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Why I insist we need to fire most of our doctors! i.e. mainstream medicine is keeping us sick!

The following is a Guest Blog Post by thyroid patient N.P who is active on the main Stop the Thyroid Madness (STTM) Facebook group. 

Hi. My name is N.P. In March of 2012, I started a post on the main STTM Facebook group page with the topic “How many doctors have you fired?”.  It not only ended up with over 1000 replies, but most were from exasperated and emotional patients about their terrible experiences with doctors. I even had a few who thought it didn’t belong on Janie’s site. I’m thrilled to be known for that, actually.  Anything to entertain.  Now…if you want my practical editorial of why my post has gone over the 1,000 comment mark, read on.

After 9 long years of a “wrong diagnosis” followed by wrong treatment strategies and all-too-many doctors, it took a psychiatrist to diagnose my Hashimoto’s condition.  After going gluten-free to manage the Hashimoto’s disease, the same psychiatrist was the one who suggested I had Celiac Disease as well.  What is wrong with this picture?  Why did nine years of doctors never do their jobs???  Why did they let me suffer so?

I went through the various stages of emotion over the years, from being frustrated by mainstream medicine’s poor understanding of my health, to the annoyance of not having answers, to the embarrassment of never having good explanations for my friends and loved ones. And when the only way I got answers was through Amazon, STTM/Janie Bowthorpe, Facebook and my psychiatrist, I had finally reached this familiar stage:   cynicism.  There’s not much left after that except for throwing in some humor.  That’s why I started the post.

I sensed when I started the post that I was representative of many.  Clearly, the post struck a nerve with a lot of patients and has been a great outlet for people needing to get their horror stories and frustrations off their chests.  For those who are feeling desperate, as I have and still sometimes do, there’s always a place for you on my post.

“Yeah, It’s all wrong man…we shouldn’t even be up here!” 

The post was originally meant to give people a humorous way to vent their frustrations over the outrageously inept thyroid care that they’ve received.  I quickly saw the fun in having it morph into a vehicle to ridicule all doctors who’ve told their thyroid patients “Your labs are normal.” Yes, I have an ax to grind with mainstream medicine and feel my post is fair game.

Mainstream medicine brought it on themselves by the way they’ve conducted themselves.  It’s much like the airlines have done the same with seats that force your knees up to your chin and allow the bald head in the seat in front of you to be in your face.  They think it is OK but it is NOT OK.  The many posts about the experiences of patients with doctors, and being stranger than fiction, proves my point.

In addition, I felt I was representative of many people who’ve gone through what I did over 9 years and just needed a place to vent and release their years of frustration through a little bit of humor.   Can you believe that a doctor with 20+ years of education and training on how to heal people, and who literally holds the patient’s life in their hands, would rely solely on a lab report?   Then, they send the patient on their way by saying “there’s nothing else to do — it must be in your head.”   They call themselves professionals?   For shame.  They deserve to be ridiculed.

I’m shocked by the frightening,  life-altering treatment recommendations from doctors who’ve stopped trying to heal when they say,  “Your labs are normal.”  If you haven’t read my latest summary, here’s a few.  Incompetent doctors have recommended hysterectomies, ECT , surgeries and one patient was told she should check into an in-patient psych facility.  The frighteningly outrageous part of this is that these doctors, who lull us into complacency because of their titles and stature in society are in a place in our lives where they can HARM US!!!  And they have harmed many.  I certainly feel harmed.

And the Band Plays on……………………..

What I always knew, but would never consciously admit until I started the post, was that the “only in America” pop culture bafoonery we read about in the newspaper also existed in the medical profession. The most intelligent people can also be the most dumb.  A doctor tells a patient that “your bones are probably dissolving” or that Natural Desiccated Thyroid was “made by a meat company that went out of business 10 – 15 years ago” or that “since a cause of the depression can’t be found , you might as well get a hysterectomy.”   Crazier than fiction.

So, the profession that is supposed to heal us is keeping us sick.  Rather than letting one of  the most basic laws of humanity (which is  to help others) to passionately drive them  to use their training and common sense to solve our problems, they would rather dismiss any other proposed treatment strategies that might work and let us stay miserable until someone in an ivory tower tells them to do otherwise.

You’d think I’d be done after the statement above, but it gets worse.

Not only is mainstream medicine keeping us sick, but many doctors are insulting us as they do so.  For example, the complexities of thyroid problems and its related conditions cause many patients to gain weight.   What do many doctors do?  They blame the victim.  “It’s your fault you are fat “  is what they mean when they tell you to go to Weight Watchers or to start eating spinach (It’s true, a doc actually said that to a patient).   They are thinking that the patient is not educated in how to eat right or just doesn’t have the motivation.   I’m one who has heard a variation of this before. Outrageous.   The one person you would expect some empathy and compassion from does more harm and their attitude keeps us sick.

Some of you have decided to do something constructive with the problem, and through different initiatives, are demanding of the institutions that oversee thyroid treatment better care.  I applaud you for that.  Me, I’m the one who will keep insisting on firing doctors until we get well, get their attention, or both.

Fire a bad doctor for me.  Add it to my post on the main STTM Facebook page!

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*To read Janie’s 20-year agony thanks to uninformed doctors, read the detailed Introduction in the revised STTM book.

* See a collection of what many misguided doctors have said to patients over the years.

P.S. And thank you to the growing body of doctors who are LISTENING to ten years of patient experience as outlined on the STTM website and with more detail in the STTM book, all which underscores that

  1. The TSH lab test should ONLY be used to discern pituitary function (NOT to diagnose or treat by)
  2. There are far better labs that need attention.
  3. It’s “where” a lab result falls that counts, not the fact that it comes within a so-called normal range
  4. Natural Desiccated Thyroid changes lives.
  5. Sluggish adrenal function is very real and needs the right treatment.
  6. The patient-to-patient Stop the Thyroid Madness book needs to be in every doctor’s office for reference. Patients really DO know what they are talking about.
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Ten years reveal what works with thyroid treatment, plus healing adrenals without HC!

This year, 2012, marks the tenth year I started working with and learning from patients after desiccated thyroid turned my life completely around. It all began with the creation of the Yahoo group Natural Thyroid Hormone users–a still-active group. And the next few years of “patients sharing with patients” provided incredible information. 

And when it comes to the variety of thyroid med treatments, here’s a general summary of ten years of patient experience:

  1. T4-ONLY MEDS: do not work well for a large body, if at all, leaving patients with continuing hypothyroid symptoms in their own degree and kind. Those who feel they are doing well on T4 end up seeing increasing symptoms of a poor treatment…eventually (or don’t recognize their symptoms of a poor treatment). By observation, more than 50% of those on T4-only end up with screwy or debilitating adrenal function, low iron, low Vit. D and more side effects of a poor treatment. Some put on T4 (because of a transient high TSH lab test result) probably never needed any thyroid treatment in the first place, like my sister-in-law.
  2. SYNTHETIC T3 WITH SYNTHETIC T4: a definite step up from T4-only in improvement of symptoms. Unfortunately, though, we see more and more doctors prescribing this rather than breaking through their ignorance and prescribing natural desiccated thyroid with its T4/T3/T2/T1/calcitonin, because all they know about is synthetics.
  3. T3-ONLY: another good step up from T4-only. Patients note they have to be diligent in taking their multi-dosed T3, having no T4 to rely upon for conversion. Also used temporarily by those who want to lower high RT3 while correcting the causes.
  4. NATURAL DESICCATED THYROID: gives the best results, say many patients over the past ten years who tried the synthetic T4/T3 route or others, since it gives exactly what a healthy thyroid would give (T4, T3, T2, T1 and calcitonin).  There just appears to be something synergistically powerful when you give yourself exactly what your own thyroid would be giving you.  If you have issues, it’s usually due to a cortisol or iron problem, which need to be corrected. More info here.
  5. COMPOUNDED THYROID:  Be careful, say experienced patients, when your doctor prescribes this! It’s far more expensive, and the less expensive prescription pill forms of NDT work well anyway. Also, some patients have been shocked to find out that what they were taking was compounded synthetic T3 and synthetic T4. Beware, say informed patients, when your doc says “it’s specially formulated for your particular needs” (for most, this is a mute point. The prescription pills for fine.) or “time-released is good” (Not, say patients, who found it runs out far too quickly).
  6. OVER-THE-COUNTER THYROID SUPPLEMENTS:  Just a few years ago, patient experience found them to be weak substitutes for prescription desiccated thyroid meds. But the last few years saw the introduction of good OTC products which patients report have done them well! ThyroGold brought out by the late Dr. John C. Lowe is one, even if quite strong and the need to pour out the contents and divide.
Of course, there can be less common ways to use the above. For example, those with peripheral tissue resistance can be on high doses of desiccated thyroid (to get the benefits of all five hormones) along with added T3. And there are more.
READ the stories of two real people who found out the hard way that Synthroid can end up biting you in the butt later: DEANNE and GENE.

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YES VIRGINIA, YOU CAN HEAL YOUR ADRENALS WITHOUT USING HC!

And just as patient experience has revealed great information about a variety of thyroid treatments, the same patient experience is breaking ground with adrenal treatment as I write this! Namely, a small but growing body of patients have been doing the T3 CIRCADIAN PROTOCOL FOR ADRENALS, as first discovered by UK patient and author Paul Robinson, and it’s working!

And even more exciting? It’s working with natural desiccated thyroid, not just T3!

Now of course, Paul doesn’t feel that “healing” is the right word. He prefers that it’s “promoting better adrenal function”.  He’s right. But “healing” fits when one has gone from the misery of low cortisol, to the glee of better adrenal function….and achieved from just several weeks of doing the protocol correctly, as compared to a few years with the use of HC and its problematic side effects.

To read more about this exciting new discovery, go here.  You’ll also see the link to order Robinson’s book, of which Chapter 16 covers this use of T3 in promoting better adrenal function.

 

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Get ready to be blown away by the words of this doctor! He criticizes his OWN colleagues, and rightly so!

As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website.  Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS.  Again, I will not be mentioning his name.  The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!

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In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds.  Even the Royalty of Hungary began to go to his practice. Why?  Because he had the best outcomes.

When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish,  his peers brought him before the medical society and censured him for not adhering to the current practice guidelines. 

His crime? Washing his hands before delivering babies.  Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action.  Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800’s and often fatal.

The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice,  but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of  current practice guidelines.

It was not until the 1890’s that his methods were fully recognized,  even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.

And today, established scientific and medical opinions continue the same ridiculous travesty. 

TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal.  Yet, Gay, JC et. al.,  in the Arch Intern Med 2000: 160: 526-534,  showed that the TSH range was 0.45-2.5 for 95% of general population.

In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”,  Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).

As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:

“I am aware of this idea to lower the reference range for TSH.  But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0,  we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005,  which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.

Thanks, and good luck,
xxx

So there is the problem. Even if TSH alone was used for screening,  the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’  are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.

Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.

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From Janie:  ABSOLUTELY BRILLIANT!  And of course, informed thyroid patients also know another inane current practice guideline–the use of  Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.

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FIND THE ABOVE APPALLING??? FIGHT BACK!!!  A publicist has been hired to represent  Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.

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The pitiful challenges even a Good Doctor faces….ignorance, stupidity, resistance. Read this!

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease–Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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Thyroid Tidbits: Men with low iron, Reverse T4 (yes, I said it correctly), Inflammation in thyroid patients, plus more

(No, the tatoo isn’t mine. It belongs to a gal who says STTM helped changed her life. Amazing and brave! 🙂 )

MEN CAN HAVE LOW IRON, TOO:

I’ve seen a few hypothyroid men who have found themselves with low iron. In fact, either iron anemia is growing in men, or we’re just hearing from them more thanks to the internet.

And remarkably, it has become personal for me. Turns out my own husband is very low, which explains the fatigue he had been experiencing lately. Sadly, taking iron pills gives him a headache, so he will eat high-iron foods daily, and will be exploring Floradix, a liquid herb-based iron. Men, get all the needed iron labs!

REVERSE T4 (yes, I said it correctly)

I’ve been having an email chat with a scientifically-minded guy named Brian who also has a sister with a major in bio-chemistry. And something dawned on both of them concerning “levothyroxine” which is the synthetic term for T4.  The prefix LEVO means the “left-hand” version of a molecule, and thyroxine is the biological term for the real T4.  Says Brian: “Levo-thyroxine means it has exactly the same atoms in exactly the same order, but not the same shape (handedness), so if enzymes or proteins have to chemically “fit” it to work, they may not be able to. He concludes this can be one reason being on synthetic T4-only does not work, and knew it was alluded to by Dr. Mark Starr.

But Brian continues: In just the same way that levothyroxine is the mirror-image or “left-handed” version of regular thyroxin, RT3, or Reverse T3, is the mirror-image or “left-handed” version of T3.  If we were consistent with our terminology, in other words, levothyroxine would be known as “Reverse T4”. Says Brian, just as Reverse T3 is biologically inactive , so is Levothyroxine, thus “Reverse T4”. I love it!

CHECK OUT WHAT THIS MEDICAL TRANSCRIPTIONIST SAID:

In a facebook discussion,  a female medical transcriptionist has had a realization. Namely, in almost every report she is transcribing into text or digital format,  a patient with the diagnosis of hypothyroidism also has a medical history of depression and/or anxiety. You can read about depression & anxiety here. Of course, no patient who is informed is surprised! They are HYPOTHYROID symptoms.  And she then notes the prescription ordered by the doc: Synthroid.  WAKE UP DOCTORS. You are only dooming your patients to a lifetime of depression, anxiety and far more.

WHY MANY OF YOU HAVE INFLAMMATION (and don’t even know it), WHAT IT DOES, AND HOW TO TREAT IT

One thing I see a lot when doing phone consultations, as well as on thyroid patient groups, is evidence that someone has low-grade inflammation. In fact,  research has already shown that a large body of folks with hypothyroidism have higher levels of CRP (C-Reactive Protein) which is a lab test marker of inflammation.  That inflammation, in turn, puts you at a higher risk of heart disease.

Another clue that you have an inflammation problem is having higher ferritin levels (i.e. ferritin looks great, or is too high) along with poor iron serum/% saturation lab results.  In other words, in the presence of chronic inflammation, your iron will be diverted to your ferritin iron storage, and less will be in your serum and saturation.  You can also find yourself with very low TIBC (Total iron-binding capacity). The TIBC is measuring the protein “transferrin”, made in your liver, and which transports your iron through your body. If this is the case, you can’t take high levels of iron supplementation, as explained on the above ferrritin page and more in the book.

What do you do? 1) Treat your hypothyroidism properly–a huge step in lowering that inflammation–with desiccated thyroid, NOT Synthroid. (Read the Things We Have Learned page on STTM, or even more details in Chapter 3 in the new Revised STTM book). 2) Treat proven low cortisol with HC or hydrocortisone. Don’t guess! Do a saliva test!) If saliva testing reveals you have adrenal dysfunction, cortisol supplementation will help counter inflammation.   (Read the Adrenal Info and How to Treat page on STTM, or more details in Chapter 6 in the new Revised STTM book.) 3) Use Krill Oil as a supplement. Krill Oil is an even better marine fish oil with rich amounts of Omega 3 fatty oils,  and research with even a low dose of 300 mg proves that it does a bang-up job in reducing inflammation as well as pain in joints associated with rheumatoid and osteoarthritis.  My own husband is on 1000 mg a day.

HAVE THE REVISED SECOND EDITION OF THE STTM BOOK YET? IT’S WORTH IT.

I am frankly extremely proud of the Revised Second Edition of the STTM book.  In spite of being a lot of hard work, it is good to see all the additions, details and corrections throughout the entire book.  There is much more on labs and how to read them, ferritin and iron, adrenal dysfunction and how to treat it, reverse T3 and how to treat it, plus a completely new chapter on good supplements and foods.  I added a little more hidden humor, which was fun.  There are now 36 more pages, too, and at the same price.  You can see more about the book here.  The book is ideal since you can bring that right into the doctor’s office with the information highlighted and bookmarked. As far as Kindle or other readers, yes, I’m already aware that some of you have requested it. But right now, it’s the book only.  But I’ll make announcements in the future as to what might be coming up.

P.S. Seeing this blog post via the email notification? If you have a comment to make, click on the title, which will take you directly to this blog post on the net, and comment there.

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