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10 reasons many thyroid patients are still frustrated, angry, and sick

 

Screen Shot 2015-06-12 at 1.21.49 PMUpdated in 2015:

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

  1. Heavy-handed control over your medication:

    You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).

  2. Ignorance about adrenal insufficiency and treatment:

    You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.

  3. Thinking that falling in the range is optimal:

    If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??

  4. Dismissing you:

    You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.

  5. RT3 huh?

    You have strong suspicions that your Reverse T3 is too high thanks to low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.

  6. Look at me! Look at me!

    You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet some or all of the above and below occurs with him/her or his “trained” associates.

  7. Continued worship of the TSH lab test:

    Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match whatsoever and improvement in our bone density and heart health.

  8. Pharmaceutical addicts:

    You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understanding from your doctor that these are ALL side effects of poor thyroid treatment.

  9. The country you live in:

    The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail, or like Denmark, refuses to dispense it.

  10. Reformulations and Big Pharma apathy:

    In 2009, then Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose, causing a massive return of symptoms in many.  RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so.

All-in-all, we still have a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt. And here’s how to find a potentially better doc. 

 

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Here’s the skinny about the “new” Naturethroid: the good, the bad, and the curious

(A lot has gone on since this post below was first put up in 2010. So after reading the below, see what happened in 2017 here.)

As the one grain tabs of Naturethroid desiccated thyroid by RLC Labs are hitting pharmacy shelves again all across the nation here and there after the recent shortages and the sad reformulation of Armour,  and patients are starting to use the new Naturethroid, we are gathering some good information, both anecdotal and factual:

  • The typical smell of desiccated porcine is less intense with the new tablets. We have no idea why.
  • The tablets are now stamped with RLC on one side, and N over 1 on the other, whereas before you’d see just NT1 or a reference to the fact that Time Caps Labs (TCL) used to make Naturethroid for RLC Labs
  • The package insert is no longer inside the bottle but stuck on top of the cap
  • Lot number info used to be on the edge of the label running vertically, whereas now, it runs along the bottom of the label  under the ingredients.

One grain is still 65 mg, with the T3 content being at 9 mcg and the T4 content being at 38 mcg.  The T2, T1 and calcitonin still unmeasured.

There are filler/inactive ingredients which have changed:

  • Calcium filler has moved up from 16 mg to 17 mg (calcium binds thyroid, but you just take more. Don’t swallow it with milk, please.)
  • The old contained Magnesium, Potassium, and Sodium (each at less than 1 mg), whereas in the new, potassium is now removed
  • And here’s the best part: the old NT had Hydropropyl Methylcellulose–that’s the larger size cellulose structure which we know binds some of the thyroid hormones. Now, the new NT has Microcrystaline Cellulose, the smaller size. (Too bad we can’t see all cellulose removed!)

Below are the new NT fillers, which are identical to the old except for the cellulose change:

Carnaba Wax, Colloidal Silicon Dioxide, Dicalcium Phosphate, Hypromellose, Lactose Monohydrate, Magnesium Stearate, Microcrystaline Cellulose, Polyethylene Glycol (PEG)-400, Sodium Starch Glycolate, Stearic Acid.

Most all the above comes courtesy of Stephanie Buist, owner of the Iodine group on Yahoo and thyroid and adrenal patient and advocate.  Thank you, Steph!  You can read about the fillers here by scrolling down.

Oh and by the way, the new tablets are now scored. A helpful addition!

In patient groups, we are seeing a variety of experiences with the new Naturethroid.  Most folks seem happy with it so far, and even some report it seems a tad stronger than the old (the cellulose change may have caused that). Occasionally, someone will report problems, but they appear to be from underdosing or a potential RT3 problem which has arisen and needs treatment with T3-only.  Changing brands can also bring different reactions, so you have to wiggle the dosage around sometimes to find your sweet spot once again.

All in all, it looks good.

P.S. If you are reading this via the Newsletter Notification, just click on the above link to put yourself right on the actual blog post if you want to comment. Let’s gather all our experiences with the new Naturethroid.

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If you missed the last internet radio Thyroid Patient Community Call with Dr. Kent Holtorf, you missed a VERY good one. Thank you Dr. Holtorf for excellent information. But good news! All the shows are recorded.  Just go to the following link, scroll down, and you can click on any past interviews, including two with Dr.  John C. Lowe and a great one with Endocrinologist Dr Pepper–one of a rare breed of open-minded Endos.  (I’ve also stopped doing my long intro’s about me in the last two, figuring if someone wants to know, they can go to the About Me page, or read the Introduction in the book which has even more detail. lol.)

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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This and that–an array of interesting info for your thyroid pleasure

I’ve been distracted the past week, having to do extensive research and traveling to find the perfect “new used car”.

Then I caught a cold from hell–rare for me.  I was taking zinc and Vit. C. But a good friend reminded me about Vit. D and it’s immune enhancing effect. OMG, I forgot about it!  So later last night, I took what I thought was 12,000 IU on the first night of being sicker than a dog.  They say to take 1000 mg per 10 lbs of weight. Turned out the gel caps were not 1000 IU each, as I thought, but 2000 IU each. So I ended up taking 22,000 IU.  lol. But the long and short of it is this: though I woke up this morning quite tired and weak, I’ve slowly gotten better all day!! My congestion has hugely improved.  Read this: http://pandemicsurvivor.wordpress.com/2009/11/28/eliminate-the-common-cold/

Love your green powder drink? Just a word of caution: much of what is in many of those powdered greens are goitrogens, which inhibit thyroid production, such as wheat grass, barley grass, broccoli, spinach,  cabbage, maca and spinach, plus much more. But that doesn’t mean you can’t use the green powder. You’ll just have to be sure to use it in moderation, and not consume too many other goitrogen foods each and every day. Or, raise your thyroid meds.

Dr. Peter Gott can give even better information to readers. I noticed that a column on the Tulsa website by Peter Gott, MD of the Newspaper Enterprise Association  could have given different information to a distressed reader who couldn’t find Armour anywhere.  He recommended to this reader, who already stated that Synthroid is not a well-handled treatment, to see if her physician could “alter the Synthroid dosage to find a level”  that could be tolerated.  Actually, there are far better options during this backordered time, which I have compiled here, and includes Erfa’s Thyroid and more.

Naturethroid is appearing in pharmacies! Yup, patients are reporting it! No, it’s not all pharmacies. But you might want to call and see if YOUR local pharmacy has it. Otherwise, it’s coming.  For options during the current natural desiccated thyroid shortages, go here. To see why we are where we are today, read this.

Is there research to prove having a free T3 in the upper quarter of the range when on desiccated thyroid?? A gal emailed me, wanting studies to show her doc. But unfortunately, the answer appears to be no. Instead, this is what patients all over thyroid groups discovered from their lab results when they were feeling fabulous again with no lingering symptoms.  So we simply spread the word. Patient experiences DO count for something.  P.S. Here’s an ongoing list of research that DOES prove some things patients KNOW first hand.  And by the way, when you have a high free T3 and continuing symptoms, time to do labs for ferritin and adrenal fatigue.

By using a code, you can save on labs from HealthcheckUSA. I was informed from HealthcheckUSA that many patients were forgetting to mention the discount code. So look again, and be sure and use it from the Recommended Labwork page.

Janie on radio shows, and a great guest for the upcoming Talkshoe Thyroid Patient Community Call. Can’t say much more, because it’s in the works. Watch for announcements soon.

A new way to be informed of these thyroid posts. The former Notifixious notifications went out of business. But we have a new and GOOD one, referring to the notification as a newletter, and you can sign up free and with no strings attached.  See on left below on the links. :)  Also, there are many more important posts right below this.

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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!

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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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