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Going For The Throat: Good Health Care Starts With YOU

Post Published: 14 January 2010
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Category: Thyroid Health Care & Health Related Issues Column
This post currently has 27 responses. Leave a comment

Written by, Robyn Davis Hahn

“My doctor doesn’t listen to me…   “My doctor is dismissive about my symptoms…   “Doctor’s don’t care about patients, they care about money…

Bottom line: Doctor’s SUCK.

My thought?,   It’s conjointly YOUR fault, so if you don’t like it, suck it up or do something about it.

You heard (read) me correctly.   Stop pointing fingers at your doc, because your “bad” health care is your own fault.   To be fair, I don’t think it’s all your fault, doctors and the medical community definitely share the blame, and your disease is certainly not your fault at all.   I’m willing to wager there are a few de facto “bad” doctors out there, but not nearly as many as their are complaints from patients.   (In the next weeks, I’ll outline some of the problems on the doctor end, but today, the buck stops here.)

Why is it our fault (I’ll join you here, since I’ve ranted about a certain craptastic doctor in the past and know I share the blame)?,   There are many possible reasons, and one or more may apply in any particular instance:,   our attitude (arrogance, defensiveness, etc.), our knowledge or lack thereof, our compliance with treatments and medications, our submissiveness or lack of assertiveness–basically a lack of effective communication with our doctor.   (Clearly this does not apply to those somehow incapacitated.)

We go to doctors largely because we have something wrong, and we expect our doctors and medical staff to be our saviors from disease.   Frequently, although we’ve likely been ailing for months or years, we want answers NOW and we want to feel better YESTERDAY.   For certain ailments, this may be not only entirely possible, but expected–trauma leading to a fractured bone, for instance.   When symptoms are more vague or indistinct, a doctor has to rely on testing (sometimes very general at first, eventually more specific), patient history, and clinical experience to guide them for answers, and the answers aren’t always easy or quick to find.   By the time you’ve found the Dear Thyroid support site, you (usually) have the benefit of hindsight, time, and self-research on your side–of course your doctor is stupid, the final answer is so OBVIOUS now.

Let’s back up a minute and look again.   Imagine a knock on your door, just as you are about to leave for an important event.   You open it to find a kind-looking, smiling, but disheveled young woman.   You say hello and she begins speaking very quickly in a foreign language.   You start out calm, trying to understand and help, but your lack of immediate understanding is frustrating to her–she begins to gesture, speak louder, maybe she stomps a few steps away before returning and then begins again.   By this time, you are shifting your weight and checking your watch because you have have to leave now or you will be late.   You start to gesture back–phone?,   money?,   car?,   None of these answers seems right, and you realize something is wrong but you are both exasperated.   Finally, you say you’re sorry, but you must go and close the door, as the woman solemnly, defeatedly moves on down the street.

This is what disease diagnosis can look like for a doctor and a patient.   They can’t always understand us, and we can’t always understand them.   They want to help, but have a waiting room full of other patients.   We want help, but don’t know how to concisely verbalize our problems or even realize what information is important and what is confounding.   While it is clearly the doctor’s JOB (literally) to get to the bottom of our disease, if there is a breakdown somewhere it is OUR responsibility to change the dynamic, or change the doctor.

So lets give the doctors just a little bit of a break.   The vast majority of them really do care, really do know their stuff, and really can help.   We just have to learn to speak the same language.   Next week, I will have specific ideas and tips, and maybe even a downloadable checklist, of ways to improve the communication and relationship you have with your doctor, which can only better your care in the long run.   Hopefully these tools will empower us to recognize, embrace, and ultimately resolve the barriers between US and THEM.

Because, at the end of the day, your health is your responsibility.

Robyn

The art of medicine consists of amusing the patient while Nature cures the disease. -Voltaire

In honor of THYROID AWARENESS MONTH, I invite you to not only leave comments if you wish, but also to join in some interactive discussion on the bulletin board.   In addition, for the next 7 days I will be tracking statistics on the entire Dear Thyroid Forums–and will be giving the new Thyroid Awareness Bracelets (actually, THREE bracelets) to the largest contributor (numbers of posts), a random contributor (the more you post, the better your chances), and to the most insightful or thought provoking post about today’s subject.

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27 Responses to “Going For The Throat: Good Health Care Starts With YOU

  1. Liz says:

    thanks for this, Robyn. i definitely agree about the necessity of communication.

    i think also, our health care system isn’t build to assist the patient (it’s not patient-centered), and this is also hard on the doctor. when a doctor can only see a patient for mere minutes, due to insurance and money constraints, it makes the possibility of *health* more impossible. how can the patient and doctor be expected to communicate effectively and hear and understand each other when you’re in and out like a fast food drive-thru?

  2. Joanna says:

    I love this post, Robyn! As patients, we really have to be our own advocate, and I think that means we have to LEARN how to communicate with our doctor. And just as you would prepare for a business meeting, so it is necessary to prepare for a meeting with your doctor. It’s our responsibility to show up at our appointment with a plan of what to discuss.

  3. Elaine says:

    It all comes down to doing our research. You are right we have to communicate. The Graves’ Disease Foundation also has a bulletin out “Questions to ask your doctor”. The list Robyn is going to supply and this article may be of great help to the newbies for sure. I wish i knew what to ask years ago. When I signed up with the doctor I have now I was upfront.

    I told him I have Graves’ Disease and needed a doctor that was willing to work together with me to get me feeling the best I can. He was agreeable. Next I told him I may ask him if certain medicines were right for me, should I eat a certain food, how much exercise ect. I always have a list of questions. A short list, as there is only so much time. We work as a team as we should.

  4. Lori says:

    Poor or lack of good communication is the biggest problem with patient doctor interaction, IMO. As Liz pointed out, they are limited by time because of insurance constrants.

    Another big change over the past several years is that there are less solo practices and more group practices than ever before. I can tell you in a solo practice docs generally see on average 15 to 18 patients in a day versus 28 to 32 patients in a group practice. This makes a huge difference for the doctor and the patient. Group practices put huge pressure on docs to see more patients. Many actually have to meet a quota.

    There is also a shortage of Internists/General Practice physicians and Endocrinologists.

    I feel one thing doctors could do that would help a patient out greatly is to hand out a pamphlet outling how they run their practice, and what they expect from the patient. Things that would make the office visit go as smooth as possible. Info such as how they handle lab/test results, referrals, how long ahead of time to call for refills, what time of day they usually return calls. Basically any information at all on how they run their practice would be a great way to start out a new patient/doctor relationship.

  5. Annacai Autoimmune says:

    I accept the responsibility. In the past, I have clearly been shirking my duty to myself. Those days are over.

  6. amy says:

    What I really like about my(fairly) new Doctor is that she presents me with what is going on and what I, yes I, can do it. She is not my savior and healer. She just diagnoses me and helps me find the best options to better health. She listens to me and I listen to her. It is MY decision to take action. I am glad that I now get that. Hashimotos does not fix itself…a life long healing and learning process with ups and downs.

    Great Job Robyn!!!

  7. Robyn says:

    WOW WOW WOW!!!
    I can’t tell you how excited I am about these responses so far. I thought by now I would have been tarred and feathered!

    I FULLY EMBRACE bitching about our doctors. And I FULLY REALIZE they have to do their part (and that some don’t). But at the end of the day, when our rant is over and the frustration subsides, we need to pull on our big-girl panties and figure out what comes next.

    I had an endo appointment today and “tried on” my checklist. He was behind, he was hurried, but he said he had a minute to talk about related questions, and then asked if we could walk and talk while he copied my labs for me. I was worried this time, as my numbers should be approaching his goal of “average” (TSH 1.5) that he would not increase my meds–but he did and said we could talk more about T3 (armour/cytomel) if I get there number-wise but not feeling-wise.

    But, some of this information needed “teased” out. Not because he’s a bad doctor, but because he’s busy and at 10am was already 30 minutes behind.

    But I did get the information, without being aggressive or unfriendly, and I think others will be able to do the same!

    So, someone out there, disagrees with me–bring it on! I’m checking the forum now!

  8. Lori says:

    Me gaain

    The first and only endo I have seen was an asshole. I had a great attitude. I didn’t have much knowledge yet, but she did not like that I had any knowledge at all. She actually told me the information that I did have was wrong. If that doctor had listened to me and treated me appropriately, I am sure I would have been spared a lot of suffering and probably would not have lost income. I was on levothyroxine by me primary care doctor. It made me nauseous and my hypo symptoms were not improved at all after several months, in fact I felt I was getting worse. She told me the medication could not be the cause. She said I could not be intolerant to any fillers, even though I had a long history of intolerances. She said levothyroxine was a natural drug that matched the hormone that my body was not making enough of so I could not be intolerant. She did tell me that it was possible that my Hashimoto’s might resolve on its own.

    She did nothing for me and explained nothing to me about the type of thyroid disesae I had. I asked her if she would give me a prescription for Levoxyl which is the same drug but a better brand, and she refused. What would have been the harm in trying I asked because I never had the nausea before and it started when I went on the levothyroxine. She got extremely agitated with me and said NO, I told you the drug is not the problem. I asked, what do you thing the problem is then. She wouldn’t answer me and she ended the visit by just saying come back in three months. Now I know why I was able to get an appointment so quickly and the other doctor in that practice it takes 5 to 6 months to get an appointment. I never went back to her.

    This doctor was a complete asshole who you could not talk to at all but out of all my bad experiences with doctors she is the best bad experience I’ve had.

    I went back to my primary care who has knowledge only of T4 drugs but I have gone back to her each time with research to backup what I was asking for and she gave me NDT, her first time ever ordering it, and this week she finally agreed to let me try Cytomel, again her first time ever ordering that drug.

    BTW Robyn, 5 minutes ago I just swallowed my first dose of Cytomel. Actuall I cut it in half just in case I get a reaction. I hope so badly that this helps.

  9. Sophy says:

    Don’t let the doctors off too easily! Going to medical school does not excuse someone from hearing and understanding everyday language.

    Yes, professional study does entail learning the vocabulary of the profession. Those who serve the public, however, hold themselves out as capable of consulting to provide advice. That means listening to the person who has come to consult. It means understanding their situation, their needs and their objectives.

    If the doctor’s first language is different from the patient’s first language, that’s a reason to expect greater difficulty in communication than in normal interactions.

    If, on the other hand, the doctor is flying on automatic and fails to evaluate a description of sensations properly because a particular word hasn’t been used, then that is the fault of the doctor.

    The medical profession has a history of being horrible about listening. Some medical schools and teaching hospitals have recognized this and adjusted their curricula. Others have not, and some doctors don’t need to take even Medical Arrogance 101 to make it clear that the only reason they need to be in the room with the patient to treat the patient is to examine the patient’s body.

    I served as a poverty lawyer for many years. I know from personal experience that listening is crucial to using your professional education to serve those who consult you. I had to listen to clients with respect and with patience in order to serve them well.

    My health is my responsibility, but that doesn’t excuse the medical profession as a whole from its responsibility to continue to work towards listening better. One part of the medical profession’s responsibility is to teach doctors to understand that they are advising patients. Only the patients can decide which risks to take and what advice they can be effective in following when they consider the treatment options a particular doctor considers advisable.

    Finally, doctors are allowed to be human beings and make mistakes. So are patients. When the problem level rises above normal human error, the patient is entitled to complain.

    Whenever I have a problem with someone — medical or other — I nearly always try to solve a problem with the individual in question. Yes, I might grouse to a friend just to let off steam, but before I’d complain to the Better Business Bureau about a store, I’d try to work it out with the store. Still, sometimes a patient has a responsibility to make it a point to complain to a doctor’s supervisor, hospital or even medical licensing board, depending on the severity of the problem.

    You have, however, made a useful and important point.

    Communication is a two way street, and we, as patients, must take charge of our own health care.

    When we are not satisfied, even if it is not bad enough that we should complain to someone in authority, we shouldn’t complain and endure. That sells our lives short. If it’s bad enough for ongoing grousing, it’s bad enough that we should either fix the relationship or find a doctor with whom we can work more effectively to support our health.

    Never keep complaining — find a new doctor!

  10. One problem I see is that doctors aren’t really obliged to update their knowledge. So much progress and change has happened in the last few years with regard to thyroid disease. Many doctors are either unaware of the new TSH levels, believe that TSH alone suffices in order to diagnose someone or are ignorant about Armour Thyroid and think it is risky and inconsistent, although research shows that Levothyroxine can be even more so!

    I also read that doctors find thyroid treatment rather thankful because “you give the patient a pill and they feel so much better almost instantly”. Sadly, that is simply not the reality and if they realised this they might take the disease more seriously in the first place and do more thorough testing.

    Also doctors often lack sensitivity – someone who has thyroid disease is often very sensitive about how they look (after all, it fucks with your entire body), so we don’t want to be told we are overweight or fat – we probably know it already and it certainly doesn’t help for a doctor to point it out. At the end of the day, you’re paying your doctor a lot of money to serve you as a patient and customer – why settle for less if you don’t have to?

    I switched from my original doctor after I repeatedly told her I am still exhausted – my life is too short to feel like crap 24-7 and I hope that my new doctor (whom I found on the German website http://www.schilddruesenspezialisten.de) will be able to help me. At the same time, I know I have to be patient (it’s hard though!) and I have made sure to do my own research. Ultimately, it means my doctor has to explain less and we are more on the same wavelength.

    I try not to be defensive with new doctors as it’s counterproductive, but I also understand that after encountering so many doctors with a horrible bedside manner, it’s hard not to be on your guard.

    I’d like to think every cloud has a silver lining (hard to believe when you are so sick and tired of feeling sick and tired) because this helps me to deal with everything better. Therefore, I try and do at least some research every day and spread the word to friends and family – how many of them we know who are obviously suffering, but undiagnosed or who have actually been sent away by doctors and told that there is nothing the doctor can do for them! On this note, a sad story about my fiancé’s colleague – she was admitted to hospital for constant weight gain (practically screams thyroid problem and indeed that is what she has, but is as yet untreatd) and they fed her nothing but water for a whole week. She still gained weight and the bastards accused her of smuggling in food.

    I was horrified to hear this, but even more horrified to hear that the same thing happened to my sister-in-law’s mother. We need to have the right attitude, but so do the doctors – they have chosen a profession that requires working with people. Compassion and understanding should be the order of the day.

    Finally, for those who don’t already know the link. If you are looking for a new doctor, Mary Shomon’s top docs website has proven to be very useful for me to help members of my family:
    http://www.thyroid-info.com/topdrs/

  11. Shan says:

    I have been trying out doctors since moving here three years ago. Each time, I come away feeling that I know more than them about whatever condition I am seeing them for, feeling that I wasn’t listened to, thinking that they diagnosed me before I had properly explained what was happening, being given inappropriate medication for my symptom, always being sent for x-rays if theres the remotest chance that they might find something. I hate the way they treat me as though I am less intelligent than them or they refer me to the most expensive pathologist when there is another who does it for free. I’ve been operated on unnecessarily by a doctor who was fired for more serious unnecessary operations and the hospital sued. I was even felt up by the same male doctor when no nurse was in the room, he stopped when she entered. Somehow I think doctors think that we should be faithful to one doctor. When visiting another doctor for the first time recently, I got short shift for not going to the previous doctor. I drove miles to another town when nobody here was taking on new patients, he didn’t believe what I was telling him and sent me for neck x’rays! I didn’t go to a doctor when I was mentally losing it with my undiagnosed hashimotos because I didn’t feel I needed the anti-depressants I was sure they would have offered. When I finally realised too late it was my thyroid and asked to be tested, the Dr. didn’t believe me and said it was just the sniffles and she would give me something to dry up my nose. I am overjoyed for those of you who have great doctors who are intelligent, willing to learn, willing to listen and try new approaches. I dream of finding such a doctor. The search continues but not till next time I really need to. I think a lot of doctors get their licence to practice and then stop studying and learning. When you talk to others, they all have horror stories to tell. I am not just being negative. In 2001 I saw a doctor with symptoms of depression and my arms were painful. He said I should take antidepressants and go to the gym. In late 2009 when I was diagnosed and began treatment for my Hashimoto’s the depression lifted, and for the first time in years I could lift my arms above my head without wierd movements and pain. I really do believe that doctors do not have time to listen and care. This makes it difficult to build a relationship of trust in each other. I also believe that there’s an unwritten agreement for doctors not to expose their incompetent colleagues. Its all very complex and it would be interesting to see the cone of silence lifted on the whole industry.

  12. BarbaraRyan says:

    Thanks for the article. I do think that we need to be responsible for ourselves and our own health care. We need to be our own advocates. We need to demand good, quality, compassionate care. And believe we have the right to it.

  13. Lori says:

    Oh Shan, I am so glad to see you. I thought you disappeared and I was worried about you.

    You just spoke for me. I wish I could give you a hug. We would cry the same tears. I’m trying to live in denial about how I really feel about the medical community because of all the mistakes and mistreatments. I’m ashamed to admit what I’ve been through because of how I reacted; I ran away, I couldn’t face the things that happened. You have the strength to tell the truth. I love you for that. I have to go tomorrow and mentally leave my body in order to get through a procedure for my back. Every time I have to let a doctor touch me now I think I will leave reality for good this time.

    I know it’s this disease that leaves me with no strength to deal and my stress hormones are depleted because of the traumas. It’s a fucking living hell, that’s the truth. You are absolutely correct, they go to any length to cover each others ass even when they are miles apart and don’t know each other. Actually, it’s not so much to cover each others ass as it is to not get involved. A hematologist/oncologist who I saw for unrelated shitty blood work explained it to me. He truly was an angel put in my path. If it wasn’t for him being so *honest* with me about the game that these docs were putting me through, I’m sure I’d have gone completely insane and stayed there, or worse.

    You are not being negative. It’s called REALITY, Shan.

  14. Robyn says:

    Ugh. I wrote a whole lengthy reply that was eaten by my work computer.

    Thank you for the replies. Lori, Sophy, and Shan, I am sorry that you received poor treatment. Shan, it sounds like you were seeing multiple docs for multiple things? (In other words, it wasn’t just endos?)

    I do not think we should let doctors off the hook. They are complicit in our care, and also have accountability. But I also think, despite some of your bad experiences that the truly BAD docs are a minority. I know there are docs out there who are jaded, inept, or flat-out don’t care. More frequently, I think there are doctors who are under pressure to see more patients in a day than allow them to be the best doc they can be.

    Not listening IS a problem for doctors–sometimes they already think they know the answer and gloss over, sometimes they hear what they want to hear. And, the same goes for patients. My point is that even if you want to say we are evenly in charge of our care (that is doctor:patient 50/50), it still is our responsibility at the end of the day, because the doctor clocks out, but we LIVE with our health. No one will ever care about you as much as YOU do, and sometimes that means walking away, sometimes that means taking a stand against the doctor, and sometimes that means recognizing your own short comings in your health management.

  15. Robyn says:

    A little personal story from my work life just this past weekend:

    I saw a mid-aged cat after she had ingested the large dog in the household’s medication. A colleague of mine had seen this kitty earlier, and tried to induce vomiting. She explained to the owner that this is hard to do in cats, and could fail (which it did). She then passed a tube and gave the cat a large dose of activated charcoal. This is all standard of care. The owner declined lab work (about $100), and a call to poison control ($65) because she did not have much money. Hours later she came back because the cat did vomit at home, and now was open mouth breathing (BAD!!! in cats), acting sickly, etc. She was in a bad way–low temp (96), panting, heart rate through the roof. We waived the office visit AND the emergency fee frankly because the owner complained that we had not “fixed” it the first time. When I discussed how worried I was, she agreed to blood work and rads ($125). The cat’s lungs were full of fluid and I could not see the heart. The lab work showed me increased liver values, and CK (muscle enzyme). Based on both these results I discussed I was concerned about the liver (frequently damaged by drug over-doses), the lungs, and/or heart. No drug book of the dozen or so listed acute toxic side effects of this drug in cats, so I had no idea where the drug could hurt the cat first (liver or heart), or if the lung fluid was aspiration (pneumonia). I spent 30 minutes on the phone with an internist to discuss the case, and she agreed it was impossible to tell, but that the cat needed intensive care for at least 24 hours while things shook out (which we do not provide). Owner agrees to be referred.

    I discussed every lab value, every result, and discussed the possible scenarios. I discussed why I could not conclusively diagnose the pet, although I had 2 primary and 1 secondary rule outs.

    She arrived at the referral center (the veterinary school from which I graduated 10 years ago and still have many friends) and cussed out my sub-standard care (the cat wound up having aspirated some of the vomit, one of my listed possibilities, and luckily for her, suffered no long term heart or lung damage). She said I clearly didn’t know what I was doing because I could not interpret my expensive tests. She said I must be “inept” (her word) because I had to call someone on the phone “for help”. She said I shoved them out the door because we were closing and I couldn’t be bothered (the time stamp on her discharge was 7:30, we close at 8:00).

    For all I know, she went all over the web talking about shitty, expensive veterinarians. In my mind, I communicated (verbally and via written discharge) all the testing, the results and my concerns. In her mind, I was a money grubbing, stupid bitch.

    Obviously there was a disconnect. I always struggle with these. I am neither inept nor uncaring. I make a decent, but not lavish salary (from which I pay a hefty malpractice insurance fee), unconnected to how much “testing” I recommend. Did she not hear what I was saying because she was worried about her cat and her finances? Did I not explain things to her in a way she could understand? I have no idea. If you ask me, I’d put the problem squarely in her hands. If you ask her, I’m sure she’d do the opposite.

    Where lies the truth?

  16. Lolly says:

    Great article Robyn but here is one person who may disagree with some of the things you have said although you have.

    I agree that it’s a 50/50 thing a two way parterneship so when you see a doctor for what ever reason you need to be prepared maybe writing down some things if need be taking someone with you either to prompt you or to be another listneing ear incase you don;t catch everything that has been said.

    There are good and bad doctors,in the profession it;’s all well and good getting a degree practising medicine, but first thing they should teach them is communication skills bedside manners and most of humility.

    How many patinest have gone undiagnosed or it took years to be dianosed with a thyroid disease sometimes they need to lok outside the box and if someone is showing signs of a diseae and there TSh as we so know thye love to look at that particular test is maybe high normal or low normal yet still in range and that person then is sent home with a bottle of antidepressants it’s so easy to dish out the pills because they aren’t truly listening to the patients thing is there the wrong fucking wrong pills.How many peole have ben tokd they are obese because they eat too much and are lazy.

    I feel Envious of those who have found a good doc who will work with them and is open to ideas, they don’t just go by thyroid levels but also by symptoms and are willing to help that patient get to a better place I think that is what most of us ask of our interns doctors, endofuckingcriminologists.

    My first Endo was a pompous git I am not backward in coming forward and before I had even seen him I had found out as much as my brain w=could retain about my particular disease and one thing I made him promise me He wouldn’t let me go hypo so what does he do over medicate and end up hypo making my eye disease worse. If I knew then what I knew now I would have been advocating for myself back then I put my trust in him, in the end we parted ways and I never saw another endo till last year, he is much younger not old school with old Ideals and know it all you know fuck all attitude, I think he is willing to work with me at least we are able to talk and that is the key to good health, He is open to new ideas but still he is on trial with me I have only seen him twice and with me it’s a trust thing you have to feel the person who is treating you has your best interests at heart.

    I’ve heard too many stories more than you would ever know of miss treatments by endos thing is you know you don’t actually have to be treated by one if you have a good intern or doctor then work with them.

    BTW I have 20+ years of nursing under my belt and worked in a large teaching hospital I have seen good and bad doctors go through the system.

  17. Lolly says:

    Ps Please excuse all my typing errors, it’s late and I was typing 100 miles a fucking in hour so I said everything I felt. I wish we could get an edit here so I could correct them.:>)

  18. Robyn says:

    Lolly, Your comments always welcome, even 100 mph (or should that be kph?).
    I’m not naive to bad doctors. However, at least in the US health care paradigm, even GOOD doctors can end up as “bad” doctors. We need to learn to recognize and avoid the former, and how to effectively work with the latter.
    You can’t change someone, but you can change your reactions to them.
    Not everyone has the “balls” as it were to tell a doc to their face (not even me, and I rehearsed in the car!), so I swallowed hard, said thanks, and got a new doc. Then I told every doc I know about my experience, all of which took him off their referral lists. I also sent a note to the practice office with my concerns, although I’m sure it just went on the pile…
    Of many different diseases, there are few that are so vague that they are difficult to diagnose (thyroid, fibro, chronic fatigue, etc.) and I understand “out of the box” thinking. But you don’t know what you don’t know–I was missed by my “general doc” (for me a family practitioner) because she didn’t know the “new” TSH reference ranges. There was NO REASON for the ENT to misdiagnose, and honestly I think he was embarrased because he was SURE I had a 2 cm nodule, but did not, and then basically was “done” with me.
    So, I moved on.
    There’s more to what I have to say regarding patients and docs–I’ll skewer them too in another submission–so I don’t think you’ll be disappointed Lolly!

  19. Shan says:

    Well I happened to see a new doctor today. Apparently, she will determine my state of health by my blood results and my thyroid gland is probably well destroyed by now, my antibody level will always remain high and I should experience a return to feeling normal when the dose is corrected. I tried to explain that I thought that hashimoto’s was an ongoing thing, but she said that the actual attack on the thyroid gland lasts up to 6 months and then you get right back on track with replacement T4. My brain let me down with coming up with any of the necessary questions as she was leaning in my space and speaking as though telling me off. Though I did ask why my throat would be hurting so much, it was something to do with residual blah blah blah. I would love love love to write a script of how a conversation with a doctor would go. “Tell me some of the symptoms you are experincing that are of concern for you?” “When do you feel most tired?” “Are there any foods that you think make your symptoms worse?” “how do you feel when you get out of bed, are you sleeping well?”
    “When do you feel most energetic?” Even if these questions are totally meaningless and all she cares about are the blood test results, it would help me to gain trust in her if she would just ask me how I am. I got told off for being unfaithful and going to another doctor, even though this young thing was a replacement for the original doctor who had left the practice. Oh and having Hashimoto’s is not a disability that would prevent me from working and no doctor would ever attest to such a silly idea. Just a matter of getting the dose right. She doesn’t know I know a great thyroid community who share our knowledge and concerns. Does anyone know why my neck would hurt so much more when I’m stressed?

  20. natasha says:

    Great post Robyn!
    We do need to be better advocate for ourselves and doctors do need to learn to hear us better. If we can speak the same language then we can work together.
    In modern medicine the one thing that makes me really really really nervous is the uprising of patients who have “done their own” research and march into doctor’s offices proclaiming they have x disease and need x drug. It drives me insane to see tv commercials that say “ask your doctor if x drug is right for you”. Whatever happened to taking with your doctor about your symptoms and how you are feeling and letting their medical expertise make the final assessment about what is wrong and how to treat it? In today’s era of Dr Google (and I am guilty of this too) it is really easy to self-diagnose and feel like we are entitled to a certain cure. We may consult Dr Google but we don’t have years of medical training to see the larger picture or identify a different health issue that Dr Google failed to identify.

  21. Robyn says:

    Shan,
    I assume you are being sarcastic. My doctor said similar things, but used the word “average”. The “average” Hashis thyroid is destroyed in 6-12 months, the “average” person has a TSH of 1.5, the “average” person does well on levothyroxine. Do you think this is what she meant? Am I missing your point?

  22. Robyn says:

    Natasha,
    You brought up a VERY GOOD POINT that I avoided (on purpose) in my article, although it’s on the list when I switch to doctor centered stuff. I personally used Dr. Google and went down the wrong path for a couple months. I had NO IDEA it was thyroid related until a friend (who is an endo) talked to me randomly about it after an exasperated ENT appointment.
    I’m going to try to say this next thing the right way…while I know that many here have been underserved/mistreated by doctors, the doctor still has more knowledge than the average person, even the best researched, well read, intelligent individual. The body is much more complex than one system, and whether it makes it into the conversation or not, there are things the doctor picks up on in the physical or the labs, or whatever, that often guide their judgement and treatment.
    This is not to say that a doctor knows more about YOUR BODY than you do, and second opinions are there for just that reason if something just isn’t right.
    (I hope that came out right–I’m sure someone will call me on it if it didn’t!)

  23. Trish says:

    To all the beautiful people who have a deep relationship with their thyroid:

    What I love most about our community is the passion we show when asked about any aspect of our diagnosis, care, support – anything. We are a passionate group and for that I feel like I’m home.

    I was diagnosed April ’09 with Hurthle Cell Carcinoma. It was found after the total thyroidectomy and since then I’ve burned through endocrinologist as quickly as I go through the tabloid magazines in their waiting room. But it took an “Aha” moment when I realized that they will never care for me as much as I care for me and I should never expect them to. I’m empowered to question anyone, including those in white coats . It’s not a natural instinct for me but one that is quickly perfecting itself.

    The ambiguity of this cancer is maddening but I look to the areas of my life that I wish to grow and know that patience has always eluded me. Not that I think cancer was purposefully put upon me as a lesson but rather as unexpected path to a greater ‘me’.

    Thank you to each of you for your graciousness in the various forums, for opening your lives to help others with their journey and for the countless bits of wisdom I’ve received as a result. Thank you. Thank You. Thank you.

  24. Thanks for this post. I quite agree. Two areas where I take a lot of responsibility in making my doc-patient relationships work better:

    1. Know what I need from the doc. My doc does not have to be therapist, friend, and medical adviser rolled into one. They need to have sharp skills, be the top of their field, read like hell, be heavily invested in research, and be able to listen to me and talk to me well enough to get the job done.

    2. I prepare for my appts. The system is screwed and time is short. The way to change this is for me to get involved in making healthcare policy changes – not by complaining about how little time my doc spends with me. Instead, I go in knowing I have a good 6 minutes of attention. I make a typed out list of question to hand to my doc at the beginning of the appointment. I don’t leave the huge issues till the end when they are walking out the door. Take responsibility for managing your appointments and you will be much happier w/ your doc and yourself!

    Kairol
    http://everythingchangesbook.com/

  25. natasha says:

    Robyn –
    Beautifully stated! Couldn’t have said it better myself!
    You rule!
    🙂
    natasha

  26. Kim says:

    I am a doctor myself (not an endocrinologist), and also a patient with thyroid cancer status post thyroidectomy. I think it’s critical for all patients to understand that a lot of communication issues usually arise b/c there is too little time allotted for the doctor per patient and too much pressure to stay on time, see more patients, be more productive, etc. The most frustrating thing for a doc is to be handed a list of symptoms from the patient that is a page or more long, usually filled with symptoms that are vague. Given that thyroid disease usually DOES cause a myriad of “vague” symptoms (so does fibromyalgia, which I see and treat a lot of), what can be most helpful is narrowing down your symptoms to a top 3-5 that are MOST bothersome. This can help both communication with your doc, and in fact, even help the doc in synthesizing the history and coming up with a suspected diagnosis. The other thing is, “doctor shopping” is frequently viewed negatively by other docs b/c it automatically says up front, this pt didn’t bother to give her previous doc a chance, so why would things be different this time around? Obviously, that is different if you’ve given your previous endocrinologist a good 6-12 months before deciding the “rapport” wasn’t there, and it’s time to move on for a 2nd opinion. Just my 2 cents, being on BOTH sides of the equation.

  27. Suz says:

    Thyroid cancer is a tough one, you need a good endocrinologist you can not expect a doctor to know all you need a specialist.
    It has been a difficult ride for me with a move in the middle , new doctors and new states bring new ways of doing things and more scans.
    Some call it Good Cancer but in my experience there is no good cancer, and everything is relative. You have to advocate for your self and go to http://www.thyca.org, do your home work and do not settle if you are unhappy or unsure of which way to go. I have learned alot about courage, cancer care can also offer free counseling if you feel your mood dipping, they have been there for me when all else has given up. Keep pushing you are worth it!

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