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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.
24 replies

Taken off Armour; put on T4–heartwrenching! And young Australian’s plea

STTM emails

(This page was updated in July 2015! Enjoy!!)

I get a lot of emails, and some are quite heart-wrenching. And though I can’t get into email advice and still have time to do what I do, I so appreciate reading what I get.

Here is one from a gal who, after ten successful years of Natural Desiccated Thyroid, was put on Synthroid and went totally downhill! Mental health issues like bi-polar, excess weight gain and more. THIS is why patients have to become knowledgeable (which is what Stop the Thyroid Madness gives you), instead of putting all your eggs in the doctor’s basket. And yes, she agreed to let me post this.

Hi Janie,

I just found your website and I’m going to order some copies of your revised STTM book. I’m nearly forty-eight years old. I was diagnosed with hypothyroidism in 1985 shortly after the birth of my first son. My doctor put me on Armour, and for ten years I was fine. When my doctor retired, I transferred my medical records to his son’s newly opened practice. His son took me off of Armour and put me on Levothyroxine, although I was having no problems, because he said it’s “better”. He basically used the same wording you quote on your website, “Armour is ‘unreliable’, ‘inconsistent’, ‘dangerous’, ‘outdated’…”. Naively, I trusted him.

Since starting Levothyroxine and subsequently, the brand-name Synthroid, I have been diagnosed with the following:

– Morbid obesity (I have gained 100+ pounds in 15 years with no prior history)
– Menstrual problems (heavy, prolonged, painful periods)
– Uterine fibroids
– Bipolar Disorder
– Generalized Anxiety Disorder
– Sleep Apnea
– Posterior Tibial Tendonitis (plantar fascitis)
– Osteoarthritis

I was beginning to believe that I have fibromyalgia and chronic fatigue syndrome!

Without going into a lot more detail, I’m taking nine prescriptions for these health problems. Now I realize that most, if not all, of these “health problems” are actually symptoms of improperly-treated hypothyroidism.

All I can say is, THANK GOD FOR YOUR WEBSITE! I’m going to talk to my doctor and take a copy of your revised STTM book with me. I’m going to make him listen to me. If he won’t cooperate, I will transfer my medical records elsewhere. If I can’t get any satisfaction from any other doctor in my area, I’m going to take matters into my own hands with the help of your book and website. I talked to my psychiatrist today (to get refills for my meds) about my suspicions — he told me that he believes I could be correct (hmmm — that in itself is quite disturbing).

God bless you Janie — I will remain a “fan” forever and I promise to send you additional follow-up information.

And here’s another one from a 24 year old in Australia who badly needed what STTM gives her:

Thank You! As a person who was diagnosed with hypothyroidism when I was sixteen, I’ve been through the works. I used to be a dancer, singer and a gymnast. All of that has gone by the by, and I am now plagued with debilitating bone problems and white hairs. I have been so confused. Then I was angry. Then I was just depressed. I’m twenty-four. I was sitting around, waiting to die. Then I came across your website. I want to say thank you. Thank you so much for being angry and doing something about it. I can never do anything about my condition. I live in Australia, with one, stupid incompetent doctor at my disposal, which I get in to see every few months at the most. I’m poor, and I have never had a medical practitioner listen to me. So I want to say, please, on my behalf, continue to do what you’re doing. Please keep campaigning. So that one day people won’t have to suffer from this debilitating disease.

Sometimes being an Activist for the truth of better thyroid treatment is stressful. But emails like the above are what keep me going! So thank you to these two gals for communicating with me and agreeing to let others to see what I get to see. It’s all from their hearts.

Namaste Janie

* LAUGHING GRAPE PUBLISHING HAS A NEW FACE (in 2012) and a new book (in 2015). Check them out here: //www.laughinggrapepublishing.com

* Join the STTM Facebook page for tips and inspiration: https://www.facebook.com/StoptheThyroidMadness

 

5 replies

Who has the vision and courage of Dr. Lowe…and a message from Acella about delays

Each day, when I think about the passing of Dr. Lowe (which you can read about here), I reel in shock at this huge loss in our fight for better thyroid treatment and SANITY.

And now we have to ask: who will fill those shoes when it comes to the continuation of thyroidscience.org and the courageous message of Dr. Lowe?? Even the front page contains an important article  titled “TSH is Not the Answer,” a report Dr. Carol Rowsemitt and Dr. Thomas Najarian: Their explanation and verification  i.e. Dr. Lowe fought for what PATIENTS ALREADY KNOW TO BE TRUE about the lousy TSH lab test!

And Lowe announced that he was next coming out with an article concerning ” false statements of fact online about T3-containing thyroid products including Armour Thyroid” by The British Thyroid Association and UK Royal College of Physicians.  He continued: ” The scientific facts patently show the falsehood of the two organizations’ statements. Is this a failure of responsibility to study scientific issues before making public pronouncements on them? Or do the statements constitute science fraud?”    Unless it was already written, we might never see this article. But we all know the truth.

The loss of Dr. Lowe propels me to ask: Who do YOU see as a medical professional who has the following qualities:

  • high intelligence
  • an interest in true science rather than blindly following research with outcomes based on who paid for certain studies
  • the courage to speak the truth, even if it goes against the grain of staid medical opinion
  • compassion for thyroid patients and the willingness to listen to their experiences

Who, as a medical professional, can patients give a vote of confidence to as someone who can continue the legacy of Dr. Lowe?  Propose some names by commenting on this blog post below. (If you are reading this via the Email Notification, click on the title of this post, which will bring you directly to the blog post where you can leave a comment).

A MESSAGE FROM ELLEN GETTENBERG of ACELLA (THE MAKERS OF GENERIC DESICCATED THYROID CALLED N.P. THYROID)

Over the past several weeks, Acella has experienced production planning issues associated with NP Thyroid.  We sincerely apologize for this and want to inform our valued customers that we are putting measures in place now to prevent any further limited supply.  We anticipate improved availability by the end of January.  Please check back here on our website for further updates.  If you need additional information, please email us through the “Contact Us” page on NPThyroid.com.

Ellen Gettenberg
Director, Marketing| Acella Pharmaceuticals
9005 Westside Parkway | Alpharetta, GA 30009
www.acellapharma.com

WANT TO PAY IT FORWARD AS TO WHAT STTM HAS GIVEN YOU?

Out of my own savings last Fall, I paid for three months in hiring a publicist for the message of Stop the Thyroid Madness…i.e. through the end of December. My goal is to reach far more who may not understand WHY they have problems thanks to the lousy TSH lab test or T4-only meds like Synthroid, Levothyroxine, etc. And she has done a fabulous job in getting interviews and articles out there–you can see what she has done on the donation page mentioned below.

After December, patients donations completely paid for January. Now we are working on February, and nearly half way there. But this will end sooner than later if more donations don’t come in. Go here to read about it and Pay It Forward.

HAVE YOU CONSIDERED YOU MAY NOT NEED HC TO HEAL YOUR ADRENALS? OR IF ON HC, YOU CAN DO THIS A LOT FASTER?

UK thyroid and adrenal patient Paul Robinson made a VERY interesting discovery–that he could heal his adrenals with his unique use of T3. Yup, and he SUCCEEDED. And it’s quite exciting news for adrenal fatigue patients.  Additionally, if you are on T3, his  T3 titration process alone is vastly superior to most other recommendations in the use of T3, and means you can use less!!

Take the time to find out for yourself!!  There’s a good summary of what he discovered in the new STTM Facebook Adrenals group (and please note this group is for PATIENTS ONLY, not medical professionals. And for approval to the group, you canNOT have a hidden info and friends. We have to be this way to keep out spammers, and to see that you are who you say you are).  You can also order his book from this Recommended books page on STTM. To order the patient-to-patient STTM book, go here.

 

23 replies

The pitiful challenges even a Good Doctor faces….ignorance, stupidity, resistance. Read this!

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease–Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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10 replies

One more kooky & hilarious video! Plus more about bipolar, pregnancy, mistakes patients make.

HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

  1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
  2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.
Remember: Stop the Thyroid Madness, aka STTM,  is a patient-to-patient informational site meant to educate and inspire you with that information. Talk to your doctor about what you have learned; use the STTM revised book right in the office, and push for what you believe in, and you can go a long way to feeling MUCH better.
3 replies