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Tag: mainstream medicine

Thyroid Patient Experiences vs Medical Research: do they jive or not?

Lightning2There was a long time in my life – more than 20 years in fact – that I suffered immensely, in spite of managing to live my life.  I paid hefty prices….and suffered constantly. You can read my story on STTM, and read even more details in the Introduction of the revised Stop the Thyroid Madness book.

Ultimately, science-based, mainstream medicine failed me…and others.

During those 20 years, and more so during the final ten years, I went from doctor to doctor. Thank the good Lord for insurance!! I visited premier medical centers and was subjected to numerous tests and medical procedures. One in particular resulted in a scar on my left bicep that I still carry today – an attempt to see if my extreme fatigue and weakness had an answer in a muscle biopsy.

But I got NO answers, and no relief. There was no pharmacological drug, nor any physical intervention, or a lab result analysis, or any medical diagnosis that changed my misery. I was left to deteriorate on my own. And that pushed me to apply for Social Security Disability. It was only through my own drive in discovering a better treatment I finally got well.

And turns out my experience, both the negative and positive, has similarities with millions of others, to their own degree and kind, as we discovered in patient groups all over the internet.

Reported patient experiences became the gold, NOT medical science

When I started the Natural Thyroid Hormones (NTH) group on Yahoo in 2002, oh did we learn!! (See STTM’s Talk to Others page). It was NOT science that helped us get better. It was learning from each other!! And all of that reported patient experience and wisdom birthed the STTM website, the STTM book, and many more groups. Because we were now getting WELL thanks to all those reported experiences. And others still are getting well–NOT because of “medical science”, but because we have been listening to each other’s experiences and wisdom!

Does “science” support the success we have achieved?  

At first, there was little science to support what we knew to be true by our combined and growing experiences in getting well. And we didn’t care. We were FINALLY getting well!

And as we’ve been getting well, we simply roll our eyes when we occasionally run into a “science snob” who looks down his or her intellectual stuffy nose with ignorant criticism like “It’s nothing more than “anecdotal BS”!!  i.e. you can’t POSSIBLY know what you are talking about if there’s no rigorous scientific analysis, debate, or documentation. 

**crickets chirping**

But it turns out there ARE medical scientific studies which support some of what we already know by our experiences. Many readers of Stop the Thyroid Madness may not have discovered this yet, but STTM has a page which lists medical studies which support what we already know. So take a peek.

On the other side of the coin, how science can be completely flawed

One 1993 scientific study titled “Levothyroxine Therapy in Patients with Thyroid Disease” is one of MANY studies that informed patients came to realize was faulty. The concluding paragraph stated:

With proper patient monitoring, levothyroxine replacement therapy should be effective, inexpensive, and free of complications. Recommendations for thyroid-stimulating hormone suppression with levothyroxine are based on riskbenefit considerations of the biologic characteristics of the thyroid disorder and the individual patient.

Effective? Free of complications? It didn’t take long for a growing body of thyroid patients, who were comparing notes with each other (besides looking back at the experiences of their relatives) to see that this was FAR from the truth for many of us, to our own degree and kind. I started compiling plenty of non-effective results plus complications of being on T4-only medications from the mouths of patients worldwide over the years.

And the longer we’ve been talking to each other, we also discovered that even when some T4-treated patients report good results on these meds at first…or for several years…they were coming into groups to honestly report seeing more and more symptoms of a poor treatment crop up the longer they stayed on their Synthroid or any other T4-only treatment.  It’s not a pretty picture overall.

(And by the way, natural desiccated thyroid is CHEAPER.)

Medical school training is just as much the problem as is flawed science

The Carnegie Foundation did a study about medical schools,  and in a particular paragraph, concluded (italics mine):

Medical training is inflexible, excessively long and not learner centered. They found that clinical education is overly focused on inpatient clinical experience, supervised by clinical faculty who have less and less time to teach and who have ceded much of their teaching responsibilities to residents, and situated in hospitals with marginal capacity to support their teaching mission. They observed poor connections between formal knowledge and experiential learning and inadequate attention to patient populations, systems of health care delivery, and effectiveness. Learners have inadequate opportunities to work with patients over time and to observe the course of illness and recovery; students and residents often poorly understand non-clinical physician roles. The team observed that medical education does not adequately make use of the learning sciences. Finally, time and again the researchers saw that the pace and commercial nature of health care impede the inculcation of fundamental values of the profession.

And sadly, patients will report problems with their doctors long after they attended medical school. Common descriptions include unteachable, clueless, rigid, narrow-minded, arrogant, and/or blind to the “clinical presentation” of their patients clear symptoms of continued hypothyroidism (for example, depression, anxiety, high cholesterol or other fatty acids, rising blood pressure, aches and pain, and so much more!) These same doctors will then bandaid these symptoms with anti-depressants, statins, pain meds, blood pressure meds and more.

But to be clear: patient reports don’t equal that they feel their doctors are purposely trying to do harm! Instead, thyroid patients clarify that even their most well-liked doctors just aren’t listening, or aren’t willing to learn from patient experiences, or feel threatened if a patient wants to guide part of his or her own care, or are condescending, as if a patient couldn’t possibly have a brain of their own about what they need. So patients leave…and search for a doctor much more willing to listen to patient experiences and wisdom.

Bottom line: some of reported patient experiences and science jive to some degree. For the rest, medical research studies need to catch up with the truth of our successful experiences, or continue to look stupid.

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Why I insist we need to fire most of our doctors! i.e. mainstream medicine is keeping us sick!

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

  1. The TSH lab test should ONLY be used to discern pituitary function (NOT to diagnose or treat by)
  2. There are far better labs that need attention.
  3. It’s “where” a lab result falls that counts, not the fact that it comes within a so-called normal range
  4. Natural Desiccated Thyroid changes lives.
  5. Sluggish adrenal function is very real and needs the right treatment.
  6. The patient-to-patient Stop the Thyroid Madness book needs to be in every doctor’s office for reference. Patients really DO know what they are talking about.
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