When thyroid problems masquerade as heart disease

27 Jan

by Carolyn Thomas    @HeartSisters

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 went to Mayo Clinic where she was 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 Mayo’s credit, the doc 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. 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!

JetGirl 2013

* 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)

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Q:  Were you aware of the link between thyroid issues and cardiovascular disease?

Please note: this site is not meant as a substitute for health care advice from your own physician

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21 Responses to “When thyroid problems masquerade as heart disease”

  1. JetGirl May 25, 2014 at 7:07 am #

    Hi Carolyn!

    Just wanted you to know my wellness is complete. I just returned from Europe where I spent 40 days walking the 800 kms along the Camino de Santiago de Compostela. I started in St. Jean Pied de Port, France and finished in Santiago, Spain walking through three mountain passes in excess of 1500 meters!

    No cardiac symptoms, no problems with altitude, just unbelievable!!! While I felt certain before I left that the thyroid was the problem because it had fixed me so completely, there was a tiny piece of me that didn’t believe it. You never saw a girl cry so hard walking into Santiago on day 40!! I was too sick for too long!

    JG

    Like

    • Carolyn Thomas May 25, 2014 at 8:29 am #

      Absolutely fantastic to hear from you, JetGirl! Your Camino adventure – rarely tackled even by those who have always known good health – is proof that with the right diagnosis and the right care, good health is still attainable! Congratulations and big hugs to you!

      Like

  2. CuriositytotheMax January 29, 2014 at 1:25 pm #

    Carolyn,
    Mind-blowing information. Thanks for the post and bringing this to public awareness.

    Like

    • Carolyn Thomas January 29, 2014 at 2:12 pm #

      Well, my mind is completely blown, too. It’s a good news story, yet tragic that JetGirl (and others) had to spend years suffering before almost stumbling accidentally upon the mystery’s solution.

      Like

  3. Suzanne January 28, 2014 at 5:50 pm #

    Oh, JetGirl, you and I could be twins.

    In early 2008, I went to the ER with terrible chest pains. From the EEG, they decided I was having a heart attack and took me back for a catheterization to unplug the plaque. But lo and behold, THERE WAS NO PLAQUE. All my arteries were clean as a whistle. No plaque went with my excellent diet, physically fit body, zero lifestyle factors, and zero genetic factors. The ER cardiologist kept saying, “I’ve never seen anything like it!” So I knew that he didn’t have the slightest idea how to help me — and that meant I wasn’t going back to the ER.

    For two years I was pumped full of heart drugs. They failed to bring down my sky-high blood pressure, and they failed to address my continuing chest pain and shortness of breath. Brain fog closed in on me. Anxiety ruled me. I became unable to work. At the end of 2009, realizing that I was dying, I chucked all the useless heart meds and used my knowledge of anatomy and physiology from my Microbiology degree plus the Internet to diagnose myself as hypothyroid. And I realized that I had had coronary artery spasms, not a heart attack.

    All my blood tests since 2008 had showed me as hypothyroid, but doctors were ignoring my thyroid and fixating on my normal cholesterol and triglyceride levels. Thus they also ignored my requests to check my thyroid.

    Doctors don’t want you to tell them how badly they’ve screwed up. So I went to my kids’ pediatrician and casually mentioned my thyroid. He’s the first person who actually felt my thyroid. He found a nodule, sent me for an ultrasound, and prescribed Synthroid. 45 minutes after I took the first pill, 90% of my symptoms vanished. Within a few weeks, I was no longer having any coronary artery spasms, angina, or shortness of breath.

    Since I have anemia, I’m unable to process Synthroid effectively and am currently on a combination of naturally dessicated thyroid and T3. My blood pressures regularly run 110/70 to 120/80 — no heart drugs needed. This year, I’m going to attempt to get my medical record corrected.

    Thank you, JetGirl, for publicizing your story. I bet there are plenty others like us out there, and they’ve also been misdiagnosed.

    Like

    • Carolyn Thomas January 29, 2014 at 12:37 pm #

      Suzanne, you and JetGirl really could be twins! Quite a remarkable personal account – and yet another good example of how patients MUST become their own best advocates. Thanks so much for sharing your own story here.

      Like

  4. allisonmohr January 28, 2014 at 9:08 am #

    I actually had a Primary Care Physician order a full thyroid panel when I mentioned my erratic heart beat a few years ago. Unfortunately, it was not the thyroid, but I thought it was pretty cool that she knew to do that.

    I am so glad to read that JetGirl is back in action. It’s tragic that it took so many years to get a good diagnosis.

    Like

    • Carolyn Thomas January 28, 2014 at 10:53 am #

      Hi Allison – that’s encouraging, isn’t it, when your PCP connected the dots between thyroid and heart rhythm? The article in the cardiology journal Circulation that JetGirl mentions above reported that our pacemaker-related genes are regulated by thyroid hormones.(1)

      Like

  5. Mary January 27, 2014 at 9:53 am #

    Not included in the story is the background that JetGirl has the dedication of a bulldog and had the most immaculate diet, the most dedicated exercise efforts (to rehabilitate) and explored any and all “it’s psychological” causes.

    You could easily spend a lifetime perfecting your mind and body, yet never find the true cause. Though the journey of those efforts are still worthwhile, it sure helps to figure out the real reason.

    The Heart Sisters cannot be more thrilled for JetGirl’s improvement and send our love and support as she walks The Camino ~ a journey of the soul. There is a wonderful movie of this pilgrimage. There are also several documentaries on YouTube.

    xoxo Mary

    Like

    • Carolyn Thomas January 27, 2014 at 1:35 pm #

      Thanks Mary for pointing out JetGirl’s bulldog-like tendencies, which no doubt not only helped her physical rehab efforts for those four years, but also led her to do her own detective work. Had she not been so determined (and had her new endocrinologist not been so agreeable!) perhaps she would remain one of countless chronically ill patients who never do figure out their real diagnosis, with or without the help of their physicians. PS: thanks for the recommendation for The Way – sounds like a great film.

      Like

      • JetGirl January 28, 2014 at 4:11 am #

        Carolyn, many thanks for helping me get the word out! Over the weekend, I was at a gathering of 400 people dedicated to wellness. I was able to tell my story and was surprised to find several dozen had a connection to it. There is a bit more understanding that is needed to be sure!

        JG

        Like

        • Carolyn Thomas January 28, 2014 at 4:29 am #

          Hello JG – thank you so much for sharing your story with us. I suspect you’ll find many others who will recognize a connection, too. Best of luck to you!

          Like

    • JetGirl January 28, 2014 at 4:05 am #

      Mary, you are too kind! I’ll take the support from my Heart Sisters! I am counting on it being a challenging yet joyful experience!

      JG

      Like

  6. Lynn Kelly January 27, 2014 at 6:31 am #

    Bravo Carolyn and JetGirl! What a wonderful descriptive journey that clearly depicts the importance of finding a physician who listens and collaborates!

    It also speaks, once again, to how important it is to be an informed patient. We can wish for release from this responsibility all we want but in the end it is we who reap the rewards from educating ourselves!
    Lynn

    Like

    • Carolyn Thomas January 27, 2014 at 6:35 am #

      Hi Lynn – I couldn’t agree more. JetGirl’s story is a great example of how being an informed patient can not only educate ourselves but also our docs.

      Like

  7. Pauline Lambert Reynolds January 27, 2014 at 6:29 am #

    I was not aware of the link between thyroid disease and heart symptoms, both of which I have.

    I must admit that, even with Mary Shomon’s information, thyroid disease confuses me. I have experienced hyperthyroidism at the onset of Hashimoto’s disease, but have not recognized the opposite. Maybe it’s because I take Synthroid to keep a thyroid nodule under control. Find the whole topic very confusing and am glad I have a good endocrinologist.

    Like

    • Carolyn Thomas January 27, 2014 at 6:33 am #

      Indeed, Pauline – a good endocrinologist is so important. If you have questions, make a list and ask that doctor to help clear up your confusion.

      Like

      • Barbara Keddy January 27, 2014 at 4:24 pm #

        WOW! Once again I have new information that not one person has pointed out to me before.

        I have had hypothyroidism for 25 years and of course the MI last year. Maybe there is a relationship between the two – seems like the Finnish study suggests that there is! The problem is that the shortness of breath I have COULD be from anxiety, and/or pain and fatigue from fibromyalgia (also a link to thyroid problems), and/or heart disease, and/or my thyroid. Showing me once again that medicine is still plagued with mysterious connections that are at this point unknown!

        Thanks Carolyn…more to think about, as usual with these posts of yours!

        Like

        • Carolyn Thomas January 27, 2014 at 5:34 pm #

          Hello again Barbara – this too was a surprise to me. You bring up an important and maddening reality: a symptom could be due to a number of different diagnoses! Trouble is, as you know, once you have been offered a differential diagnosis, it seems easier to just keep hanging symptoms on that hook.

          Like

        • Mary January 30, 2014 at 4:13 pm #

          Barbara, on ScienceDaily, there was a new article about Fibro and Vitamin D (assumed to be D3) and of course we know the WISE study has Coronary Microvascular Disease linked to low D (not sure what flavor), so there is a neat little intersection with Vitamin D and its subtypes.

          What nobody mentioned is that if someone has had an MI or has heart rhythm issues, adding thyroid and risking a “hyper” situation that could possibly also lead to MI. I think that’s why MDs are so tentative to test out some supplementation without clear cut evidence – it’s not “by the book”.

          A friend with Graves has told me that standard medical test score “norms” are far too wide and imprecise, and quite dated since they were established. Looking at the history of that might yield some insights. More progressive endocrinologists will also look at symptoms, not just scores. There is a lot to learn and challenge in the annals of medicine today, and too many people are stuck in some outdated definitions – cardiology and just maybe endocrinology?

          All I know is – it’s a terrible thing to lose chunks of your life. Segments of your life that can alter its course, its productivity and outcome. The message to patients is: be inquisitive, open-minded, and if you feel there is something not quite right, keep going.

          Like

          • Carolyn Thomas January 30, 2014 at 4:36 pm #

            Thanks for this perspective, Mary. Lately I seem to be coming across a number of troubling cases of doctors treating the numbers, not the patient – and particularly ignoring the numbers if they appear “normal” (familiar to many women, like me, whose cardiac issues have been misdiagnosed even when they are textbook Hollywood Heart Attack symptoms).

            Like

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