Your hands shake, your eyes bulge, your throat looks like a frog’s (or like you swallowed several), you’re losing hair, your heart races, you get odd rashes all over, and you lose weight no matter how much you eat. Oh yes, and you’re always ‘sick’ with a stomach bug, or at least that’s what you think, because nothing seems to be digesting. You also find yourself staring into space a lot, zoning out, or having twitching episode, like seizures except you are fully aware of what’s going on, or maybe they only affect your legs, or your arms, sometimes they stop breathing. It’s scary; your body is betraying you. But you have no health insurance so you deal with it for as long as you can on your own. Oh yes, and you’re only in your late 20’s, the prime of your life, with a young child with his own medical problems which seem far worse than your own.
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This is where I was 13 years ago. This was the beginning of my journey with Hyperthyroidism. I was working at McDonald’s. We were in process of hunting for a diagnosis for my autistic son, who was so over stimulated and so aggressive he was physically abusive with us 20-30 times a day, he also was barely talking, had huge social and behavioral delays, and was in a variety of medication ‘trials’ that year. We were isolated, in poverty, and already dealing with insane issues. For a long time I kept my symptoms to myself, I didn’t even tell FloridaSNDad. Some I could chalk up to allergies (like the rashes), or just nerves (the hands shaking, being sick all the time, the weight loss). Eventually though, when the twitching and ‘absence seizures’ started, he noticed. And then we had to figure out what to do. By that time a year had passed.
I tried the health department first. The nurse I talked to at the check in desk was understanding. She listened to me, to all the symptoms, she looked at me, really looked at the physical ones I hadn’t yet noticed. And then she told me that the health department couldn’t fit me in for a month, but that I had something called hyperthyroid and should go to the ER that day. No, it couldn’t wait; this could kill me if I waited. She also told me not to tell them what she thought I had because it could skew their results if she was wrong, and as she wasn’t a doctor, she really couldn’t formally diagnose anything. I don’t even remember her name, but that nurse saved my life. That nurse, FloridaSNDad, and an endocrinologist I hadn’t yet met.
I went back home. We didn’t have a cell phone in those days, and I needed to tell my other half what was going on and make sure he and the boy were ok. Draco was having a good day, so we decided to take him with us and all go, because I was so scared and so was Dad. We went to the ER. I don’t remember how long we waited, but it was a while, because triage at the hospital didn’t seem to notice the same things the nurse at the health department did. We didn’t wait too long though because they knew me from my asthma, and they knew of my son and his issues, and the louder he got the faster we were seen in those days.
We finally get back in the room, and we get a doctor I’d seen before (his name I remember but I won’t out him here). He listened to everything, listened to my heart which was ticking along much higher than it should be. My BP was very high for me (160/95 or something like that) but not dangerously so because I have a history of very low BP (I’m talking 70/35 which in that time of my life probably prevented a stroke because when it doubled it wasn’t as huge a deal). He ordered some blood work and we waited some more. When he came back, he declared he was writing me a prescription for Ativan (or some other anti-anxiety type drug) and I should see my regular doctor about a nervous condition. FloridaSNDad jumped right on this.
“How can a nervous condition cause her throat to swell?” FloridaSNDad asked.
“Well it can cause the sensation of swelling, it’s not that uncommon.” Said the doctor.
FloridaSNDad reached out and took the doctor’s hand and plunked it down on my throat and the HUGE goiter I had. We watched the doctor’s face go pale. “Oh, well that’s different. We need more blood work. That could be a thyroid problem.”
Another hour or two and we left the hospital with a prescription for an anti-thyroid agent, Propranolol (for the shakes), and a referral to an endocrinologist that we couldn’t afford. As well as the same diagnosis the nurse had made at the health department. My thyroid levels were really high. I wasn’t quite in Thyroid Storm yet, but close.
The endocrinologist called me when I hadn’t called him by the second day, and told me to come in anyway, he’d let us make payments. He said, and I quote “I’m not worried about the money, I have plenty of that. If you don’t come see me you could be dead in a month when that prescription runs out.” He was a good doctor. We set up an appointment for a couple of days hence.
By the time the appointment came around, my lungs were in process of shutting down. I was in an asthmatic downward spiral, and the meds I had weren’t cutting it. I went to the appointment anyway, and figured I could go from there to the ER if I needed to. The doctor was reading my chart when he came in. He listened to my lungs, my heart, all the normal stuff. He read my chart again, and started swearing. Then he called the hospital, and spent the next ½ hour telling off the ER doctor as well as his boss. Apparently you aren’t supposed to take Propranolol when you have asthma as it can make it MUCH worse, at least not without appropriate supervision. As it was only treating shaking hands (and a high pulse rate), it really hadn’t been necessary and in my case should have been contra-indicated. This doctor had treated me for an asthma attack only a few weeks before the Thyroid visit, and it was in my chart.
I left that appointment with a stronger anti-thyroid med, (PTU, horrible stuff it is more bitter than prednisone) no more propranolol, and Advair. And yes, I left the appointment WITH the meds, enough for 3 months. I also left with a referral to a sliding scale health clinic I didn’t even know existed. Oh, and the ER doctor was disciplined by the hospital. When I went in for an asthma attack a couple of years later and I pulled the same doctor I asked for, and received, a change to a different one. That doctor never treated any of us again. I’m hoping he never forgot to consult a chart again.
It could have been a lot worse. If it hadn’t been for that nurse’s unofficial diagnosis we wouldn’t have questioned that doctor’s diagnosis of a nerve condition. With an as yet undiagnosed, violent autistic child it certainly wouldn’t have been surprising! If it hadn’t been for my dear other half’s care and stubbornness we would have left the ER without a diagnosis and the medicine I needed. If it hadn’t been for a very caring and observant endocrinologist I would have ended up being treated for an asthma attack, aggravated by atenolol, which likely would have kept recurring, and worsening. I also never would have known about the health clinic that served as my primary care doctor for the next 4-5 years. I got lucky. Without all of those people I may not even be here, because thyroid storm can kill, and when it doesn’t kill it often causes severe physical and mental disability.