Mary Shomon Archives - Stop The Thyroid Madness Skip to content

Tag: Mary Shomon

The Scandal: Thyroid Patients are Speaking Out, Wall Street Journal, and a new video!

STTM photos of people from video UPDATEDThe push continues, fellow thyroid patients.  And it’s getting louder and more widespread.

This week, Wall Street Journal columnist Melinda Beck, who writes a weekly health column, hit an important gong with her wonderful attention-getting article titled “Doctors Hear Patients’ Calls for New Approaches to Hypothyroidism.”  

“Doctors and patients have been at each other’s throats for decades over how to treat a little gland in the neck–and patients may be gaining ground.” ~Melinda Beck

Beck underscored the sad reality that doctors have been relying “on a single form of treatment for hypothyroidism”, aka T4-only like Levothyroxine or Synthroid.  And it’s been travesty.

Why T4-only as a sole treatment is a scandal

As I explained in detail in the revised Stop the Thyroid Madness (STTM) book, a healthy thyroid produces five hormones: T4, T3, T2, T1 and calcitonin, with T4 being the storage hormone, and T3 being the powerhouse of all the thyroid hormones. In that healthy thyroid, T4 will convert to T3, but the gland also produces “direct” T3.  That is an important distinction.

Yet this “single form of treatment” with simply a storage hormone, which was thrust upon thyroid patients by 1960 (see Chapter 1 in the revised STTM book for excellent historical details), has forced us all to live for conversion alone…and hundreds of millions of us over the past five decades have a paid a hefty price. There are simply too many reasons why the conversion of T4 to T3 can be impaired, ranging from genetic factors, to diet, to stress, to illness, to age.

That is exactly what compelled me, in 2002, to start what is now the largest active thyroid group still on Yahoo, and later, the largest “system of thyroid groups” on Facebook, called the FTPO (For Thyroid Patients Only) groups–the only system of patient groups endorsed by Stop the Thyroid Madness.

How patients are dismissed

In addition to quoting a few doctors, Beck interviewed thyroid patient/advocate Mary Shomon, who stated “It’s so much easier to tell a woman to get up off the couch or hand her a prescription for antidepressants.” Also interviewed was thyroid patient/advocate Dana Trentini, who feels her second pregnancy ended in miscarriage due to only being dosed by the TSH, which in her case was left high–another hefty problem in the treatment of thyroid patients.

Major kudos to Antonio Bianco, president of the American Thyroid Association

When the American Thyroid Association (ATA) has been the height of disappointment for informed thyroid patients with it’s strong emphasis on “synthetic thyroxine” as well as its poor details about NDT, it was extremely refreshing to see him quoted as stating: “I credit this to patients pushing doctors and saying, ‘You don’t know what you’re talking about. I don’t feel fine’.” followed by Beck’s words that Bianco ‘has refocused the research to search for answers for such patients’. You give us a light of hope, Dr. Bianco.

Seven areas that patients beseech their practitioners to be wiser about…

1. Levothyroxine, Synthroid and all other T4-only medications

They have failed far too many of us. It’s not about exercising more, eating less, seeing a therapist or putting us on a myriad of other medications to treat conditions which are actually the results of that failure. Learn from us.

2. Natural Desiccated Thyroid (NDT)

What has been vividly changing lives is Natural Desiccated Thyroid (NDT), not T4-only medications. NDT has been around since the 1890’s–it worked then and it works now. Learn from us.

And to the contrary, NDT’s T4 to T3 ratio of 80/20 (as compared to the human ratio of 93/7) has not been a problem for the vast majority. Instead, problems are usually “revealed” on NDT due to a cortisol issue and/or low iron–both common problems that arise with patients who have been put on T4-only, or who have been left undiagnosed.

3. The TSH lab test

The TSH lab test is and has been as much a failure for thyroid patients as has T4-only. To be held hostage to a “pituitary hormone” has been a complete **nightmare** for thyroid patients. Even one of your own esteemed colleagues, Jeffrey Dach MD, as well as many others, know the travesty of the TSH as explained in chapter 4 of the practitioner-written book Stop the Thyroid Madness II.  Learn from us.

4. Lab tests that count, and how to read them

It’s the free T3 and free T4 lab tests which have been superior for either diagnosis or dosing, not the TSH. And a key observation noted by informed thyroid patients is “where” a result falls in the so-called “normal” range that has meaning. Many key lab tests have helped us in our journey towards feeling wonderful again. Learn from us. 

5. Symptoms that go along with hypothyroidism

To the contrary, there are clear symptoms that go along with the right lab tests to reveal hypothyroidism. Depression is overtly common in an undiagnosed or poorly treated hypothyroid state, as is afternoon fatigue, poor stamina, dry skin, hair loss, rising cholesterol, rising blood pressure, painful joints, and/or others. How do we know as informed patients? Because they go away when optimally treated on Natural Desiccated Thyroid. Learn from us. 

6. T3 added to T4

Adding T3 to T4 has proven to also be far superior to T4-only, and to the contrary, it has NOT been “difficult to sustain therapeutic levels” if practitioners will simply learn from their patients how to use T3-only with T4. The same goes for the even more superior Natural Desiccated Thyroid. Learn from us.

7. Listening to your patients instead of dismissing them

Finally and most importantly, though we appreciate the intense medical training that all our doctors have received, it’s time to consider that we, as informed patients, might have something valuable for our doctors or practitioners to consider and open their minds to. It’s not just about clinical trials. It’s time to RESPECT AND LISTEN TO YOUR PATIENTS, THEIR EXPERIENCES, CLINICAL PRESENTATION, AND THEIR OWN INNATE WISDOM. Learn from us. 

ANNOUNCING: A new powerful YouTube video in honor of thyroid patients worldwide: https://www.youtube.com/watch?v=2n0NfAUyOKo   Please share this video to your blogs, private Facebook pages, groups, Twitter, email. Join the PUSH!

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

 

– Head on over the Stop the Thyroid Madness Facebook page and Like it for daily inspiration and information!

43 replies

The Good Housekeeping fiasco asks a huge question: when is the media going to catch up with the real world?

As informed thyroid patients, we’ve all been talking about it in patient groups, blog posts, and amongst each other.  About.com’s Mary Shomon did a good write up in her blog post, and you can see one of several different Facebook group conversations here as well as the article and our comments after it, here.

And if you haven’t caught up with it all yet, here is a summary of the extremely sad misinformation and implications contained in an article of the latest issue in the Good Housekeeping magazine:

  1. that the first step to diagnosing your potential hypothyroid problem is the use of the thyroid-stimulating hormone (TSH) lab test  (a test which informed patients worldwide exclaim has left them either undiagnosed for years or undertreated! //www.stopthethyroidmadness.com/tsh-why-its-useless)
  2. that your TSH may only point to hypothyroidism if it comes back at 10 or higher (Hogwash!! say informed thyroid patients, who have been hypothyroid with a TSH in the two’s! See above.)
  3. that the only other tests you may need are the T4 and antibodies  (which informed patients have found is only PART of what you need, which needs to include the very important  free T3!  //www.stopthethyroidmadness.com/recommended-labwork)
  4. that it’s worthy to quote a Dr. Daniels who states “There’s no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range,”  (exactly the kind of doctor which nearly all informed thyroid patients state has kept them repeatly sick for years!  //www.stopthethyroidmadness.com/give-me-a-break )
  5. that if you have “other problems”, such as infertility or depression, your doctor might suggest medication (when, oh when, are doctors going to GET IT that depression and infertility are key symptoms of ongoing hypothyroidism!! //www.stopthethyroidmadness.com/long-and-pathetic )
  6. that T4 meds like Synthroid are T4 hormone are the go-to medication (and are the very medications which have kept patients sick, disabled, or with problematic hypothyroid symptoms  for  over 50 years! //www.stopthethyroidmadness.com/t4-only-meds-dont-work )
  7. that the “potency can vary” for desiccated thyroid…as if that’s a good reason to be concerned about its use  (potency is set in a predictable range and is made according to the strict guidance of  the United States Pharmacopeia , say the makers of desiccated thyroid, and desiccated thyroid has been changing lives ten fold for decades!  //www.stopthethyroidmadness.com/natural-thyroid-101)
  8. And last but not least…that you need to be on-guard about online patient information (yet wise and repeated “patient experience” has changed not only patient lives, but the way open-minded doctors are practicing in their own offices!! //www.stopthethyroidmadness.com/things-we-have-learned 

All the above, appearing in what we all thought would be considered a long-standing good magazine, only underscores the irresponsibility and ignorance of the media about REAL LIFE!! Who wants to subscribe to any magazine, or listen in seriousness to any news program, talk show, or internet website that allows this kind of DARK AGES BALONEY on its pages??  I don’t.

P.S. One particularly personal tragedy is the author of this article, Susan Carlton. She is clearly hypothyroid, yet completely duped by the pharmaceutically-brainwashed medical field which clings blindly to a poor medication and inadequate labwork.  She is ALL OF US LOOKING AT OURSELVES all those years when we believed in the doctors we went to and emptied our pocketbooks to try and find out why we had depression, infertility, rising cholesterol and blood pressure, linger aches and pains, poor stamina and fatigue, weight gain, hair loss, anxiety…and so many more symptoms of undiagnosed or undertreated hypothyroidism. 

And sadly, how many of us also thought that actions similar to “drinking more java (for energy)”, or “honing crossword skills (for focus)” or attending a “spinning class”  (for our weight gain) was going to help us!  They didn’t help at all. They just sent us closer to adrenal dysfunction and disability.

***********************************

If you could speak to the author, Susan Carlton, in kindness and wisdom, what would you say to help her get past the brainwashing she is a victim to, as you were??

If you could speak to Good Housekeeping and all media like Oprah, CNN, MSNBC, ABC, FOX, what would you say about the repeated misinformation?

12 replies

An editorial response from Thyroid Patient Activist Janie Bowthorpe

I am pleased to note that Mary Shomon of about.com,  who in her blog post on Thursday, April 22, 2010, has not only softened her wording about self-treatment by hypothyroid patients, but has also written expressively concerning surrounding issues. These are also issues which I presented in two blog posts earlier this week concerning the immense problem with doctors as expressed by patients, and self-treatment.

Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize,  self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

  • Is self-treatment one  of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
  • Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors.  The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more.  It’s not a pretty picture.
  • Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less  than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
  • Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms.  This is a risk for self-treatment.
  • Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation.  It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice.  But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
  • Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent  points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
  • Has one negative journal article about someone who self-treated “resulted in desiccated thyroid  getting greater scrutiny by the FDA?” The answer can easily be:  no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
  • Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it.  STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

  1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
  2. a new debilitating condition like adrenal fatigue,
  3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
  4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: //www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: //www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional,  negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere. 🙁


10 replies

Confessions of an Undercover Thyroid Advocate

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

  • “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
  • “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
  • “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
  • “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

*******************************

Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

9 replies

Glad to see some reason creeping in with thyroid patient discussion!

IMG_2564If you have been keeping up with my posts, you’ll know that thyroid patients have been facing a shortage of desiccated thyroid for many weeks, probably due to sharp increased demand i.e. thyroid patients have been finding out how lousy T4-only treatment like Synthroid has been for them, and how much better desiccated thyroid is.

That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before.  As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed.  Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing.  That is contrary to making panicky negative predictions about desiccated thyroid,  rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets.  All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place!  And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity!  Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

37 replies