Adding T3

Despite my reservations, my visit to the endocrinologist actually went quite well.

The resident who took my history for the better part of an hour was excellent. She quickly picked up on my anxiety and skepticism from previous medical encounters and assured me that she would cover everything possible during my exam. Her presentation of my case to the specialist was impressive - she summarized everything I had shared with her into a complete profile, highlighting the issues that she most felt related to thyroid. Her future patients are going to be fortunate to have such a thorough and caring physician.

The endocrinologist told me that adding T3 made virtually no difference for most people - the only notable exception being people with depression. Because of my history of depression, he thought it would be worthwhile to try adding T3 at 25mcg/day (half in the morning, half at night).

The theory is that in some people, T4 does not effectively convert to T3. I pray that I am one of these people. What a joy it would be to feel like my 'old self' again.

One interesting aside - both the endocrinologist and the resident noted my high ANA level (1:640, speckled), saying that it was suggestive of 'some other process' going on in my body. They took blood tests to look for markers of inflammation; which I should hear more about soon.

So this morning I took my first dosage of T3...and I screwed it up! I took a whole pill in the morning instead of half. Here's hoping all goes well today.

The one where I play House, MD. (and it doesn't go well)

Throughout the past few years, while I've been fighting the mystery illness, the only doctor I've felt has been on my side has been my psychiatrist.

I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:

a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.

So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.

I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.

I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.

It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"

With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.

I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.

So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.

This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.

So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.

After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.

He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.

The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.

Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?

I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.

Dr. Who? Titles and Power in the Patient-Physician Relationship

I was raised to address people by their last names until invited to call them by their first names. In university, I always called my instructors "Professor" or "Doctor" unless invited to do otherwise.

In written correspondence, I refer to a person as Mr./Ms. /Mrs./Dr. (unless or until they sign their message with their first name, in which case I understand this to be an invitation to refer to them as such).

But I hate, hate, hate when physicians address me by my first name and introduce themselves as "Doctor". Immediately I bristle, knowing that they are setting up a power dynamic where they are privileging their role over mine. I know you're are a physician...I'm here to consult with you, if you told me your name, I would still be quite clear about the purpose of this encounter.

One of my favourite med-bloggers, Dr. Jessica Otte tackled this thorny issue a few months ago in a post "What's in a name? Doctors, titles and pretence" she tells readers that with patient introductions, she says: “Hi, I’m Dr. Otte but you can call me Jessica if you like." I would love it if my physician were to introduce herself to me this way. It makes her role clear, but is also attentive to the patient's comfort. It is unpretentious and sets a tone of shared power.

Whether it be respect, authority, closeness, familiarity or hierarchy, how one uses first names, last names and titles sets the tone of a relationship.

Dr. Jennifer Middleton, author of the blog The Singing Pen of Doctor Jen, took this topic up recently in a post "What ever happened to Doctor?"

Unlike most other businesses and professions, we physicians have a sacred contract with our patients. They allow us into the most private and intimate details of their lives. In return, we pledge to maintain stringent professional boundaries related to our behavior and give them the best of our intellect and compassion. Being addressed as "Doctor" is a constant reminder to me - and to everyone I interact with - of the oath I took to fulfill that pledge.

Please hold me accountable, and keep calling me "Doctor."

I think I understand where Dr. Middleton is coming from here, but I'm not sure I agree that a title is necessary to establish clear boundaries in a professional relationship. For example, my husband is lawyer and law professor; certainly his profession obliges him to maintain confidentiality and to be privy to intimate details of his client's lives. He holds two undergraduate degrees, three masters degrees and a doctorate and yet, he never uses an honorific with his clients. Despite being on a first-name basis, I don't for a moment think that the boundaries of his client relationships are unclear.

Similarly, my priest always introduces himself by his first name. He doesn't mind if people prefer to call him "Father", but in no way do I think that his sacred contract and requirement for confidentiality is diminished by forgoing the use of a title.

Dr. Synonymous responded on his blog to Dr. Middleton's post, saying: In the late 70's, we also had resident physicians who didn't want to be called "Doctor". It seemed that the "denial" of doctor "status" was one way to "power down" and not be threatening or aloof from patient "status".

Dr. Synonymous (also known as Dr. A Patrick Jonas) goes on to quote The Healer's Power, by Howard Brody, MD, PhD (1992): "To be compassionate in response to the suffering of the patient is therefore one of the most powerful things a physician can do: but this is possible only to the extent that the physician is willing to adopt a position of relative powerlessness, to acknowledge that the patient's suffering has incredible power over him and that he cannot remain unchanged in the face of it. This is a major irony of the physician-patient relationship, in which a sense both of one's own healing power and of one's necessary humility forms a synthesis of the apparent contradiction of power and powerlessness."

Dr. Jonas summarizes the meaning he takes from this quote, writing, "Some physicians may not feel ready for this type of struggle for professional development and don't want to fully accept the title of Doctor."

With all due respect to Dr. Jonas, I don't agree with this conclusion. While this may be true for some physicians, I think that the opposite could be true. Perhaps being on a first-name basis with patients can also be construed as a marker in professional development. It could demonstrate a sense of coming into one's self as a professional, whereby the physician trusts enough in their knowledge so as not to require the deference of a title in order to feel comfortable in their role.

The New York Times discussed this issue in 2009, Exam Room Rules: What's in a name? . Anne Marie Valinoti, MD struggles with this in her practice, but also raises an interesting issue of the use of titles between colleagues: "This got me thinking of how, in my own career, I have always been addressed as “Dr. Valinoti.” Freshly minted M.D.’s, some as young as 25, get a title of respect while seasoned nurses in the hospital are Betty, Kaye or Nancy.

I remembered the absurdity of this situation when, as an intern, I was addressing critical care nurses with decades of experience by their first names while they deferentially called me “Doctor.” These were women who had started their careers when I was still playing with Barbie dolls, yet where were their professional titles? Like most things in medical training, I got used to it, and it became second nature."

The comments to this article were fascinating. Some doctors insisting that they worked hard and deserved a title, to some not caring whatsoever. Patient comments were similarly diverse, some most comfortable with more formal introductions and others preferring first names.

One theme that stood out for me is that patients seem to prefer that their physicians use the same tone of formality (Mr./Ms./Mrs./Dr.) with their names as the physician uses with their own. Symmetry seems to be the key feature when it comes to introductions.

One last comment, I noticed (perhaps because I am on the path towards a PhD myself) that there was a certain tone of animosity in the NYT comments section from physicians who resent using titles for non-MD colleagues who also have access to the title 'doctor' (doctorate-level nurses, chiropractors, naturopaths, research PhDs).

Clearly this is a divisive topic. I'm curious how much time and discussion attention to power dynamics actually receives in medical education. Please feel free to weigh in your thoughts on titles...

In the meantime, you may call me Penelope.

Medical Paternalism - A Rant

Last week I had an MRI as part of a work-up to rule out MS. Today I emailed my physician's office to request a copy of the MRI report in advance of my next appointment. (Having my information in advance helps to prepare me for the tone of the appointment and allows me to formulate my questions in advance. In other words, it is very important to me.)

"I'm sorry, but I will have to ask the doctor for permission to send this information to you and she won't be back until Tuesday. Thanks!"

This shouldn't come as a huge surprise, this is from the same office that declined to tell me my blood pressure, because it might confuse me.

You need permission to send me a copy? Why? This is MY information. This is an image of MY head. The results are about ME. What gives you the audacity to think its ok that you and your staff can see the results of my test and withhold it from me?

Perhaps there is concern that I will not understand the results? I am reasonably sure that if I were an MD, an MD's spouse, or even a medical student, this would not be happening. I am frustrated that one needs to be a part of the 'members only club' of physicians to be allowed access in advance of my appointment.

No, I don't want to be patient and wait. In fact, I don't want to be yours or anyone's "patient". I want to be your "client", and you, my service provider. And when I ask for my medical record, I don't want to ask for your permission.

Stop withholding information from me. Your actions are paternalistic and offensive.

Rant over.

a plea to my doctors

I am trying my best to get to the bottom of my symptoms, but I can't do it myself. I need you. I'm pleading with you:

• Please help me find out what's wrong with me. I miss being able to work, study and rock climb. I miss going out with friends for dinner and drinks on Friday nights. I miss my old life. Something happened between then and now - help me find out what happened.

• Please don't tell me that I need to learn to live with my symptoms. I am doing my best to cope, but until you can tell me what's wrong with me, I don't want to believe I will feel this way forever.

• Please don't get annoyed that I ask for copies of my lab reports and ask you questions about flagged lab values. I am a curious person, desperate to find an answer. To you these questions are an annoyance, for me - this is my life slipping away.

• Please don't patronize me. If you have something to say, please say it to me in person - not in your follow up report to my PCP.

I need you more than you can know. Please don't give up on me.

teaching empathy?

A visting scholar, Dr. Arno Kumagai from the University of Michigan Medical School gave a fascinating presentation to our faculty a few weeks ago.

Dr. Kumagai is the director of an innovative program for first-year medical students called the "Family Centred Experience", where students are matched for a year with families dealing with chronic illness.

At the end of the year, the students create some form of artistic representation of the illness experience.

Please take a moment to listen to this mp3. I wish I could give proper credits, but was only able to find it listed as: Ben, Heiko, and Cailin
The song is about migraine experience, it left me in tears. These students are amazing.

mp3 Performance of "Lullaby", scroll down page to see

Getting it Right

While it feels sometimes like all I do is critique our medical system, I have to say this: when they get it right, they really get it right.

Two weeks ago, I lost a dear member of my family. That day came too soon for us. What started out as a simple bladder infection turned to sepsis in a matter of hours.

When it was clear that her situation had become grave, the staff in the ER could not have been more wonderful. They helped us through the difficult decision to withdraw treatment and move to palliative care.

The doctors, nurses, social workers, chaplain, housekeeping staff - were all kind and attentive. It was a busy night in the ER with patients stacked in the hallways; and yet they managed to give us private space to be with her while she passed. They brought us juice and crackers. They walked us through every stage of her death.

When the Canadian system functions well, it is a thing of beauty to witness.

Open letter to the doctor I saw this morning

Dear Dr. Whatever,
I appreciate that you are filling in for my regular family physician. I understand that you probably do things a little differently than she does; but your practice leaves a few things to be desired.

Despite that you have all of my medical records electronically, I didn't make a big deal over filling out all of your paperwork, with medical history, medications and allergies. If I'm willing to go along with writing all of this down for you, the least you could do is read it. Especially the part where I wrote - "Allergies: I had a rash while taking Doxycyline." Yes, a rash. Some skin redness.

I made myself comfortable and was pleasant while your nurse took my blood pressure. Unfortunately, she refused to share it with me, saying, "the doctor doesn't allow us to share test results with patients." When I raised this with you, you told me that patients aren't sophisticated enough to understand these confusing numbers. (It's only blood pressure for Gawd's sake!) Or, worse, they might want to have a conversation about it!

You walked into the room and stated your name and stared at me. Was that an introduction? Next time you might want to try a greeting, such as "Good morning, my name is______".

I realize that you don't know my medical history, but could you please try take my word for it when I tell you that I use a saline nasal rinse every day. And yes, I do know what saline is.

And finally, when you asked me if anything seems to help my sinus pain, and I told you that a Tylenol-based decongestant seemed to improve symptoms, perhaps lecturing me about the lack of efficacy of these products ("No, that wouldn't have helped, studies have shown that these don't work) was a little uncalled for?

Thank you for your time, I hope not to see you again.

(am I being too harsh?)

the joys of anonymity

One of the aspects of being a patient that many take for granted is their relative anonymity.

In many Canadian provinces, we work in a health "system", which means that in any one geographic area (around 1 million pop) all of the hospitals, long-term care facilities, health service providers, mental health & often public health services are part of the same organization. One organization I worked for had over 20,000 employees.

For patients, this can mean more integrated care, consistent policies & electronic record sharing - kind of like a restaurant chain - you know what you are getting, no matter where you access service.

The downside I have learned happens when you (as a professional) become a patient in your system. Having worked with the vast majority of department directors, managers, vice-presidents, medical officers of health, and specialist physicians, I don't can't just "blend in", I am not invisible.

No matter which site I go to for care, there is a good chance that I am going to run into a colleague. The thought of having to explain my miscarriage, depression, overall illness, resignation and entry in to the PhD program is more than I want to get into with most people. To be candid, I feel like I failed, in that I could no longer keep up with my work demands during the worst of my illness.

Next week I am going to be seeing a specialist in a city about two hours from my home. It's going to be nice to be where nobody knows my name.

don't worry, it's just a little atrophy...

If your head CT report concluded:

"mild frontal atrophy"..."perhaps related to condition" (what condition?), would you feel concerned?

Apparently not, according to my new internist.

Good news, I suppose, but still...brain and atrophy aren't words I want in the same sentence!

heaven is real (or finding my "new normal")

Standing at the airport bookstore, only moments before boarding my flight, I grab the first book that catches my attention, throw some cash on the counter and run for the gate.

I squeeze into the seat next to the window and realize that I have selected the book "Heaven is Real", by Don Piper. I had never heard of the author before, despite this being his third best seller.

In a nutshell, Don Piper claims that he died for 90 minutes following a terrible traffic collision and was brought back to life. In that time, he says that he went to Heaven. He feels that his mission today is to spread that news with people.

Sometimes I struggle with my Christianity. Am I being called? What does God want me to do? Could he please send me a very clear text message??

Obviously I don't know if the author really died for 90 minutes, and while I tend to believe him, that is not important really. What is important is how he describes coming to the realization after his accident that things would never be the same for him again. With his myriad of injuries, he was going to have to find his "new normal".

This book was worth 10 therapy:

I have spent the past 2 years waiting for the 'old me' to return. Waiting until I was healthy enough to be a rising star again, to resurrect my great job and excellent professional reputation. BUT....what if the 'old me' doesn't exist anymore? What if she never will? In short, what if THIS is my NEW NORMAL?

As simple as this sounds, this small shift in my thought process feels like it has liberated me: I may never get better!

I may never be that high performing, straight A honors student ever again. Or the high ranking health professional - maybe that is gone for good too.

And you know what? It won't matter.

I need to discover what my new normal will be. To find a way to be kinder to my self and honoring of my body's limitations. To use my talents to offer hope to other people.

Heaven is real. It's just hard to see from behind the fog of depression.