Chapter 12: How Do I Look...Now?
I was into my eleventh month of treatment and the date my endocrinologist had given me to stop taking the methimazole had come and gone. I was continuing to taper myself down in dosage, and my plan was to give myself an extra week, just because of everything I was going through with my family. I felt I wanted to give my body an extra week of tapering to buffer some of the effects of the stress.
During the third week of July I was scheduled for another set of labs. I initially thought the timing of this was strange, since my next appointment would not be for another four weeks after that. The blood work would only be reflecting the time I was off meds from the end of my tapering until the date of the labs, which was only eleven days. Even if I had stopped taking the methimazole when my doctor requested, those labs would still only be seventeen days from my last dose. In case you’re confused, the timing went something like this:
June 17 - Appointment with endocrinologist
July 5 - Date given to stop medication
July 11 - Actual date medication stopped after tapering
July 22 - Lab work done
Aug 19 - Twelve month appointment scheduled
Do you see the eleven to seventeen days I’m talking about? Keep them in mind. This is going to be important later.
A few days after I had gone for my lab work, I received a phone call at home from the doctor’s office stating that they had received my lab work and my doctor wanted me to go back on my methimazole at my most recent dose until she sees me in August. I promptly returned the phone call and left a message for my doctor that I did not want to go back on my medication, and I would wait to talk to her at my next appointment. The following day I received a phone message from my doctor, in which she stated my labs showed that my TSH was low and my T3 and T4 were high and that I needed to go back on my medication. I again returned the phone call and left a message for my doctor that I was not going back on my medication and I would see her at my next appointment.
Finally, the day had come that I had been waiting a year for. I was going for my twelve month appointment. I was filled with hopeful expectations that I was going to be declared part of the elusive thirty percent. I was feeling good and looking good. I had done everything my endocrinologist asked of me except for going cold turkey off my medication and then going back on it. I had made many trips to the lab for blood work, on time, without reminders. I took my medications on time, every day, as instructed. I monitored my blood pressure and pulse religiously. I had never missed or even rescheduled an appointment with my doctor. I had struggled through an identity crisis and a healing crisis. I dedicated every second of every day for an entire year to self healing, inside and out. I made it. My year was over. In my mind - I was done.
As usual, the medical assistant weighed me and took my vitals. My blood pressure was 122/70 and I had gained another pound since my last visit. I was now off my medication for 38 days.
My doctor came in and said hello, quickly followed by the statement, “So…you have not been on your methimazole.” I guess she got my message. I replied, “No.” She asked me, “Have you thought about what you are going to do next, now that your twelve months of methimazole are over?” I answered with all honesty, “No”. My thoughts for a year had only been centered on getting well, not on any further treatment options. She made a scrunched up kind of face, inhaled a breath through her teeth, and asked, “Really?” Here’s how the rest of the conversation went…..word for word.
Me: “Yeah…really. Well…that’s not true. I mean, I know I’m not doing radioactive iodine, and surgery is definitely out.”
Dr.: “Yes, but, your labs show that you’re hyperthyroid again. I think radioactive iodine would be the best treatment for you. Then you would take thyroid hormone, which is very safe because it is identical to your own hormone.”
Me: “But I feel fine. And it’s been a month.”
Dr.: “Well…I warned you that there was a very small chance…that it was only thirty percent.”
Me: “Yes, but, I’m doing well.”
Dr.: “You look like you’ve lost more weight.”
Me: “But if you check the chart right there, you’ll see that I gained a pound since my last visit.”
It was at this point that she had me hold out my hands. She observed and commented sort of under her breath, “You’re not shaking.” Then she turned her stethoscope to my heart. “Your heart sounds good.” Both of these assessments were stated almost begrudgingly. I guess she didn’t like being challenged about my weight and proven wrong.
She sat back down on the stool across from me. “Your labs show that you are hyperthyroid. You need to decide what you’re going to do.”
Me: “Well…I’ve only been off the methimazole a month. Don’t you think my body is just rebounding and adjusting to being off the medication?”
Dr.: “Yes, it’s definitely rebounding.”
Me: “So…don’t you think we should give it some more time? I mean, a month isn’t really that long. Plus, the labs you’re looking at are old. I was only off meds for two weeks at that point. They don’t show where I am right now. And it’s the autoimmune disorder that’s causing my thyroid to go out of whack. No matter how much you treat the thyroid, I’m still going to have the autoimmune disorder.”
Dr.: “Yes, but the only things we have to treat the autoimmune disorder are chemotherapy drugs…and you don’t want that.”
Me: “So you agree that it’s the autoimmune disorder that’s affecting my thyroid, and no matter how much you treat the thyroid I’m still going to have the original cause of the thyroid problem?”
Dr.: “Yes.”
Me: “Well…I’d like to continue off the medication and see how it goes. While you’ve been treating my thyroid, I’ve been treating my autoimmune disorder with herbs.”
At this last statement, she nearly lost it.
She actually stood up to look down over me and raised her voice as if scolding a child. “There is no proof that any of that works. You are going to be doing more harm than good. It is very dangerous. I do not recommend it. It’s very dangerous.”
Me: “Well…the way I see it, I’m only getting better. And as far as the lab values are concerned, you never saw me when I was well. I was in really bad shape the first time you saw me. How do you even know what my ‘normal‘ baseline is? I feel great right now. Maybe what’s normal for me is out of lab value range.”
She sat back down, regained her composure, and started trying to shut me down.
Dr.: “So you could continue on the methimazole for another six months, but you will have to be aware of the toxicity to your liver. Technically, you could stay on it forever, but you would need to continue getting lab tests. I do not think it is the best thing. You should consider the radioactive iodine.” She wrote a prescription for methimazole and lab work and handed them both to me. I was to have more lab work done and see her again in November. She said I needed to follow up with her for the next six months while on the methimazole, and then she would try taking me off of it again. She was expecting me to go back on medication based on lab work that not only reflected me being off of medication for only two weeks, but also lab work that by this point was a month old. I felt as though she had lost all interest in trying to treat me. I was now considered what was known in my profession as a “difficult” and “noncompliant” patient.
I just shrugged my shoulders. She wasn’t listening to me. It was useless. One of the first things they teach us in nursing school is to look at our patients. Look at me! Why wouldn’t she just look at me? I was not shaking, blood pressure and pulse were good, heart was beating regularly, no skipped beats, I was steadily gaining weight, I had energy, my color was good, hair was growing back, and on and on. I did not look like the clinical picture of someone who was hyperthyroid. I looked like the clinical picture of someone with an autoimmune disorder that was currently under control and therefore not affecting my thyroid.
But she was not looking at me…..she was looking at my labs.
She was exasperated with me, which is, I guess, why she felt the need to utter the following before I left the office:
“I wish there was only one treatment for each disease. When patients are given too many options it confuses them.”
This statement was incredibly insulting. So I replied:
“No. I think my options are crystal clear. Can I have a copy of all of my lab work since my first visit, please?”
And that was that. Our relationship was over.
Life Lesson #12 - Conventional medicine is flawed.
Graves Disease Note #12 - I believe, and stand as an example, that there are options besides conventional medicine for treating Graves Disease.
- Dorian A., RN, CHLC
www.BioEnergyAromatherapy.com