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How does your insurance deal with desiccated thyroid?

(Though this post was first written in 2011, it has been  updated to the present day and time. Enjoy!)

Wendy is one of those gals that tries to adhere to “natural” in regards to her medication choices. She switched over to Natural Desiccated Thyroid (NDT) from Synthroid about three months ago.

The transition was slightly trying, says Wendy. Her doctor didn’t believe her that she shouldn’t be on a low starting dose for more than a couple weeks without upping it. So she  went hypothyroid all over again. It’s a common mistake that many doctors make with NDT.

But after successfully upping the dose every few weeks, she will now shout that it’s been the BEST thing  in every way!  She tells folks that being on Synthroid was like having your hand amputated and replaced with a hook, while being on desiccated thyroid was like having it replaced with a fully functional prosthetic.  Her skin is softer, hair is not shedding, her mood has changed in a good way, memory has returned, fogginess has faded. She feels closer to her old self than she has in almost five years.

Now the bad news…

All this time, she only paid $15 for her desiccated thyroid at the local Walgreen’s. But as of April 1st, 2011, it became what is called a Tier 3 drug under her insurance plan–United Healthcare.  Exclaims Wendy in outrage and sadness:  “This means that the natural drug I love, that has restored my in so many ways that the synthetic t4-only drugs never could, will now cost 85 bucks! Who can afford that?!

And here’s the awful irony when it comes to her insurance plan: Synthroid, the worst medication ever thrust upon us in the treatment of hypothyroid, is Tier 2 (i.e. costs less), and generic T4-only is Tier 1 (costs even less).  i.e. if you are under this insurance, you have to pay big bucks to feel a thousand times better.  She has no clue why this is happening, but warns that it might start to happen across the board for others as well!

In the United States, most Tiers look like this (and some companies have three tiers, while others have five):

Tier 1 is for generic medications and has the lowest co-pay

Tier 2 is for “preferred” brand name medications, i.e based on “safety, efficacy and cost”, and is the second lowest co-payment. (I put the word preferred in quotes because it’s not based on what changes YOUR life as a thyroid patient.)

Tier 3 is for non-preferred brand name medications or preferred specialty drugs. It’s termed as those drugs which are not typically used as first line of treatment, and have a higher co-pay.

Tier 4 is for specialty medications, i.e those which require special dosing or administration. Highest co-payment.

In the United Kingdom, where the National Health Service (NHS) provides publicly funded health care, there are formularies which specify which medications are available…or not, and one can get Prescription prepayment certificates (PPC) .

In Australia, “Medicare — via the Pharmaceutical Benefits Scheme (PBS) — subsidises the cost of around 1,700 ‘necessary and life-saving’ medicines. In fact, most medicines available on prescription are subsidised under the PBS, so just by having a prescription filled you receive the benefit of the subsidy. https://www.justlanded.com/english/Australia/Australia-Guide/Health/Medicines-Chemists

Does your health insurance cover your desiccated thyroid?

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

How medical journals affect the prescription practice of your doctor: An interesting article on this found here. And here’s an article about how the author of a medical article fails to state his association with the pharmaceutical of the product he is writing about–one more conflict of interest and influence on your doctor!

Ridiculous! Basing “normal” for Hashimoto’s patients by the TSH, a pituitary hormone, NOT a thyroid hormone: Read it here and weep.

Vit. D can help you stay sharp: So many benefits from optimizing your Vit D, and here’s one with your brain.

Need to talk to others? See all your alternatives here.

Are online Canadian Pharmacies cutting it with US thyroid patients on desiccated thyroid?

pills2-1(Though this post was originally written in 2011, it has been updated to the current day and time. Enjoy! At the end of this post, you’ll see more updates to read on this topic.)

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 (2010), 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 (2010)
  • 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 (2010)

Cross Border Pharmacy:

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

Canada Online:

  • Good experience, prompt (7-10) days service getting my Erfa thyroid

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?

UPDATES TO ALL THE ABOVE:

Check out how Canadians felt about their healthcare situation as well as thyroid treatment on this October 2015 blog post: //www.stopthethyroidmadness.com/2015/10/20/canadian-thyroid-patients/

Though written in Sept, 2014, comments continued through 2016 about BAD batches of Erfa: //www.stopthethyroidmadness.com/2014/06/12/part-ii-erfa-canada-says-new-thyroid-pills-are-fine-thyroid-patients-worldwide-exclaim-hog-wash/

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Other 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!

American Laboratories continues to work hard at production.

ALIOn the August 19th blog post, you can read about the only North American manufacturer of natural porcine desiccated thyroid called American Laboratories (ALI). ALI sells to distributors who in turn pack it up in smaller quantities which go to those who create desiccated thyroid products.

I just got off the phone again from Kenny Soe­joto, the Chief Ope­ra­ting Offi­cer at ALI.  And the news couldn’t be better.  ALI is working hard to catch up and is currently shipping to all their customers.  Yes, they are still in a backorder situation due to demand being greater than supply in 2009, but work is in progress, shipments are being made to all, and they hope to see some major catching-up in two months or so.

And his most important comment? “If we had FDA issues, we wouldn’t be producing”. i.e. everything is going fine. 🙂

In the meantime, there seems to be two areas of success right now with getting your desiccated thyroid prescription filled:  from Canadian pharmacies, and from Compounding pharmacies.  Hang in there. We’ll get past this.

Join us next Friday for our next thyroid patient Community Call via Talk Shoe. See the blog post right below this for information.  Below that is information about the Coalition for Natural Desiccated Thyroid, an independent group working alongside Mary Shomon’s efforts, as well.

*Want to be infor­med of these blog posts? Curious what’s on Janie’s mind? Just use the Noti­fi­ca­tions on the left below the links.

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The gnarly man and what we can do in the face of this crisis

ogre

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.

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