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A guy’s story: scaring the hell out of him about being on HC cortisol!

FEAR

(This page has been updated to the present day and time. Enjoy!)

Several years ago, a large percentage of thyroid patients on yahoo groups like NTH were figuring out that they had adrenal fatigue, aka low cortisol, from years of adrenals working overtime due to the inadequate TSH lab test, or being on the lousy T4-only medications like Synthroid, Levoxyl, levothyroxine, Eltroxin, etc.

Not only does low cortisol keep desiccated thyroid from working well, it also causes all sorts of angst with paranoia, depression, anxiety, easy anger, sensitivity to light and/or sounds, reclusiveness, sleep issues and more.

First, patients discovered the importance of using the 24 hour adrenal saliva test rather than blood or urine. Blood cortisol measures both bound and unbound cortisol, and we noticed in some, it could cause levels to look high (when saliva proved it was low as did symptoms), or vice versa.

When low cortisol was confirmed via saliva testing and symptoms, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were no, to allow thyroid hormones to reach the cells. If saliva results showed only moderately low cortisol, adrenal cortex was used. The right amounts of cortisol was achieved via doing one’s Daily Average Temps.

And success was achieved!

When all other issues were discovered and treated, ranging from being on a better thyroid treatment, to bringing iron and B12 back up to optimal levels, to bringing high heavy metals down, to treating Lyme…on and on….patients were finally able to wean off, and be successful in their continued treatment with desiccated thyroid and/or T3! That success continues today!

But ignorance abounds in the medical profession

Yet in spite of clear success in the treatment of low cortisol with supplemental cortisol in the correct amount for each individual (which can range from 15 to 40 mg generally–men often need the higher end), as well as excellent books on the subject by Wilson, Peatfield, Jeffries and the STTM book, patients like RD below still encounter doctors who fill their minds with all sorts of fear and warnings:

I bought your book and later on I discovered your website which are both great. They are a superb source of information and support for thyroid and adrenal fatigue sufferers. Thank you so much!

Personally I got adrenal fatigue by a sustained lack of sleep for several years (crying babies).  I found a doctor who prescribed Hydrocortisone (17.5 mg/day, 5-5-5-2.5), Fludrocortisone, DHEA and Testosterone. Symptoms disappeared in about 2 weeks.

A first attempt to wean off after 6 months made some serious symptoms reappear very quickly, so I returned to the original dose.

It is very stressful that many established doctors (our family doctor, and my wife’s thyroid-endocrinologist) are scaring me like hell that I am taking HC. They are saying I am destroying my body and I will never succeed in weaning off HC.

My wife is a T4-only thyroid-patient with low-cortisol symptoms. She also has been scared about dessicated thyroid and HC. Reading your book I was however convinced she could benefit a lot from a better treatment…

Keep up the good work, as patients we are really left alone in the dark by our doctors…

And unfortunately, it’s true. Thyroid and adrenal patients are left in the dark by many doctors about either the adrenals issue so many of us face, or how to correctly treat it.

What you can do

Here’s where you can read more, and in turn, take this important information into your doctors offices:

Click on the graphic above to order an excellent saliva cortisol test.

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

Dr.JohnCLowe

If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, here.

26 replies

Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

24 replies

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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** Join the STTM Facebook page for daily inspiration, tips and information. 

** 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.

* Want to be informed of these blogs? Curious what’s on Janie’s mind? Use the Notifications at the bottom of this page. 

* Join the STTM Facebook page for daily information, tips and inspiration, and sometimes a few chuckles. 

 

65 replies