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What the recent Medco scandal is actually telling us–i.e. there’s more to this story

medcoI have been watching with interest the past week about the justified ire of patients being expressed all over patient groups in the internet. And in case you’ve been too busy with school starting or end-of-summer activities, it involves one of the nation’s largest mail order pharmacies as well as the largest Pharmacy Benefits Manager (PBM):  Medco.

In a statement you can read right on their website, they state:

1)  there is a “nationwide shortage of porcine-derived desiccated thyroid”
2)  they are “uncertain about continued availability.”
3)  “ask your doctor if a synthetic thyroid medication, such as levothyroxine is right for you.”

In Medco’s direct message to doctors, they state;

1)  desiccated thyroid does not have the U.S. Food and Drug Administration (FDA)  Federal Drug approval”
2)  the FDA  “may remove any remaining unapproved products from the market.”
3)  the shortage is due to this “uncertainty”.
4) “the American Association of Clinical Endocrinologist recommends levothyroxine over desicccated thyroid, liotrix, combination of thyroid hormone, or triiodothyronine (T3) for the treatment of hypothyroidism.”

Clarification on their statements

If you are just now finding out about this,  do note the following:

1) There is not a nationwide shortage of all desiccated thyroid. There is a shortage of Armour because of its 2009 reformulation. (See my blog posts below about problems with the newly formulated Armour.)
2) Naturethroid by RLC Labs continues to be available. They are working hard to keep up.  See my post on Naturethroid.
3) Desiccated thyroid was around long before the establishment of the FDA, so they are grandfathered in and still work with the FDA guidelines.
4) There has been no statements by the FDA that they are removing desiccated thyroid.

An even more important revelation in this entire Medco scandal

There is actually an underlying message in the entire Medco fiasco that you should find even MORE disturbing: the continued  promotion of T4, aka levothroxine, as an adequate treatment of hypothyroidism.  And this is not just a faux pas of Medco, it continues to be the ignorant opinion of far too many doctors, medical schools and medical boards. All you have to do is look at what has happened in the UK with the Royal College of Physicians to see the idiocy abounding.

Over 100 years ago, desiccated thyroid was found to be an excellent treatment for hypothyroidism.  I give precise details about the first use of desiccated thyroid in Chapter 2 in the Stop the Thyroid Madness book. It worked!

But in the early 1960’s, the tide turned thanks to a batch of desiccated thyroid that turned out not to be what it said it was.  This is documented in the 1970 Pharmacological Basis of Therapeutics.  And pharmaceuticals, especially  Knoll Pharmaceuticals who first tableted levothyroxine aka Synthroid in 1955,  jumped to promote T4-only as a “new and modern medication”.  (See page 41 and 42 in the STTM book).  And doctors and medical schools fell for it hook, line and sinker.

And to this day, levothyroxine continues to be purported as an acceptable and logical treatment choice for hypothyroidism.  But patients all over the world beg to differ.  T4 medications like Synthroid, Levoxyl, Eltroxin, Oroxine and others simply leave all patients with their own unique amount and degree of lingering hypothyroid symptoms, no matter how high you raise it.

I also find it hugely disturbing to refer to AACE (American Association of  Clinical Endocrinologists) as if they are the grand poopah of knowing what’s right for thyroid patients. They are NOT.  Millions of thyroid patients who have switched to desiccated thyroid, T3, or a combo of T4 and T3 will tell them hands-down that they have gotten FAR better results, and most especially with desiccated thyroid like the “old” Armour, and now Naturethroid.

Visiting numerous thyroid patient groups will reveal how patients feel about Endocrinologists they have visited throughout the years.  Their experiences are far from flattering. In other words, with a few exceptions, thyroid patients are NOT impressed with Endo’s.

Medco’s statements are definitely a concern for patients and range from presumptous to unfactual.  But those statements only represent a far wider problem around the world in the medical community.  Clinical presentation and wisdom has been thrown out the window by doctors.  So patients have to continue spreading the word about the far superior treatment of desiccated thyroid, and their problematic experience with T4.

Want to be informed of these posts so YOU can be informed? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

***50% off sale!! All STTM t-shirts are now on sale. I love sales. Not only do they help support this site, they are a great way to spread the word. Go here.   Did you know that Laughing Grape Publishing will send a STTM book directly to your doctor?

13 replies

Doctor questions if adrenal fatigue is real….so is it??

Screen Shot 2015-08-13 at 1.26.06 PM(This page was updated. Enjoy!)

In 2009, Louis Neipris, M.D., a staff writer who has written many fine articles for myOptumHealth.com, wrote one article titled Adrenal Fatigue: Is it for real?

It appeared on Upper Michigan News, TV 6 website on July 16th and made the rounds on other sites.

His answer to his own question?  “Not really”. He adds  “It’s not an accepted medical diagnosis.”

Oops. Thyroid patients and a growing body of informed medical practitioners beg to differ.

About the term “Adrenal Fatigue”

Patients in the earliest discussion groups were using the term “adrenal fatigue” right after the turn of the 21st century, probably because they saw it used so often on the internet, as well as referred to in certain books. And we did think that the adrenals became “tired” as a way to explain the low cortisol we outright saw in each other’s saliva results, as well as symptoms. The term “adrenal insufficiency” also fit.

Later, it became more popular with patients to identify the biological cause of our low cortisol as being rooted in a sluggish HPA axis, i.e. the messaging between the Hypothalamus to the Pituitary to the Adrenals. That messaging wasn’t as vibrant as it should be.

Fast forward to the 2014 book Stop the Thyroid Madness II, where the last chapter by Dr. Lena D. Edwards et al does a bang-up job explaining what might really be going on, and which they term “hypocortisolism”. They propose five brilliant and biologically valid reasons why we see low cortisol:

  • a developmental response to high stress
  • a corticotrophin-releasing factor (CRF) receptor down-regulation
  • inadequate glucocorticoid signaling
  • intrinsic adrenal gland dysfunction
  • an adaptive response towards infection or inflammation.

See Chapter 13, pages 291-292 for more details on each of the five. It’s a brilliant chapter on the subject within the STTM II book.

In other words, there are explainable and logical reasons why certain thyroid patients have low cortisol, and it’s very real, whether you call it adrenal fatigue, adrenal insufficiency or hypocortisolism.

The cortisol saliva test

One excellent method, we as informed patients, prove our low cortisol state is by the use of saliva testing. The important aspect of saliva testing has been two-fold: 1) it reveals our cellular level of cortisol, which we’ve noticed has always fit our symptoms (if the facility we use knows that they are doing, as do the ones listed on the Recommended Labwork page which do not need a doctor’s prescription), and 2) it tests us at four key times during a 24 hour period (which is important to see the fuller picture of what our adrenals are doing.)

We’re learned repeatedly, in comparison, that blood cortisol is not the way to go, since with blood, you are measuring both bound and unbound cortisol. And as informed patients, we have noticed that blood cortisol can look high, yet both saliva testing and our symptoms reveal we are actually low, cellularly. We’ve even seen blood cortisol measure low, yet saliva and our symptoms reveal high…even though it’s less common that the other way around. It’s uncanny! Also, with blood cortisol testing, a misinformed doctor will only do one test instead of the needed four.

What has been the impetus behind the low cortisol state of a large body of thyroid patients?

Two very clear reasons:  first, being held hostage to the TSH lab test, giving one a “normal” reading for years in spite of obvious clinical presentation of hypothyroid symptoms, and pushing one’s adrenals into overdrive with high cortisol and adrenaline to keep the patient going, and ultimately leading to the downwards spiral of adrenal fatigue/adrenal insufficiency/hypocortisolism.  On page 65 of the revised Stop the Thyroid Madness book, you’ll read about a 44 year old woman who went 15 years with a “normal” TSH result, in spite of obvious clinical presentation of hypothyroidism, and which led to her own low cortisol. This is not uncommon.

Second, the risk of adrenal fatigue is high due to the inadequate treatment of T4 medications like Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and other T4-only meds. Because of being forced to live for conversion alone, and missing out on the compliment of all five thyroid hormones, T4-only meds leave a high percentage of patients with their own brand and intensity of lingering symptoms of a poor treatment…sooner or later…forcing the adrenals to kick in for too long, for many.

Even William Mck. Jeffries MD., who wrote the medical classic Safe Uses of Cortisol around 1984, understood the preponderance of adrenal fatigue and low cortisol, even without the diagnosis of Addison’s disease, and the need for physiologic doses of cortisol treatment, or the amount needed by each individual’s body to function correctly.  And he would certainly be amazed by the explosion of adrenal fatigue that has occurred since then in thyroid patients thanks to the lousy TSH and synthetic T4-only ‘affaire de coeur’ with doctors.

Adrenal fatigue may not be an “accepted diagnosis” by some medical professionals.  But today, there are a growing body of open-minded practitioners who recognize its reality as an acceptable diagnosis, and for which we are grateful.  Now our job as patients is to make sure our more open-minded doctors understand what we have on how to treat it! 

JanieSignature SEIZE THE WISDOM

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** Chapters 5 and 6 in the revised STTM book contain the best details about adrenals and treatment in any book. 

** Here’s a page on STTM listing a variety of symptoms related to a cortisol problem: //www.stopthethyroidmadness.com/adrenal-info/symptoms-low-cortisol/

45 replies

The intrusion of reality about levothyroxine, Synthroid, T4 and depression

 

STTM Depression and T4-only(This post was updated to the present day and time. Enjoy!)

I’ve been perusing comments in response to the UK’s Royal College of Physicians blundering and dark-age-constructed Diagnosis and Treatment of Primary Hypothyroidism.  And though all comments are quite good and worth your read, I was struck by the comment titled May Reality Intrude? by a man named Charles.

Charles profound story about his wife’s depression

Charles explains that in 1999, his 67-year-old wife had RAI (radioactive iodine) and was then put on levothyroxine, a T4-only medication (aka Synthroid, Levoxyl, Eltroxin, Oroxine, levothyroxine, et al).  And not long after, she complained of having depression.

He had an idea why after reading the New England Journal of Medicine about T3, and proceeded to buy her Armour off the internet.  For those reading this, Armour is one of several brands of Natural Desiccated Thyroid–the latter which contains all five hormones that a healthy thyroid produces: T4, T3, T2, T1 and calcitonin.

Without her knowing, he switched medications. Lo and behold, he states “she promptly returned to her usual sunny disposition”. Her physician knew nothing of the switch either, and found nothing to be concerned about in her.

Charles then explained how, at age 74 in 2007, she was near death thanks to an ulcer bleed.  And to continue treating her hypothyroidism, the hospital gave her levothyroxine, aka T4-only, all over again.  Back came her depression and a feeling of wanting to go home and die.

So Charles brought her Armour to the hospital, and though her physical state was depressing enough, her sunny disposition returned.  And that happy spirit while still on Armour continues today after a full recovery.

And Charles pondered: If his wife had been in a NHS (National Health Service) hospital under the care of a so-called thyroid specialist of the NHS, would she have failed to obtain T3 in her treatment and instead, sent to a psychiatrist as if her depression had nothing to do with her levothyroxine treated hypothyroidism–the very treatment that the Royal College of Physicians has a dogmatic love affair with?

He then concludes: My wife’s depression was obvious. Since she is equipped with much the same assortment of body parts and associated physiology as others, is it not likely that many levothyroxine-treated patients suffer from less-noticeable depression?

Our experiences as thyroid patients agree with Charles!

Well Charles, most any thyroid patient who decides to respond to this will tell you unequivocally YES, YES, YES.  Because there’s no research, study or directive that is more profound and telling than the actual EXPERIENCE of patients all over the world with T4 treatment and depression…besides a slew of other side effects of continuing hypothyroidism on T4-only meds.

Why have so many experienced depression on T4-only?

Because we’ve learned repeatedly that the body is not meant to live for T4 alone, which is simply a storage hormone, not to live for conversion alone. T4 is meant to convert to the active hormone T3. Studies reveal that T3 influences the effect of the transmitters serotonin and catecholamine in the brain–both which effect mood. Without enough T3, an imbalance in serotonin seems to occur. So when one is forced to live for conversion alone, the body doesn’t appear to get enough of the powerful T3. Depression is just one of many side effects of a poor treatment with T4-only.

Go here to read several stories of patients whose depression went away with the right thyroid treatment.

* Did you have depression on a T4 med? Tell us about your experience in the Comments section of this post.

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65 replies

Yes, Jessica Terry, it’s weird to have to self-diagnose, but thyroid patients have had to do the same thing!

Jessica Terry is an 18 year old student at Washington State high school in the Bay Area who had years of problems which doctors couldn’t figure out: vomiting, diarrhea, weight loss and stomach pains.  Doctors said she had irritable bowel syndrome or colitis, and said her intestinal tissue was just fine according to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intestinal tissue to her Biomedical Problems class, and voila…she diagnosed her own problem:  granuloma, and specifically, Crohn’s disease, an inflammation of her intestines.

Sound familiar??

Yup, thyroid patients have had to do the exact same thing–self-diagnose– for almost ten years because of continuing symptoms of hypothyroidism which doctors have routinely dismissed, pooh-poohed or blamed on something else.  It’s all been a horrific, wide-reaching and damaging 50 year medical scandal by the medical establishment upon thyroid patients.

And why has this calamity occurred? Because doctors have always been hoodwinked by their medical school training, continuing education and Big-Pharma-financed-research in believing that T4-only thyroxine medications like Synthroid, Levoxyl, Levothyroxine, Eltroxin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thyroid patients around the world who had the gall to use the internet and join patient groups, we figured out it’s all because those medications and labwork have not worked, and what has worked. Additionally, it was patients who discovered they had adrenal fatigue and/or low ferritin and how to treat it, and patients who have succeeded in beginning a wave of change around the world in the treatment and diagnosis of hypothyroidism (except for the UK, who has gone backwards to the dark ages).

You can read Jessica’s story first reported in the Sammamish Reporter,  and only recently reported to a wider audience in the Bay Area News newspaper. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for informing me of this news.

P.S. Do ya think that any newspapers or major news outlets like CNN are going to finally get what a huge story thyroid patients have given them?? We’re still waiting……

*Want to be informed of Janie’s blog posts? Curious what’s on her mind? Just use the Notification link to the bottom left of the links.

4 replies

UK celebrities with thyroid cancer or disease

clareblading1Thyroid problems have become rampant.

And it’s not just in the US with individuals like Oprah, fitness guru Jillian Michaels, Sex and the City’s Kim Cattrall, George and Barbara Bush, Kelly Osbourne and others.  A recent article in the Daily Mail-UK highlights the saga of  Clare Balding, the BBC TV sports presenter in the UK whose thyroid was gladly removed due to a malignant tumor.

Even the gal who wrote the well-written article about Clare, Pippa Jolly, reports having gone through the same removal 13 years previous due to an extreme case of Hashimotos and a nodule pressing against her trachea.

But within the informative and hopeful tone of the article are a few Rodney Dangerfield thuds of the continuing SCANDAL and idiocy of a particular thyroid treatment which even the most innocent of article writers can be fooled.

Thud #1: The very first sentence of the article says: Some good news for Clare Balding, the BBC TV sports presenter, is that her recent operation to remove her cancerous thyroid gland – a thyroidectomy – should be the end of the matter.

End of the matter? Only if she had been put on desiccated thyroid like Naturethroid, et al. Because it appears she’s on the delightfully enchanting synthetic “thyroxine“, the darling of most UK doctors and which serves to leave almost everyone with their own brand and intensity of continuing hypothyroid symptoms.  You can listen to my audio here about T4.

Thud #2: Diagnostic rates are on the increase, says Professor Monson, as thyroid tests are now done routinely at GP surgeries. ‘As a result there is a higher detection rate and the disease can be tackled earlier and if necessary followed up by surgery.

Right. Those increasing diagnostic rates, some which are based on the lousy TSH lab test, are overridingly catching someone’s hypothyroid state years after it started, which leaves a certain percentage with the misery of adrenal insufficiency and host of other problems from being undiagnosed so long.  And if one is treated after surgery based on the same holy TSH, you will only continue to have your brand of continuing symptoms. You can listen to my audio on the TSH here.

Thud #3: If the thyroid is removed or not functioning properly, thyroxine will need to be taken in drug form for life.

You and millions of others have been hoodwinked into thinking it’s thyroxine you will need the rest of your life, aka Eltroxine, Synthroid, or levothyroxine,  et al.  But those T4 meds force you to depend on conversion alone, a process not well done in many, and you miss out on what natural desiccated thyroid would be giving you as a much wiser treatment–exactly what your own thyroid gives: direct T4, T3, T2, T1 and calcitonin. Or even at the VERY least, giving yourself synthetic T4 with synthetic T3.

Thud #4: Now I have to have my hormone levels checked every three months and make sure I take my medication, but otherwise I feel fine.

I completely believe Pippa when she says she feels fine. But I want to warn her:  some CAN feel fine on a T4-only medication, but eventually and especially as she ages,  she’s going to have to watch out for those pesky little demons of being on an inferior, inadequate medication, which can include rising cholesterol, chronic low-grade depression, rising high blood pressure, or a host of other symptoms which are individual to each person on thyroxine.

Here’s hoping Clare and Pippa join the growing body of patients all over the world whose lives are being changed thanks to natural desiccated thyroid.

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4 replies