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The unsung heroes of this thyroid patient movement

shakinghands1Let me tell you, there are a LOT of individuals–those I know and those I don’t–who give their blood, sweat and tears to help thyroid patients with feedback and information to help them feel better in their treatment, and with no notoriety that I or a few others get.   i.e they do what they do without a huge or far-reaching website like STTM, or a well-known blog, or a popular book, or other ways a few of us get well-known.

And in my mind, these individuals deserve praise and recognition. They are just as important in their direct one-on-one influence and helpfulness as those of us who gained public recognition.

There are many who voluntarily helped others in the last few years who aren’t as active anymore, but still deserve praise.

And there are many other individuals who own, moderate, or give helpful feedback to patients on forums and yahoo groups I could mention, but I don’t know their names or am just drawing a distracted holiday blank.  I also noticed several thyroid cancer groups.

So, if you want to recognize an individual who has helped you and others but is less publicly well known, use the Comments below and give 1) their name, 2) what group or forum if applicable, and 3) specifically how they helped you on your path in finding a much better thyroid treatment protocol and good health.

Are we running out of desiccated thyroid powder???

And now that I have your attention, here’s the answer straight from the mouth of Kenny Soejoto, Chief Operating Officer of the only North American maker of desiccated porcine natural thyroid powder (American Laboratories): a firm NO!

“We have amply supply and so do the distributors for compounding pharmacists”, underscores Soejoto when I chatted with him today.

He also added in response to the recent shortages:  “We didn’t spare an expense to push it along”.  i.e  “American Laboratories have caught up with all backorders, with the exception of one major company which has tight specifications, but they should be caught up by the first quarter in 2010”, explained Soejoto.

So what about specific rumors we keep hearing??

  1. My compounding pharmacy said they weren’t able to get it. Kenny explained that a small compounding pharmacy often can’t afford the minimum order that American Laboratories requires, nor does the smaller pharmacy want that much, which is an 110 lb drum of powder.  So, says Soejoto, they need to contact their distributor, who is the middle man between a compounding pharmacy and American Laboratories. “The distributor for compounding pharmacies, “ explained Kenny, “will buy the larger amounts, make smaller packets, and then sell those to the compounding pharmacies”.
  2. American Laboratories can’t be the only North American makers of powdered thyroid because my compounder told me a different name. The different name you heard is the middle man mentioned above–a distributor for the thyroid powder to the compounding pharmacy. But that distributor got their supply from American Laboratories.
  3. My regular pharmacy said there is a supply issue for the brand I wanted. Again, Kenny explains there is no supply issue–they have plenty. Any pharmaceutical company that makes desiccated thyroid has to have ongoing credit worthiness and documentation before AI can sell to them. Also, we are simply experiencing continued demand being greater than supply, and it can take time to catch up.  i.e. there may be more to the story than you hear under any comment about a supply issue problem.

In conclusion, Kenny Soejoto said they simply got into trouble from the growth of interest in desiccated thyroid the past few years, and they are much better prepared. Even Europe is inquiring more about it, he said. And my response to him?? Get ready, because you are doing millions of potential thyroid patients a HUGE favor by making it,  and we’re going to continue to spread the world about natural desiccated thyroid.  🙂

Check out posts below about other important issues, including more from Erfa, plus the problem of cellulose in compounded and regular desiccated thyroid.

*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!

Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

Reverse T3–do you have this problem in excess? Let’s talk!

Screen Shot 2015-12-04 at 5.53.48 PM

This blog post has been updated to the current day and time. Enjoy!

Most thyroid patients have heard about T4…the thyroid storage hormone, also called a pro-hormone. You’ll see it in literature as “thyroxine” or “l-thyroxine”–the latter as the name for a man-made T4.

And many know about T3…the active thyroid hormone which rids us of hypothyroid symptoms.

And as patients become more informed, they learn that the body not only converts T4 to T3 through what is called deodination, it also provides some of that T3 directly. That is an important distinction! The latter fact can be why thyroid patients report getting far better results with natural desiccated thyroid (NDT) like Naturethroid, NP Thyroid or other brands.

Patients might also learn that there are actually five thyroid hormones made in your body, which is also what’s found in NDT: T4, T3, T2, T1 and calcitonin.

Reverse T3

But in every individual, whether a thyroid patient or not, a thyroid can also convert T4 to the inactive RT3 (reverse T3).  RT3 is an inactive thyroid hormone, as compared to T3 as the active thyroid hormone. And converting to RT3 is a natural and necessary process, even if there are consequences.(1)  The body might convert T4 to RT3 as a way to clear out excess T4, or as a way to reduce your metabolic rate.  It can happen if you go through any of the following:

  • surgery
  • a major physical accident
  • certain heart problems
  • intense chronic stress
  • restrictive low carbohydrate diets (2)
  • chronic inflammation

When Reverse T3 is a problem

Unfortunately, many thyroid patients make far too much RT3, as well, and patients with their open-minded doctors have been making cutting edge discoveries about this fact.  Many patients have seen that their high levels of RT3 can be found with the following conditions:

  • high cortisol
  • low cortisol
  • low iron levels
  • possibly low B12
  • lyme disease
  • gluten intolerance or Celiac
  • other undiscovered and untreated underlying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is problem? That excess RT3 is making itself lazily comfortable on your thyroid cell receptor sites, preventing the active T3 thyroid hormone from doing its job on that same receptor to get you out of your hypothyroid state.  It becomes akin to a clogged up drain to your organs and cells. So you stay hypo and symptomatic, in spite of seemingly “normal” other labwork.

The solution

Informed patients discovered they needed to discover and treat all the reasons contributing to their body converting to excess RT3.

Want to read more? All the below is based on patient experiences and wisdom to share and work with your doctor:

For those with the revised Stop the Thyroid Madness book, there is also more good detail in Chapter 12 called T3 is the Star of the Show, page 155, to continue your education. This is all good information to take into your doctor’s office.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

(1) http://press.endocrine.org/doi/abs/10.1210/jcem-41-6-1043

(2) http://press.endocrine.org/doi/abs/10.1210/jcem-42-1-197

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