I was recently diagnosed with Hyperthyroidism, caused by Graves’ Disease, an autoimmune disease that attacks the thyroid and makes it go bananas. My thyroid has been in hyperdrive for at least eight months. I experienced sweating, overheating, heart palpitations, tremors in my hands and legs, bulging eyes, puffy eyelids/under eyes, insomnia, agitation/anxiety, and hunger, all the time (though I didn’t lose weight, go figure). My intuition knew something was wrong, but it wasn’t until I had lunch with a good friend who commanded me to get to a doctor because of my eye puffiness, that I realized, something is really wrong. I went to urgent care that evening and by the next afternoon, had a partial thyroid panel which indicated Hyperthyroidism.
I immediately made an appointment with an endocrinologist – or, at least I thought I did. I was given an appointment with a GI and didn’t know it until I got there. Fortunately, after a sufficient, “I’m not leaving until I see who I need,” the present Endo squeezed me in. He looked at my partial labs, confirmed Hyperthyroidism, and promptly prescribed me Methimizole and a Beta Blocker – standard issue drugs for a Hyper.
I started taking them and within about a week, I noticed a difference in symptoms. Two weeks later, I noticed a significant difference with the exception of the heart palpitations. I emailed him the Friday before Thanksgiving because I wanted to give him an update in case he planned to leave for the holiday. He doubled my dosage. His question was: “And you’re reacting well to the current dose?” I told him I was. So he increased my Methimizole.
The days leading up to and following Thanksgiving two things happened:
- I exploded in hives.
- I exploded in muscle pain my right shoulder. Pain so bad, I couldn’t move, nor could i put on my own clothes. I cried. A lot.
I took myself to the ER where they didn’t have any insight except a negative X-ray and “maybe it’s a tear.” So I went home, barely able to move my arm, from shoulder to fingers. I stayed home from work the next day and then again the following day (fortunately, I am able to telecommute without much issue). I was starting to feel better by the end of Tuesday. Wednesday rolled around and I had a limp – my right knee was bothering me, as was my right wrist.
In the meantime, I had emailed my Endo to tell him about the ongoing hives, and even saw him in person to share what occurred. He didn’t think anything of my trip to the ER and changed my meds to the other Hyper drug – PTU. I was on those for 2 days and they exacerbated the hives so badly, that I had to contact him again. At the same time, the pain had migrated to my right wrist, my left shoulder, and my right knee.
My doctor replied with: I’m sorry but unfortunately your only options are Radioiodine therapy (kills my thyroid) or surgery (removes some or all of my thyroid). I responded with a lengthy email that explained I felt he was being hasty, asked him to consider my side, that I was scared, and asked if he knew other resources for me to consider. No response. Then I sent a second email saying that I had a lot of questions and wanted to speak with him about these options, and requested he please call me. His response was: I’ve gone out of my way to help you and be flexible. At this point you should see one of my colleagues.
I was dismissed as a patient.
In the meantime, I already made an appointment with another Endo, this time with a different doctor network, and by a stroke of pure golden luck, got in the next morning. I explained to her everything that occurred and she did NOT recommend the two final options that my previous doctor had. Instead she lowered the dose of the original meds and ran an entirely new blood panel, including nutrients (at my request). She also insisted I get a thyroid sonogram. She then explained to me that surgery is a rare, last resort and that Radioiodine requires a lot of thought because I essentially become radioactive, and women can’t have children for at least a year. I’m 39. While I’m not planning on kids, it’s still something to consider if I were freezing eggs. The previous doctor didn’t explain any of this to me, nor did he welcome my questions. He shut me down for disagreeing with him.
I have since had a thyroid sonogram, met with the an integrative MD about a more holistic approach to partner with my drug therapies, will see an RD for autoimmune protocol to assuage the Graves’ Disease, and while I still have muscle inflammation/pain (hives have subsided), I feel positive I’m on a new, better path. I did NOT feel that way a week ago.
That original doctor was dismissive, arrogant, impatient and intolerant. He scoffed at me for talking to a nutritionist and even insulted her: I’m sure she’s very smart, but she’s wrong.
I have been reading up on this condition, one of two thyroid conditions that can occur, and mine is the more tricky one to realign. What I’m going through, while horribly painful and frustrating, is somewhat common. I’m willing to make peace with that, but what I cannot make peace with is a doctor who bucks a patient’s desire to be informed about her own body and health. I’m not willing to accept a doctor who thinks his opinion is the final one and should not be questioned.
Thyroid issues, while rampant, are individual. They have a cadence and a manifestation that are similar, but different for every person. Dealing with the arrogance of a doctor who has no tolerance for variation in his/her patients makes the road to recovery even more arduous, as well as potentially misguided. I have very little tolerance for arrogance in my life and now that I am ill (which is the WEIRDEST thing I have ever said, but it’s true), I have zero. The arrogance of a doctor is unacceptable and dangerous for patients. The need for me to steer my own ship is undeniable. I am responsible for myself and I have a right to ask as many questions I need in order to feel confident I am making the right choices for me. This is not the time to be apologetic or feel badly if I piss some people off with my insistence for good health care, and a decent bedside manner. I will get all my questions answered, I will have the information I deserve, and I will not be waived off with this is “such a common thing” and “not a big deal.” It’s a big deal. It’s a big, fucking deal. As I sit here with my knee swollen, my shoulder partially immobilized and oddly, my left thumb inflamed and unbendable, I know for a fact it’s a big fucking deal.
I am a pretty committed woman – if there is something I want or believe I deserve, I use the pushiness-with-a-smile combo, and sometimes I’ll omit the smile and just make demands. I won’t let someone walk on me. But I am not everyone, and not everyone has the courage to push back (it takes courage, and I have to pep talk myself each time I send an email to my docs). That’s why I’m writing this – so that I can say to someone who may have challenges pushing back – PUSH BACK. THEN PUSH BACK AGAIN, AND AGAIN UNTIL YOU GET THE ANSWERS YOU ARE SATISFIED WITH. It’s my body that I’m living in. An uncaring doctor doesn’t have to feel pain at 2 am like I do. If there’s a question I can ask or information I can excavate that may help me, I’ll do it. As should everyone. A second opinion, a third and sometimes a fourth are wholly my right to obtain. For now, I think I have what I need. I take this day by day; sometimes hour by hour. It’s just what’s happening, so I’ll take what I am given and work with the tools I have at my disposal. Right now, my toolkit consists of medication, amazing girlfriends, my family, and Hulu binges. –ZG