Getting What You Need From Your Doctor: Challenges of Thyroid Care
An Interview with Don "Doc Don" Michael, M.D.
I rationalized my treating them for quite a while before I simply admitted that the labs were not showing the whole picture.
It gradually became apparent that low dose thyroid replacement not only potentiated antidepressants, as we were taught in psychiatry; but adequate thyroid replacement frequently eliminated the need for an antidepressant. My secret "guilt" was that many of these people who had more signs and symptoms of low thyroid function had perfectly "normal" labs. I rationalized my treating them for quite a while before I simply admitted that the labs were not showing the whole picture.
Later, I discovered that I, along with my wife, daughter and dog, was hypothyroid. It seems that I have always done best treating things that I have survived. One dramatic thing about thyroid problems is that you feel worse, sometimes, as you get better. It started to occur to me how much of my life I had really missed out on. The only thing that seems to soothe that bitterness is to help someone else get out of that private hell. I've talked with other docs who have had hypothyroidism, and they are the only ones who really seem to understand it.
When a woman, who I sent to a colleague for hormone replacement, was taken off her thyroid medication and had to deal with a recurrence of the major depression; I resolved to learn about the mysterious Female Hormone Replacement. Drs. Vliet and Lee taught me much, and I found that combining adequate hormone replacement with thyroid supplementation for the patients who needed it was almost miraculous. The role of adrenal insufficiency was brought to my attention by a workshop at Broda Barnes Foundation, and by a patient who brought me in information she downloaded from the Net.
Mary Shomon: Thanks, Doc Don, for taking the time to talk to the thyroid patients at my site. You have said in the past, "if there were one single problem in the area of hypothyroidism so much more important than all the others, it is how to train docs and get what you need." Can you explain a bit more what you mean by this?
Doc Don: One of the reasons that I really enjoyed your book was that it is a matter of fact outline of what one needs to do to "live well with hypothyroidism." Unless you happen to be a doc, you will need to engage the cooperation of one who is both knowledgeable and willing to listen. I often say that I would sooner trust most of my patients to titrate my thyroid medication before I would any other doc in my town. My patients know that hypothyroidism is hell, no one wants to take too much thyroid replacement, and that information from patients is more important than information from lab slips.
To a large extent, this means finding a doctor who is amenable to reason, empathetic, and who will take the risk of listening to a patient instead of a lab slip. Your ideas on how to select a physician and how to manage the pragmatics of the relationship are important. The sending of reading material ahead of time was a nice example.
Mary Shomon: One of the biggest challenges most patients seem to have is finding a good doctor in the first place. Do you have any insights into how to locate the kind of doctor who will take thyroid problems seriously, and work with patients productively?
Doc Don: I have learned most of these from my patients. Since I went into Recovery for The Man Thing (We are not allowed to admit that anyone else has brains.) last year, I have been rewarded with a lot of intelligent and empowered patients. One patient called the offices of the doctors in his town and simply asked the nurse if the doctor relied more on symptoms or on lab work, and if he or she prescribed Armour thyroid. I thought that was an especially astute move because the nurses really do know most of what is going on, and they are usually nicer to talk with. A few others called the pharmacies around to see who wrote for a lot of thyroid, and one person actually called the company who were more than happy to provide a list of names.
I have referred a lot of patients to your Top Docs Directory. The principle of doctors being listed only by their patients, is a brilliant one. It is also handy when people from other areas ask for docs who do the same kind of thing that I do. I see the rapid, voluminous, information that is available on the Net as being a major force in changing medicine and doctors for the better. When everyone knows the type of care that a given doc is giving, the marketplace will help eliminate the poor ones.
But, I will be the first to recognize that it is not always that easy. I went for years, undiagnosed. To this day, I am grateful that I can prescribe my own thyroid medication when I see how so many of the people who come to me cannot get treated.
Mary Shomon: One of the greatest heartaches for me are patients who are in HMOs, and appear to have no recourse, because they are "stuck" with an unproductive or downright unhelpful doctor. Do you have any thoughts for how these patients can improve their situation?
Doc Don: Unfortunately, I have chatted with many people in precisely that situation. But, there are things that can be done. A frank discussion with the doctor involved may sometimes change things for the better, or at least make differences more obvious. One can appeal to the HMO for a change of doctors, and talk with the Human Resources director at the company that buys their insurance. If all else fails, I frequently advise people to go outside the HMO and get the best care that they can. Inexpensive care is NO bargain if it is bad care. After wasting years of my life in untreated hypothyroidism and watching family members suffer from it; I realize that nothing is as expensive as not getting treated.
Mary Shomon: It seems even overt thyroid symptoms are sometimes ignored, dismissed, overlooked, or misdiagnosed. Why do you think it is so difficult for women to get tested -- much less treated - for thyroid disease?
Doc Don: Until I read Elizabeth Vliet, MD's book "Screaming to Be Heard: Hormonal Connections Women Suspect...And Doctors Ignore," I had no idea of how really horrible it is. It seems that patients, in general, don't get heard. But women in particular, are not listened to. I think that part of this is "The Man Thing" in which doctors feel threatened by the notion that anyone else could have a better idea. I'm sure that part of it is the sexism of our society. Women, too often, do not get equal treatment nor are they listened to as often.
At almost every hospital I have worked at, there are one or two very competent women who know everything that is happening, what needs to be done, and who needs to do it. They usually make much less money than CEO who is sometimes completely out of touch with staff and patients. When I need to know something, I usually seek out one of the women, as does virtually all the staff. They usually get some title that has the word "Assistant" in it. The really bad part is that no one seems to see anything wrong with these situations.
Likewise, the way women are treated in medicine has not raised eyebrows, much less furor. The most common cause of painful, heavy menses (PFH-periods from hell, as one patient called them) in the absence of structural abnormalities, is low thyroid. Yet, I have lost count long ago of the women who got hysterectomies for PFH, and who I later diagnosed as being low on thyroid. I always wonder, why myself and so many others who pay attention to thyroid problems know about this, but so many gynecologists don't.
Mary Shomon: Because thyroid disease predominantly affects women, I sometimes hear from men who feel left out. They wonder if the symptoms, problems, and solutions I discuss here at the site are applicable for them. Typically, I tell them that except for menstrual, pregnancy and fertility problems, almost everything else about hypothyroidism is similar for men and women. But have you found any aspects of thyroid disease that seem to uniquely affect men?
Doc Don: Besides the obvious erectile dysfunction, symptoms tend to look different because of the different roles that men have. Sleepiness on the job or on the way home seem to be more common reasons for men to seek treatment. Sleep apnea (stopping breathing while asleep) is more common in men, and hypothyroidism frequently helps bring on this problem which is a well known cause of daytime sleepiness.
At the gym, I found that I was no longer able to curl as much weight as I used to. With the characteristic unthinking of a hypothyroid, I just put back the weights I always used, and got a lighter set. While women get about the same amount of muscle weakness, it shows up more when you are lifting near the top of your capacity than it would if you had a job that didn't require a lot of physical labor.
Mary Shomon: You have suggested that you believe many patients have a better understanding of thyroid diagnosis and medications than many of their doctors. Why do you think that is the case?
Doc Don: Elizabeth Vliet first taught me about "Women's Healing Wisdom." She explained that "most women are attuned to their body rhythms and body sensations in a positive way. They also seem to have a good intuitive sense about what might be wrong, and that this enhances survival. Given the opportunity, they ask well thought out and thought provoking questions about their health."
I wasn't sure if that was true when I first read it, but now my only regret is that I had to get this old to realize that it is.
A woman was giving me her history of hypothyroidism with muscle and joint pains. I thought that it sounded like Fibromyalgia, but on a hunch, I ask her what she thought it was. "It sounds like Fibromyalgia," she said with a shrug. "Why didn't you tell me that, that's exactly what I was thinking about?" I asked. She turned to me and said, "I've told four other doctors and no one listens." It's no wonder that the patients know the disease better than the docs who won't hear. Women have a LOT of very valuable information that most docs totally ignore. It keeps the docs ignorant, and makes for poor care.
Men, too, are often much more knowledgeable about their illness than their doctors are. I've chatted with many intelligent men who get into the "problem solving mode" when the illness threatens them or their loved ones. They will work at finding a solution until they get one. They experiment, explore, research, and discuss. I've seen men meticulously test one hypothesis after another, and do better science than you see in medical school.
Hypothyroidism is a very chronic illness that effects almost every aspect of a person's life and is like being in a prison. People have a lot time to contemplate their plight, and those with the inner resources will look for ways to escape.
Mary Shomon: What is your personal philosophy for thyroid treatment?
Doc Don: (This one is almost my Mantra.) Thyroid status is a diagnosis, NOT a blood test. The clinical lab cannot replace clinical acumen. In any condition, from gunshot wound to pregnancy, 85% of the diagnosis is history (What has been happening to your patient before they came to see you?), 10% is examination (How does this person appear to the trained eye?), and the labs are only worth about 5%.
These are not my crazy ideas, I learned this in medical school. I didn't believe it then, now I do. Except for not having labs to be misused, these ideas have been the essence of medicine since before Hippocrates. The "Normal Range" is really a statistics phrase, not a medical one. It says nothing about health, only how common or uncommon a given score is when compared to the population scores of those who took that test before. The "Normal Range" is most often one that encompasses 95.5% of the scores in the population. Saying that your thyroid is healthy because your number is between the little number and the big number is easily as foolish as claiming that you are physically fit if your weight is between 75 and 260 pounds (That would probably cover 95.5% of the weights in the USA.) without knowing anything else.
In my opinion, it is total madness to treat numbers on a lab slip without regard for the health or well-being of the patient. Far worse than making these mistakes, is the attitude of physicians that prevents these mistakes from being corrected. I have bright, empowered people coming in from all over the country for evaluations. Not infrequently, my diagnostic impressions and suggestions for treatment are exactly the same as the conclusions that they arrived at months or years ago. Sometimes, I think that their doc back home could have easily handled this, if he or she had only listened to them and learned from some of those Internet downloads that frighten so many docs.
Doctors seem to ignore the simple fact that hypothyroidism was nicely diagnosed and adequately treated, in Western medicine, for close to 100 years before the labs had anything relevant to say about thyroid status.
If I could tell docs anything (that they'd listen to), I would let them know that patients are intelligent, empowered people, your partners in wellness, and not enemies. Patients are kind enough to put food on your table, listen to you, and it is not only OK to listen to them, it is a sacred trust that you do so. Dr. David Derry said, "If you listen closely to your patient, they will tell you what is wrong. And if you listen even more closely, they will tell you what needs to be done."
Mary Shomon: If you had to offer a few key pointers for thyroid patients on how to get the best possible care from their doctors, what would you suggest?
Doc Don: Bring someone with you when you go. In order of effectiveness: a spouse, relative, close friend, other. There is a definite psychological advantage to having someone with you to be supportive, remind you about questions or problems, and possibly even take notes. And, there is a limit to how disrespectful most people will get in front of a witness. If there is resistance to this, explain how you would like to hang on to the doc's every word and are afraid that you may forget something. Being in psychiatry taught me that people will always accept an excuse that lets them think that they are smarter than you.
Bring a list of questions and concerns, possibly a brown bag with all your medications or a list of them, and learn as much as you can about your illness. In the past, patients would too eagerly hand over their bodies to a doc for a "cure" without knowing what that involved. It was never a good idea, but it is more apparent now than ever.
Don't tolerate bad care. I know of no one who would take their Porsche to a dealership for repairs after that place repeatedly retarded the timing and messed up the repairs so bad that you couldn't get up to 35 on the freeway. But, the most common complaints that I hear on thyroid listservs and bulletin boards are from people who are among "the living dead" because their docs either will not treat obvious hypothyroidism or they horribly under treat the illness. Treat yourself at least as good as your Porsche.
Mary Shomon: How can patients get in touch with you?
Doc Don: I'm located at 328 North Michigan Street-Suite B3; South Bend, Indiana 46601; Phone is (219) 287-6010; Fax is (219) 287-6651. Email: Dmichaelmd@aol.com
We've been really swamped so it is really important to not mistake automated responses and long delays as a lack of interest. I have been trying to find a like minded doc to share the load, but that has been far more difficult than I had realized.
All information is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. You should seek prompt medical care for any specific health issues and consult your physician or health practitioner before starting a new treatment program. Please see our full disclaimer.