specifically the dizziness, lightheadedness, fatigue, body aches, and brain fog (which is what I learned was the term for that disconnected/in-a-daze/etc feeling). After I was on my thyroid medication for six weeks, we retested. Surprisingly, my thyroid level normalized. When I asked my endocrinologist why I was having worsening symptoms, she referred me to a rheumatologist saying the thyroid wouldn’t be causing these issues. I wasn’t convinced that was what I needed but scheduled an appointment anyway.
That same week, I got a call from the doctor I was on a waiting list for. He still wasn’t available for another few months. But did I want to see his nurse practitioner who he trained personally, who could see me that same week? Heck YES. We met with him a couple days later.
Friends, I cried after that appointment. He listened, understood, and believed what I was saying. He thoroughly researched all my lab work and notes that had been sent over to him. This was unlike any experience I had with a medical professional before. He actually cared. And most importantly, we had a plan of action.
My fist tilt table test wasn’t done correctly; they hadn’t properly documented throughout the test, so it needed redone before he could formally sign off on my POTS. He ordered a ton of blood work and two other tests to make sure I didn’t have nerve damage from my tingly fingers and purple toesies. And he said while it “wouldn’t hurt” to see the rheumatologist, I should consider a second endocrinology opinion.
We said yes to it all, going to lots of appointments over the next month. We found a new endocrinologist and ended up cancelling the rheumatology appointment.
Riding the Waves
Most of the tests came back normal and tilt results came back with a formal POTS diagnosis (indicated by the heart rate shooting up over 30 BPM just from standing up). So back we went to our new doctor to discuss a care plan. It includes the same treatments my primary doctor had me start as well as some other conservative approaches to try over the next month or so and will start medication if I cannot manage the POTS symptoms. We are still adjusting the dose for my thyroid, which has given lab results all across the board the last couple months.
While I’m having difficulty managing all this, I am working towards finding my balance. Every day is a test to show myself grace and patience. I’ll be honest with you: there are days I’m fighting this kicking and screaming, feeling super sad and sorry for myself. Why is this happening? What will my future hold? So many what-if’s and why-me’s. But at the same time, I have found so many gifts during this season of my life.
We don’t really know what caused these conditions or why they have worsened so much over the last seven months. No, I don’t know what my future will hold or look like, but does anyone? For now, I am focusing on each day at a time and doing the best I can.