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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

Is Cellulose the real problem in desiccated thyroid meds for many?

Screen Shot 2015-08-05 at 12.53.55 PM(This blog post is updated to the current day and time. Enjoy!)

When Forest Labs reformulated Armour desiccated thyroid in early 2009, they stated they increased the filler Microcrystalline Cellulose, and decreased the Sucrose (sugar). And all of sudden, the tablets became impossible to do sublingually–a method so many of us loved and which seemed to give even more of a punch.

And we were left wondering in 2009 why they would change a particular quality (being able to do the tablets sublingually) that thyroid patients praised so heavily?  Positive opinion among patients for Forest Labs back then slipped several notches. (Forest Labs was bought out by Actavis in 2014)

But the real cuckoo’s nest for many thyroid patients still on Armour in 2009, who knew firsthand the life-changing benefits of natural desiccated thyroid, was a maddening return of serious hypo symptoms on the 2009 Armour with its increase in cellulose, and subsequent new stress on their adrenals, sooner…or later! You can read several horror stories in the comments of the post below, or go here.

So patients turned to other alternatives, which at the time was Naturethroid and Westhroid by RLC Labs. (Naturethroid stopped working as well in 2018)

So what has been the common thread in the most problematic desiccated thyroid products?

It has always been CELLULOSE, a plant fiber, and more commonly known by the trade name Avicel. And what does fiber do in your stomach? Inhibits absorption. Armour’s cellulose was raised, and bamm…problems.  Compounded desiccated thyroid, with cellulose as a filler, has been problematic for many patients with a return of hypo symptoms, especially if it was Methyl Cellulose, a larger particle size product. But some have even had problems with compounded containing Microcrystalline Cellulose, the smaller cellular product. And a certain body of patients even had problems with Naturethroid back then before it became scarce for awhile. And Naturethroid used cellulose as a filler.

Note: With all the complaints, Forest Labs did change something about Armour by mid–to-late 2010. Though it never returned to what it was before 2009, it did become a softer tablet and patients did better on it. But we certainly learned a big lesson about cellulose in our NDT pills..

Is this problem true with T3-only products?

Yes. Patients noted that generic T3 was far less effective than the brand name Cytomel (both Liothyronine Sodium)  And what filler is up to 70% in the generic T3?  CELLULOSE.  

What does literature say about the use of Cellulose as a filler in medications?

Plenty. Cellulose is from wood. Wood is fiber. And fiber in your gut affects absorption. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Dietary fiber has been reported to lower the blood levels and effectiveness of tricyclic antidepressant medications…Reduced dietary fiber intake increased the blood levels and improved symptoms in these patients.

* While fiber supplements may help to regulate blood sugar levels, they may also interfere with the absorption of anti-diabetic medications….Therefore, fiber supplements should not be taken at the same time as these medications.

* Taking soluble fiber such as psyllium with carbamazepine (Tegretol), a medication used to treat seizure disorders, may decrease the absorption and effectiveness of carbamazepine.

* Fiber in the form of pectin (from fruit) and oat bran reportedly reduces the body’s ability to absorb cholesterol-lowering medications known as “statins,”… and could lead to decreased effectiveness of these medications.

* Fiber supplements may reduce the body’s ability to absorb digoxin (Lanoxin), a medication used to regulate heart function.

* Clinical reports suggest that psyllium or other soluble fibers may lower lithium levels in the blood, reducing the effectiveness of this medication.

* In one clinical study, the fiber supplement guar gum reduced blood levels of penicillin.

Fast forward to the present

If you are using a compounded desiccated thyroid medication, it’s strongly recommended to request powdered acidophiles, also spelled acidophilus, as your filler.  One gal states her compounding pharmacy uses powdered Ginger (but beware of too much Ginger if you have Mitral Valve Prolapse. It can cause palps if you take too much–my experience).  Others might use powdered Vitamin C.  See what other fillers your compounder can offer.

Another possibility is Cellulase, an enzyme which helps the splitting and breakdown of cellulose, It’s found on most supplement websites.

JanieSignature SEIZE THE WISDOM

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

* Become an informed thyroid patient! //www.laughinggrapepublishing.com

74 replies

Is there a genetic reason many of us do lousy on T4?

deiodinase2Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4” simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

10 replies

Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.


2 replies

Puff. Puff. Puff. If you are a cigarette smoker & hypothyroid, you might want to read this!

Screen Shot 2015-05-15 at 11.01.08 AM(Though this post was originally written in 2008, it has been updated to the present day and time! Enjoy!)

Who, as a smoker, hasn’t heard how deleterious tobacco smoking is for your health. Not only will you acquire health problems directly related to smoking, but your life is shortened by 10-15 years average according to statistics. My own father died at age 63 directly related to his smoking i.e he got emphysema, then lung cancer. (Update: Discovered from doing my own genetics that I have inherited a mutation which can cause me not to break down Nicotine well. This may explain why my Dad died so young from smoking!)

But in spite of strong reasons to quit, most smokers will tell you it’s NOT easy. Why? Because the nicotine in tobacco is the addictive bogeyman. Nicotine stimulates those pleasure centers in your brain, besides being a substance which “gets you going” by releasing both blood sugar and adrenaline. The American Heart Association states that “Nicotine addiction has historically been one of the hardest addictions to break.”

But for hypothyroid patients, tobacco smoking presents another whammy.

Namely, smoking may be stressing your adrenals over and over. And with adrenal problems being a common side effect of treating hypothyroidism with T4 meds like Synthroid, Levoxyl, Eltroxin, et al, as well as being dosed by the lousy TSH, you’ve got a third reason to fall into adrenal issues if you are a smoker.

Additionally, another factor in the difficulty of quitting is that cortisol decreases when you try to quit.

A 2006 research report found that the lowered cortisol after quitting is associated with smoking relapse and with reports of increased withdrawal severity and distress. So, when you already have adrenal stress, and you quit smoking–a double whammy against being successful.

Does being a smoker affect the TSH lab test?

Yes, in such a way that smoking will lower your TSH, which can hide the fact that you can be undiagnosed hypothyroid, or undertreated. See an interesting research study on smoking and your TSH here.

What’s the solution?

If you don’t have adrenal fatigue and want to quit, it may be wise to have a good adrenal support on hand, such as adrenal cortex or any quality OTC adrenal product at your health food store. If you DO have adrenal fatigue, staying away from cigs may require adding additional cortisol to your daily amount. Chapters 5 and 6 in the STTM book have good information to help you with cortisol support. Also be prepared that by quitting, your hypothyroid state may be revealed, or may get worse.

Are you a smoker with hypo? Don’t hesitate to respond to this post with your experience. We learn from each other!

READ DEBORAH’S STORY ABOUT HER ATTEMPT to STOP SMOKING.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

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91 replies