Flying With Broken Wings: Desperately Seeking Dr. Jekyll
One of the comments on my last column inspired me to write this article. The commenter opined that she feels that the doctoring profession is subjected to witch hunting and saber rattling on Dear Thyroid™. She believes that this is because patients get angry and lash out at their doctors. It concerns me that some people might feel that way when reading Dear Thyroid™ because I know that this is not our intention and I also believe that this is a gross oversimplification. People’s horror stories with their doctors are not always easy to digest, but in many of these cases the patients suffered unacceptable mistreatment and/or misdiagnosis (as in the examples described in my past column Flying With Broken Wings: Difficult Diagnoses, Dimwit Doctors and Tricky Treatment) and, as I also said in my last column, sometimes we need to talk about unpleasant things in order to bring them to light and invoke change. We can’t simply sweep them under the carpet and pretend that they never happened.
Hearing the stories of bad doctors outrages us and inspires us to create awareness. Dear Thyroid™ is a safe haven for thyroid patients to vent about these experiences so that they can ultimately work through them and realize they are not alone. However, I strongly believe in giving credit where credit is due, which is why I sometimes praise my own good doctors in my column. As fellow Brit Phil Collins states “we always need to hear both sides of every story.” In that vein, I’ve decided to dedicate this column to the topic of good doctors and those who work with them. Hearing the stories of good doctors inspires us because it makes us realize that there is always hope that we too might find the right doctor to restore our quality of life.
I want to start off by considering what constitutes a good doctor and would also love to subsequently hear your opinions on this. As with everything in life, if we start off by deciding what we are looking for (I think the same applies when you are looking for a partner), it’s easier to know when you have found it and sometimes easier to find it in the first place. Like people, no doctor is perfect and there might always be things that bug you about them – for instance, my PCP is highly knowledgeable, proactive and determined to get me well, but the waiting times can be horrendous – four hours or more is not unusual, but this is because he spends time with his patients and because of his renown throughout the German thyroid world, his list of patients is literally never-ending. In the long run, however, this is good time invested and in my opinion better than wasting time going to a doctor who doesn’t have as long a waiting time, but doesn’t have the skills or the impetus to get you well.
My gyno, on the other hand, is also proactive, knows his stuff and is a truly caring person, but he doesn’t answer my questions in as much detail as I’d like and can be quite gruff at times (starting to remind me of Dr. House actually), but – as I discussed with Corey – we have to set priorities and for us our priority is finding a doctor who knows what he is doing and possesses the skills to get us well. If we have to deal with gruffness or waiting times, but the pay-off is a skilled doctor, so be it. Maybe one day, I will find the perfect doctor with little to no waiting times, the perfect bedside manner and the skills to cure any disease. If any of you have already met him/her, can I please have his/her numberJ? The following is my list of points for important qualities to look for in a good doctor.
A good doctor realizes that you never stop learning. I may have a language degree that has taught me to become fluent in two languages, but language is a living thing that is constantly developing and never fails to fascinate me and I’m also constantly learning new things about my native language English. The same is true of medicine, of course. Medicine sometimes develops at a breakneck speed and a good doctor needs to keep up-to-date with the latest developments in order to offer his/her patients the best possible treatments, including some new ones that may have just gone to market. Unfortunately, it seems that there are doctors out there who haven’t learned that much about thyroid disease since they graduated from medical school many decades ago. To my mind, these doctors are doing their patients a disservice. As a translator, my clients expect me to be able to use the latest translation software and, if I can’t, they might just pick someone else. As my customers have expectations of me, so too do doctors’ customers (patients) have expectations of them – and rightly so. A good doctor is determined to find out all they need to know to get their patient well. It may sound like a tough challenge, but the profession of medicine is one that carries a huge responsibility because you are affecting people’s quality of life and chances of survival.
A good doctor is open to learning about and trying new things. Pharmacist J described how Barb Backus, the nurse practitioner he works with, decided to learn about bio-identical hormones (“the same hormones that humans produce instead of hormones that only mimic human hormones”) to help her patients: “Barb is very thorough and listens to her patients. I believe many doctors won’t take the time and come in with their preconceived thoughts on what is wrong and look in the cookbook for how the treatment goes. When that doesn’t work, they then say that is all they can do. Barb got into bio-identical hormone treatment when she knew that people were suffering and she felt she didn’t have answers.”
Yesterday, I went to a German thyroid conference with Christina Hütten. We were not only shocked and outraged that a pharmaceutical representative from one of Germany’s biggest pharma companies and a producer of many thyroid drugs whose name begins with M told a patient that Graves’ disease is hypothyroidism. I asked her if I had heard her correctly and the lady gave me the unconvincing answer that Graves’ patients are “a little bit hypo” – she obviously had no clue and was too busy waving what she thought to be a chic fan in front of her arrogant face in order to make up for the lack of air-conditioning, as we rarely get enough bouts of hot weather for people to consider investing in an air conditioning system here.
To add insult to injury, when I curiously asked the doctor running the conference and giving a speech about thyroid operations whether he had heard of NDT and Armour Thyroid, not only did he look uninterested when I told him about it (silly me assuming that all doctors are interested in learning about new things) – incidentally, he had never heard of it – but he told me that if he were me, he wouldn’t be taking something made from pigs. I politely replied, “Thank you very much, but I know what I’m doing. I’ve done my research.” Afterwards, I wished I had asked him if he eats pork – it seems that this is Germany’s most popular meat and many people here love schnitzel.
This isn’t the first time I’ve heard this argument from people here. Not only do some people not bother to enquire how this medicine is made (with a safe and strict manufacturing process – I’m assuming they think it’s unregulated and carries a risk of the person taking it catching some porcine disease), but they also fail to care that it has helped so many who don’t do that well on synthetics. When we flew to Ireland, I had a discussion with a pharmacist at Düsseldorf airport about how to get hold of Armour. She told me that six months prior a German law had been passed forbidding the import of medicines that are not approved in Germany (and Armour is one of these). She told me that there is no demand for Armour Thyroid here in Germany because in her whole time working at the airport pharmacy, not a single patient has asked about it.
Well, first, I wouldn’t necessarily go to the airport pharmacy to ask about how to get a medicine and secondly – and I told her this – just because nobody’s asked about it doesn’t mean that there is no demand. How can they ask about something they don’t even know about? Time and again, I have come across people here who do blindly believe their doctors without the curiosity to find out more. The Germans ironically call doctors “Götter in weiß” (Gods in white). Well, we kept arguing, the pharmacist and I, until I turned round and told her that people here aren’t really that interested in progress anyway, are they? Sadly, she agreed. I think many people here are huge fans of stability and it can take very long for certain new things to catch on, but sometimes ignorance is bliss and ignorance can also be very dangerous and prevent you from getting the treatment you need.
In stark contrast to this is my good PCP who is actually a big proponent of NDT and was so optimistic that it would work better than the synthetic T3/T4 med I was taking that he prescribed me 200 capsules right off the bat. In so doing, he not only fulfils point I by even knowing about a medicine that most German thyroid doctors appear to never have heard of (as it is not widely available here, but was prescribed decades ago before the advent of synthetics and now seems to have been either forgotten or dubbed as old-fashioned and inconsistent), but he also fulfils point II because he is open to trying something new that is considered unconventional here. I was fed-up of not feeling as good as I’d like on synthetics and so I did my research and found a source for NDT in Germany (in fact, there are two). He did not know about this source, but he was prepared to prescribe the meds if I could find out what he needed to know – dosage conversions and where to get the med. He listened to something new I wanted to try and was prepared to give it a whirl. I’m not saying you can demand anything and expect your doctor to always agree, but a good doctor should at least consider it and NDT is something that anyone who has read about thyroid disease knows has helped quite a few patients who don’t do so well on the synthetics. I believe the patient testimonials over the claims of some doctors who don’t know anything about the med. I think if you ask your doctor to try something and he/she refuses, the very least he/she should do is explain why he/she doesn’t want to give it a try and that means they need to do their research too. Today, there are many educated patients and I don’t think every doctor can handle that.
A good doctor listens to how you are feeling rather than stringently adhering to blood tests. I talked to Dr. Teitelbaum yesterday. It seems that this approach is his treatment focus. He periodically tests free T4 levels to ensure that the patient isn’t hyperthyroid, but at the end of the day he listens to their symptoms and adjusts the dosage accordingly to eradicate these symptoms. After all, these blood levels are based on a limited number of people and every patient deserves and needs customized treatment because they are an individual. Pharmacist J talked highly of nurse practitioner Barb Backus he enjoys working with to get his patients well because “she listens to you and isn’t afraid to think outside of the box … she treats the patient and asks the questions ‘how do you feel? What symptoms are you having?’ She does do many tests but looks at everything. K told me about the best doctor she had ever had: “She was willing to look and listen to me and take my word over that of lab tests. She got me started on thyroid replacement, in opposition to Kaiser’s standard operating procedure re relying on lab tests to determine treatment and dosage, and did follow-up and dose adjustments. She is no longer working for Kaiser (she took too much time with her patients for Kaiser’s appointment system).”
A good doctor doesn’t give up on you or accept compromises. Thyrella A sung the praise of her naturopathic doctor (who is listed in Dear Thyroid™’s list of patients’ doctors) because: “She actually listens to me! I feel like I can actually see her brain work as I talk to her. She is thinking about what I am saying and what her response will be. She will discuss any issue, thyroid-related or not. She keeps on working until a solution is found, like just the right amount of medicine to make the levels good and symptoms go away!”
My first thyroid doctor (whom I soon left because thyroid disease is evidently not her specialty) told me my disease would be easy to treat and when my TSH went down to around 1.8, she patted herself on the back and smiled. Well, I didn’t because I still felt like crap and knew my dosage wasn’t optimal. It’s not about getting someone “within range”; it’s about getting someone within their own personal “feel-good range” – I reiterate: everybody is an individual and requires individual treatment. J’s doctor definitely concurs with this: “I love my doctor … he listens to me. He asks how I’m feeling BEFORE we discuss my bloodwork. He tells me he treats the individual rather than applying the same treatment to all of his patients.”
In a similar vein, because thyroid disease can affect the whole body, it’s not only important for your doctor to do the right tests, but also to do thorough testing of other things. One of the things that makes our PCP such a good diagnostician is the fact that he routinely tests every thyroid patient for related conditions such as Epstein-Barr virus, yersinia, Legionnaire’s, borreliosis (Lyme disease) and several others. Many of these are said to trigger thyroid disease and/or chronic fatigue syndrome/fibromyalgia, which are also related and sometimes it’s necessary to eradicate these in order for the patient to feel better. Thyroid disease is not simple! J’s doctor, who is based in the Atlanta, GA, area (Northeast metro Atlanta), is well aware of this: “He has NEVER once told me that thyroid cancer is the good or easy cancer. In fact, he has told me that it’s HARD.”
A good doctor is compassionate and a people person. We want to be treated as human beings and not told we are crazy or imagining our symptoms. As H puts it: “Until now I have only had a therapist who understood that it was pain and fatigue that was making me frustrated. She was the first to see me as a person who was being overlooked and undertreated. She made me feel like I was not crazy, just really sick. She had been through the same issues.” Empathy is always an important quality, isn’t it?
I find it easy enough to recognize if your doctor truly cares about helping people or is merely in it for the money. KL told me a heartwarming story about one of her doctors: “Around Christmas time last year my doctor at the time gave me a gift certificate to Meijer so that I could get my Synthroid and Albuterol nebulizer medication. Her and her husband bought maybe 10 – 15 25$ gift certificates and gave them to a few low-income patients who couldn’t afford their needed medications. She was a very caring doctor! How many doctors out there spend their own money to give better care to their patients?”
L’s doctor is based in the Boston area and is a real keeper who truly seems to care about her as a person: “The first time I met my new doctor (hormone specialist/gynecologist) she came to the waiting room to get me and introduced herself by her first name and at that moment my hope was restored because in doing this she humanized herself and made me feel very comfortable. I feel like I am still getting to know her but so far, she far exceeds any doc I’ve met. She gets it. She does a very thorough exam, listens well, never makes me feel bad about anything that concerns me, spends time explaining things and answering questions and never hurries me out the door.”
It is always hard for me to stomach being talked down to. I think a good doctor sees their patient as a customer and a partner. The ideal doctor for me does not get impatient when I ask him/her questions and doesn’t insult my intelligence by assuming I won’t understand things. He/She is not threatened by the fact that I do my research and actually know about my body. After all, if I hadn’t researched as much as I do, I wouldn’t have learned about half of the things that I believe are helping me to get well – including, of course, the Natural Desiccated Thyroid I started on three and half weeks ago that is making me feel better than ever. I would have started on it even sooner if I had been able to find a source!
L talks very highly about her doctor’s nurse who was eager to educate her on the seriousness of thyroid disease: “She told me to look on the back of the patient’s room and take a good look at the poster and I did! There in full color was a picture of a body with this on top: Thyroid affects every organ in your body! Then she explained it affects every cell in your body – who knows how it will affect this one or that one, we don’t know! We only have the right to practice medicine. We don’t have all the answers; we are looking for clues to narrow it down.”
B told me about her journey to finding the right doctor and her experience how important it is to try out different doctors until you find the right one for you: “Finding a good endo was sort of like dating. At first I didn’t know I needed an endo. I went to a G.P. who decided I was binge eating and bipolar, even after I managed to get her to test my thyroid. I broke up with her and proceeded to go out on a lot of ‘dates’ with a lot of different doctors. The ones that fit the bill didn’t come up with anything. But finally, one day, I found Shimon. He did the most thorough exam I had in my two years of searching. He took his time, talked to me, and listened a lot. After some more testing, he knew that even though my results were ‘normal’, my hormones were not balanced in relationship to each other. I thought I had PCOS, but no one paid attention in the past when I mentioned it. Shimon, however, did listen and did realize I have PCOS, insulin resistance and Hashi’s. Finding a good doctor was like dating. I tried online sites, read self-help books, had one-appointment stands, dumped a few, had a few dump me … and eventually found a keeper.”
Now it’s your turn. I’d love to hear about your experiences with good doctors (assuming you have some to share) and what qualities you consider important for a good doctor. I’d also love you to consider entering the details of your good doctors in Dear Thyroid™’s list of patients’ doctors. I’ll be taking a hiatus from writing my column for the next two weeks, but am looking forward to publishing the many other columns that I have up my sleeve. I always appreciate your suggestions and feedback!
Tags: Armour Thyroid, bad doctors, blood tests, by Sarah Downing, compassionate doctors, Desperately Seeking Dr Jekyll, doctors who care, doctors who listen, Flying With Broken Wings, how to find a good doctor, kind doctors, learning, Natural Desiccated Thyroid, NDT, patient as the doctor's customer and partner, patient experiences, related conditions, research, symptoms, trying new treatments, what makes a good doctor