Self-Advocacy and the Highs and Lows of Hope
March 11, 2013 in Fitness, Health, Thyroid by Melissa Anelli
Well, folks. I had a fail last week. I apologize. I also put out a totally NYAH NYAH I’M UNDER A PALM TREE DON’T YOU WISH YOU WERE HERE post before that. So I don’t blame you, really, if you’re a little ticked off at me.
The time before that, though, if you remember, I was a bit of a bitter bunny. I was singing the song of all Frustrated Fitties: I’m doing EVERYTHING why doesn’t ANYTHING work? I’ve been singing this song for quite a few years. One of the wonderful things about Fitting It In has been that I feel like you all, and some of my real-world friends, are starting to truly get how frustrating this whole thing is. That kind of outlet has really helped me deal with it all. And it is part of why I finally spoke up at my doctor’s office.
You see, my doctor and nutritionist live in the same office and take the same insurance. My doctor is a kindly man in seventies or early eighties. For the past five or six visits I’ve gotten the vague impression that he doesn’t remember my name. I travel 75 minutes to the office, sit for 45 minutes in the waiting room, wait 20 minutes in an exam room while poked and prodded and pinched, then get those precious ten minutes discussing my results of six weeks ago with my doctor and wait for him to tell me what to do next. And for a few visits leading up to the first week of February, I was watching this very kind endocrinological expert of thirty-plus years look at my chart, shrug, tell me to go on with my same medicine, then tell me about the inter-office raffle and ask my opinion if the offer of free supplements would be enough to get butts in the seats?
I was going to just turn tail and find another doctor so I wouldn’t have to face the difficult situation. I didn’t want to confront this nice man about his lackadaisical attitude to my care, even though it was my health and my body on the line. I know a lot of you feel me. We avoid confrontation to the point where it actually hurts us sometimes, don’t we?
Well, here’s a ProTip. If you feel something is off with someone’s service, you probably are right, and you are probably not the only one who noticed. The next week, I was sitting with my nutritionist. We were both baffled again by my lack of progress. She asked me what the doctor said.
“Not much,” I said.
Her eyebrows raised a little. “He doesn’t think your meds should be changed?”
“He’s seemed a little…unengaged.”
A look flashed across her face that said everything. She knew. She knew all. She took a long moment, expressed her deep regard for the doctor, and said, “Why don’t you meet with the other doctor in the office here?”
A week later I had 10am appointment. At 9:59am I was in an exam room. At 10:01 am my new doctor (a nephew of the other!) came in and greeted me by name and talked about my hormone levels, my current treatment, how long I’ve been there, etc. He sounded like he had eaten my chart and was repeating it in small burps. And hope blossomed.
A couple of minutes later I had bled into three test tubes (yay! I love being a pincushion!) and I was sitting with the new doc in his smaller office. He frowned at my most recent TSH levels, which had gone from 3.1 to 2.6, technically within the normal range. “I have Hashimoto’s too,” he said. Two male people in one building with Hashis? Wow! “And I don’t feel good unless this is at 1.”
Wait, what? We’re going to do something?
The test came back a few days later: in the intervening time my TSH had skyrocketed to 5. This means that my pituitary gland is working too hard to overcome the lack of thyroid hormone in my body, which means there isn’t enough thyroid hormone in my body despite taking medicine for it. So we 1.5′d that shiz. And right away – RIGHT AWAY – I’m talking three days – my throat felt better, and my clothes started getting looser.
Now, I’ve been traveling a lot and it’s very difficult to maintain a routine when that’s going on. Despite these changes, the scale still hasn’t budged (at least, my home scale hasn’t, which makes me feel as though my scale is a plant from a secret government agency manufactured to keep the weight loss industry well-oiled), and the many times I’ve felt these hopeful flourishes before make me sure I’m heading for some sort of crash.
But it’s something. And no matter what, it wouldn’t have happened had I not finally stood up for myself. Which means you should too. My new doctor explained the score to me: older patients tend to just want to be told what to do, and go away happy for the instruction. We younguns, however, are more self-engaged, more motivated; we look things up on the Internet and come armed with questions and discussions. We want to know why things work and why things don’t. And we stand up for ourselves and our health.
Or at least we try.

As a clinician, (albeit a dentist and not an endocrinologist), can I just comment to support Melissa’s advice here. Sometimes I see people who have a sheaf of paper printed for the Internet and I have been known to stifle a sigh, but you know what? These are the clients/patients who keep me on my toes! I have learned to WELCOME these wonderful, engaged, informed people to my surgery . I am SO happy to show them their X-rays and test results and discuss what to do next.
Because you know what ?
Sometimes I don’t know what would be best! I mean, often I do, but not always. Today was a day in point, but anyway, I digress….
A good results/risks/benefits/costs/outcomes discussion with a patient turns a dry drill-and-fill into a real human interaction based on mutual respect and understanding.
I have worked in hospitals looking after extremely ill and infirm people in my career, I have masses of experience and I can confidently state,that, although some days I just want the “easy” cases and the “easy” answers that my years of experience and practice have given me, I learn and enjoy more those cases (people) that challenge me personally and professionally.
Don’t be aggressive, but DO be assertive in your own interests. Your clinician would do no less for him/herself or their family, and you should expect her/him to treat your concerns with equal respect.
Love what you all are doing here. X
Also, apologies for stray typos, it is wine o’clock here in the UK.
I never responded properly to this because of all the travelign I’ve been doing, but thank you so much for signing up and commenting! It means a lot to me that you would come here and support this. Self-advocacy is one of the hardest things about our health care process, but we’ve got to do it!
THIS IS EXCITING. Even I was getting frustrated, reading all your posts, about your doctor just shrugging off the lack of changes and the WORSENING of these LeVeLs you speak of. I’m really glad you decided to see another doctor. I think this is going to be really great for your health and your progress. Go team!
I’m excited to see what happens when I get back home for at least like, you know,a week!!!
So happy to hear that you’re with a better doctor! I’ve had similar issues with mine over the years. He’s a great guy and he’s happy for me when I’m doing well, but at the end of the day all he’s really good for is relaying numbers from blood work and writing out prescriptions.
this guy is pretty awesome and I’m so excited. He wrote on the sheet reporting my blood test results, “Vit D low but Hawaii probably helped.” How do you not love taht he remembers not only who I am but that I was in Hawaii?