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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.
24 replies

Why you, as a hypothyroid patient, need to be aware of the Epstein Barr Virus

STTM Epstein Barr Virus Garage Sale

Though this blog post was originally written in 2010, it has been updated to the present day and time, making it current.  Enjoy!

This past Saturday, while browsing at the next-to-last garage sale (one of my favorite Saturday morning events), my ears perked up like a bunny when I heard a gal chatting with the owner of the house.

I heard things like “sick for 5 years…fibromyalgia…a lot of pain all over my body…had to quit my job and live with my parents…in bed for two years…they had to bath me...” and more miserable images of something she was clearly glad to be over.

So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.

As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue, thanks to the garbage can TSH lab test or the inadequate treatment of T4-only treatment like Synthroid.  Yet, here was a young woman, Mel, who was now the picture of health. What was her story??

Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain,  immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters–right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.

But I knew right away what she probably had: acute Epstein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years).  And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.

And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS.  For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.

And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat.

Reactivated EBV can result from one or more of the following biological stresses:

  • being undiagnosed thanks to the inadequate TSH lab test
  • being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
  • falling into low cortisol from adrenal fatigue
  • having chronic side issues pulling your body down such as gluten intolerance or celiac, low iron, poor digestion, or making mistakes in your treatment

Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.

What is EBV?

Epstein Barr Virus,  also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager,  but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!

Why do so many thyroid patients find themselves with reactivated EBV?

Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands.  Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment–all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.

What are symptoms of a reactivated EBV?

It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well–the latter all the more so after activity. When my EBV antibodies were acute, I would be in bed for 2-3 days after pulling weeds for just twenty minutes while seated.  I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.

How do I find out if I have reactivated EBV??

Ask your doctor to send you to a lab to be tested for it, and be sure you clarify that you are not asking for tests that show you were exposed it (most of us have). Instead you are asking for the testing which shows it has reactivated.  Or you can order it yourself via the labs I have listed here.

How do I treat it??

It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum),  Vit E as mixed tocopherals,  selenium (200 – 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods.  There are also great natural anti-virals I would recommend exploring. And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal issues, gluten or digestive issues, low iron, and all other related conditions.

Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.

I’ve read that most all cases of hypothyroidism are due to EBV?

Not according to the experiences and intelligence of thyroid patients worldwide. Yes, there is some evidence that having reactivated herpes viruses like EBV could contribute to a hypothyroid state. But it’s rare, and is only one of many causes of hypothyroidism, not “the” cause. Far more common are genetic causes (numerous genes have been identified), as well as the well-researched organ-targeted autoimmune cause of Hashimoto’s. See this page. There are also studies that consistently show that reactivated EBV does not trigger Hashimoto’s or Grave’s–the latter also falsely stated.

Want more detailed information on EBV? Order the STTM ebook and become informed!

Namaste Janie

*** Have you Liked the STTM Facebook page? It gives you daily tips, information and inspiration!

90 replies

Why Forest Labs had gotten away with a “newly formulated” Armour that is causing so many problems

Armour tablets

 

This post was originally written in 2009, and gives you great history as to the disappointing change that happened to Armour as reported by patients. But it happened again in 2015, and you can read that here: //www.stopthethyroidmadness.com/2015/09/19/armour-and-unhappy-thyroid-patients/

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Numerous and ongoing comments to my blog posts below about the newly formulated Armour are shocking and despairing.

Additionally, thyroid patients are crying out about the loss of being able to do Armour sublingually. (Was Forest Labs not paying one hoot of attention to thyroid patients the last few years in their praise of Armour because of it’s sublingual effectiveness??) Sublingual administration was a godsend for thyroid patients who had digestive issues, including gluten intolerance and Celiac, as well as those who needed to take iron tablets (which you can’t do at the same time as you swallow desiccated thyroid, but could do with taking Armour subingually)

So how in the world did Forest Labs get away with reformulating and producing a product that so many patients are reporting to be problematic?

It’s not FDA approved. As many of you may know, Armour desiccated thyroid, even when it was produced by a pharmaceutical other than Forest Labs, was around far before the FDA (Federal Drug Administration) came into being in 1938.  That’s why it does not have the designation of  “FDA approved” as do those drugs which were created after the FDA existed. It’s called an unapproved drug, but Armour was presumed to be safe and effective already.

From the FDA: Under the 1938 grandfather clause (see 21 U.S.C. 321(p)(1)), a drug product that was on the market prior to passage of the 1938 Act and which contained in its labeling the same representations concerning the conditions of use as it did prior to passage of that Act was not considered a new drug and therefore was exempt from the requirement of having an approved new drug application.

Because it’s not “FDA-approved”, it does not have an NDA, aka New Drug Application. An NDA is used by the FDA to establish if the pharmaceutical product is safe,  EFFECTIVE, more beneficial than side effects, and has in-house  “controls” which maintain the quality, strength and purity of the product. (Thanks to “Ben” the pharmacist for reminding me of this.)

So…without that NDA, Forest Labs is, and has been, on their own, including with the latest introduction of a newly formulated Armour. So you might say, WE as patients were the guinea pigs.  And sadly, we’ve been squealing and it’s a muddy picture.

The most important fact to state: USP (United States Pharmacopeia) desiccated thyroid is an effective and important drug which is changing the lives of a huge and growing body of individuals around the world. That was evident before Armour was reformulated, and is still evident with products like Naturethroid or Westhroid, which many patients are switching to.  See my blog post about Naturethroid here, plus RLC Labs comment about Naturethroid here.

But something has gone terribly wrong with the reformulation of Armour, and patients appear to be leaving it behind in the dust in favor of another great and effective brand like Naturethroid. And whether it’s the fillers are not, Forest needs to take a new look at their reformulation of what was once a GOOD product, and hopefully this time, LISTEN TO PATIENTS.

– Want to be informed of these important blog posts? Curious what’s on Janie’s mind? Just use the Notifications below.

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69 replies

Tips on how to do desiccated thyroid sublingually

Though this was originally posted in 2009, it’s been updated to the present day and time!

The brand of Natural Desiccated Thyroid called Armour used to be easy to do sublingually, even if the official line was they didn’t make it that way. That means letting it dissolve under the tongue which can potentially make its way to the sublingual gland under the bottom of the mouth and more directly to the cells.

And patients liked that sublingual ability with Armour.  It allowed them to work around the problem of swallowing desiccated thyroid several hours from having swallowed iron, estrogen or calcium–all which can bind ‘some’ of the thyroid hormones in your stomach.

It also helped those with digestive issues, since some of it may be bypassing the stomach.

But with the first newly formulated Armour in 2009, it became difficult. The pill became harder with less dextrose and more cellulose.  It now fell into the ranks of all other desiccated thyroid pills, including Naturethroid and other good brands, as a more dense tablet.

Tips from patients on how to do sublingual

Even for those NDT brands which are made quite hard, below are tips from patients on how to continue doing  desiccated thyroid sublingually. Let your doc know, too.

1) Some are adding a tiny touch of the contents of a Pixie Stix under their tongue. It’s flavored sugar in a straw, and the sugar seems to help the tablet dissolve sublingually through tissues under the tongue.

2) If you are using sublingual B12 lozenges to treat low B12, try adding it under the tongue with your desiccated thyroid. The action of the sublingual lozenge seems to move over to the thyroid tablet, say some.

3) Swish warm water in your mouth before you place the tablet under your tongue.

4) Crunch up the desiccated thyroid tablet before any of the above and before placing it all under your tongue.

Can’t I just swallow my NDT?

Definitely. You’ll just have to make sure you don’t also have a stomach full of iron rich foods, calcium or estrogen. Generally, it’s best to take your tablet away from any of the former, such as a two hour difference at the minimum.

*Have more sublingual ideas or experiences? Share it in the Comments section.

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notifications to the bottom right of the links.

56 replies

Thyroid patients say PHOOEY to new Armour formulation and Forest Pharmaceuticals

armourtabletsugh1 As the “newly” formulated Armour desiccated thyroid pills, made by Forest Pharmaceuticals/Laboratories, have been hitting the market, so are comments coming out from some thyroid patients…and they are not in the least complimentary.

The reason that Armour had been favored by so many thyroid patients among all the desiccated thyroid brands is the ability to take it sublingually.  Sure, Armour was never officially made to be taken sublingually, but it worked.

Sublingual refers to the administration of a medication via the millions of tiny capillaries that line your mouth and mucous membrane. The pill was placed under the tongue and allowed to dissolve–most of it entering the body directly via your sublingual glands, and only a small amount swallowed.

Some patients who switched from swallowing to sublingual noticed the difference, too.

But the beauty of sublingual has gone even farther than noticing anything different. First, it was always a known “baddy” to swallow any pills that might contain iron, estrogen or calcium at the same time we swallowed Armour or any other desiccated thyroid brand. Why? All three interfere with and bind a certain percentage of the thyroid hormones in our stomachs.  We were forced to take any of those hours apart from swallowing our pill. So doing the Armour sublingually allowed us to swallow the above pills, or drink milk, or eat high iron foods, at our own timing and not hours away.

Second, the old formula was usually gone in our mouths within 30 minutes give or take. Now, patients who take their newly formulated pills sublingually (which now has less dextrose and more cellulose) despise the “chalky, pasty, gritty residue” left in one’s mouth.  It also results in Armour taking far too long to be properly absorbed.

Third, those with adrenal fatigue can find themselves waking up with nausea due to the morning low cortisol. And being able to take Armour sublingually bypassed the need to swallow a liquid to take a pill and promote more nausea.

Fourth, those with Celiac disease, and even those with standard low thyroid digestive issues, found sublingual administration to help their absorption of what desiccated thyroid offers, which they didn’t get well if they swallowed the pill.

All in all, the buzz around patient groups or on comments here  about the newly formulated Armour is not complimentary.  It doesn’t work well sublingually. It’s too chalky. It leaves a gritty paste in your mouth.  And patients are highly disappointed.  Let’s hope that one of the pharmaceuticals takes the ball and runs to create a sublingual desiccated thyroid.

What is your experience with the new formulation? Are you still trying to do it sublingually?  Have you found doing Naturethroid sublingually works? Are you switching to Naturethroid or Westhroid out of principal, as many are stating they are doing? Use the comment section and let’s talk.

*Express your opinion to Forest here: 1-800-678-1605, ext. 66297.

*Want to know what’s on Janie’s mind? Want to read the latest about desiccated thyroid and better treatment? Use the Notifications on the left at the bottom of the links.

108 replies