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About Quinoa; Mistakes made on T3-only; Thyroid Patients and West Nile Virus

“WHAT IS THAT??”

As a thyroid patient who went to hell and back thanks to 20 years of a lousy treatment by allopathic medicine, I care about my good health and what I eat. So I attempt to balance my eating sins. And when I was recently at a salad bar, I couldn’t figure out what a particular bowl of food was, sitting next to mixtures of fruit, pastas, etc.

It looked like “frog eye salad”, which is made up of teeny tiny b-b size pasta and sweet fruits. But this had tomatoes in it. And the small round things had a thin white line around them. Were they fish eggs??

Turns out its a high protein, higher fiber whole grain called Quinoa (pronounced keen-wa), and is loaded with nutrients, including the minerals iron, zinc, and selenium, plus vitamin E and lysine, and all essential amino acids. I got a scoop and I was impressed.

And voila….if you need to be gluten-free, this grain gets the mark! I plan on buying some at my local health food store for an occasional hot breakfast cereal (as I suspect my husband would do better avoiding gluten thanks to frequent digestive issues), besides strongly recommend it to my husband’s niece, who badly needs to go gluten-free to lower her high inflammation levels.

Don’t feel the need to avoid gluten?? This still looks like a great grain and food to become familiar with, which I’m going to do! But a word of warning: it’s not low carb. So like any carb you intake, you’ll want to eat it in moderation.

KEY MISTAKES IF YOU ARE ON T3-ONLY, says a lot of patient experience

Though ten years of strong patient experiences show that natural desiccated thyroid gives the best results for thyroid disease, some thyroid patients have to be, or choose to be, on T3-only. It’s definitely a far better treatment than the lousy T4-only treatment with Synthroid and other brands.

And along the way, we’ve figured out some mistakes we may be making when using T3-only:

  1. Dosing rigidly every certain amount of hours  When patients were first learning about using T3-only (which requires more multi-dosing at first than does natural desiccated thyroid), we thought it was a good idea to dose rigidly about every 4-5 hours or so, thinking that T3 would peak about 4 hours after taking the first dose, then make a fall, and you’d then need to replenish your levels. We were wrong with that rigidity.It can be very individual when one needs a dose of T3. Some might need another dose of T3 in three hours after taking the first one due to a higher metabolism. So if they go longer, they put themselves in an increasing hypothyroid state. Another person might be a slow metabolizer and only need their next dose in 5 or 6 hours. So if you take it too soon, you put yourself in the direction of a hyper state.Turns out you need to be dosing  T3 when your body tells you it’s time you need it! How to know? Your signs and symptoms. Look for clues that you need your next dose, like a rising heartrate or blood pressure, depression, fatigue, or any hypothyroid symptom unique to you. Notate that on paper, then you’ll know to take your T3 right before that time the next day. It might take a few days of experimenting to figure out when your ideal dosing times are.
  2. Multi-dosing T3 too many times during the day As patients, we used to think that we need to dose T3 up to four to fives times a day in smaller doses. But with our new knowledge about T3, several patients have noted noted that moving dosing to 2-3 times a day, and thus in larger amounts each time, has resulted in better treatment of their hypothyroid state, especially with better cortisol levels.
  3. Thinking that different brands of T3 are equal  Unfortunately, some brands of T3 are weaker than others. And occasionally, some batches of a better brand may be bad due to heat exposure.  Generally, patients have reported Cytomel to be of a quality and consistent strength. Cynomel has been reported as equal in strength, but lately, patients have found some batches to be weak and are reporting this to the company. UK’s Liothyronine by Goldshield has been reported by patients as weaker in strength all the time.  All in all, Cytomel has received the most positive scores.

Using T3 all day while doing the T3 Circadian Method (T3CM) for your proven adrenal fatigue?? As your adrenals kick back in, you may notice that you 1) need to space your T3 farther apart, and 2) that you will need less T3.

WEST NILE VIRUS IS BACK LIKE A VENGEANCE: WHAT YOU AS A THYROID PATIENT SHOULD BE DOING!

Found out that a cousin of mine, who’s a father of two young children, found himself with West Nile Virus several days ago. I got West Nile about 5 years ago, as well. For many of us, it’s like the WORST flu you ever had, and you can take a few weeks to get over your post-illness weakness.

And since having a compromised immune system (as struggling hypothyroid/adrenal patients can have) makes one more vulnerable to the virus effects, I can see it being imperative to be on immune-supportive herbs right now, besides putting on some kind of mosquito repellant of your choice. I also read about Lomatium root, which is supposedly very anti-viral. I would talk to your local health food/supplement store for recommendations.

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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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The UK’s GMC is at it again—challenging Dr. Skinner! Your help is needed.

What in the world is up with the medical system in the United Kingdom??

UK thyroid patients report it’s almost impossible to be on natural desiccated thyroid–a treatment which simply gives a thyroid patient back the T4, T3, T2, T1 and calcitonin that a healthy thyroid would be making.

And now, the General Medical Council has decided to once again challenge a doctor who DARED to treat symptoms with a lab result in range, even though the patient clearly has hypothyroid symptoms. Thyroid patients are INFORMED patients, and we know the difference between what a man-made fallible lab range shows, and how we feel, especially the lousy use of the TSH lab test.

I first wrote about the Circus of Shame concerning the challenge Dr. Skinner’s fitness to practice here, which was 2006.  Finally, five years later in 2011, you can read about Skinner being exonerated of all charges here! It was exciting.  Sheila of TPA-UK outlines concerns with this entire fiasco here.

But it appears the General Medical Council wants to keep playing this broken record. They now have 5 more charges against him–i.e. the same old stuff about treating within the reference range.  MANY patients have been treated with their lab test in range and report their lives changed!!

Says Sheila Turner of TPA-UK stated today, Feb. 18th, “Dr Skinner has 3 working days to get his defence together, he was away last week, and came back yesterday to find a big bundle in his post from the General Medical Council. The following is what I posted to all of my members yesterday. We have heard nothing more from the GMC or from Gordon’s legal team as we are now into the weekend, so will have to wait until Monday morning. As much as I know I have written below. See the last day of the GMC hearing and the Panel’s decision at that time. It just beggars belief. here http://www.tpa-uk.org.uk/skinner_hearing_transcripts2.php .”

YOU CAN HELP!!  Use the following to email short messages of support about being treated successfully with a lab result within the so-called normal range:  IOPTeam@gmc-uk.org with Dr. Skinner’s name and reference, C1-462487326 by this Tues 21st. The hearing (with hardly any notice) is on Wednesday 22nd Feb.

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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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Taking your temp, Selenium and RT3, TPA’s Autumn Newsletter, and HealthcheckUSA’s discount to STTM readers

NOTE: though this post was originally written in 2011, it can still contain relevant information for you today to consider, or do further research on. 

(Photo graphic by thyroid patient Sam Aliyev of Azerbaijan, Baku city.)

TAKING YOUR TEMPERATURE CORRECTLY?? Possibly not.

Thanks to Dr. Broda Barnes, informed thyroid patients know the importance of taking one’s temperature, especially just before we get out of bed in the morning. According to Barnes, we can suspect a thyroid problem if that temp is below 97.8. Conversely, healthy thyroid function (or adequate treatment) would  put our before-rising temp from 97.8 to 98.2. (Menstruating females would need to be aware of higher temps right after ovulation.).

Today, we favor the mercury thermometer over digitals for accuracy. But are we using the mercury thermometer correctly? Maybe not.

A discussion between thyroid patients recently underscored the need to leave it in the mouth longer than the 5 minutes we thought was adequate. Thyroid patient Jennifer states: At 5 minutes it read 97.6, at 10 minutes it read 97.8 and at 15 minutes it read 98 degrees. After that, it stayed 98 degrees.  We then discussed the fact that manipulating the muscle in the back of throat could have caused the final temp. But her experiment, as well as others, underscored that we need to be holding that mercury thermometer in our mouths no less than five minutes, and ten is probably better.

DOES SELENIUM REALLY CAUSE A RISE IN REVERSE T3 (RT3)?

The above statement about selenium causing excess RT3 has oft been repeated from group to group for a few years. But it may be very wrong.

For example, this study shows selenium did not cause a rise in RT3, and in fact, lowered  it. Here is one which shows LOW levels of selenium can result in increased RT3. This medical book states that though RT3 comes from T4, it also concludes that  low selenium increases RT3.

In other words,  though the enzymes that convert T4 to T3,  and convert T4 to RT3, are selenium dependent to do their job, that doesn’t mean that selenium is going to increase your RT3.  Bottom line, many thyroid patients love selenium, especially with its power to lower Hashimoto’s antibodies, and being anti-cancer. Suggested levels are no more than 400 mcg.

TPA’s AUTUMN NEWSLETTER IS OUT–many good articles!

TPA stands for Thyroid Patient Advocacy, and is a UK charity organization started by Sheila Turner. Check out the articles below in the latest newsletter.

Page 5: The Big Question – Is There an Anti-T3 Conspiracy.  Eric Prichard critically questions why those in Endocrinology need to cite numerous anti-T3 studies, in spite of many other studies which reveal the activeness and superiority of T3. Is the UK and other dark age countries ever going to get it?

Page 9:  Why I Believe T3 Should Be the Very Last Treatment that Thyroid Patients Consider.  Don’t let UK’s Paul Robinson’s title fool you. He believes in the efficacy of T3, but underscores why it can be complex to dose with just T3. Especially compelling are what follows Paul’s article, titled MEMBERS SUCCESS STORY.  Story 1 is about an individual who, when dosing T3 in the early morning hours, was able to get off all adrenal meds. Story 2 is about a gal’s successful transition from T4 to T3.

Page 15:  Thyroid Patients Have Come a Long Way, Baby….But We Still Have a Way to Go!  Though there are now numerous patient groups on the net and many lives have changed, Janie Bowthorpe (yes, me) explains how many doctors still have a long way to go in understanding how T4 and TSH fail patients, just as desiccated thyroid or T3 have turned miserable lives around.

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8 replies