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Tag: prescription

Erfa’s “Thyroid” has been our saving grace–here’s more info from Dr. Knafo and Erfa!

erfalogoThe 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!

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FDA’s Safe Use Initiative–think they will listen to our cries about T4-only meds?

EarplugsAs 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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FDA is not requiring form when you order Erfa’s Thyroid

CloudSilverLiningSometimes 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 am very concerned for those on Naturethroid with a month-to-month supply

shortageWord has trickled down to me from a few patients and emails that even Naturethroid is getting harder to come by at pharmacies because of the extreme demand on RLC Labs.

No, they are not ceasing to make desiccated thyroid. They just weren’t prepared for the high demand due to the reformulation of Armour and problems it caused.  And they aren’t keeping up and won’t for several months.

So, if you can’t last with your current prescription for several months, you will probably need to talk to your doc about getting a generic version by Major Pharmacy, or get some over-the-counter like NutriMeds, or even the “Hypo Support Formula” made by RLC Labs, but expect to take much more of either.  Many patients are also mentioning Thyroid-S by Greater Pharma as a backup until RLC catches up.  But it’s by mail order and will take a few weeks to arrive.  Google any of the above. Finally, you can move a slight step backwards and talk to your doc about doing synthetic T4 and synthetic T3.  It’s not going to be quite a good as being on desiccated thyroid, but it’s certainly better than being on T4 alone, don’t you agree?? Keep connected to your doc.  And hang in there. This will pass.

Janie

P.S. I’ll be adding more information to this post tomorrow. Check back.

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

Below is the actual release by RLC Labs:

For any patients experiencing difficulties in attaining either Nature-ThroidTM or WesthroidTM through their pharmacy, RLC Labs, Inc, asks these individuals to have their pharmacy contact us directly at 877-797-7997 to place an order, or have their pharmacy request a drop-shipment through their wholesale supplier.

RLC Labs’ products are only available through wholesalers, pharmacies and or their doctors; thus all confirmations and/or tracking information will only be available through the wholesaler, pharmacy, or doctor’s office that placed the order.

RLC Labs is experiencing a substantial increase in orders for Nature-ThroidTM and WesthroidTM. The recent unexpected influx has inundated our customer service and shipping departments, thus causing delays and depleting our current stock. We are working around the clock to fulfill all current orders; however, we cannot guarantee that
any future orders will be fulfilled until our stock is replenished.

RLC Labs will continue to accept orders from our customers, however as of Friday August 14th, we are backordered on all strengths of Nature-ThroidTM and WesthroidTM. Shipment is expected to resume within 90 days.

We regret to inform you of this situation; however, we can assure you that we are working diligently to replenish our stock and will resume shipping as soon as possible. Please accept our sincerest apology for any inconvenience.

We do understand how much of an impact this has as most of us employed @ RLC Labs, are hypothyroid and take our own product. Thus, we know and understand how important it is to get product back into the market place. We are grateful for your continued patience, patronage and support!

Feel free to contact our customer service department with any questions concerning this matter @ 877-797-7997.

Thank you from all of us @ RLC Labs, Inc.

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A toxin which could explain why SO many of us have thyroid disease

perchlorate_manuf_users_mapEver heard of perchlorate?? It’s a salt taken from perchloric acid, and it’s used in rocket fuel and explosives.  It was also once used in a medication to treat hyperthyroidism.

And guess where residues of it are hiding? In our drinking water and in infant formula. (EPA map shows where perchlorate is manufactured just in the US—nearly every state)

In a recent article by the Environmental Working Group,  it’s estimated that 15 brands of infant formula are contaminated with it, and two of the most contaminated brands of those 15 made up 87% of powdered formula used in 2000…all according to the CDC (Centers for Disease Control and Prevention).

As bad as that is, this goes beyond infant formula. It’s estimated that the drinking water of 28 states is contaminated by perchlorate, and other estimates are 35.  In addition,  the majority of women who breastfeed have it in their milk.  And you can find it in water-rich foods such as tomatoes and melons, or carrots and spinach.  It could even be found in milk.  Ouch.

So we not only have millions of US babies being exposed to a toxin which can diminish thyroid health, but adults who can be drinking their water and eating their food.

But guess what can counter the toxic effect of perchlorate? Iodine supplementation, if you take enough. In spite of some controversy with the use of iodine supplementation, this gives one pause in favor of it.

Luckily for all of us who know that desiccated thyroid like Armour is a better thyroid treatment, it also contains iodine. And some go beyond that, adding iodine to their supplements via Lugols or Iodoral.  It might be worth looking into.

P.S. The buck doesn’t stop with perchlorates in our water. We could also be exposed to a variety of pesticides, chemicals from deposed prescription drugs, and even mercury in our water.  Sad.  Our poor thyroids are assaulted.

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