There was an error in the link to the Survey in yesterday’s October 30th, 2013 blog post titled Thyroid Patients and their Doctors: All the information you need.
Here it is, corrected: http://surveymonkey.com/s/hypothyroid-patients-view-of-doctor
It’s only 5 questions long and will only take a minute of your time. There are important plans for its use. Thank you for participating!
I’m so glad I wasn’t yet into hypothyroidism when I was a child. I had a doctor named Dr. Roach. Yes. Really. And he was quite tall and very serious. Not the kind of guy who should have been a pediatrician. So when my mother took me into the office for my required childhood vaccinations, I was SCARED…TO…DEATH…of him. I would hide behind the chairs as if I could really escape this nightmare. It didn’t work…lol.
So IF I had to see Dr. very-tall-very-serious-Roach for hypothyroidism, I shudder to think how it would have gone. lol.
INEFFECTIVE DOCTORS
As adults, we have somewhat more choices on who we see. And even so, it’s not always an easy issue. Thyroid patients report far too many doctors who they feel are missing the mark in their thyroid disease treatment.
And I get that!! When I was on Synthroid and later Levoxyl and suffering miserably, I remember going to at LEAST 20 doctors over those years, trying desperately to get help for what was debilitating me…and failing!
And boy oh boy, are there some bad memories. One doctor decided to use me for his “experiments” and I was put on a medication which really had nothing to do with what I went in there for. In retrospect, I think he was using me for a medical article he wanted to write, which he did then and still does today.
Another doctor put his foot down in arrogance when I asked if I could please get my potassium, sodium and magnesium tested to see why I was getting blood pressure problems. “That’s not your problem”, he swiftly said. i.e. he came across as “I’m the doctor; you are not. Don’t ask for anything”.
And there were many doctors who, in light of my hypothyroid-caused depression due to being inadequately treated thanks to T4-only, told me I need to see a psychologist or get on anti-depressants. NOT the right answer when natural desiccated thyroid would have ended that depression!
Yes, I finally found a couple of medical professionals who have been wonderful! And that’s because they have started listening to our experiences, and are willing to learn from me, as well.
A better direction
Today, patients have a lot more help and a sense of proactivity in their treatment thanks to the education and support that Stop the Thyroid Madness offers. Here are pages related to doctors that may help:
Bottom line about working with your doctor
Yes, thyroid patients may be disgusted and angry about the lack of good care they’ve received, but it still helps to to interact respectfully and tactfully. And definitely be INFORMED. That will give you the edge and your doctor’s respect in return. If not, move on to much better doctor! Be our OWN best advocate!
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The following is a Guest Blog Post by thyroid patient N.P who is active on the main Stop the Thyroid Madness (STTM) Facebook group.
Hi. My name is N.P. In March of 2012, I started a post on the main STTM Facebook group page with the topic “How many doctors have you fired?”. It not only ended up with over 1000 replies, but most were from exasperated and emotional patients about their terrible experiences with doctors. I even had a few who thought it didn’t belong on Janie’s site. I’m thrilled to be known for that, actually. Anything to entertain. Now…if you want my practical editorial of why my post has gone over the 1,000 comment mark, read on.
After 9 long years of a “wrong diagnosis” followed by wrong treatment strategies and all-too-many doctors, it took a psychiatrist to diagnose my Hashimoto’s condition. After going gluten-free to manage the Hashimoto’s disease, the same psychiatrist was the one who suggested I had Celiac Disease as well. What is wrong with this picture? Why did nine years of doctors never do their jobs??? Why did they let me suffer so?
I went through the various stages of emotion over the years, from being frustrated by mainstream medicine’s poor understanding of my health, to the annoyance of not having answers, to the embarrassment of never having good explanations for my friends and loved ones. And when the only way I got answers was through Amazon, STTM/Janie Bowthorpe, Facebook and my psychiatrist, I had finally reached this familiar stage: cynicism. There’s not much left after that except for throwing in some humor. That’s why I started the post.
I sensed when I started the post that I was representative of many. Clearly, the post struck a nerve with a lot of patients and has been a great outlet for people needing to get their horror stories and frustrations off their chests. For those who are feeling desperate, as I have and still sometimes do, there’s always a place for you on my post.
“Yeah, It’s all wrong man…we shouldn’t even be up here!”
The post was originally meant to give people a humorous way to vent their frustrations over the outrageously inept thyroid care that they’ve received. I quickly saw the fun in having it morph into a vehicle to ridicule all doctors who’ve told their thyroid patients “Your labs are normal.” Yes, I have an ax to grind with mainstream medicine and feel my post is fair game.
Mainstream medicine brought it on themselves by the way they’ve conducted themselves. It’s much like the airlines have done the same with seats that force your knees up to your chin and allow the bald head in the seat in front of you to be in your face. They think it is OK but it is NOT OK. The many posts about the experiences of patients with doctors, and being stranger than fiction, proves my point.
In addition, I felt I was representative of many people who’ve gone through what I did over 9 years and just needed a place to vent and release their years of frustration through a little bit of humor. Can you believe that a doctor with 20+ years of education and training on how to heal people, and who literally holds the patient’s life in their hands, would rely solely on a lab report? Then, they send the patient on their way by saying “there’s nothing else to do — it must be in your head.” They call themselves professionals? For shame. They deserve to be ridiculed.
I’m shocked by the frightening, life-altering treatment recommendations from doctors who’ve stopped trying to heal when they say, “Your labs are normal.” If you haven’t read my latest summary, here’s a few. Incompetent doctors have recommended hysterectomies, ECT , surgeries and one patient was told she should check into an in-patient psych facility. The frighteningly outrageous part of this is that these doctors, who lull us into complacency because of their titles and stature in society are in a place in our lives where they can HARM US!!! And they have harmed many. I certainly feel harmed.
And the Band Plays on……………………..
What I always knew, but would never consciously admit until I started the post, was that the “only in America” pop culture bafoonery we read about in the newspaper also existed in the medical profession. The most intelligent people can also be the most dumb. A doctor tells a patient that “your bones are probably dissolving” or that Natural Desiccated Thyroid was “made by a meat company that went out of business 10 – 15 years ago” or that “since a cause of the depression can’t be found , you might as well get a hysterectomy.” Crazier than fiction.
So, the profession that is supposed to heal us is keeping us sick. Rather than letting one of the most basic laws of humanity (which is to help others) to passionately drive them to use their training and common sense to solve our problems, they would rather dismiss any other proposed treatment strategies that might work and let us stay miserable until someone in an ivory tower tells them to do otherwise.
You’d think I’d be done after the statement above, but it gets worse.
Not only is mainstream medicine keeping us sick, but many doctors are insulting us as they do so. For example, the complexities of thyroid problems and its related conditions cause many patients to gain weight. What do many doctors do? They blame the victim. “It’s your fault you are fat “ is what they mean when they tell you to go to Weight Watchers or to start eating spinach (It’s true, a doc actually said that to a patient). They are thinking that the patient is not educated in how to eat right or just doesn’t have the motivation. I’m one who has heard a variation of this before. Outrageous. The one person you would expect some empathy and compassion from does more harm and their attitude keeps us sick.
Some of you have decided to do something constructive with the problem, and through different initiatives, are demanding of the institutions that oversee thyroid treatment better care. I applaud you for that. Me, I’m the one who will keep insisting on firing doctors until we get well, get their attention, or both.
Fire a bad doctor for me. Add it to my post on the main STTM Facebook page!
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*To read Janie’s 20-year agony thanks to uninformed doctors, read the detailed Introduction in the revised STTM book.
* See a collection of what many misguided doctors have said to patients over the years.
P.S. And thank you to the growing body of doctors who are LISTENING to ten years of patient experience as outlined on the STTM website and with more detail in the STTM book, all which underscores that
IMPRESSIVE GOOD THYROID NEWS!
After a grueling week by the United Kingdom’s General Medical Council (GMC) , it was decided that the UK’s most renowned thyroid practitioner, Dr. Gordon P. Skinner, should have all his restrictions lifted and his Fitness to Practice restored!
On November 11th, 2007, the GMC had decided that the beloved Dr Gordon Skinner was not fit to practice, simply because in 2005, he dared to listen to and dose by a patient’s clinically-presented thyroid symptoms rather than her TSH labwork–the latter which fell in the erroneous normal range. Even more dastardly, felt the GMC, Skinner was going to treat the patient without a referral letter from her GP, and may have failed to contact the GP. Heaven Forbid!!
Says a recent statement from TPA-UK:
The GMC have agreed that Dr Skinner was not acting dangerously in initiating treatment with thyroid hormone replacement for those patients who had normal thyroid function tests but who suffered several symptoms and signs of hypothyroidism. They also agreed that for those patients who did not do well on levothyroxine-only therapy, the use of natural desiccated thyroid extract (i.e. Armour Thyroid) was a safe and effective thyroid hormone replacement that doctors could prescribe, even though it remains unlicensed. This is a precedent – and one that the British Thyroid Association are most definitely very unlikely to be happy with.
There’s something huge to learn from this! It’s called PATIENT POWER, my thyroid friends, and what we must always practice in our fight to get far better treatment. Namely, what impressed the staff of the GMC was the sheer volume of the general public who attended the hearings in support of Dr. Skinner. Additionally, there was a nicely bound volume of over 2000 patient citations in support of him.
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SURVIVING STRESSFUL EVENTS EVEN WITH ADRENAL FATIGUE
Having adrenal fatigue with its low cortisol can be a challenge, even while you are on Hydrocortisone for your treatment (HC). So thyroid and adrenal fatigue patient Robin had to learn the hard way how to do something very stressful and still survive, adrenally. After moving to a new house, she created these excellent tips for dealing with any stressful event and preventing an adrenal meltdown:
PAYING FORWARD WHAT STTM HAS GIVEN YOU!
Janie began a contract with a top-notch publicist to help get the word out to millions about the problems with T4-only, or for those remaining undiagnosed or undertreated due to the TSH lab test (similar to what Dr. Skinner above tried to avoid for one of his patients). She already has interviews scheduled and more gigs are coming.
But this contract won’t last long–it’s just too expensive for Janie alone. So your help is needed to reach more people, and soon.
Go here and read all about it.
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READING THIS VIA THE EMAIL NOTIFICATION?? If you want to comment on anything on a blog post, click on the title of this post, and you’ll be taken right to the actual post. Then scroll down for the Comment square.
As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website. Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS. Again, I will not be mentioning his name. The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!
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In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds. Even the Royalty of Hungary began to go to his practice. Why? Because he had the best outcomes.
When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish, his peers brought him before the medical society and censured him for not adhering to the current practice guidelines.
His crime? Washing his hands before delivering babies. Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action. Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800’s and often fatal.
The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice, but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of current practice guidelines.
It was not until the 1890’s that his methods were fully recognized, even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.
And today, established scientific and medical opinions continue the same ridiculous travesty.
TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal. Yet, Gay, JC et. al., in the Arch Intern Med 2000: 160: 526-534, showed that the TSH range was 0.45-2.5 for 95% of general population.
In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”, Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).
As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:
“I am aware of this idea to lower the reference range for TSH. But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0, we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005, which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.
Thanks, and good luck,
xxx
So there is the problem. Even if TSH alone was used for screening, the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’ are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.
Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.
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From Janie: ABSOLUTELY BRILLIANT! And of course, informed thyroid patients also know another inane current practice guideline–the use of Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.
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FIND THE ABOVE APPALLING??? FIGHT BACK!!! A publicist has been hired to represent Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.