Sometimes, it can be a struggle to get a proper diagnosis when something is not right in your body, Today, I’d like to tell you the story about when I was having breathing problems as a teenager. I was misdiagnosed as having anxiety but in reality, I was actually having a much more serious issue. The following is the story of how I was finally diagnosed with a thyroid disorder.
Growing Pains? But I’m not Growing Anymore!
My symptoms started when I was around 14 years old. I was living in Holland at the time and sitting my Dutch class when, out and out of the blue, I got shooting pains in my upper arms and across my chest. These pains were so intense that I got out of my chair in the middle of class. I went to the doctor where they did a lot of tests. They checked my muscles, joints, and blood and nothing showed up so they told me it was probably just growing pains. This didn’t really make sense to me at the time and at my age, but I just listened to the doctor and went on my way.
I’m Calm, Really
Over the next couple of years, my symptoms started to change and still seemed very strange to me. By the time I was 16, I started to constantly experience shortness of breath. I felt like I couldn’t take a deep breath in. Once again, I went to the doctor and they started checking my oxygen levels. My oxygen levels were fine, so they decided it must be all in my head, like I was having anxiety. By the time I was almost 18, the doctor sent me to breathing therapy because he thought I was having panic attacks.
I didn’t feel like I was having panic attacks. To me, it was something that just happened and would subside just as suddenly as it came. I just felt like I couldn’t breathe properly. Around this time, I would also have strange dreams in which I was choking or like I was drowning underwater. After what was probably just a few minutes, I would wake up and take a deep breath. My body just felt like it was under so much stress, but when I would explain this to the doctor, it would be dismissed as anxiety.
Breathe in….Breathe out….
The doctor sent me to therapy to learn breathing exercises to help me cope with this so-called anxiety. I learned to ground myself and to take very controlled breaths in through my nose and out through my mouth and how to do these breathing exercises when I’m in situations when I feel stressed or need to calm down. Funny enough, this helped me about 15 years later when I was pregnant and found myself in a scary situation, but did nothing to help my current health difficulties as these were not, in fact, panic attacks.
By the time I was around 19, I was going from hospital to hospital and having test after test, but no one could figure out what was wrong with me. Each test would come back negative, and that was just about the worst thing someone could tell me. According to them, I was the picture of perfect health. That really upset me because I knew something was wrong. I know it sounds crazy because to most people, a negative test result would be a good thing, but I knew something was wrong with me so it actually made me quite upset.
A Lead in the Right Direction
When I was 19, they did another comprehensive blood test to really try and figure out what was wrong with me. As a result, my doctor discovered that I had something wrong with my thyroid and referred me to the hospital to have an ultrasound to try and figure out what’s really happening. I called the hospital to make an appointment for the test and to see a specialist, but I was told the first appointment wouldn’t be for four months. The lady who was scheduling asked me if it was an emergency, and my doctor didn’t say it was, so I said no, as my doctor didn’t say it was, and waited the four months until it was time for my appointment.
At this time, I was 19, living independently from my family in another city, and working part-time in a butcher shop. When I was at work one day, people started looking at me really strangely and asking me what was wrong with my neck. I looked in the mirror and it looked like I swallowed an inflatable, donut-shaped life preserver! It looked like a cartoon! My neck was swollen really badly, but even though it looked and felt strange, it didn’t hurt at all. My hands started shaking, but at only 19, I still didn’t know that anything was really wrong.
I went to the doctor, but figured I would probably be okay since I’m already on the waiting list to go to the hospital. It didn’t occur to me at the time that I should call the doctor and tell them what my symptoms are. My neck was huge, but at that point, I didn’t even know where my thyroid is or what symptoms to watch out for. Back then, the Internet wasn’t really available like it is now. I did do some research in the library, but still didn’t think it was a big deal, and by this point, my hospital appointment was only three weeks away, so I thought I could wait. By this point, my hands were trembling so badly that it became a game to see if when I ate something like soup, anything would be left on the spoon by the time it reached my mouth.
As Serious as a Heart Attack
The day came that I had my appointment and I was sitting in the waiting room with one of my friends. The doctors kept coming in calling the names of each patient as it was his/her turn to come back. Finally, I was called by a doctor that was old and cranky to say the least. He called out my name and I got up. He has never seen me before and knows nothing about me. He just knows I’ve been referred and he needs to have a look at me. The doctor looked at me and said that he hoped I had been sent there urgently. I’m like, “What?!” He asked how long I had been on the waiting list. I told him I had been waiting four months. He was shocked and said that I need to be seen by cardiology urgently. Once again, I was shocked! I asked, “What? Where are we going?” He said that he needed to make sure my heart would last the day. “WHAT!?!?”
There I am, walking with this doctor, and we’re going past all these elderly people waiting in line. There was a lady who was probably 80 years old sitting with an IV running, and yet I was the urgent one! First, I went to cardiology, where they stuck all these things all over my body to test my heart to make sure I was fine. I’m like, Oh My Gosh! Again, I’m 19, so my friend, who was maybe 21 at the time, and I were laughing and giggling throughout. We would laugh and make jokes to ease the tension, but all the movement was impacting the test, so soon enough, the technician peered through the curtain and told us to stop so he could get an accurate reading of my heart rate. We calmed down so he could check my heart rate. It was not very good, but it was good enough to allow me to go to my consultation.
By this point, I was freaked out. I just wanted to know what was happening to me. I had the consultation, during which he ran bloodwork and tests to make sure I was okay because he was scared that I was going to have a heart attack. Again, I was 19 and had been having these symptoms for three years. I told him about my shortness of breath, that I had to go to breathing therapy, and because of it, I can calm myself down when I get tense, but I still couldn’t breathe normally.
The doctor said that the reason I couldn’t breathe was because my heart was in such distress that I couldn’t get enough oxygen. I just freaked out! I could not believe what he was telling me. Long story short, I had to go into the hospital every four days for a whole bunch of different tests and it turns out that I had Grave’s Disease, which I later found out is an autoimmune disease of the thyroid.
A “Grave” Answer
At the time, I was told I had this condition, Graves Disease, but the doctor really didn’t tell me much about it. He said it should go away on its own in about a year and a half, so we just needed to focus on getting through the next year and a half. Knowing what I know now, I would have questioned this, but at that point, I was still only 19 and didn’t know much about the thyroid. I was told I just needed to take a some pills for my heart and some for my thyroid and additional pills to counteract the effects of those pills, about 13 pills in all. I also had to go into the hospital for tests every four days for the first six months of my treatment.
I had treatment for about a year and a half. My Graves was under control and I thought I was cured, as this is what the doctor told me. I was taken off all the medicine but warned that in about 20 years, I would have the opposite problem: my thyroid would go too slow instead of too fast like it had worked previously.
The doctor explained that with Graves Disease, your thyroid works too fast. Your thyroid is like the motor of your body. When things like your digestion goes too fast or you feel anxious and jittery, or you have a fast heart rate, you’re hyperthyroid. That’s what had caused all of my weird symptoms. The doctor told me I was cured after taking all the medicines.
My Graves Disease was gone, but in about 20 years, my thyroid will to be too slow, or hypothyroid, but that’s about it. He said I would have to take a pill for it for the rest my life, but that’s about it. That didn’t sound so bad, so I just signed the papers and left the hospital. No more tests, no more pills, no more anything. I was finally free to go enjoy my life. I was cured! Or so I thought….
Pregnant! But Something Wasn’t Right…..
Seven years later, I got pregnant. I had a pregnancy from hell. I didn’t know what was going on. I had bad moods all the time. I was so tired that I couldn’t stay awake for more than 3 or 4 hours per day. It was really extreme. They thought I had postpartum depression 6 months after I gave birth to my daughter. Years later, I found out that I actually have Hashimoto’s Disease, which is an autoimmune disease of the thyroid, but now the thyroid goes too slow. The doctors gave me a pill and said to take this pill every morning when I woke up and I’ll be fine. I had to test my thyroid every year.
The numbers looked okay, but I still wasn’t feeling well. Long story short, when I was researching Hashimoto’s, I figured out it’s not just hypothyroidism, or when your thyroid goes too slow, it’s an autoimmune condition. I also figured out that Graves was an autoimmune disease of the thyroid, which I never knew before. Apparently, I had an autoimmune disease of the thyroid, but it was just in remission. I wasn’t cured at all, and the doctor failed to tell me about it because I’m sure that he knew. Since I was 19, he thought he could just keep it light and simple, and just tell me I was cured. You can read more about my pregnancy here.
Always Trust Your Instincts!
They lesson I learned and that I hope to convey to others who are teenagers or young adults is that teenagers can remember. I remember every single thing that this doctor told me. If he would have told me that I had an autoimmune disease of the thyroid, I would have done things differently while I was pregnant. I would have pressed for a test of my thyroid. I would have told them that I had a thyroid issue when I was about 19, but I’m cured. Instead, no one ever tested me. No one looked for anything while I was was pregnant, and I think a lot of my cascading downhill health could have been prevented if I would have been presented with the right information when I was a teenager and having all these problems.
Teenagers know when something is wrong with their body. They’re not just being lazy. They’re not just having panic attacks. They’re not just making it up. If they are really suffering from issues or having symptom for years at a time, it’s real, and you just have to search until you find it. If you have a problem with your health, be your own advocate. Don’t give up. Even when the doctor told me I was having panic attacks, I still didn’t believe it. I complied with the doctors and went to the breathing therapy, but I never ever gave up. It didn’t matter how young I was. It didn’t matter that nobody believed me. I just kept going. I got my diagnosis and in the end, I got my treatment.
One Reply to “Out of Breath: Am I Having Anxiety or a Heart Attack?”
I’ve gone thru so much stuff as well over the 24 yrs after my severe car accident was hit by drunk driver twice he hit me so hard front drivers dice that he swung me all the way around and damaged the drivers side rear to front. The officers couldn’t believe I was alive let alone standing there holding my neck. Went to the hospital had gets done etc u just have whiplash this was Halloween day so Jan I was still having a lot of pain and still wearing a soft collar. I knew something too wasn’t right. So my dr and insurance company sent me to see a specialist that they recommended he walked in the room took a look at me said it’s all in your head. Walked out boy was I upset. Four days later this specialist called me at home and said that he felt bad at what he said but had to say that cause he worked for the insurance company. He said I really think u need a mri and I’m recommend u see this neurologist and he said he doesn’t work for any insurance company u will get the right info apologized so many times. If it had not been for him sending me for this mri the next week I wouldn’t have gotten anywhere with my insurance company. The mri showed I had white matter shearing of the brain right by the brain stem so no surgery would be of help it could paralyze me. So I Than was diagnosed with chronic pain and fibromyalgia and severe depression. Than 2014 after my dad passed away I was diagnosed as being celiac. Than 2016 diagnosed with having both thyroid disorders which my dr told me was extremely rare. Than when my mom passed away oct 2017 after my caring for her and family helping as I couldn’t do it all myself because of what I already had. When she passed away we became guardians of my brother who has a brain injury as well. Than April 2018 I was having a lot of symptoms that seemed like it was my thyroid again but it was my adrenal glands. From all the stress etc over the yrs. I was just diagnosed two weeks ago with my fifth autoimmune disorder called Addison’s not a great one to get or have as if left untreated u could go into Addison’s crisis which could lead to coma or death. My dr told me u have had a lot of rare disorders already with my thyroid and being celiac I break out just touching a tiny crumb. I was sent to a oral surgeon for the mouth sores I developed she not o my did five biopsy’s but made my whole mouth infected and put me on a med that made them grow even faster and my whole mouth was covered and starting down my throat. She decided she didn’t want my case it was too complicated referred me to a dermatologist same thing didn’t want my case it was too much irk with already having four autoimmune so they referred me to the endrocologist whom I saw in Jan but I may as well done it over the cell as she thought it was from a medication I was taking that raised my cortisol levels so she said to ease my mind she would do the blood work and urine test for Addison’s but felt it wasn’t really needed but my dr called it back in April my mouth sores were hepiformous dermatitis and that I had Addison’s disease. Well my dr was right as well as me cause after seeing three specialist and a waste of time they were I decided I was the only one that knew what my body felt like etc and we have to be or we wouldn’t get anywhere with anyone because they don’t see what u do in a five min consultation that they see u in but thankfully I have a dr who will fight for his patients and will work with my osteopathy natural path and they consult as a team. So my point in this long comment is we all have to fight for what we know our body goes thru when it changes etc. In the report to my dr endrocologist told my dr I was too informed with all my health issues. My dr turned to me and said if u didn’t know what u do about your body most drs like this because knowledge is power. So know everything and anything u can. I’m reading a book right now called the autoimmune wellness handbook and I’ve learned so much from this book more than the 24 yrs of researching my autoimmune disorders. Def a great book for anyone with any autoimmune disorders also next book I’m going to read is the paleo approach by dr Sarah koffman and it takes u back to what our ancestors did by eating veggies fruits and grass fed meats I’ve been doing this now a month and my body is liking it I also cut out coffee and all refined sugar and all dairy unless lactose free as I’m dairy intolerant and have a severe soy allergy too. But cutting out all the HMO’s and processed foods is something everyone should be doing. My dr isn’t big on what people do for diets but he does like this one. Thanks for reading hoping it can help anyone else who is struggling in trying to be heard it’s so so stressful at times.