Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize,  self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

• Is self-treatment one  of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
• Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors.  The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more.  It’s not a pretty picture.
• Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less  than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
• Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms.  This is a risk for self-treatment.
• Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation.  It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice.  But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
• Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent  points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
• Has one negative journal article about someone who self-treated “resulted in desiccated thyroid  getting greater scrutiny by the FDA?” The answer can easily be:  no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
• Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it.  STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
2. a new debilitating condition like adrenal fatigue,
3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional,  negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere.

But last week, the ombudsman of the FDA’s  Center for Drug Evaluation and Research (CDER), came out with their 2009 report that I found interesting. The Ombudsman are those who receive and impartially look at any communications from patients to the FDA about medications.

On the fourth page, you find this under the heading Drug Shortages: Desiccated Natural Thyroid does not have FDA approval and it’s availability became quite limited in 2009. Many consumers complained to the ombudsman because of their preference of desiccated natural thyroid as thyroid replacement medication over the FDA approved synthetic versions.

Of course, the above gives a potentially false impression that the shortages were due to the lack of FDA approval–and reasons for this stupidity concerning “FDA-approval” are explained here.

To the contrary, last years shortages may be explained by production issues with the North American producer of desiccated thyroid powder, as well as demand being greater than supply thanks to patients finding out about the superiority of desiccated thyroid over T4-only meds like Synthroid.  The STTM website and book is working, as are numerous good patient groups and forums!

But the above reveals that they are hearing thyroid patients speak.

So with this being a somewhat silent period, waiting to see when the FDA will require RLC (Naturethroid) to do ridiculously expensive clinical trials to prove what patients have already known for 110 years–that desiccated thyroid is safe and effective–it can be a GOOD time to continue communication with the FDA. How? By reporting YOUR EXPERIENCE AND PROBLEMS with T4 for their 2010 report next year. i.e. it will serve to cement why so many did call to state their preference. Here’s how:

• Call or fax them and report what happened to you on T4: 1–800-332‑1088
• Fill out their form: http://www.fda.gov/downloads/Safety/MedWatch/DownloadForms/UCM082725.pdf and fax or mail to MedWatch; 5600 Fishers Lane; Rockville, MD 20852–9787
• Contact the FDA rep for your state: http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

If you had depression or other psychological issues while on T4, report it.

If you have rising cholesterol, low ferritin, and/or low B12 because of T4, report it.

If you had dry skin or hair, digestive issues, or aches and pains, report them.

If the quality of your life was lowered on T4, report it, outline it, detail it.

If you got adrenal stress because of being on T4, underscore that lousy truth to them.

For Immediate Release: March 12, 2010

FDA Task Force Seeks Public Comments on Increasing Transparency With Regulated Industry

As part of the final phase of its transparency initiative, the U.S. Food and Drug Administration is seeking comment from the public and other interested stakeholders on how the agency can increase transparency in its interactions with regulated industry.

Posted in the March 12, 2010, Federal Register, the request for electronic or written comments has a deadline of April 12, 2010.

The FDA regulates products responsible for about 25 percent of the gross national product of the United States and the industries responsible for these products. Products regulated by the agency – biologics and blood products, human drugs, foods, medical devices, radiation-emitting devices, and veterinary medicines – are integral to public health and to the U.S. economy.

The agency formed an internal Transparency Task Force in response to the Obama Administration’s commitment to achieve “an unprecedented level of openness in Government.” The Task Force is developing recommendations for making information about FDA activities and decisions more useful, understandable, and readily available, while appropriately protecting confidential information.

The Task Force held public meetings in June 2009 and November 2009. Based upon input received thus far, the Transparency Initiative has been divided into three phases. The first phase, creating a Web-based resource called “FDA Basics” to provide information on commonly misunderstood aspects of the agency, has been completed. The second phase, improving FDA’s disclosure of information to the public, is underway and the agency intends to issue draft proposals for public comment soon.

The request for comment for the third phase follows a series of listening sessions with members of regulated industry in January 2010. Transcripts and summaries of those listening sessions are available at http://www.fda.gov/transparency and at http://www.regulations.gov.

For this final phase, the FDA is particularly interested in comments from all interested parties on how the agency can make improvements in the following areas:

• Training and education for regulated industry about the FDA regulatory process in general and/or about specific new requirements
• The guidance development process
• Maintaining open channels of communication with industry routinely and during crises
• Providing useful and timely answers to industry questions about specific regulatory issues

Electronic comments may be submitted to http://www.regulations.gov.  Submit written comments to the Division of Dockets Management (HFA–305), Food and Drug Administration, 5630 Fishers Lane, Room 1061, Rockville, Md., 20852. All comments should be identified with docket number FDA–2009–N–0247.

For more information:

• March 12, 2010 Federal Register Notice
• FDA Transparency Task Force Web Page
• FDA Basics Web Page
• FDA Transparency blog: http://fdatransparencyblog.fda.gov/2010/03/final-phase-of-the-transparency-initiative-we-want-your-ideas.html
• How did we get to where we are with the FDA’s actions towards desiccated thyroid today? Go here.

And the anger many have felt about missed years of our lives because of such a lousy treatment has also translated to ill feelings towards a particular pharmaceutical: Abbott Laboratories. Abbott Labs has put hundreds of millions of dollars in what patients deem “brainwashing” of doctors, especially Endodrinologists, about Synthroid for years.

But I recently found a little news piece, in the form of the following video, which at least puts just a slight positive note to the term “Abbott Laboratories”, even if the name conjurs up a bit of nausea in the guts of informed thyroid patients:   http://www.youtube.com/watch?v=O8o-e-iLsUM Hope you enjoy the irony of it the way I did.  lol. Her name was Grace Groner, the secret Millionaire.

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Getting older and becoming hypothyroid: Below this post, you’ll see information that can affect your parents, relatives, spouses and friends and how they may face the same run-around we have all had to deal with—the lousy TSH lab test, being put on all sorts of band-aid drugs like statins, anti-depressants, blood pressure meds and more, or being put on a T4 med like Synthroid.  Go here.

FDA and shortages: I also mention above about a recent statement by the FDA:  Forest reports manufacturing issues involving the raw material and RLC reports increased demand. FDA has not ordered Forest or RLC to remove these thyroid (desiccated) tablets from the market. A few patients are suspicious enough of the FDA to feel it means nothing.  Others, and I am one, have honestly felt like we simply had a shortage of desiccated thyroid, not a conspiracy by the FDA to remove it.  So I found that statement confirming, even if there can be more to the story. But time will tell.

Naturethroid: Here you can read information about this med returning to pharmacies around the country, and what might have changed in the tablets. Once again, pharmaceuticals are not telling us what is going on ahead of time, and it’s aggravating when we discover changes in our medications. Thyroid patients do not care to be treated like buffoons. I suspect that pharmaceuticals are guided to say so little because of legal advice. It’s still aggravating.

Why do I rarely mention Armour anymore? Because it doesn’t seem worth my time since it was reformulated. Too many patients continue to report lingering symptoms, even occurring months after they thought they were doing great on it.  And too many report that after they switched to Erfa’s “Thyroid”, Naturethroid or compounded with acidolpholus as a filler,  they saw a resolution of those lingering symptoms.

Another reason to improve your Vit. D levels: Research shows that low levels of Vit. D in your blood can result in increased fat deposits around your waist and other areas.  From the Diabetes Journal.

And getting older increases the incidence of thyroid disease.

Even worse, those who acquire it at an older age are probably going to go through the same bunk and bull those younger have gone through–having depression, rising cholesterol, osteoporosis or ostepenia, weight gain, easy fatigue, couch potato syndrome, dry skin and hair, plus more––all classic symptoms of undiagnosed or undertreated hypothyroidism.

But older folks are told it’s all just part of aging so here’s your latest tablet for your handy-dandy Wal Mart pill box.

I recently found a great blog by Pam whose Feb. 23rd, 2010 post is titled Older Women and Low Thyroid. She turned 65 in 2009 (and she looks a lot younger) and writes how she found herself with hypothyroid at a later age as well.  And Pam is WAY ahead of the game in her knowledge. She understands that most older folks are put on Synthroid (which can be a lousy way to treat hypothyroidism for many), that getting older means conversion from T4 to T3 can be more difficult,  that being on desiccated thyroid or T3-only just might be the better treatment, and you can get adrenal fatigue at an older age as well (thanks to poor treatment with T4, the TSH lab test, or being underdosed even on desiccated thyroid).

You can read Pam’s post here, as well as about the phone call from her friend who is 50 lbs overweight, has brain fog, is out of work, has no energy…and voila–is on Synthroid so it can’t POSSIBLY be her thyroid. Sad. In fact, what has happened to Pam’s friend is what I keep stating to those who feel they are just doing peachy on T4: watch out, because as you age, the truth about T4 will reveal itself!

Pam, I love your blog posts, and I’m going to hope to see more of those in the “venerable age range” be just as wise as you are!!

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FDA HAS MADE A STATEMENT ABOUT NATURAL DESICCATED THYROID: Just before I was going to plop into my bed for the evening, I checked my notifications to discover that right on the FDA website and their 2010 Drug Shortages page (3rd column up from bottom), it states: Forest reports manufacturing issues involving the raw material and RLC reports increased demand. FDA has not ordered Forest or RLC to remove these thyroid (desiccated) tablets from the market. BINGO. I’ve been waiting for this for months, because though websites and groups were formed last year as if we needed to “rescue” desiccated thyroid from being banned, I couldn’t join the fearful rally of a few because my gut was telling me something quite different.  And a few others, I discovered, had the same feeling.  And hooray! Our guts were right on!

Does this mean the FDA “gets it” about desiccated thyroid? Maybe, or maybe not. Yes, their timing WAS awful last year with Time Caps Labs, right when we were starting a shortage. And there does appear to be some kind of future requirement “proving” the safety and efficacy of dess. thyroid–two things we ALREADY KNOW from 110 years of safe and effective use. Duhhh on the FDA. But it’s FAR more hopeful now, and realistic, and will hopefully promote more reasonable thinking from now on.

Onward and upward, folks.

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Naturethroid is coming back in pharmacies all over the US! See the blog post below or here for information about  the “new” Naturethroid.

(If you are reading this via the Newsletter email notification, just click on the title of this blog post to come directly to the site where you can Comment).

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

Pharmacies Online:

• 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

Cross Border Pharmacy:

• Excellent customer service, great prices, two week arrival from date of order, wish pharmacies here were this good.

Canada Drugs Online:

• 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!

Of course, this doesn’t mean thyroid patients can stop what seems like an inane decision to require makers of desiccated thyroid to “prove” , via expensive clinical trials, that it’s a safe and effective medication. RLC Labs, for example, the makers of Naturethroid and Westhroid, will be affected.  Over 110 years of patient use, with 70 years by RLC, certainly reveal it’s a safe and effective treatment. But at least this transparency initiative will “potentially”  give us better information about the process. We’ll see.

About the upcoming Part 2 with Dr. Lowe (see the blog post right below this): Some folks were booted off last Thursday and had to quickly get back on. The problem is when you get back on, you may lose your ability to chat.  i.e. the system stops the chat ability once there are 300 individuals already on the chat.  You can listen, but you can’t chat after 300 are on.

So there are three things you can do to prevent being booted off and having to get back on:  first, make sure you have closed anything else on your computer–i.e only Talkshoe should be up. Second, make sure no other programs are running in the background, or will come on, like your anti-virus, and 3) ahead of time, download Live Pro from Talkshoe and use that. It’s more stable.

I, in turn, will be doing a strategy to strengthen this call from boots.  Additionally, if necessary, some who aren’t chatting out of the first 300 will have their option changed to no-chat to allow those who came in latter to do it.  It’s not personal because I don’t know who a lot of you are. It’s just spreading the ability into the call.

Do you take regular aspirin? Just as we warn about swallowing your meds when you have just eaten anything with calcium, iron or estrogen (they bind the thyroid hormones), you need to be aware that aspirin can have a negative affect on your thyroid levels, as well.  i.e. though it may help lower high thyroid levels, it’s not good for your thyroid treatment if you regularly take it.

How did we get to where we are with the FDA’s actions towards desiccated thyroid today? Go here.

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can prescribe. He’s a thyroid and fibro “researcher” with good knowledge about T3,  fibro, metabolism, supplements etc. Many questions have been coming in which are already answered on STTM, or are more targeted to a practicing physician, not a researcher. FYI.

On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th.  Join us for Part 2!

Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time answering  your specific questions. Check out his websites above to get an idea what his expertise is, which includes the use of T3,  Hashimotos autoimmune thyroid disease, iodine, fibromyalgia, the tyranny of the TSH lab test, good supplements, the FDA, and more.

So here’s your chance: think of one or two questions you’d like to hear him answer. Please, if you have more more than two,  narrow them down to the two most important, and keep them brief.  No exceptions. Two max only, and brief.  Then use the Comments below to post them.  Be sure and check out if your questions have already been asked in other comments.

I’ll be collecting the questions ahead of time and will let him preview them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some reported being booted off and having to quickly rejoin. One step that may help is to download the Talk Shoe Live Pro ahead of time (takes 25 minutes for some) and use that software during the call, since it gives you far more stability.  Also, make SURE you have everything else closed and/or not running on your computer at the same time you are in the Talkshoe call. I will also be chatting with Talkshoe support and will get more ideas.

Also, don’t wait until the call occurs to mention your question. We found it difficult to try collecting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your question here.

And finally, at a certain point of those who join (after 300 on chat), Talkshoe participants are automatically unable to post on the chat. You can listen, but no chatting. So if you want to chat, join as soon as the Call opens up, which is 15 minutes before the actual audio begins. Times for the audio are 9 pm Eastern, 8 pm Central, 7 Mountain, and 6 pm Pacific.

The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below those about Lowe 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.

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!

(This post garnered a lot of attention, up to FIFTY comments just a few hours after it went up. People are very interested in sharing their experiences in coping with the shortages! See below and add your own.)

This year will go down in history as shockingly miserable for enlightened thyroid patients on natural desiccated thyroid.

First came a reformulation in the most popular brand–Armour by Forest Labs. Patients worldwide in groups and forums reported a serious return of their hypothyroid symptoms on this product. A huge disappointment.

Second came the production shutdown of the two generic makers of desiccated thyroid: Time Caps Labs and Major Pharmaceuticals. It’s the first step in the FDA’s compliance plan to corral all grandfathered-in drugs (drugs already in existence when the the FDA was created in 1938) and make them each prove the efficacy and safety of their medication via very expensive clinical trials.  i.e. over 110 years of safe and effective use of desiccated thyroid is not enough for the FDA?? We are still waiting to see the outcome of that plan with RLC  and Forest Labs.–the two who were actually in existence before 1938.

Third came demand being greater than supply and shortages. Because of informative patient websites like Stop the Thyroid Madness,  Sheila’s TPA-UK, Lyn’s ThyroidUK, Stephanie’s Natural Thyroid Choices, some areas of about.com (and other good websites I don’t mean to miss here), plus many fine patient forums and groups,  patients found out why they had continuing symptoms on T4 thyroxine, and demand for natural desiccated thyroid grew exponentially.

STTM then created a list of options for all thyroid patients until the shortages resolved themselves, and also created CDT (Coalition for Desiccated Thyroid) where patients could discuss alternatives in a supportive and factual atmosphere.

And we’ve seen some interesting experiences and comments:

The new Armour: One grain tabs started to appear on some pharmacy shelves the past month.  Other pharmacies have still been waiting.  Many patients appear to have switched to other alternatives, though. One gal still on it feels she is finding success by adding T3 to the amount of new Armour she is on.  Time will tell if patients can ever find success with the newly formulated Armour, and most feel it’s a huge loss.

Naturethroid and Westhroid: Patients reporting on their switch to either of RLC Lab’s two identical products report doing well, having to raise it slightly or lower it slightly, or just not liking them at all. Others have had a hard time finding it on their pharmacy shelves, but have been seeing some appear in the last few weeks.

Erfa’s Thyroid from Canada: When it became clear that the FDA was allowing this excellent product to be shipped to patients, many switched and had their prescriptions faxed to a Canadian pharmacy. Prices at many of those pharmacy websites were doubled after prescriptions started to come in from the US. Most patient who stuck with it seem to love it, reporting you can do it sublingually, as well. A few haven’t been impressed, but were finding their former success by raising it.

Compounded desiccated thyroid: In spite of being a more expensive option, some patients found success with this. Others learned they preferred the filler to be Acidophiles.  If not the latter, Microcrystalline Cellulose was preferred over Methyl Cellulose–the latter which appeared to lessen the effectiveness of the compounded thyroid.

Synthetic T4 and Synthetic T3: some patients switched back to the synthetic combination, but many report that it hasn’t been as effective as desiccated thyroid was.

Other options: Patients moved to OTC products like Nutri-Meds, etc, which can be much weaker. Others sought desiccated thyroid from other countries and have found success.

So I’d like to hear from all of you.   Did you go back to synthetic T4?  What desiccated thyroid did you switch to? What worked and why? What didn’t work for you and why?  What product do you hope to switch to once you run out of your current meds?