When the shortages hit the United States for natural desiccated thyroid in 2009, we all had to figure out which way to turn, since the 110-year-old natural desiccated thyroid has been a far, far better treatment for our hypothyroid state than levothyroxine T4-only such as Synthroid, Levoxyl, Eltroxin, Oroxine, etc.
Additionally, Armour thyroid by Forest Labs was reformulated in early 2009, and patients worldwide reported a return of symptoms as well a stress on their adrenals. So patients started an exodus away from Armour.
Luckily, the FDA loosened restrictions and allowed us to order the Canadian brand by Erfa Canada Inc, called simply “Thyroid”. Erfa’s Thyroid proved to be an excellent desiccated thyroid for most, especially if they raised high enough once again to rid them of symptoms. And since it contains sucrose, patients have been able to do it sublingually–a method which is not necessary for benefits, but is preferred by many.
I gathered a list of known Canadian online pharmacies, which you can view on the Options for Thyroid Treatment page.
And just recently, I sought opinions from patients about the pharmacies they have used:
Universal Drugstore aka Canadian Pharmacy Online: This pharmacy received the greatest kudos from US patients and with the best prices.
- Awesome – good prices and fast, friendly service. Will call your drug store and get your Armour script transferred.
- Faxed my prescription and it was mailed the next day. I believe it took a week and a few days to arrive to Florida.
- Great customer service, easy ordering, and was cheaper than paying the co-pay with my insurance. It takes about 10 to 14 business days to get your prescription, according to the company, but mine came sooner than that and it was the holiday mail rush season!
- Rapid service, excellent customer service, email reminders to refill, coupons
- They had the best price and were very professional and efficient. My order arrived within ten days.
- I paid $43.25 for 200 60 mg pills
- Online forms were easy. I faxed my prescriptions and received my Thyroid in twelve days for $7 shipping
- Easy to register and the customer service was excellent. I faxed my prescription. A pharmacist called me to see if I had any questions. I paid $45.63 including shipping for 100 60mg pills
- Excellent customer service, great prices, two week arrival from date of order, wish pharmacies here were this good.
- Good experience, prompt (7-10) days service getting my Erfa thyroid
See more recommendations in the Comments section for this post. And I’m going to hope that no pharmacy “uses” this to advertise their pharmacy. This is FOR PATIENT COMMENTS ONLY.
What has been your experience with online Canadian Pharmacies? Do I need to remove any from the Options for Thyroid Treatment for any reason? Do I need to add any?
ARE YOU A CANADIAN PATIENT ON DESICCATED THYROID? Use the Contact Me form if you’d like to be interviewed by a well-known Canadian reporter about desiccated thyroid in Canada. I’ll need your name and email address. You need to contact me before Monday, January 25.
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Recent blog posts worth reading:
Read a guy’s email to me about his experience with doctors being afraid of HC, which patients know is safe and WORKS!
Will the FDA be more transparent for thyroid patients on desiccated thyroid with their new initiative?
Listen to the second interview, Episode 9, I had with Dr. John C. Lowe. What a brilliant man!
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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
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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.
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. 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 as well as the TSH lab test. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.
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.
And she did the T4-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 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.
Also below, read about Jane Pauley and the health issues that make you wonder, since they can all be connected to a thyroid problem, either undiagnosed or untreated. Below that, you’ll see posts about Oprah, Reverse T3, the problem of cellulose in our meds, the desiccated thyroid shortages, and more.
]]>*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!
As a thyroid patient who was profoundly harmed by the use of Synthroid and Levoxyl in the treatment of my hypothyroidism, and as an activist who sees this same harmful truth with potentially millions of other patients, I find this recent news interesting.
But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications. Will they?
Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.
Statements I gleaned from this initiative include:
1. Today, tens of millions of people in the United States depend on prescription and over‐the‐counter (OTC) medications to sustain their health—as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.
2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.
3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.
4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.
This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted: Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.
But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.
Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.
In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use. It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.
Listen to us, FDA. Listen and be wise.
P.S. See the blog post below about a genetic reason why so many do lousy on T4.
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Last 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!
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I once cracked open an egg to find it had TWO shells. And that oddity is equivalent to finding an Endocrinologist who supports the use of natural desiccated thyroid.
Voila!! ~~ you can listen and talk to an Endo who does just that on this Thursday evening’s popular THYROID PATIENT COMMUNITY CALL on TalkShoe.
His name is Dr. Gary Pepper, Board Certified by the American Boards of Internal Medicine, and Endocrinology and Metabolism and editor-in-chief of metabolism.com. Besides serving many years in distinguished leadership positions, he was selected as one of the top 100 physicians in New York City by New York Magazine and is also a featured expert with CNBC and ivillage on topics of diabetes and endocrinology. He states: Almost daily I reread the words of Sir William Osler: “It’s often more important to know what sort of person this disease has than to know what disease the person has.”
i.e. this is one of a rare but growing breed of doctors who supports what we as thyroid patients already know–that desiccated thyroid is a five-star hypothyroid treatment and T4-only is about as effective as a doughnut diet for most. And lo and behold, Dr. Pepper is an Endocrinologist! Of course, I can give no guarantees how he is as a doctor in his own office, but I do appreciate his understanding that T4-only treatment may not be the best way to treat hypo.
Join us this Thursday evening, 6 pm Pacific, 7 pm Mountain, 8 pm Central and 9 pm Eastern by clicking on the first link above titled Thyroid Patient Community Call. When on that page, you’ll also see the exact day and time left before the call. You’ll be able to listen to the call right on your computer, or you can dial in and listen on your phone. There is also an option to talk one-on-one live with Dr. Pepper and Janie.
And remember: neither I or Dr. Pepper can offer personal medical advice or provide individual specific counseling. Those are between you and your personal physician.
***P.S. PharmaTimes this month reported that this quarter’s sales of Synthroid (levothyroxine) were up 3.7% to $134 million by Abbott Labs. Sad for most of those patients. If you know of someone who has been put on a T4 med, send them here: www.stopthethyroidmadness.com/t4-only-meds-dont-work or to the audio page here: www.stopthethyroidmadness.com/audio-shorts (third one down).
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Sometimes there is a silver lining with the storm cloud of backordered US desiccated thyroid.
Erfa, the makers of the Canadian version of natural desiccated thyroid, simply called “Thyroid”, has recently announced that the FDA is not requiring the extensive FDA Form 1572 from US citizens and their doctors when they fill their prescriptions from Erfa directly. i.e. it’s now a lot easier to get your prescription filled directly from them.
http://www.erfa-sa.com/thyroid_usa.htm
And those who have started to use Erfa’s Thyroid report being quite pleased. A cherry on top is that Thyroid has that old sweet taste we used to all like with the old Armour, and it can be done sublingually as well! You can see the ingredients here.
Also, I am continuing to get emails from patients that both Armour and Naturethroid is starting to appear on pharmacy shelves, even if in small quantities. I’m personally not too excited about Armour reappearing if Forest continues to make the reformulated version. Just too many patients reporting a return of hypo symptoms, even when they raise it, plus new symptoms of undertreatment and/or challenged adrenals thanks to the reformulated version. Sad. Oh how we will all miss the old Armour.
In the meantime, here are options for thyroid treatment we all have until we see a good return of desiccated thyroid, including Naturethroid and Westhroid. They are all far, far better than being on T4 alone like Synthroid, Levoxyl, levothyroxine, et al. You’ll also note compounded thyroid, which can be a good option, and you can read about on a recent blog post. Australians happily use compounded in their own country. Any option you and your doctor choose may mean a readjustment by your body, by the way.
Want to talk to other patients on how they are dealing with the shortages? Join the Coalition for Desiccated Thyroid. Or if you simply need patient feedback about your hypothyroidism, go to the Talk to Others page. Remember that no patient group is meant to be a substitute for your relationship with your doctor.
**The next Thyroid Patient Community Call will be held Thursday Oct. 8th on TalkShoe, and our topic will be iodine and your thyroid with patient expert Stephanie Buist. Come join us and listen right on your computer, or you can also talk live to Stephanie or Janie with your questions.
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I have been driving all day, bringing my husband back home after serious hand surgery yesterday. And while I was away from the computer, I received the below via the Contact Me form of STTM, written by Mary Budinger for the Arizona Net News journal, September 16, 2009:
Dr. Mark Starr’s office team wanted to send over a portion of an article just written for an Arizona health magazine:
Desiccated thyroid from pigs is a bio-identical, complete hormone preparation, containing the entire spectrum of thyroid hormones including T4, T3, T2, and T1 that are in the human thyroid gland.
Current FDA approved thyroid medications include Synthroid, Unithroid, Levoxyl, and Levothyroxine (all only contain T4), and Cytomel (only T3). These hormones are synthetic and contain only a portion of the thyroid’s hormones.
Dr. Mark Starr of Phoenix, Arizona, said patients have called him, frantic that desiccated thyroid is unavailable. “It is so key to my practice, I have enough for my patients. So far, it appears that when supply catches up with demand in a few months, the shortage will be over.”
Dr. Starr is the author of “Hypothyroidism-Type 2.” He said synthetic thyroid acts energetically differently in the body. “All living things have a right spin, and synthetic medications have a left spin. The desiccated thyroid is better tolerated.”
Dr. Broda Barnes did a study that revealed a relative intolerance to a synthetic thyroid product containing T3 and T4 (Thyrolar). One-fifth of the patients who had done well on desiccated thyroid developed rapid heart beats and palpitations when switched to Thyrolar. Dr. Barnes also did a major research study on desiccated thyroid that involved thousands of patients over 30 years; it showed a 94 percent reduction in the number of expected heart attacks. This study is the subject of the 1976 book “Solved: The Riddle of Heart Attacks.”
Lipitor is the best selling drug in the world. But for the first half of the 20th century, desiccated thyroid was the standard treatment for high cholesterol. Elevated cholesterol and triglycerides are one of the myriad symptoms of hypothyroidism. Dr. Barnes’ book included a chapter entitled “The Demise of the Cholesterol Theory.” Desiccated thyroid normalized cholesterol and triglycerides in 95% of the patients Dr. Barnes treated. The 5% who had persistently elevated levels had no increased incidence of heart attacks. Desiccated thyroid therapy also resolved a long list of other hypothyroid symptoms such as fatigue, cold intolerance, joint and muscle pain, dry skin, inability to lose weight, headaches, and menstrual problems. One of the most important benefits that Dr. Barnes demonstrated in studies on both animals and his patients was that desiccated thyroid increases immunity and allows the body to fight off infections. As we come into swine flu season, this is particularly important.”
Dr. Starr, I love the way you put it: “All living things have a right spin, and synthetic medications have a left spin. The desiccated thyroid is better tolerated.” And that’s exactly why the website Stop the Thyroid Madness exists–patients all over the world have found out what a far better “right spin” treatment desiccated thyroid has been for them! So we present this information, hoping that more and more patients can learn from the paths walked before them, and take this right into their doctors offices.
And about Thyrolar, which is a combination of synthetic T4 and synthetic T3: we’re glad it exists. But…there have been numerous patients over the years who tried the combination of synthetic t3/ synthetic T4, and who then switched to desiccated thyroid. And they identically report on the NTH thyroid group that they got far better results from desiccated thyroid. That is powerful information.
And yes, Dr. Starr, we are looking forward for supply to catch up, because natural desiccated thyroid is a godsend.
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Join the Thyroid Patient Community Call on Talk Shoe this Friday. UPDATE: the President of Hook’s Apothecary, a compounding pharmacy that serves Illinois and Indiana, will be in the chat to talk about compounding desiccated thyroid.
Also check out the post below concerning possible hints that we are closer to seeing more desiccated thyroid on our shelves?
There once was a gnarly, bottom-scratching and tuna-breathed man who terrorized a neighborhood as if he was above the law. He intimidated people, used threats to stop others from telling the truth about his actions, and he mooned his hairy buttamous to anyone he didn’t like. He brought other criminals into his large house, took bribes to do some of their own dirty work, and stole every single vegetable and fruit from all his neighbors gardens.
Finally, all the fearful, frustrated and hungry neighbors got angry, sick and tired of it all. So they sent him emails, letters and phone calls, asking him to stop what he was doing, and explaining how he was hurting their lives and well-being, and speculated how he was going to do this or that.
And do you think he stopped doing what he always did?
Finally, the neighbors got wise. They reached out to the police, to local radio and TV stations, to the newspaper, and even to local political leaders. They stated the facts as they knew them, how specific actions affected their lives, how they had speculations that they couldn’t prove but were quite uncomfortable…and they made sure everyone knew what was going on to get the help and support they needed.
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For over 100 years, thyroid patient lives have made a huge and positive turn-around on natural porcine desiccated thyroid, a superior, safe, and effective medication as expressed by all our lives for over a century. But today, we face a crisis.
The most popular desiccated thyroid brand, Armour, was reformulated by 2009 and most patients reported a return of their hypothyroid symptoms. Then, the only other major pharmaceutical, RLC Labs, has their quality Naturethroid and Westhroid on backorder in August of 2009. The only North American makers of the desiccated powder, American Laboratories, is out.
And finally, the remaining two generic makers, Time Caps Labs and Major Pharmaceuticals, are told to cease production by the FDA.
We are now without desiccated thyroid other than the remaining 10 tablets there, or 5 tablets here. They will all be gone soon.
The facts we know are this: because of the 1962 “Drug Efficacy Amendment”, the FDA is suddenly demanding pharmaceutical drug manufacturers (with medications which have been used successfully for 80-110 years) provide proof of the effectiveness and safety of their drugs before they can receive true FDA approval, aka potential clinical trials and the data that results. i.e. 110 years of patient success, and a website like Stop the Thyroid Madness, and testimonies all over the net and in patient groups with desiccated thyroid…is somehow…just…not…enough. What is obvious, is not enough.
In other words, they want proof of efficacy and safety of desiccated thyroid—a medication which has a safe and effective track record in a huge body of patients for 110 years…in the same way they give an FDA-stamp-of-approval on a whole variety of drugs which, in 2004, killed 783,936 individuals per year (according to the article Death by Medicine, co-authored by By Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD).
Does THAT make any sense to you?
And now, because there is hint that they may require RLC Labs to apply for a New Drug Application…and because we wonder if that will mean expensive and drawn out clinical testing to provide data…and because we wonder if they will allow RLC to continue manufacturing our only good supply of desiccated thyroid which saves our lives in a completely healthy way…we are left with a lot of uncomfortable and unanswered questions.
Of course, we can admit that all the above is pure speculation. We don’t know what will happen until it happens. But we are strongly uncomfortable with the unknowns, frustrated by the possibilities, and scared to death we might lose the only medication which has removed our lingering and debilitating symptoms while we were once on synthetic T4–aka Synthroid, Levoxyl, levothyroxine, etc.
And by the way, synthetic T4 is an FDA-approved medication which has left most of us sick or with lingering symptoms to our own degree and intensity for YEARS. Perhaps THAT is what you need to write the FDA about.
So do we email the FDA about this situation?? I am of the belief that writing/emailing the FDA is no different than asking the neighborhood ogre to change. I could be wrong, but it is my deep suspicion. In fact, I am suspicious that the onslaught of communication with the FDA is going to do more harm than good…if it hasn’t already…just as writing and emailing the neighborhood ogre would probably cause him to laugh and do even MORE harm.
So what seems the best and most logical action to take with our current situation? Write/email your senators. Write/email your representatives. Write/email newscasters, talk show hosts, radio personalities, newspapers of merit, and anyone who has the power to spread the word. In my mind, we cannot expect to face what may be with power unless we inform the world of our plight ahead of time.
How to say what we need to say? I think, for our integrity in the eyes of whom we speak/email/write to, it’s important to state facts first and foremost. For me, if I need to mention speculation, I turn them into questions: Will RLC be able to afford clinical trials? Will the FDA stop all desiccated thyroid? You may not agree but that’s what seems wise for me.
I have compiled a list of particular congresspersons who just last year, made a resolution against the FDA. You will see a list of those supporters at the bottom of the page with their contact info. Email them. You will also find links to contact each and every other political office. If I have missed something, let me know and I’ll add it.
I have also compiled a simple template letter you can use, or change exactly as you need it changed, for these emails. It will not fit every single individual who uses it, so change it as you may. But keep it short and succinct. Too much to read will turn off the reader.
I have tried hard in this post to communicate my thoughts and intuition. I also still have some strong hope and faith that this IS going to work out, one way or the other. I’m just not into fear-mongering based on speculation. Some of you may not agree with my sentiment, but that’s okay. And some of you may agree that it’s time to strongly communicate with our congresspersons, and I will hope you follow through. All of us need to follow through. I need to follow through. You need to follow through.
NEED OPTIONS FOR THYROID TREATMENT during this hard time? Go here. You’ll also find several Canadian Pharmacies to use with a prescription, as well, that is much easier than ordering directly from Erfa.
NEED A GOOD DOCTOR? Go here.
NEW TO DESICCATED THYROID? Here’s everything patients have learned.
*Want to be informed of this blog posts? Curious what’s on Janie’s mind? Use the notifications on the left below the links.
*Spread the word! STTM T-shirts are 50% off. I love sales.
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I 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.
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***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?