I had been to the doctor’s office a million times with complaints such as “I’m tired yet I am sleeping 10 hours a day and cannot keep my eyes open at work.”
“The minute my head hits the pillow, my eyes go blink, blink, blink and I cannot sleep but literally cannot function I am so exhausted.”
“I have gained weight.”
“My hair is coming out."
“It feels like my brain is in a tunnel of fog all of the time, I’m surprised I can drive.”
"I made the appointment and waited four months to get in only to be told, “It’s all in your head, go see a psychiatrist.”
I made the appointment, and waited four months to get in only to be told, “It’s all in your head, go see a psychiatrist.”
Shortly after that I found out about Holtorf Medical Group and made an appointment that meant a five-hour drive. They did not accept insurance so I had to pay for this out of my pocket. It was then I figured that if I was going to have to shell out this money and drive so far, I had better start doing some research.
I began reading everything I could on thyroid diseases. The first book I purchased in 2011 was Stop the Thyroid Madness. I couldn’t understand half what it was talking about due to the strange terms and concepts, even though author Janie Bowthorpe wrote it in plain English. Still, it started a chain reaction in my head; I started taking my basal body temperature, logging my symptoms, and reading all I could find on thyroid disease, so by the time I went for my appointment in July of 2011, at least I knew a tiny fraction of what was being discussed. Thus, I began the process of learning to talk to doctors.
"Her response was, “You have been doing some reading, haven’t you? What have you learned?”
Fast forward to current day. After many appointments and hours upon hours of research, I just had another experience illustrating how important it is for us, as patients, to know what we are talking about. After I originally shared my story with ThyroidChange via this blog (scroll down the page to the second blog to see), a friend from high school, whom I had not seen in over 20 years sent me a message on Facebook. She suggested I read “The Extremely Unfortunate Skull Valley Incident” by Donald W. Scott and William C. Scott. I was stunned at what I had read. I knew this would be valuable information for my next appointment in April. After speaking with my doctor on the phone and discussing some more issues that had reared their ugly head in my blood work, I asked her a question, “What do you know about mycoplasma?”
Her response was, “You have been doing some reading, haven’t you? What have you learned?” I told her what I knew (which really is not much in the grand scheme of things) and what I had read. Her response surprised me as she said, “I have not read that book but I will…” and we had a good discussion about this bacteria. Turns out, mycoplasma could be an issue for me (I have Lyme’s disease as well). This bacteria is on my list for testing during my next office visit.
I have, not only a binder with test results and office visit notes, but a little notebook that I keep “medical stuff” in. When I read an article about an optimum test level for something, I write it down. For example, I do not believe I had ever had my selenium or biotin levels checks and those are two very important levels for thyroid patients. I tested positive for one of the MTHFR mutations. I have researched that glutathione and methionine may be converting poorly in my body and would like to have this tested.
In his book, “Bioidentical Hormones101, Dr. Jeffrey Dach makes an interesting point about the evolving interaction between doctors and patients: “Tom Ferguson, M.D. describes the advent of a new type of doctor-patient relationship quite different from the old paternalistic one, in which the doctor is educator and participant, and recognizes an opportunity to learn from the expert e-patient, who engages in internet searches for medical information and may actually have more specialized knowledge than the doctor. The new doctor openly shares information with patients, and serves as educator.”
"You have permission to heal yourself. Don’t fall in to the trap of thinking that you need a very clever doctor who can write you a prescription for drugs."
We, as patients, can be extremely intelligent. We are the people who know our bodies best as we live in them every day. We have to educate ourselves and not go into the doctor’s office and simply say, “I am tired all of the time." I am a firm believer that doctors want to help us but we cannot go into a doctor’s office once every six months or so and expect them to know us. We have to help them know us. Keep a journal, research on your own, join support groups, not only for emotional support, but for additional learning opportunities as well. We have the power to change the way we, as thyroid patients, are treated. We have the ability to help our doctors help us.
One of my favorite quotes is from Dr. Richard Ng from the Centers of Holistic Medicine; “You have permission to heal yourself. Don’t fall in to the trap of thinking that you need a very clever doctor who can write you a prescription for drugs. It’s the permission to heal and really taking ownership of your own health. That is what you need to do. I, personally, could not get well until I took ownership of my health.”
Editor's note: Jennifer's experience not only highlights the benefit of a respectful patient/doctor relationship, but also the importance of finding a good doctor who will take you seriously. Please check out our FIND A DOCTOR tab on our homepage for a list of smart ways to find a doctor in your area.