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The Problem that Aging Hypothyroid Patients Face and How to Deal With it

Perhaps because millions of baby boomers are hitting their “senior citizen” ages, we are seeing an increase in statements by doctors, websites, and pharmaceutical reps implying that seniors should not have T3 in their treatment like NDT (Natural Desiccated Thyroid) or synthetic T3, calling it “dangerous”.

So I hope you are as impressed with the words below of this wonderful 72-year-old lady named Pat as I was…because her experience refutes the growing and ridiculous fallacy that T3 is globally and inherently “dangerous”.

I am 72 years old and up until four years ago, I was on Synthroid for over 30 years. Back then, I noticed my hypothyroid symptoms about six years after my second child. But if I’m honest and look back on my life, I now know that even as a teenager, I had brain fog….actually pretty serious brain fog. But I learned how to cover it up…

During all this time, I was diagnosed with multiple problems (which are typical for too many people on the poor treatment with T4-only or those undiagnosed): fibromyalgia, high cholesterol, high blood pressure, arthritis in my fingers, fatty liver syndrome and more. 

I also had the inflammatory disease called sarcoidosis in one nerve and in my lungs. I can’t actually connect sarcoidosis to my hypothyroidism and poor treatment with Synthroid, even if hypo people can report seeing increased inflammation. But it did happen when I was taking Synthroid. I had to take prednisone to beat it back and have been in remission for 15 years now.

But the bottom line is that for all those other issues mentioned above, I used to take multiple medications to treat all of them.

And guess what? Changing to Natural Desiccated Thyroid (NDT) four years ago took away all the above issues I was having, meaning I was also able to get off most of my prescription meds. I have less fatigue. I now have the flexibility of a 40 year old. The arthritis I had in my fingers just went away. I don’t need cholesterol or blood pressure meds anymore.

I sometimes add in compounded T3 if my RT3 (reverse T3) inches up.

My latest doctor now takes Natural Desiccated Thyroid after she saw how well I was doing. She has hypothyroidism and Hashimoto’s. We share a lot of ideas on how to conquer this disease.

My husband often goes to my appointments and says he does not understand a thing we discuss. I gave my doctor my copy of the “Stop The Thyroid Madness” book.  Interestingly enough, i knew when I went to my doctor that she used to recommend Synthroid, but also recommended herbs and other things to help with this disease. She was open to change, I think, because of her own experience.

So I think I blew their office up on my first appointment. I came in with all my labs and history. It was a 3-hour appointment with 2 people plugging in my info – my doctor and her assistant. It was later that I realized, when she asked me how I took my NDT, that she had switched to an NDT herself!

On our last appointment when we were talking about my slowly rising antibodies she told me that hers were in the thousands (my mouth dropped) and that she was taking 6 grains of her NDT. I’m thinking of recommending that she take LDN (low dose naltrexone) as I have heard it can reduce the antibodies.

Bottom line, it wasn’t staying on Synthroid that changed my life. It was moving over to Natural Desiccated Thyroid that has direct T3 in it. And in my opinion, my experience tells me the drug companies are lying! They want to keep people unhealthy so they will buy their drugs and then buy more drugs to take care of the damage the first drugs caused.   ~Pat

Here are some of the crazy issues seniors face (and there are more):

1) Medicare in the United States dropped all NDT’s from their Part D formulary—i.e. they won’t be paid for if you rely on Medicare. Armour on page 2, Naturethroid on page 16, NP Thyroid on page 17, Westhroid and WP Thyroid on page 29. See here.  Luckily, most prescription NDT brands are not that expensive anyway. Armour did go up, while the others stayed less expensive like NP Thyroid. Some use the prescription comparison called GOOD RX to find the best price in your city. 

2) Medicare in the US states “….the serum TSH test is reliable, valid, and acceptable to patients.”   To the contrary, patients of all ages have found it to be the most ridiculous test to either diagnose or treat by. It should always be about clear symptoms along with the free T3 and free T4, plus about where the latter fall in those so-called normal ranges. This is why you HAVE to be informed and be prepared to stand up for what is right and wrong. Read http://stopthethyroidmadness.com/tsh-why-its-useless There is also a complete chapter against the lousy TSH lab test in the STTM II book, and written by an MD! THAT is a chapter your doctor should read. 

Even worse, the ATA (American Thyroid Association) has stated that the target serum TSH should be 4-6 mIU/L in hypothyroid individuals age 70 or older.  That is in spite of the fact that so many of us at ANY age can have raging hypothyroid symptoms even with a TSH in the 2’s.

3) Or take the British Thyroid Association (BTA), which has stated that British thyroid patients shouldn’t be put on any thyroid meds whatsoever until their TSH is over 10, and that seniors should have a TSH around 4-10…in spite of the FACT that no matter what age, we can have raging hypothyroid symptoms even with a TSH in the 2’s–symptoms which UK doctors may blame on something else!!  Equally as bad, the UK National Health Service only endorses levothyroxine, and refuses to provide T3 to patients anymore.

4) The American Thyroid Association (ATA) states “As with the younger patient, pure synthetic thyroxine (L-T4), taken once daily by mouth, fully replaces the function of the thyroid gland and successfully treats the symptoms of hypothyroidism in most patients”  YET, we know that’s a joke. Time to inform whomever you can that a healthy thyroid does NOT make the human body solely depend on conversion of T4, a storage hormone, to T3. A healthy thyroid gives some direct T3 to counter any issues with conversion.  Read http://stopthethyroidmadness.com/natural-thyroid-101

But you CAN bypass this craziness, say informed seniors, with these steps

  1. Finding the right doctor: As with any age, senior patients state they all-the-more need to DO THE WORK to find a smart doctor who WILL let you be on T3 or NDT, and will NOT go by the lousy TSH lab test. It can be work, but it’s possible to find one. http://stopthethyroidmadness.com/how-to-find-a-good-doc
  2. Understanding the iron and cortisol issue: Seniors who have either been undiagnosed or on T4 for years say it’s extremely important to check iron and cortisol levels, since they can be off from all the years of no treatment or a poor treatment with T4. If they are off, they can cause reactions to T3 or NDT, causing the misinformed doctor to proclaim “See, I told you so”, when in reality, reactions to NDT or T3 are revealing inadequate iron or a cortisol issue. They will need to be treated. See http://stopthethyroidmadness.com/iron-and-cortisol
  3. Commiserating with other seniors: If you are OVER 60…consider joining the Facebook FTPO 60-and-over discussion group and see where others have found a good doctor. (FTPO stands for For Thyroid Patients Only) https://www.facebook.com/groups/FTPO60andover/ NOTE: you canNOT be approved if the admins can’t discern that your age fits this group, or we can’t see either your wall posts or friends list–the latter to know you aren’t a spammer.
  4. If you have to go in the hospital…have an informed family member or friend) who will advocate for you about your current NDT or T3 treatment. Too many patients have reported they were taken OFF their needed T3 or NDT and put on T4-only…and they regret not bringing their own meds or having an advocate.
  5. Keep a document stating what thyroid meds you are on, and why, that your advocate can have access to.

To read more: https://stopthethyroidmadness.com/thyroid-patients-getting-older

To get the very important STTM Books: http://laughinggrapepublishing.com …. because YOU have be informed!! If we put all our apples in a doctor’s cart, the risk is high we’ll stay sick or poorly treated. We have to be prepared to guide our doctors!

 

 

 

 

Actress Sofia Vergara doing thyroid patients no favor by representing Synthroid!

Sofia Vergara

A new campaign has started called “Follow the Script” and you will see the smiling face of Emmy-nominated actress Sofia Vergara next to the proclamation: ‘YOUR THYROID CAN AFFECT THE WAY YOU LOOK, FEEL & SOUND.

Oh sure…it looks all well and good. We want everyone to be aware of the problems of hypothyroidism! And we’re glad if Sofia Vergara feels she is doing well enough for the moment to let herself be paid to do this ad.

But…the Follow the Script campaign is for promotion of Synthroid — a T4-only medication, which represents only one of five thyroid hormones. The campaign is sponsored by AbbVie, a “new, independent biopharmaceutical company composed of Abbott’s former proprietary pharmaceutical business” i.e the company is the result of a January 2013 division of Abbott Labs, the pharmaceutical company which makes Synthroid.

Says Sofia Vergara: “In 2000, I was diagnosed with thyroid cancer and had to have my thyroid removed. As a result, I have a hypothyroid condition and need to take medicine to treat it.” She continues: “In my career, I’m known to ad lib and go off-script but not when it comes to my health. I make sure to ‘Follow the Script’ so I get exactly what my doctor prescribed. This is so important to me, because you can’t enjoy what you have without your health.”

And this is where you hear a booming THUD.

As reported by a huge and growing body of patients in groups all over the internet and across the world, T4-only medications just like Synthroid have done nothing more than keep them sick and sicker in their own degree and kind with their hypothyroidism…sooner or later. In addition, all too many T4-only patients find themselves falling into adrenal fatigue, low iron, low B12, low Vitamin D, immune dysfunction, weight gain, rising blood pressure or cholesterol, reactivated Epstein Barr Virus and more…all due to the inadequate treatment of their hypothyroidism with T4-only meds like Synthroid!

i.e. this is NOT about “whatever works for you”– the watered-down, walk-the-fence message that fails to tell the truth about what T4-only medications has done to millions, besides exposing many more newly-diagnosed thyroid patients to the problems that befall so many while on T4-only. It’s about promoting a product that has left all too many with compromised lives and declining health as compared to the life-changing results from the use of T3-only or even better, natural desiccated thyroid. It’s natural desiccated thyroid which gives you everything your own thyroid would be – T4, T3, T2, T1 and calcitonin. And it’s changed lives!

Informed and intelligent thyroid patients worldwide who know the ugly truth about Synthroid are not going to be the least impressed with celebrities who think it’s hunky dory to make money promoting an inadequate medication which has only served to compromise their lives in their own degree and kind…sooner or later…and which will do the same for many others, guaranteed. 

P.S. Read Chapter 1 in the revised STTM book about the history concerning T4-only medications.

VITAMIN D AND MAGNESIUM GO TOGETHER

A common scenario with hypothyroid patients who have been on T4-only medications is finding themselves with low levels of many nutrients, including Vitamin D. Why? It appears that continued hypothyroidism lowers stomach acid, and that in turn hinders nutrient absorption like Vit. D, iron, B12 and more.

And it turns out that once you get your Vitamin D levels back up, it’s also crucial to have enough magnesium for your body to utilize Vitamin D effectively. Says the Vitamin D Council, magnesium helps your body activate vitamin D into a form your body can use, as well as helps maintain your calcium levels. They state that you may need more magnesium supplementation that is normally recommended, such as between 500 and 700 mg a day. Dr. Mercola feels that 80% of you aren’t optimal in magnesium.

So it may be wise to get your magnesium levels checked and keep them optimal. Foods higher in magnesium include green leafy veggies like spinach, avocados, dried coriander, cocoa powder (hooray!!) pumpkin seeds, almonds, sesame and sunflower seeds.

THERE’S A NEW DESICCATED THYROID OUT – WESTHROID-P

The makers of Naturethroid, RLC Labs, have reinvented their tried and true Westhroid version of natural desiccated thyroid into “Westhroid-P”, calling it “the purest treatment for hypothyroidism” with only three listed inactive ingredients: Inulin (a natural fiber with natural sweetness), Medium Chain Triglycerides, and Lactose Monohydrate (which is inherent in the NDT). It’s also stated to be gluten free.  Looks promising. We’ll see how it work for patients, because it’s patient experiences, not opinions, which rule! 🙂

Will the FDA be more transparent for thyroid patients? We’ll see.

TransparencyFDAA press release just came out stating that the U.S. Food and Drug Administration (FDA) has “unveiled the first phase of its Transparency Initiative which is designed to explain agency operations, how it makes decisions, and the drug approval process.”

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.

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!

Is Cellulose the real problem in desiccated thyroid meds for many?

Screen Shot 2015-08-05 at 12.53.55 PM(This blog post is updated to the current day and time. Enjoy!)

When Forest Labs reformulated Armour desiccated thyroid in early 2009, they stated they increased the filler Microcrystalline Cellulose, and decreased the Sucrose (sugar). And all of sudden, the tablets became impossible to do sublingually–a method so many of us loved and which seemed to give even more of a punch.

And we were left wondering in 2009 why they would change a particular quality (being able to do the tablets sublingually) that thyroid patients praised so heavily?  Positive opinion among patients for Forest Labs back then slipped several notches. (Forest Labs was bought out by Actavis in 2014)

But the real cuckoo’s nest for many thyroid patients still on Armour in 2009, who knew firsthand the life-changing benefits of natural desiccated thyroid, was a maddening return of serious hypo symptoms on the 2009 Armour with its increase in cellulose, and subsequent new stress on their adrenals, sooner…or later! You can read several horror stories in the comments of the post below, or go here.

So patients turned to other alternatives, which at the time was Naturethroid and Westhroid by RLC Labs. (Naturethroid stopped working as well in 2018)

So what has been the common thread in the most problematic desiccated thyroid products?

It has always been CELLULOSE, a plant fiber, and more commonly known by the trade name Avicel. And what does fiber do in your stomach? Inhibits absorption. Armour’s cellulose was raised, and bamm…problems.  Compounded desiccated thyroid, with cellulose as a filler, has been problematic for many patients with a return of hypo symptoms, especially if it was Methyl Cellulose, a larger particle size product. But some have even had problems with compounded containing Microcrystalline Cellulose, the smaller cellular product. And a certain body of patients even had problems with Naturethroid back then before it became scarce for awhile. And Naturethroid used cellulose as a filler.

Note: With all the complaints, Forest Labs did change something about Armour by mid–to-late 2010. Though it never returned to what it was before 2009, it did become a softer tablet and patients did better on it. But we certainly learned a big lesson about cellulose in our NDT pills..

Is this problem true with T3-only products?

Yes. Patients noted that generic T3 was far less effective than the brand name Cytomel (both Liothyronine Sodium)  And what filler is up to 70% in the generic T3?  CELLULOSE.  

What does literature say about the use of Cellulose as a filler in medications?

Plenty. Cellulose is from wood. Wood is fiber. And fiber in your gut affects absorption. From http://www.umm.edu/altmed/articles/fiber-000303.htm we get this:

* Dietary fiber has been reported to lower the blood levels and effectiveness of tricyclic antidepressant medications…Reduced dietary fiber intake increased the blood levels and improved symptoms in these patients.

* While fiber supplements may help to regulate blood sugar levels, they may also interfere with the absorption of anti-diabetic medications….Therefore, fiber supplements should not be taken at the same time as these medications.

* Taking soluble fiber such as psyllium with carbamazepine (Tegretol), a medication used to treat seizure disorders, may decrease the absorption and effectiveness of carbamazepine.

* Fiber in the form of pectin (from fruit) and oat bran reportedly reduces the body’s ability to absorb cholesterol-lowering medications known as “statins,”… and could lead to decreased effectiveness of these medications.

* Fiber supplements may reduce the body’s ability to absorb digoxin (Lanoxin), a medication used to regulate heart function.

* Clinical reports suggest that psyllium or other soluble fibers may lower lithium levels in the blood, reducing the effectiveness of this medication.

* In one clinical study, the fiber supplement guar gum reduced blood levels of penicillin.

Fast forward to the present

If you are using a compounded desiccated thyroid medication, it’s strongly recommended to request powdered acidophiles, also spelled acidophilus, as your filler.  One gal states her compounding pharmacy uses powdered Ginger (but beware of too much Ginger if you have Mitral Valve Prolapse. It can cause palps if you take too much–my experience).  Others might use powdered Vitamin C.  See what other fillers your compounder can offer.

Another possibility is Cellulase, an enzyme which helps the splitting and breakdown of cellulose, It’s found on most supplement websites.

JanieSignature SEIZE THE WISDOM

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* Become an informed thyroid patient! //www.laughinggrapepublishing.com