desiccated thyroid tags

As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website.  Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS.  Again, I will not be mentioning his name.  The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!

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

In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds.  Even the Royalty of Hungary began to go to his practice. Why?  Because he had the best outcomes.

When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish,  his peers brought him before the medical society and censured him for not adhering to the current practice guidelines. 

His crime? Washing his hands before delivering babies.  Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action.  Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800′s and often fatal.

The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice,  but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of  current practice guidelines.

It was not until the 1890′s that his methods were fully recognized,  even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.

And today, established scientific and medical opinions continue the same ridiculous travesty. 

TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal.  Yet, Gay, JC et. al.,  in the Arch Intern Med 2000: 160: 526-534,  showed that the TSH range was 0.45-2.5 for 95% of general population.

In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”,  Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).

As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:

“I am aware of this idea to lower the reference range for TSH.  But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0,  we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005,  which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.

Thanks, and good luck,
xxx

So there is the problem. Even if TSH alone was used for screening,  the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’  are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.

Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.

******

From Janie:  ABSOLUTELY BRILLIANT!  And of course, informed thyroid patients also know another inane current practice guideline–the use of  Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.

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

FIND THE ABOVE APPALLING??? FIGHT BACK!!!  A publicist has been hired to represent  Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

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.

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

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!!

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

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.

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

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

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

(No, the tatoo isn’t mine. It belongs to a gal who says STTM helped changed her life. Amazing and brave! )

MEN CAN HAVE LOW IRON, TOO:

I’ve seen a few hypothyroid men who have found themselves with low iron. In fact, either iron anemia is growing in men, or we’re just hearing from them more thanks to the internet.

And remarkably, it has become personal for me. Turns out my own husband is very low, which explains the fatigue he had been experiencing lately. Sadly, taking iron pills give him a headache, so he will eat high-iron foods daily, and will be exploring Floradix, a liquid herb-based iron. Men, get all the needed iron labs!

REVERSE T4 (yes, I said it correctly)

I’ve been having an email chat with a scientifically-minded guy named Brian who also has a sister with a major in bio-chemistry. And something dawned on both of them concerning “levothyroxine” which is the synthetic term for T4.  The prefix LEVO means the ”left-hand” version of a molecule, and thyroxine is the biological term for the real T4.  Says Brian: “Levo-thyroxine means it has exactly the same atoms in exactly the same order, but not the same shape (handedness), so if enzymes or proteins have to chemically “fit” it to work, they may not be able to. He concludes this can be one reason being on synthetic T4-only does not work, and knew it was alluded to by Dr. Mark Starr.

But Brian continues: In just the same way that levothyroxine is the mirror-image or “left-handed” version of regular thyroxin, RT3, or Reverse T3, is the mirror-image or “left-handed” version of T3.  If we were consistent with our terminology, in other words, levothyroxine would be known as “Reverse T4″. Says Brian, just as Reverse T3 is biologically inactive , so is Levothyroxine, thus “Reverse T4″. I love it!

CHECK OUT WHAT THIS MEDICAL TRANSCRIPTIONIST SAID:

In a facebook discussion,  a female medical transcriptions has had a realization. Namely, in almost every report she is transcribing into text or digital format,  a patient with the diagnosis of hypothyroidism also has a medical history of depression and/or anxiety. You can read about depression & anxiety here. Of course, no patient who is informed is surprised! They are HYPOTHYROID symptoms.  And she then notes the prescription ordered by the doc: Synthroid.  WAKE UP DOCTORS. You are only dooming your patients to a lifetime of depression, anxiety and far more.

WHY MANY OF YOU HAVE INFLAMMATION (and don’t even know it), WHAT IT DOES, AND HOW TO TREAT IT

One thing I see a lot when doing phone consultations, as well as on thyroid patient groups, is evidence that someone has low-grade inflammation. In fact,  research has already shown that a large body of folks with hypothyroidism have higher levels of CRP (C-Reactive Protein) which is a lab test marker of inflammation.  That inflammation, in turn, puts you at a higher risk of heart disease.

Another clue that you have an inflammation problem is having higher ferritin levels (i.e. ferritin looks great, or is too high) along with poor iron serum/% saturation lab results.  In other words, in the presence of chronic inflammation, your iron will be diverted to your ferritin iron storage, and less will be in your serum and saturation.  You can also find yourself with very low TIBC (Total iron-binding capacity). The TIBC is measuring the protein “transferrin”, made in your liver, and which transports your iron through your body. If this is the case, you can’t take high levels of iron supplementation, as explained on the above ferrritin page and more in the book.

What do you do? 1) Treat your hypothyroidism properly–a huge step in lowering that inflammation–with desiccated thyroid, NOT Synthroid. (Read the Things We Have Learned page on STTM, or even more details in Chapter 3 in the new Revised STTM book). 2) Treat proven low cortisol with HC or hydrocortisone. If saliva cortisol tests (Don’t guess! Do a saliva test!) reveal you have adrenal dysfunction, cortisol supplementation will help counter inflammation.   (Read the Adrenal Info and How to Treat page on STTM, or more details in Chapter 6 in the new Revised STTM book.) 3) Use Krill Oil as a supplement. Krill Oil is an even better marine fish oil with rich amounts of Omega 3 fatty oils,  and research with even a low dose of 300 mg proves that it does a bang-up job in reducing inflammation as well as pain in joints associated with rheumatoid and osteoarthritis.  My own husband is on 1000 mg a day.

HAVE THE REVISED SECOND EDITION OF THE STTM BOOK YET? IT’S WORTH IT.

I am frankly extremely proud of the Revised Second Edition of the STTM book.  In spite of being a lot of hard work, it is good to see all the additions, details and corrections throughout the entire book.  There is much more on labs and how to read them, ferritin and iron, adrenal dysfunction and how to treat it, reverse T3 and how to treat it, plus a completely new chapter on good supplements and foods.  I added a little more hidden humor, which was fun.  There are now 36 more pages, too, and at the same price.  You can see more about the book here.  The book is ideal since you can bring that right into the doctor’s office with the information highlighted and bookmarked. As far as Kindle or other readers, yes, I’m already aware that some of you have requested it. But right now, it’s the book only.  But I’ll make announcements in the future as to what might be coming up.

P.S. Seeing this blog post via the email notification? If you have a comment to make, click on the title, which will take you directly to this blog post on the net, and comment there.

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

• 36 more pages, by and for patients, plus changes & additions in every single chapter
• Much more detail on adrenal and HPA dysfunction and how to treat it
• Recognizing and dealing with Reverse T3
• Identifying and treating gluten issues as related to Hashimotos disease
• Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
• More details on labwork preparation, plus what to look for in your results
• Why you need more than ferritin testing, and details on iron testing
• Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
• A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur.

Yesterday, I had a friendly and informative conversation with Philip Vogt, the President of Acella Pharmaceuticals, and Ellen Gettenberg, Director of Marketing.   Acella is the company which brought out a generic form of desiccated thyroid, and which first caught the eye of thyroid patients in November, 2010.  And I want to pass onto you what I learned:

Acella is different: Acella Pharmaceutical is not like the gigantic pharms we often hear about. Instead, they attempt to target the under-served markets, producing medications for particular niches of treatment, or those which are low-profile medications.  They also seek to produce lower-priced competitive versions of certain medications while keeping the quality.

How they make their version of desiccated thyroid: When it specifically comes to its desiccated thyroid, they go by older version “recipes” – using more dextrose (sugar) and less methylcellulose.  But in their case, the tablets are stated to contain NO cellulose.  That is actually good.  Their tablets are also not as hard-pressed as Armour seems to be now. I’d love to hear from folks who’ve been on Acella if they have tried to it sublingually, and what the results were.

The ingredients: Acella does a 65 mg tablet.  The desiccated thyroid is speculated to come from the same manufactured source as do Armour and Naturethroid. Each 65 mg grain contains 38 mg T4 and 9 mcg T3 (plus unmeasured amounts of T2, T1 and calcitonin). The inactive ingredients are calcium stearate, dextrose monohydrate, maltodextrin and mineral oil.

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

ABOUT THE RT3 ONLINE CALCULATOR on STTM: My brainy techs have added three more combinations to the calculator, so it is now ready-to-go to help you figure out your ratio: http://www.stopthethyroidmadness.com/rt3-ratio So far, the feedback is very positive and we have seemed to remove all kinks. REMEMBER: you need to put your Free T3/total T3 in first, then all the measurements will appear for the RT3.

WHEN TESTING YOUR THYROID LEVELS: remember NOT to take your desiccated thyroid, or your T3-only, before labs. The T3 rises consistently after you take it, giving you false-high reading and freaking your clueless doctor out.  **Picture doctor, eyes bugged out like a giant wasp, looking at lab result** With desiccated thyroid, the T3 will peak in approx. 2 hours; with T3-only, it can take approx 4 hours to peak.  Recommend labwork found here.

NEED A GOOD PATIENT GROUP OR ONE-ON-ONE CONSULTATION? Go here.  Of course, the groups are free and can be very helpful. Or, you can choose a paid consultation with Janie, which seems to be extremely helpful for those who want more immediate feedback and help.

TYPICAL QUESTIONS AND ANSWERS about thyroid, treatment, more issues:  www.stopthethyroidmadness.com/common-questions-answers