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

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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

Good Housekeeping replies…and let’s set the record straight!

Below this blog post, you will see my original July 25th post about the potentially harmful thyroid article that appeared in Good Housekeeping magazine’s August issue.

And sadly, though thyroid patients can appreciate even getting a reply by the Editors of Good Housekeeping (which is certainly better than the dead silence thyroid patients got from Oprah Winfrey when they emailed numerous times about this horrific thyroid treatment scandal), we certainly are saddened by the continued poor understanding and false suppositions contained in the reply:

We have read your postings and letters with great interest and are moved by the depth of feeling that underlies them. It is obvious that many of you write out of frustration with your own unresolved symptoms, and we are sympathetic to your ongoing difficulties.

Good Housekeeping‘s August 2011 article on thyroid disease describes one woman’s quest to understand her own ambiguous diagnosis. As described in the article, there is a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders – among mainstream physicians as well as those with a more complementary or integrative orientation. We recognize that much of the information on the Internet serves to support patients who haven’t been heard or understood by their own doctors – a terribly disheartening and frustrating experience for anyone. But it is often difficult to discern what’s been scientifically tested and proven versus what is still being explored. That is why this article, like all health articles in GH, drew on research and advice that is evidence-based; typically, such information comes from credentialed doctors working at leading medical and academic centers. A careful reader of our story will see that doctors we consulted acknowledged that low thyroid levels might be treated if a patient has other problems like infertility or depression or if she has Hashimoto antibodies and other factors.

It is our hope that better understanding of the disease will lead to more effective treatment for all. That’s really the goal and the motivation behind all of Good Housekeeping‘s health coverage.

We thank you for your valuable feedback and encourage you to continue to send us your thoughts. You can reach us at ghletters@goodhousekeeping.com.

And here is my reply to the Editors of Good Housekeeping:

We, as thyroid patients around the world, do appreciate that you took the time to reply. We have been the recipients of dead silence all too often in our quest to inspire and educate the media about this near 60-year thyroid treatment problem. Thank you.

But there are incorrect observations and assumptions in your reply that need clarification and intelligent re-thinking:

    1. This patient-to-patient movement is far more than ‘frustrations with our own unresolved symptoms’.  This is about  hundreds of millions of us worldwide who have been subjected to a brainwashed bias by medical professionals in the use of  T4-only medications and the TSH lab test (both which have left us with lingering hypothyroid symptoms and denied as such by our physicians).
    2. What you refer to as “a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders”  is, in our experience and observation, only within the boundaries of a dogmatically-trained medical profession comprised of those who seem to have lost the art of paying attention to CLEAR symptoms of hypothyroidism with a so-called “normal” TSH lab test or with the use of the laughable “gold standard” of thyroid treatment–T4-only.
    3. This is far more than what is “scientifically tested and proven.” Do you REALLY believe that all scientific testing is unbiased and correct??  Do you not understand that much science has been done quite badly, and the results are often in conjunction to whoever or whatever FUNDED the research? Instead, this is about real live and multiple patient experience and outcome–patient experience where lives are changed due to not going by the TSH but by symptoms; where labwork is used as the cart pulled by the horse of symptoms; where desiccated thyroid has been proven to be far more beneficial in the removal of our symptoms than thyroxine ever was or will be…and more. (And here is science that actually underscores our experience).
    4. You state that the article “drew on research and advice that is evidence-based.”  And what about the evidence of millions of thyroid patients who have endured multiple and clear hypothyroid symptoms for years before the TSH lab test rose high enough to reveal their obvious hypothyroid state? What about all of us who have suffered for years in our own kind and degree while on T4-only meds like Synthroid, levothyroxine, etc? What about the irrefutable evidence of those whose lives have turned completely around thanks to desiccated thyroid and/or T3, especially after they treated the extreme side effects of being undiagnosed or undertreated all these years thanks to a clueless medical profession?
    5. You refer to “credentialed doctors working at leading medical and academic centers” as your source of information: would it shock you to hear that MANY credentialed doctors are the very ones who have kept us completely sick for nearly sixty years??  Ask thyroid patients about all those doctors they saw over the years who were “credentialed”, and your eyes and ears will burn. And what about all the growing body of “credentialed doctors” who now have the courage to state that the TSH lab test is lousy (except for diagnosing hypopituitary), just as is T4-only treatment? They are many!
    6. And finally, if your “goal and the motivation behind all of Good Housekeeping’s health coverage” is to find more effective treatment for all, do a follow-up article in an upcoming issue about the scandal of T4-only treatment, the poor use of the TSH lab test (which is measuring a pituitary hormone, not cellular levels of thyroid hormones), the experience of patients worldwide on T4, the experience of patients who lives made a complete turn-around thanks to desiccated thyroid or T3, the experience of patients with “credentialed doctors” who have been nothing more than condescending, ignorant, biased and dogmatically close-minded to our experience and wisdom in our own bodies!

Good Housekeeping do a PATIENT EXPERIENCE article!  Let your readers use their own wisdom about the “mass experience of patients worldwide” vs the “dogmatic, pharmaceutically-brainwashed “opinion” of a several misguided and credentialed medical professionals.”

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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.

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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?

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How does your insurance deal with desiccated thyroid?

(Though this post was first written in 2011, it has been  updated to the present day and time. Enjoy!)

Wendy is one of those gals that tries to adhere to “natural” in regards to her medication choices. She switched over to Natural Desiccated Thyroid (NDT) from Synthroid about three months ago.

The transition was slightly trying, says Wendy. Her doctor didn’t believe her that she shouldn’t be on a low starting dose for more than a couple weeks without upping it. So she  went hypothyroid all over again. It’s a common mistake that many doctors make with NDT.

But after successfully upping the dose every few weeks, she will now shout that it’s been the BEST thing  in every way!  She tells folks that being on Synthroid was like having your hand amputated and replaced with a hook, while being on desiccated thyroid was like having it replaced with a fully functional prosthetic.  Her skin is softer, hair is not shedding, her mood has changed in a good way, memory has returned, fogginess has faded. She feels closer to her old self than she has in almost five years.

Now the bad news…

All this time, she only paid $15 for her desiccated thyroid at the local Walgreen’s. But as of April 1st, 2011, it became what is called a Tier 3 drug under her insurance plan–United Healthcare.  Exclaims Wendy in outrage and sadness:  “This means that the natural drug I love, that has restored my in so many ways that the synthetic t4-only drugs never could, will now cost 85 bucks! Who can afford that?! ”

And here’s the awful irony when it comes to her insurance plan: Synthroid, the worst medication ever thrust upon us in the treatment of hypothyroid, is Tier 2 (i.e. costs less), and generic T4-only is Tier 1 (costs even less).  i.e. if you are under this insurance, you have to pay big bucks to feel a thousand times better.  She has no clue why this is happening, but warns that it might start to happen across the board for others as well!

In the United States, most Tiers look like this (and some companies have three tiers, while others have five):

Tier 1 is for generic medications and has the lowest co-pay

Tier 2 is for “preferred” brand name medications, i.e based on “safety, efficacy and cost”, and is the second lowest co-payment. (I put the word preferred in quotes because it’s not based on what changes YOUR life as a thyroid patient.)

Tier 3 is for non-preferred brand name medications or preferred specialty drugs. It’s termed as those drugs which are not typically used as first line of treatment, and have a higher co-pay.

Tier 4 is for specialty medications, i.e those which require special dosing or administration. Highest co-payment.

In the United Kingdom, where the National Health Service (NHS) provides publicly funded health care, there are formularies which specify which medications are available…or not, and one can get Prescription prepayment certificates (PPC) .

In Australia, “Medicare — via the Pharmaceutical Benefits Scheme (PBS) — subsidises the cost of around 1,700 ‘necessary and life-saving’ medicines. In fact, most medicines available on prescription are subsidised under the PBS, so just by having a prescription filled you receive the benefit of the subsidy. https://www.justlanded.com/english/Australia/Australia-Guide/Health/Medicines-Chemists

Does your health insurance cover your desiccated thyroid?

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

How medical journals affect the prescription practice of your doctor: An interesting article on this found here. And here’s an article about how the author of a medical article fails to state his association with the pharmaceutical of the product he is writing about–one more conflict of interest and influence on your doctor!

Ridiculous! Basing “normal” for Hashimoto’s patients by the TSH, a pituitary hormone, NOT a thyroid hormone: Read it here and weep.

Vit. D can help you stay sharp: So many benefits from optimizing your Vit D, and here’s one with your brain.

Need to talk to others? See all your alternatives here.

63 replies

A legendary soccer player with hypothyroid who was forced to quit, plus one creative YouTube video.

A guy posted about this one of the STTM Facebook groups, and I found it hauntingly familiar. When I was in my early 30’s, I was forced to quit my beloved career as a well-trained and talented fitness instructor due to hypothyroid complications causing debilitating dysautomia reactions thanks to T4-only medications. It was very grievous and hard.

But famous Brazilian soccer football player Ronaldo, who was the all-time leading scorer at the 2006 World Cup,  has had to retire because the game rules FORBID him from taking the hypothyroid meds he needed, even if they have been the lousy T4-only levothyroxine meds. i.e. the rules see taking thyroid hormones as against the anti-doping rules.

What a shame. He’s young, 34 years old, and could have continued with a great career. But you also have to wonder how long he would have lasted at that, because Brazil doctors are still putting people on T4-only medications like so many other clueless doctors around the world.

You can read about it on CNN here.  Did you identify with losing a career or hobby thanks to hypothyroidism? What’s your story?

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I get really interesting emails from folks, and one arrived last week from Brian, the creator of a YouTube video called Our Holy Miracle of the Infallible TSH Test that he wanted me to view.

I confess that when I first saw it, I thought it was quite bizarre! Wasn’t sure what I thought of the humor with the female as she was dressed.  But the more I thought about it, I also see it as extremely creative, a good sense of humor, and a pertinent message. In fact, it may strongly appeal to younger folks because of it’s intentional hip irreverence.  So, go there with an open mind and sense of humor, and you just might like the message as I do and others are! http://www.youtube.com/watch?v=tOb2POQGE6g

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15 replies