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. When low cortisol was confirmed, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were not, to allow thyroid hormones to reach the cells, and to give the pooped out adrenals a rest.
And success was achieved! When all other issues were discovered and treated, patients were finally able to heal their adrenals with cortisol use, wean off, and be successful in their continued treatment with desiccated thyroid! That success continues today!
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 a variety of issues related to better thyroid treatment, adrenal issues, low ferritin, and more. So here’s where you can read more, and in turn, take this important information into your doctors offices:
- All about the problem of adrenal fatigue
- How to treat
- Symptoms of having an adrenal problem
- The STTM book, which not only has more detail, but can be taken right into the doctor’s office
- Talk to other patients, including a group targeted for adrenal fatigue
*********************************************************
If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, as well as sign up to be a Follower of the Thyroid Patient Community Call, here.
This coming Thursday, January 7th, Dr. John C. Lowe DC, PLLC will be joining me for the Talkshoe THYROID PATIENT COMMUNITY CALL and it’s one you don’t want to miss.
Dr. Lowe has been highly respected by thyroid patients for years for the excellent information he has disseminated about better thyroid treatment on his website drlowe.com. In fact, he’s one of a handful of doctors that I mention with gratitude in the Acknowledgements of the Stop the Thyroid Madness book. His website and wise understanding played an empowering and self-educating role in the early movement by patients for better thyroid treatment with desiccated thyroid and better labs. You can read his own written biography here.
Mark your calender and set your cell phone alarm: the Community Call starts at 9 pm Eastern, 8 pm Central, 7 pm Mountain and 6 pm Pacific. You can log on anytime within 15 minutes before the call starts and participate in the Chat box. That same box will be right there during the entire call.
The entire live audio chat with Janie and Dr. Lowe will come right on your computer, so remember to turn your audio up.
Additionally, those who log in can also choose to call in and ask Dr. Lowe direct question. Don’t miss this great opportunity!
The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc
********************
See the blog post below for a very insightful Guest Blog Post by Amy about her role as an Undercover Thyroid Advocate. Below that, you can read how I was wrong about what it was like to be thyroidless, and several great comments.
The year of 2009 will long be remembered for two nightmares straight out of Twilight Zone for thyroid patients: 1) Armour desiccated thyroid by Forest Labs was reformulated with patients globally reported a return of symptoms and new frustrating ones, and 2) shortages of all US-made natural desiccated thyroid like Armour, Naturethroid and Westhroid occurred, as well as no more generics thanks to the FDA.
Additionally, as I write this, Naturethroid and Westhroid by RLC Labs are still hard to get–making too slow a return on pharmacy shelves which may not improve until 2010. You can read details and a good summary about this on about.com.
But there’s been a silver lining to this situation: Canada’s “Thyroid” by Erfa.
Many patients made a switch to this desiccated thyroid product, using online pharmacy websites and their prescriptions from their doctors. And overall, the experience of patients with Erfa’s Thyroid has been extremely positive.
I had a wonderful chat this week with Dr. Henri Knafo, the Director of Medical Affairs at Erfa Canada Inc. My first and most important question: Is there enough Thyroid for all your patient customers?? And I got an unequivocal “Yes” from Dr. Knafo. He explained there are no concerns with running out and they have plenty in stock, now and in the future. He stated that if their stock gets low from sudden demand, they can easily get more and quickly.
I also asked: Is shipping timely? Definitely yes, Dr. Knafo stated. But he also qualified that Erfa is overloaded with orders. And though they are keeping up, your prescription order can take time to process. But, he stated “Be Patient. It will arrive!”
What is going on with the FDA and Erfa? He underscored that the FDA is cooperating completely, and they see a good future with the FDA. They are completely tolerant, said Dr. Knafo, because they seem to understand the shortages. Erfa’s Thyroid is also completely approved and regulated by Health Canada. As far as the future and the FDA, Dr. Knafo strongly feels that once the FDA is reassured about desiccated thyroid, things will only get better for US patients with brands and availability. He feels that issues with the FDA are far more positive than many thyroid patients and leaders seem to get or want to see.
Do you see changes towards opinion of desiccated thyroid? Definitely, yes. Dr. Knafo recently attended a European medical conference with over 50 specialists and he saw many doctors not satisfied with Synthroid and noticing the better treatment with desiccated thyroid. “It’s booming in Europe”, he underscored about Erfa and desiccated thyroid “Even Endo’s are noticing”. He also said that Belgium was experiencing a huge medical trend away from T4 and towards desiccated thyroid.
Why has the cost of Erfa’s Thyroid gone up even more than 50%?? His explanation was three-fold: it was first a financial decision, since they have never made much of a profit on desiccated thyroid. Second, Health Canada requires a lot of expensive testing from Erfa on products. And third, since they buy their powdered desiccated thyroid from Europe, an increase in Euros meant they needed to increase the price.
Any final comments? Dr. Knafo clarified: Erfa has been making Thyroid for 30 years and not only will that continue, they will not change the formula. He thinks the sugar in Thyroid is what makes absorption so good, and that will continue as an ingredient just as it is. Nothing will change! To see ingredients of Erfa’s Thyroid and other brands, go here.
You can read more about Erfa from my September 2nd post. Thank you to Dr. Knafo for being so candid and informative!
See my post below about my mother, who lived her entire adult life undertreated on T4 with depression and electric shock treatment and had no internet to compare notes. If you have a relative from the past with a similar story, add the story to the Comments.
]]>*HO HO HO! Have a STTM book sent to someone you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!
Wish you could talk to others about relevant facts concerning the current shortage, the FDA’s actions with Time Caps Labs, DESI and the New Drug Application, clinical trials, and related concerns? Have important information to share?
A new group has just been created to work alongside other groups, including save natural thyroid. Smartly called the Coalition for Natural Desiccated Thyroid, it represents unity of concern and is created for patients, advocates, medical professionals, representatives of pharmaceuticals who manufacture desiccated thyroid, or anyone with an interest in the four aims of this group:
1) Sharing of factual information concerning natural desiccated thyroid
2) Discussion of current issues related to desiccated thyroid
3) Unity among all concerned
4) Coordination of grassroots action where needed.
The discussion, support and action of this group does not limit itself to any one group, advocate, website or forum, and welcomes any mention of information from websites, advocates, medical professionals or etc. which/who post about or have the same concerns as the aims above.
Join the group here: http://health.groups.yahoo.com/group/CoalitionForDesiccatedThyroid
]]>
With 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.
When I was ten years old, my mother had electric shock treatment.
The memory stands out in my mind like a beacon. And when my Dad brought her home, he took me aside and explained that my mama was not going to remember where things are for awhile, and we’d have to help her. That was especially true with the 4-legged sewing basket.
She eventually regained her memory. But she was never again the same bright and quick witted mother I used to have when I was younger.
Why was shock treatment done? To counter her mysterious ongoing and disabling depression. And this was her last option.
It didn’t work.
She lived on anti-depressants, specifically a high dose of Elavil, the rest of her compromised life.
And more than 40 years later, about a year after her death, a change in my own life with Armour helped me realize why she had to be dependent on an anti-depressant for so many years: Synthroid. My mother was on Synthroid almost her entire adult life—a medication, along with Levoxyl, Levothyroxine, Unithroid, Eltroxin, Levaxin, Norton, Eutrosig and Oroxine, which leaves nearly all patients with lingering hypothyroid symptoms, including one of the most common one: chronic on-going depression.
And a large body of doctors all around the world just don’t get it.
What brought this memory of my mother up in my mind? Because two days ago, I chatted with a gal on Synthroid. By all appearances, she seemed to be doing well, as some will make you think. She said she had enough energy, wasn’t losing her hair, and felt okay. But when I probed deeper, she admitted that her blood pressure was going too high (as happened to my mother on a T4-only med) and she had a problem with depression and was on Wellbutrin. Bingo.
See http://biopsychiatry.com/hypothyroidism.htm which is also here: http://www.theannals.com/cgi/content/abstract/34/10/1142
Want to be informed of these blog posts?? Curious what’s on Janie’s mind? Use the Notification feature on the bottom left of the links.
]]>Recently, after we watched a semi-scary movie about being suckered, a friend brought up my blog post of last July where I described a terrifyingly-real horror movie.
The plot: stunningly convince hundreds of millions of individuals worldwide that what is obvious, isn’t. i.e. it’s all in your head, you are adequately treated on Synthroid, Levoxyl, Eltroxin, Norton, et al, and not only that, we’ll bandaid your continuing problems with more medications.
A second plot: also completely hoodwink those with top notch higher medical educations and experience by churning out the the exact same poppycock, and reward their stupidity with gifts.
The central villian: Big Pharma, followed by the doctors who bought the lie
Exactly a year ago this month, Science Daily came out with an article, citing two York University researchers who estimated that the U.S. pharmaceutical industry spends almost twice as much on promotion as it does on research and development, contrary to the industry’s claim. In other words, the researchers estimated that $57.5 billion in US dollars was spent on pharmaceutical promotion in 2004–the year they were studying. Yes, I said BILLION.
Breaking that down, Big Pharma spent approximately $61,000 per physician in promotion of their products. And they concluded that both figures were UNDERestimates. In other words, they concluded that the US pharmaceutical industry is marketing-driven rather than “life-saving”.
And adding fuel to the fire: most doctors believe every thrust of that marketing. I recently participated in comments with other wonderful patients in response to a DO/Endocrinologist, Dr. Thomas Repas, who has clearly bought the Big Pharma marketing when it comes to levothyroxine. You can read his posts and our comments here, here, and here. Dr. Repas is exactly the kind of doctor who has starred in our horror movie, and the kind of doctor that patients have lamented about for years. Read the Give Me a Break list of comments made by doctors, as well as further comments on the January 1st blog.
But Dr. Repas is in good company. Doctors have believed the Big Pharma lie about T4-only medications, and against desiccated thyroid like Armour, Naturethroid, etc. for 50 years. In the patient-to-patient Stop the Thyroid Madness book, you can read about the first tableting of Synthroid in 1955 and the strategic and successful promotion of T4-only, in spite of the fact that T4 was known to be unstable for decades.
And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothyroxine T4-only treatment. My own mother was suckered, and I was suckered. And until patients started to make a huge push for desiccated thyroid treatment the last few years, nearly every single doctor around the world had been suckered.
We still have a way to go. But we’ll get there, bit by bit.
]]>
In honor of 2009, a year we hope to see bold changes in the medical system, Stop the Thyroid Madness presents the Fifteen Most Annoying Phrases From the Mouths of Doctors. (Note that the word “Armour” has been used for simplicity sake; any prescription-grade desiccated thyroid product can be inserted there.) Here’s raising our New Year’s stemmed glasses to change!
]]>15) I’ll see you in eight weeks.
14) Here’s a script for [insert any non-thyroid medication to bandaid continuing hypo symptom]
13) The free T3 lab test is not necessary.
12) Your symptoms do not warrant a thyroid medication.
11) You’re tired because you are [insert any label like "a mother" "menopausal", etc]
10) That has nothing to do with your thyroid.
9) I can find nothing wrong with you.
8 ) You need to eat less and exercise more.
7) Your TSH is too low.
6) The TSH test is [insert any positive description, like "a reliable marker" or "sensitive measure"]
5) I do not believe in Armour.
4) Armour is [insert any negative adjective/description like "unstable" or "hard to regulate"]
3) You’re depressed.
2) You are hyper.….and tah-dah, the #1 most annoying phrase that comes out of the mouth of a doctor:
1) You are normal.
And a slew of thyroid patients around the world, as well as a growing body of doctors, would completely disagree with this post.
Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”
Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”
He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features, 2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)
“Iatrogenic hyperthyroidism”?? Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.
***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”
THUD.
So here is my 6-point response to any doctor who might share these beliefs:
1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism. The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).
2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.
3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.
4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”
5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.
6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.
“I’m sorry. It IS your thyroid” is exactly what patients need to hear.
]]>
Adipex and Adderol are both central nervous system stimulants, and I can’t comment one way or the other. But the mention of Armour thyroid as “not indicated” is potentially worrisome, especially with similar disciplinary actions brought upon well-liked and wise doctors like Peatfield and Skinner of the UK, Derry of Canada, and Springer in the US–all who dared to make obvious symptoms more important than ink spots on a piece of paper.
Take Kymm, a 45 year old woman. She has manifested hypothyroid symptoms for 15 years since the birth of her daughter. Yet during those entire 15 years, her TSH lab result has been completely “normal”…i.e. hypothyroidism has never been “indicated” based on the typical and widespread gold standard of diagnosis: the TSH. But she has never, ever been normal with 15 years of easy weight gain, chronic depression, thinning hair, rising cholesterol, and other clear hypothyroid symptoms. And she has in fact started on Armour…and is soaring.
Kymm is not an oddity. Thyroid patients on internet groups report going years with a normal TSH, no diagnosis, yet clear symptoms which are ignored by their TSH-obsessed doctors. So their doctors may have avoided disciplinary action, but did they truly practise the art and science of healing??
]]>