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Flying With Broken Wings: Desperately Seeking Dr. Jekyll

Post Published: 11 July 2010
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Category: Column, Flying With Broken Wings, Thyroid Symptoms and Effects Column
This post currently has 33 responses. Leave a comment

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.

I

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.

II

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.

III

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).”

IV

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.”

V

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!

Love,

Sarah

Resources

Thyroid Doctors Worldwide Database

Mary Shomon’s Top Docs

German Thyroid Patient Resources, including a list of patients’ recommended doctors

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33 Responses to “Flying With Broken Wings: Desperately Seeking Dr. Jekyll

  1. Dawn Sibert says:

    Another excellent article Sarah! My new Integrative NP spent an hour & 20 mins. just cataloging my symptoms & taking a detailed history. She answers ALL my questions, is NEVER condescending & praises me for learning enough to ask the questions I ask. Her whole staff is just as validating & supportive. I never even dreamed of health care like this!!! The nurses in the practice are my Facebook friends, have given me their cell #s & email addresses & are ALWAYS willing to answer my questions. It still astounds me to receive such patient-oriented care.
    Keep up the great work Sarah!!!!

  2. Shan McKenzie says:

    I have no good doctor stories.

  3. Sarah Downing says:

    Thank you, Dawn. I’m so happy to hear that you have such a great NP who really seems to be doing a thorough job. Have you considered adding her to the DT database? Do you feel like you are making good progress with your health thanks to your great team?

    Love,

    Sarah

  4. Sarah Downing says:

    I am so sorry to hear this, Shan. When I wrote this column, I realised that there are many DT members out there who – like you – haven’t any good doctors experiences to share. Part of my aim of this column is to inspire others and give them hope that they may one day meet the right doctor even if they haven’t yet found him/her. I also want to give them the resources to do so. To this end, I’m encouraging people to share their good doctors with the rest of the community by adding them to our list of patients’ recommended doctors. If you are looking for a new doctor, please let me know and we can announce it on DT and try and find you a recommendation. I am well aware that there are people reading this who won’t be able to identify with the good doctor stories, but – as I said above – I feel that it is vital to talk about both good doctors and bad doctors. I feel that we may appear biased if we never talk about our good doctor experiences and I think that by talking about both sides, this makes us seem more credible as a community.

    Please let me know if there is anything we can do for you at all. I wish there were more patients with good doctor stories because I get the feeling that those with good doctor stories may well be in the minority, but I was pleasantly surprised to see how many people did contribute to this article, so I do believe there is hope.

    Love,

    Sarah

  5. Dawn Sibert says:

    I’d LOVE to add my awesome Dr. to the DT database, not sure how to do so.
    I AM making progress, just more slowly than I’d like, but I was in pretty bad shape at my 1st visit a little over a month ago. I’d spent yrs. with untreated PCOS & Hashi’s, my symptoms go back to my teens. I was also severely anemic, my ferritin was a 4. And had an acute Epstein Barr infection. So it can’t happen fast enough for me, but I’ve improved SO MUCH in a month!

    Took my labs to my GP last week, had to see her for a referral for an ingrown toenail. She didn’t know what my PTO antibodies were! She could see that having a 600 in a normal range of 0-34 was really high, but so could I..lol!Of course, this is the one who called my swollen, painful thyroid a FAT ROLL!!!

  6. Hey Dawn,

    No worries. Why don’t you send your doctor’s info to me (sarah@dearthyroid.org) and I’ll forward it to Katie who can then add it.

    I know how frustrating it can be when you are waiting to get well. I think it’s always slower than we would like. Like you, I have PCOS and Hashi’s and I also had acute Epstein-Barr. You write had – does that mean you don’t have it anymore? How did you manage to get rid of it? I had to go on months of antivirals, but I’d love to hear your story as I know how tough it is to tackle EBV.

    I am very glad that you have found an awesome doctor you are happy with. Let me know if there is ever any way I can help you or if you ever have any questions. I know how daunting it can be to be newly diagnosed.

    BTW, part of one of my upcoming articles is going to be on newly diagnosed patients. Let me know if you fancy contributing!

    Love,

    Sarah

  7. Jen says:

    What a good article. I like the comparison of finding a good doc to dating…That’s really what it is like! I just fear that on the day I find a doctor who cares enough to say, “Well, how do you FEEL?”, I’ll just burst into tears of joy!

  8. Thank you very much, Jen. I also loved that comparison. The lady who made it is a very good writer herself and really has a way with words. I hope you find your good doctor really, really soon? Is there any way we can help you?

    Love,

    Sarah

  9. Caroline says:

    Its not just Doctors or the GMC/Medsafe/Pharmac or pharmaceutical companies but labratory assistants that are controlling our health.Here in New Zealand we had a thyroid drug scandal (as many people will know)and our one and only levothyroxine was reformulated..70,000 people had been on that drug prior to that reformulation for many years,myself included for 16 years..during that reformulation period(2007-2008 approximately) we were treated disparagingly by our physicians,many were told they were neurotic malingering hypochondriacs..myself included..during that time we were offered placebos like Prozac,amitriptyline..some were given cholesterol lowering and epilepsy drugs etc etc.the worst problem was the loss of faith and confidence in the medical system that was there to protect us.
    During that process we discovered there were a few good doctors and word got around in a small country and a network was set up.
    After the 6 demeaning and demoralising doctors one of whom reduced my thyroid medication a couple of weeks earlier and my TSH went from 12 to 19, my first port of call was a doctor who practiced about an hour from where I lived and was an Intergrative MD who had also studied ayurvedic medicine,naturopathy,kinesiology and many other weird and wonderful things I had never heard of.Her speciality was allergies..She questioned and we talked and talked she listed and tapped away at her computer continually.She tested me for Glandular fever,mercury,lead cadmium plus numerous other problems like gall bladder,heart cholesterol..all of which came back positive..and she prescribed Natural whole thyroid to start off with…this was the beginning but not the end..I trotted off to my local laboratory to get a huge string of tests done and was astounded that the lab technician mentioned to me that they were trying prevent my new doctor from requesting so many tests unnecessarily..I retorted to her that they were necessary.I also requested copies which she objected too..So you see Doctors are controlled also by the overzealous laboratory assistants..as it happened she had to eat her words as many tests came back with comments like subject to high cardiovascular risk etc etc
    The pressure brought to bear on this Doctor was intense and she subsequently had to say that she would reduce my thyroid meds or risk getting struck off.
    No way ho-see was i going to reduce my newly found health so she recommended another doctor who specialised in thyroid disease who was able to prescribe the level of thyroid meds to keep me healthy..I now am fortunate to have two wonderful GPs who between them are prepared to stand up to the Lab technicians spies…my thyroid specialist does not bother with the TSH as she says “they just write stupid things on the form..”..and aint that the truth.
    The final part of this story is that I made a complaint to the manager of the laboratory and to my local MP and to the Minister of Health..there was a review into this situation but strangely the assistant was on holiday overseas and the manager staunchly protected his assistant..on return from her holiday she denied ever saying any such thing and it was her word against mine…Typical…but as you can see it is not just the doctors fault they live in fear of the over zealous lab

  10. Lolly says:

    Sarah,

    Great article I wish I could find that great doctor who would take care of my thyroid condition but havnelt found one yet but I haven’t totally given up.

    I feel envious of all those people who say they have a great doctor why the fuck can’t I find that one.

    All these lists for great doctors how many lists are there in the UK for great Endo’s that aren’t in private health care.

    I’m not saying I haven’t had good doctors in the past understanding willing to work with you but as for endo’s I can’t say I have found a keeper yet nor a GP who understands Graves disease or thyroid levels yet.

    If you find a keeper don’t let them go.

    Thank you Sarah another great installment from you.

    Lollyxoxo

    Lolly

  11. Thanks, Sarah, for writing this great article!! Good doctors do exist and they need to be celebrated!

  12. Melissa Travis says:

    This is a FABULOUS list of qualities! I’m especially appreciative of this one– “A good doctor listens to how you are feeling rather than stringently adhering to blood tests.”

    I REALLY like it when doctors LISTEN to me. I truly want them to ask and HEAR how I feel. And more importantly– REALLY CONSIDER that a CONDITION(s) might be responsible for what is happening inside my body (and mind).

    I just read a book about how doctors shy away from finding what are called, “zebras” — and that is why so many do NOT diagnose complex things.

    Meanwhile — I’m SHOCKED that people could be so ignorant about diseases at a conference… but in my world many people in Big Pharma are so interested in making money they do not care about EDUCATING themselves and doctors. In an IDEAL circumstance – EDUCATION would happen at all levels (and then the sales pitch)… then doctors could feel better about the mediations they chose– and patients could truly FEEL better.

    GREAT COLUMN. You’ll be missed the next few whilst you’re gone!
    xx
    Melissa

  13. WC says:

    My endo was a nightmare when I had Hashimoto’s hypothyroid. I literally yelled at him out of frustration once. I later found myself being treated by the fellow…who turned out to be able to treat my Hashimoto’s. Of course, she went into cash-only private practice.

    Later I had thyroid cancer and the same endo who did such a terrible job with my Hashimoto’s was absolutely awesome with the thyroid cancer.

    I have many theories…

  14. Hey Caroline,

    Thanks so much for sharing your story. I have talked about lab assistant in a past article (I believe it is actually the one I linked to), but I didn’t mention them in this article because I didn’t want to write to much about negative doctors as this instalment is supposed to be about positive doctors.

    However, it is good that you brought this up as it is important for people to be aware of! I think this is something that happens a lot in the UK too. I have heard that doctors order cetain tests and the labs refuse to carry them out as they deem them unnecessary. One of these is free T3.

    I did not know about the thyroid drug scandal in NZ, but it is absolutely disgusting how you were treated! Too often doctors fob thyroid patients off by saying they are mentally ill. Well, frankly it’s enough to make you mentally ill when you have to hear such BS from people who don’t do the proper tests and listen to the symptoms. Luckily, though, there are the good ones out there who do listen, such as those mentioned in my article and the ones you mention. Is it as hard to find a good thyroid doctor in NZ as it is in the UK? I’m very glad this network was set up back then as it was obviously very vital in order to help my patients get well.

    It sounds like you found a really good integrative MD who did all the right tests. A good thyroid doc recognises how much damage thyroid disease can potentially causes and proactively tests for potential risk factors. I also had Epstein-Barr (it seems very commmon among thyroid patients due to our weakened immune systems). For a while I also had high triglycerides (this and high cholesterol also being very common) and my doc found another common symptom: gallstones. They were so small though that he wasn’t really worried and was of the opinion that they would go away with the thyroid meds.

    That’s so sad that such a great doctor was faced with so much pressure and I can’t believe how ridiculous pompous these lab assistants were being – last time I checked, they didn’t have all the knowledge a doctor does or they might as well be treating you!

    It’s fabulous that you subsequently found two wonderful GPs who were able to prescribe you the meds you needed. Frankly, I tend to agree with TSH – was there ever a more useless and inaccurate thyroid test invented? Particularly as so many have “normal” TSHS and are still sick and then there are the issues with the lack of uniformity of the acceptable ranges …

    Thank you again for sharing your story. It was very interesting to read and I think it shows that there is hope that patients can get there in the end and, despite experiences with many bad doctors, they may well also find a good doctor.

    Love,

    Sarah

  15. Hey Lolly,

    Thanks for your comments. Glad you liked the article. I also wish you could find the right doctor, but I’m glad you haven’t given up yet. I know how horribly tough it is in the UK. I really want to make things change.

    I can understand why you would feel envious. I consider myself incredibly lucky to have found a “white elephant” German doctor who is actually prepared to prescibe NDT, considering what I wrote above about how well-known/regarded it is in Germany.

    I wonder why many UK thyroid docs are so appalling. I can’t help thinking that it is for budgetary reasons. The government/NHS doesn’t have the money to provide them with proper/ongoing training and they also have huge limitations in terms of the number of tests they are allowed to do.

    I’m hoping that you do find a good doctor really soon. You are right: we do need more recommendations from UK patients … Keep us posted!

    Love,

    Sarah

  16. Hey Joanna,

    Thanks for your support. I think it gives us hope to know that good doctors do exist and that one day even we might find the right one.

    Love,

    Sarah

  17. Hey Melissa,

    Thank you for your kind comments. I think it’s vital for a doctor to ask you how you are feeling. In my interview with Dr T, he couldn’t stop stressing how much he bases his treatment on symptoms rather than blood tests. Besides which, a simple “how are you?” shows that the doctor actually cares.

    I also think it’s vital for a doctor to look for the cause of symptoms rather than treat the symptoms individually, which is something that too many doctors do when it comes to thyroid disease and then it remains undiagnosed.

    I was also shocked about the ignorance at the conference, but I totally get your point about merely focussing on money. That is so true with a lot of pharma companies, I suspect.

    Thanks for your kind words about missing me:-). I’m going to recharge my batteries, but I’ve got so many ideas for other columns, which I look forward to writing. I love your column too!

    Love,

    Sarah

  18. Thank you very much for sharing your story, WC. That is very interesting that your endo was crap at one thing, but good at something related to it. Do you currently have a good doctor? I hope so! Let me know if you are looking for one or need any tips!

    Love,

    Sarah

  19. Cynthia Ortega says:

    Excellent article as always! It makes sense that doctors should continue to keep learning. My current doctor blames everything on either my depression or says oh its because your body is attacking itself. So glad I will be seeing a new doctor in a few months!

    Love,
    Cynthia

  20. Marta says:

    I absolutely agree with the comments that good doctors always continue learning and are abreast of new developments in medicine. I found my doctor on http://www.abetterfeelingyou.com website. It lists docs who are familiar with bioidentical hormone replacement therapy, and are not blinded by big pharma. Check them out.

  21. Hey Cynthia, I know about your current crappy doctor and that’s why I am so glad that you will be able to see a new doctor very soon! The depression could very well be hormone/thyroid-related, as I’m sure you know. From what I know of your symptoms, I very much suspect that your thryoid isn’t as balanced as it needs to be. Thanks as ever for commenting and for your support!

    Love,

    S

  22. Sarah Downing says:

    Hey Marta, thanks for the tip with the website. How did you find out about it? Glad you have found a good doctor. Where is he/she based?

    Love,

    Sarah

  23. HDinOregon says:

    Sarah,
    Great article! Good read.

    — I hope you will fire off a little letter to the head of the pharma company that sent such incompetent reps to their conferences.

    — The “Gods in White” is really a problem in Germany. I think it is an inbred thing with the Teutons to have to obey commands by a “head man” (didn’t want to use the word “Führer”). Often, even when the Germans get “bad” medical help, they are afraid to assert themselves, or to change doctors. Misguided loyalty, if you ask me.

    — Good doctors – as you already said – are always good listeners. And to me that seems to be one of the really important traits to have. An expert in their field that cannot communicate with their patients, is not effective or helpful.

    Thanks for sharing your thoughts with this great write-up!!

    HD in Oregon

  24. Sarah Downing says:

    Thank you for your comments, HD,

    As for writing a letter to the pharma company, I am in two minds about this. It was my first thought too, but every time I make a damn complaint here, it is so disheartening because most of the time people just respond in a rude and silly manner. Take yesterday, for instance, when I complained to our rental administration that the air has been repeatedly let out of my bike and my air valve was actually stolen – their response? Nothing, bloody nothing. They were even reluctant to write a freaking note and post it in the bike shed, telling people not to tamper with other people’s bikes. I often find it extremely disheartening here that everybody seems to wash their hands of responsibility, but it’s good you reminded me: I probably should write that bloody letter, even if I don’t want to because I know I’ll almost certainly be very disappointed by their response. It’s not like the US where you can sometimes actually complain and people usually do something about it. Nevertheless, one of my arguments to the rental administration yesterday was that if you do nothing, nothing will change (I do think a note will help, but they should at least try!), so I suppose I should at least try, too.

    I know what you mean about using the word Führer, even though all it means is leader, but obviously it now has negative connotations. It is misguided loyalty, but I think many Germans are simply afraid to disobey someone whom they think is superior to them. I think they need to start thinking of their doctors as partners. I am sick of the way some of the medical profession here are so patronising and unfriendly – even at the bloody conference. I mean, who the hell do they think they are?

    Communication is important. A doctor needs to actually deign to answer questions and realise that some patients might actually know what they are talking about. Luckily, there are many doctors who do.

    Love,

    Sarah

  25. Sarah Downing says:

    HD,

    Your comment just made me give myself a kick up the ass and so I just sent the pharma company a letter of complaint. I suppose the other thing that was putting me off is that I knew I’d have to write it in German. Then again, I had to write a German email about Epstein-Barr yesterday, so it could be worse.

    Love,

    S

  26. Amanda says:

    Sarah,
    Great article. I don’t have any good endo stories to share yet, but my GP is very compassionate and caring. She feels kind of like a really good Mom. Sometimes that makes things better in itself.

    Amanda

  27. Sarah Downing says:

    Thanks, Amanda. I am very happy to hear that you have a compassionate and caring GP. She sounds lovely. It does really help when the person treating you has a really nice manner like that. I hope that you meet mre and more doctors like that.

    Love,

    Sarah

  28. Nicole Wells says:

    Hi Sarah,

    Thank you so much for writing this! I have my own problems trying to identify WHAT makes a great doc since I always go into the experience relying on them to make great decisions. I suppose being raised to respect an authority on a subject had made me a little too trusting in the beginning, but now after all my experiences…I’m almost TOO jaded and not willing to trust most docs. I need to find a happy medium. Thanks again for this, and I love how much time and care you put into research for your column!

    Heart,

    Nicole

  29. Sarah Downing says:

    Hey Nicole,

    Happy to oblige – I felt it was a column that needed to be written, particularly in order to give good doctors the praise they so rightly deserve. I think a lot of us are brought up to trust our doctors as authorities (particularly here in Germany), but as you said a happy medium is vital in order to get the best possible treatment. I understand that jaded feeling too, but knowing that there are good doctors out there restores my belief in them. Of course, I am very lucky to have found a good doctor and moreover one who is a 10-minute walk – that’s what I call providence. A good friend on DT also had her first appointment with him recently and is very hopeful that her condition is finally going to improve. From what she tells me, her previous doctor was awful, which is why I suggested she go see mine. This column didn’t take too long to write as it wasn’t as research-intensive as some of the others, but I have to say a huge thank you to everyone on DT who was so generous to share their experiences with me. I like to give it that personal touch by interviewing people every now and again.

    Heart right back!

    Love,

    Sarah

  30. Sarah Downing says:

    I wanted to update you all on something I wrote in this article – here’s the relevant paragraph:

    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.

    As a result of the misinformation of this pharma rep, I decided to write to the pharma company and complain. I really wasn’t expecting an answer at all and if I received one, I didn’t think they would take me seriously. However, today I received the following letter (I’m translating from German) from the Director Business Unit Endocrinology, Fertility and Primary Care and the Head of Communications:

    Dr Ms Downing,

    Thank you very much for the information. We regret the incident and can assure you that we will immediately refresh the training of this particular employee.

    Please know that this is an exception. For XXX (company name), training and learning is an important part of our corporate culture and we will therefore together explore how we can in future close such gaps in knowledge.

    Best regards,

    I have to say that I was quite encouraged by the letter and really did feel like my complaint was being taken seriously, so I wanted to pass this on so that you know that at times it may actually be worth speaking out even when you think it might not affect anything.

    Love,

    Sarah

  31. Melissa says:

    You go Sarah re: your complaint. I have no problem being he squeaky wheel. It still sucks that in these modern times great thyroid care remains inconsistent. Thank you so much for your time and invaluable info once again. You are such a Thy-eroinne 🙂

  32. Sarah Downing says:

    Thanks very much, Melissa. I really didn’t think that my complaint would do a blind bit of difference, but it seems that it did. Corey was particularly impressed that it was signed by the head of the business unit – apparently when they say something, it’s going to happen, so maybe this lady really will get retrained!

    Thanks for reading and all your support!

    Love,

    S

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