I love a medical mystery that gets solved by a patient, don’t you? In May 2009, one of my regular readers – known to me and other readers here simply as JetGirl – experienced what she calls “classic heart attack symptoms” of very sudden onset, and sought help immediately at the Emergency Department of a Los Angeles hospital. The 45-year old former airline pilot was released from hospital after a week’s stay in the Coronary Care Unit with a vague cardiac diagnosis of ischemia*.
Six months later, JetGirl once again experienced more cardiac symptoms including “massive chest pain” and shortness of breath. This time, nothing was found.
She was subsequently diagnosed with coronary microvascular disease (MVD) and coronary spasm and was prescribed medications to treat those symptoms. But JetGirl didn’t seem like your typical MVD patient, as she describes:
“To his credit, the doctor did say that it didn’t seem the right diagnosis since I had zero risk factors, and my experience was different enough from other patients.”
In March 2011, and feeling increasingly ill, she experienced another cardiac event – diagnosed by some doctors as a myocardial infarction (heart attack) but by others as a massive coronary spasm. She explained:
“At that point, I was so debilitated, I had to leave my job. I’ve been a ‘couch girl’ since then, with ever-worsening symptoms.”
At about the same time, JetGirl had a benign adrenal gland tumour called a pheochromocytoma removed. Six months later, another bout of severe cardiac symptoms made doctors suspect a new pheochromocytoma, but they found nothing. Because JetGirl has a family history of hypothyroidism, she had also undergone thyroid tests for 20 years – always testing in the “normal” range, even after the mid-2000s when guidelines for range of normal were modified.
But in May 2013, after four long years of failing health, her thyroid test results showed a slight change for the first time. When her doctor reviewed the test results, he wasn’t too concerned about JetGirl’s underactive thyroid, but noted that her cortisol level was “out of normal range”, and decided to refer her to a new endocrinologist.
Meanwhile, JetGirl’s overall health had been deteriorating alarmingly, as she explains:
“In early August, I was told to ‘put my affairs in order’, that I likely had less than 12 months to live. My heart rate was down to 43, my blood pressure only 75/45, and I was passing out from hypotension every time I stood up.”
More thyroid bloodwork showed a slight issue with her T4 levels, but test results were within normal limits on all other levels. JetGirl decided to consult Dr. Google, and I’ll let her tell you in her own words what was about to happen next:
“Prior to seeing the endocrinologist to discuss these test results, I had Googled “coronary spasm and hypothyroid” – and sure enough, I found a published study that showed untreated hypothyroidism COULD result in coronary spasm, and that it was completely reversible if the thyroid was treated.(1)
“So I brought some pertinent studies to the endocrinologist’s appointment. Even as he was telling me that I am not hypo enough to treat, I begged him to let me try the synthetic thyroid hormone Synthroid for six weeks just to see if it would work. He was skeptical, and said the best it would do was give me 10 extra beats on my heart rate.
“But EXACTLY five weeks and two days into my six-week trial of Synthroid, I woke up and the brain fog was completely gone, energy level was positive, no chest pain, no shortness of breath, no effing fatigue – just freaking gone!!”
That happy day was September 4th, 2013.
JetGirl now reports that she’s back in the pool, swimming faster than she has been able to swim for the past four years. She was able to run a 10k race on Thanksgiving weekend, and even hike in Yosemite trails where she’d been previously unable to get to 1,000 feet without massive chest pain. And two weeks ago, she completed a half-marathon. She adds:
“What is most important is I don’t feel drained as I am exercising, I can catch a second wind during exercise, and I don’t need a three-hour nap after exercise – all of that was missing during these past four years.”
“I am SOOO grateful that the new endocrinologist didn’t dismiss the crazy patient with the handful of scientific papers whom he’d barely met!
“He told me recently that it was my desperation that he just couldn’t ignore.”
If you’re like me, your first question might be: what about all those years of “normal” thyroid test results that kept JetGirl from access to treatment? She explains:
“Neither the cardiologist nor the endocrinologist can completely explain this, because neither thought the Synthroid would work.”
What is the thyroid? It’s a butterfly-shaped gland in the front of the neck that wraps around the windpipe. Hormones produced by this gland are necessary to stimulate metabolism, growth, and the body’s capacity to process calories. Thyroid disease is relatively common, with current estimates suggesting it affects up to 15% of the adult female population. Hypothyroidism happens when you have an underactive thyroid. Hyperthyroidism happens when you have an overactive thyroid. Both conditions are more common in women than in men.
Considerable research has been published suggesting a link between thyroid disease and cardiovascular disease. For example, researchers Klein and Danzi observed in that original 2007 research that JetGirl found(1):
“Cardiovascular signs and symptoms of thyroid disease are some of the most profound and clinically relevant findings that accompany both hyperthyroidism and hypothyroidism. Restoration of normal thyroid function most often reverses abnormal cardiovascular hemodynamics.”
Dutch researchers reported a link between hypothyroidism and heart disease among women in the so-called Rotterdam Study, published in the journal, Annals of Internal Medicine. Women with subclinical hypothyroidism were almost twice as likely as women without this condition to have had heart attacks.(2)
And Finnish researchers also identified a functional link between hypothyroidism and myocardial infarction/vasospasm in their 2009 study(3).
Meanwhile, JetGirl recommends two helpful resources for those seeking more information. She says:
Mary Shomon has fantastic resources on her thyroid disease page on About.com. She has also written a number of books and explains endocrine system function well.
Janie Bowthorpe‘s book Stop the Thyroid Madness. It was the first book I read once I began the thyroid part of the journey. Very good explanations on how you can test “normal” but feel like complete crap.
JetGirl now describes her remarkable chain of events during the past few months as “miraculous”, but also believes that there’s clearly a medical explanation behind all of it.
Meanwhile, she’s “making plans to be walking the Camino de Santiago in the spring in gratitude for feeling energized again” and she wrote this poem to explore her 4-year journey:
A Cardiac Journey
When I first got sick and we figured it out,
The docs said surgery will do –
A quick snip snip and then a short trip
Through the famed halls of ICU.
So I said, “Okay, I can do recovery;
Get me back to my work and my play.
‘Cause I’m tired of naps but I can adapt
To a slower pace on some days.”
Then the symptoms came back unexpectedly.
Once again for a tumor we searched.
Instead, we did find, the heart in decline –
No worries, it could be reversed.
I then agreed most reluctantly
To take a huge pile of pills –
“Your time will fly; you’ll be well by July;
You won’t ever remember being ill!”
So I took the meds conscientiously;
How could I do any less?
But the MI that came, was a shock to the game
Now, how to clean up this mess?
I finally decided on one fateful day
The job had to go; it was best.
I knew in my heart a completely fresh start
Would give me a chance for success.
And then we came to the next health thing –
A shortness of breath that won’t quit.
Heart failure, they say, was just steps away
With dysfunction diastolic.
Four years have passed in this saga of mine
As symptoms ebbed and they flowed
It was hard to remain – optimistic or sane
What was the next system to go?
It was Doc #40 (plus or minus a few)
He figured it out, finally
NOT cardiac, but low thyroid, in fact
That was causing all of my grief.
So I sit here today, a girl with her health
And no one more grateful than me!
The lesson in here is to persevere
Keep faith that you will succeed!
* Ischemia: an insufficient supply of blood to an organ like the heart, usually due to a blocked or constricted artery
(1) I. Klein, S. Danzi. “Thyroid Disease and the Heart.” Circulation. 2007; 116: 1725-1735.
(2) A.E. Hak et al. “Low Thyroid Function without Symptoms as a Risk Indicator for Heart Disease in Older Women.” Ann Intern Med. 2000;132(4):270.
(3) R. Sipila et al. “Hypothyroidism, Raynaud’s Phenomenon and Acute Myocardial Infarction.” Clinical Cardiology. 6,304-306 (1983)
Q: Were you aware of the link between thyroid issues and cardiovascular disease?
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