I Don’t Know If I’m On Graves Disease Spin Or Rinse
I’m so sorry that you’re not well. I’m even sorrier that your illness impacts so much of my life. But I’m writing to advise that you need to stick to ONE set of symptoms, or else my endocrinologist’s head will explode, not to mention my entire body.
You apparently worked well until May ’09, when you were attacked by our own immune system for no good reason, and rebelled (understandably), by very quickly poisoning me with your nectar. With a TSH of zero, you continued pumping out T4 daily until my levels more than doubled in a week. At the beginning of that week, your efforts had my heart going at 200 BPM, and so we had to go into hospital. And that was the beginning – or so we thought.
Because we were lucky to have a very good doctor (general practitioner), she soon worked out that I had not really been suffering panic attacks since March, all my symptoms were, of course, your little cries for help – cries I didn’t really notice or worry about at first, but which gradually wore me down. I think you made my heart go so fast as a cry for help, and I’m sorry I didn’t listen sooner.
As the doctor pieced together the history and suggested a diagnosis of Graves’s disease, you did the honorable thing and gave me every classic symptom of Graves overnight – literally. I woke up one morning missing handfuls of hair, having constant palpitations and feeling that my heart was beating SO HARD it was going to break a rib. I shook constantly from the tremors, and was exhausted from the waist up despite being so restless from the waist down.
The symptoms made diagnosis and treatment very quick, less than 3 weeks passed and I was on beta blockers and carbimozole to help you cope better. And 6 weeks later I felt markedly better, you were less stressed and so I, by default, was less stressed too. I thought we had a deal at that point. I figured we were going to be ok; we were the lucky ones who didn’t suffer long term and were easily fixed.
How wrong can a girl be?, Boy… she can be off the mark.
Because you waited, took your time, then after 2 short weeks back at the job that I – love; you struck again. You did the same thing all over again. My poor heart was so confused it didn’t know what to do, and the tremor was worse than ever before. So I did the decent thing and got you tested, and waited. Expecting to hear you were making me hyper again, I even wondered if they might remove you.
But you weren’t.
You were hypo.
My doctor kind of shrugged, admitted I had been wrongly medicated for a month, gave me levothyroxine, and told me to wait 8 weeks. He couldn’t explain why you were giving me hyper symptoms even though you were now hypo. And he started to have that look in his eye… the look of an endocrinologist who suspects their patient isn’t being honest about their symptoms. The look I feared the most.
So we’re a week in to this medication and you can’t decide one day to the next. Yesterday I felt good, even did some walking with my son, not a palpitation to be felt, just a smidge of fatigue. Today my heart is trying in vain to escape my body through my chest walls. My legs want to run a marathon and I just cannot keep my eyes open from one minute to the next. My doctor is content just to wait and see, but I can’t live on that basis – I just can’t. Really.
So if you could stick to the symptoms of whatever the HELL is wrong with you today, so the doctors can fix you – fix us – and give me some semblance of a life back, I’d greatly appreciate that.
I love you, thyroid. I really do, and I’m sorry my crappy immune system made you sick. But you’re making it harder and harder to love you every day.
(Bio) – I am 28 years old, living in North East England, with a patient fiancé and a son who lights up my life. I work as a business advisor, a job I adore, and as you’ve just read was diagnosed with sudden onset Graves’s disease in June this year. I’m looking for a new endo for a 2nd opinion since this episode began