When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING.  I was put on Synthroid and my anticipation for a better life was profound.

But my hope was dashed. Not only did my body continue to overreact to activity, it got worse over time.  Horribly worse.  Nearly twenty years after I had started on a T4-only medication, and was told by one doctor after another that my problem was not my thyroid, I was going to apply for social security disability.

But they were all dead wrong. Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to stress. But remaining hypothyroid, as we all do on the sucky t4-only medications, had made it far worse. And I proved it. When I switched to Armour desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred.  My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis.  And though Armour has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is impressive.

So I am left wondering:  what other conditions or diseases, which are unique in themselves, are worsened being undiagnosed thanks to the lousy TSH lab test or the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin and all other T4-only medications? It’s awful to think about it.

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Last week, I had found my blood pressure quite high for me! Upper 140’s and some 150’s for my Systolic, and upper 90’s and lower 100’s for my Diastolic.   Stage One hypertension!  I was pretty sure my 4 grains may suddenly be a tad too high since entering meno.  My temps and heartrate implied that, too.

I got off Armour for two days to use up some excess, got back on one, then on 2 grains multi-dosed.  My plan is to make my way back up to 3 1/2 grains by a week or slightly more…and see.

In the meantime, I have been using some blood pressure lowering supplements (high dose potassium, grape seed extract, Braggs Apple Cider Vinegar in juice, more CoQ10 than normal, plus my regular supplements).  I was more faithful to my treadmill walking (thanks to an April that still thinks it’s winter), and meditating. The latter two definitely helped lower both the Systolic and Diastolic, even if not low enough for my ideal.

For the last five days, my BP readings have still been too high. All those days, I had been seated on our couch. I put a pillow in my lap, laying my arm on that pillow, which meant my arm was slightly downward.  Sometimes my wrist would hang off the pillow.

Today, I decided I wanted to test something I have read. Namely, it’s actually quite important how you place your arm. The recommended way is placing your arm perpendicular to your body and at the height of your heart or a tad higher, all while comfortable resting on something.  Elbow can be flexed, but your arm must still be perpendicular to your body and about heart height or slightly higher.

Below are four of my most recent afternoon BP readings with pulse: two with the Left arm, then two with the Right arm.

L:  139/106   98  (arm hanging down and resting on seated leg)
L:  122/88 89  (arm up, perpendicular to my body, supported by pillows)
R:  141/87     92  (arm hanging down and resting on pillow)
R:  123/85 89 (arm up, perpendicular to my body, supported by pillows)

What you should note is that the first L reading, and the first R reading, were with the arm relaxed on a pillow but lower than my heart.  The second of each is with the arm on two pillows, putting it perpendicular to my heart,  with elbow flexed, and all of arm completely supported.

I was shocked! Putting my arms in what research is saying is the CORRECT position gave me much better readings. I am VERY pleased with the 122 and 123.  Much better. And though the 88 and 83 Diastolics are not to my liking yet, and tell me I need more work, the difference between the arm positions was stunning….as is the difference in what I’ve been getting for five days.

More info: it was brought to my attention that taking a second BP reading is usually always lower anyway. Ah, I thought, that’s correct! So to test this information based on research, I went back last night before bedtime. First took my BP with my arm in the upper correct position. Then the second time, took it with my arm down.

138/89 (up perpendicular to body; level with heart) pulse 80
146/100 (arm down) pulse 82

The second did NOT go down. It went UP! Interesting.

*Want to be informed of the STTM blog postings?? Curious what’s on my mind? Just use the Notifications to the left at the bottom of the links.

**Are you in the US and want to help make sure we don’t end up like the UK, having our Armour taken away?? In the post below, I have given you SEVEN STEPS that I hope you will follow through on!  YOU can make a difference.

p.s. Also see Sheila’s experience on the Feb. 20th post. Awful

Want to be informed of these blog posts? Curious what’s on Janie’s mind? Just go to the notification on the left and bottom of the links.

1) That the NHS is correct to ban Armour

2) That Armour is a “second drug” that causes harm.

3) That it’s only “fringe” patients who don’t do well on T4

4) That none of the above patients are hypothyroid

5) That they don’t feel well on T4 because of other reasons

6) Therapy is not needed if the TSH is below 10

You know what patients have a fantasy about, Dr. Gutler?? That folks like YOU become hypothyroid and are put on T4. You’ll then have to eat dirt as you see your blood pressure rising, or your cholesterol doing the same, or depression and fatigue setting in, or your adrenals overworking, or weight gain and a host of other continuing symptoms of hypothyroid while on T4. OH WAIT. Those are all due to something else. Gee, let’s put you on anti-depressants, statins, blood pressure meds, pain meds, anti-anxiety meds since those “other” reasons never seem to be fixed.  OH WAIT. They DO get fixed when these same patients are switched to Armour or any other desiccated thyroid, and have addressed their low cortisol or low ferritin thanks to years of undiagnosis or undertreatment with T4.

SHAME ON YOU.

p.s. It’s because of opinions like yours that the Stop the Thyroid Madness book has been sent to patients in over 16 countries, so far. People want to find out the TRUTH.

Update: you can read Sheila’s and UK-TPA’s response here: http://www.stopthethyroidmadness.com/uk-tpas-response-to-the-rcp/

See more from Sheila that gives UK patients hope: http://www.stopthethyroidmadness.com/relationship-between-the-RCP-and-MHRA/

Want to be notified of my blog posts? Curious what’s on my mind? Use the Notification method to be informed. Look on the bottom left of the links where you can sign up. )

Even 1 1/2 years ago, over 2000 professionals from a variety of disciplines called the US Congress to end Fluoridation of water, citing it’s toxicity and the deception of putting it in our water. You can read their call to action here.

The importance of this call lies in each of us with thyroid disease, since fluoride is a KNOWN inhibitor of our thyroid function.

As of Feb. 9th, 2009, the Courier Post Online of South Jersey has an excellent article on the problem of our extreme exposure to fluoride.  This article cites the following facts:

1) 53 US cities rejected fluoridation during our last November election
2) Ingested fluoride can damage kidney patients, bones, the thyroid gland, high water drinkers, and children’s teeth
3) Studies linking fluoride to cancer and lowered IQ are plausible.
4) In 2007, the British Medical Journal indicated that fluoridation never was proven safe or effective and may be unethical.
5) Health Canada says the government should cut the recommended amount in drinking water, encourage the use of low-fluoride toothpaste by children and have makers of infant formula reduce levels.

I personally made a point to stop using any toothpaste with Fluoride a few years ago.  I also supplement with iodine, since fluoride displaces iodine levels. Sadly, I still love iced tea, which contains fluoride.  But YOU can avoid more fluoride exposure by finding a way to get off anti-depressants and osteoporosis medications which contain fluoride, and that is especially possible when you are optimal with Armour desiccated thyroid in presence of strong adrenals or optimal cortisol supplementation.

Recently, after we watched a semi-scary movie about being suckered, a friend brought up my blog post of last July where I described a terrifyingly-real horror movie.

The plot: stunningly convince hundreds of millions of individuals worldwide that what is obvious, isn’t. i.e. it’s all in your head, you are adequately treated on Synthroid, Levoxyl, Eltroxin, Norton, et al,  and not only that, we’ll bandaid your continuing problems with more medications.

A second plot: also completely hoodwink those with top notch higher medical educations and experience by churning out the the exact same poppycock, and reward their stupidity with gifts.

The central villian: Big Pharma, followed by the doctors who bought the lie

Exactly a year ago this month, Science Daily came out with an article, citing two York University researchers who estimated that the U.S. pharmaceutical industry spends almost twice as much on promotion as it does on research and development, contrary to the industry’s claim. In other words, the researchers estimated that $57.5 billion in US dollars was spent on pharmaceutical promotion in 2004–the year they were studying. Yes, I said BILLION.

Breaking that down, Big Pharma spent approximately $61,000 per physician in promotion of their products.  And they concluded that both figures were UNDERestimates.  In other words, they concluded that the US pharmaceutical industry is marketing-driven rather than “life-saving”.

And adding fuel to the fire: most doctors believe every thrust of that marketing. I recently participated in comments with other wonderful patients in response to a DO/Endocrinologist, Dr. Thomas Repas, who has clearly bought the Big Pharma marketing when it comes to levothyroxine. You can read his posts and our comments here, here, and here.   Dr. Repas is exactly the kind of doctor who has  starred in our horror movie, and the kind of doctor that patients have lamented about for years.  Read the  Give Me a Break list of comments made by doctors, as well as further comments on the January 1st blog.

But Dr. Repas is in good company. Doctors have believed the Big Pharma lie about T4-only medications, and against desiccated thyroid like Armour, Naturethroid, etc. for 50 years.  In the patient-to-patient  Stop the Thyroid Madness book, you can read about the first tableting of Synthroid in 1955 and the strategic and successful promotion of T4-only, in spite of the fact that T4 was known to be unstable for decades.

And today, more than 50 years later, very few of us have been untouched by the Big Pharma push for levothyroxine T4-only treatment.  My own mother was suckered, and I was suckered.  And until patients started to make a huge push for desiccated thyroid treatment the last few years, nearly every single doctor around the world had been suckered.

We still have a way to go. But we’ll get there, bit by bit.

STTM has created lab profiles in partnership with MyMedLab, a direct-to-consumer lab facility which has expanded to provide services to nearly the entire United States

This lab facility promotes the empowerment of patients in their own care, similar to STTM’s focus on educating the patient and expecting a partnership when you walk into the doctor’s office. Empowerment!

You will find a combination of both in-home collected tests (saliva cortisol) and those performed at LabCorp collection sites across the US.   Take a Peak: STTM Lab packages (be sure and click on the green What’s Included icon on the lower right. You get a lot!)

And it dawned on me: if desiccated thyroid with its T4, T3, T2, T1 and calcitonin did this for ME, what could it do for others?!I  A group was NEEDED with a direct focus on desiccated natural thyroid.

And over time, as NTH grew and other fine internet patient groups evolved and grew, other patients were just as amazed at what it was doing for them, as well.  This wasn’t coming across at ALL as a treatment only for “some”. It was coming across as a treatment that might just benefit quite a large body on individuals! We also learned by the seat of our collective pants about low ferritin, low cortisol, low B-12, Celiac and gluten intolerance–you name it.

From all the above came the STTM movement: a patient-to-patient compilation of all we have learned–and then the book with even more information.  The STTM movement was created because “internet groups” were NOT enough to get the word out about the efficacy of desiccated thyroid, nor were they enough to change the huge and rigid medical establishment. Change had to come from the bottom up–in other words, educate patients, who in turn can take the new information into their doctor’s offices.

But sadly, with the success of patient information about the amazing results of desiccated thyroid treatment has come veiled criticism and overblown misconceptions within our own ranks. And it’s a sad thing to behold!

Namely, we can now read a September 10th internet blog “conversation” by so-called thyroid patient advocates who imply that it is “dogma and narrow-minded” if anyone dares state there just might be a thyroid treatment which JUST MIGHT BE better for most all thyroid patients. IMAGINE the audacity!! I guess it was just as “dogmatic and narrow-minded” when it was first suggested there were better ways to deal with certain health conditions than bloodletting. I can hear it now: “To deny bloodletting is just boxing people in!” “Offering bloodletting as a choice is helping people expand.”

And contrary to the self-righteous tone, condescending misrepresentations, and veiled criticisms towards certain patient groups, this patient movement is not a one size fits all movement.  Instead, it’s a “one size JUST MIGHT BE a better alternative” than the other available alternatives, and we strongly encourage that each patient consider finding a doctor to help them give it a try.  And, if something about desiccated thyroid isn’t working, we strongly encourage patients to look at particular reasons that can underlie problems.

If you think T4 is working for you, go for it! The same goes for the use of T3 only, or synthetic T4/T3, or certain ratios of T4 and T3.  Choice is a blessing we can all respect.  Just keep an eye out for depression, rising cholesterol, less stamina than others, adrenal issues and/or a myriad of other continuing hypo symptoms that just might creep up on you as you age on these treatments.  Or, consider that we’ve seen many people on these treatments, who, when they switched to desiccated thyroid like Armour, Naturethroid, Westhroid, etc, they reported even better results. (The use of T3-only for high RT3 is a different issue and is where T3-only may be absolutely needed and good. We also respect those who have ethical issues with animal products.)

Finally, I encourage others who consider themselves thyroid patient advocates to TAKE A BIG BREATH and TAKE THE TIME to be in open-minded dialogue with all patients, including me and all of us over here, instead of openly ignoring our existence or deciding what we promote is simply narrow-minded dogma.  You might find that direct communication and kindness is a far better method to help thyroid patients instead of the underhanded veiled bashings and misrepresentations within this recent blog conversation.

Until recently, I thought our thrust and determination to change the Big Pharma, zombie-doctoring medical system in the treatment of hypothyroid would be like the hare. We’d get the attention of the mass media through our great determination, shout the message of a FAR better thyroid treatment, and create huge change.

But I think I was wrong. Change has occurred, but we have been doing it like the tortoise…slow and steady.

Slowly but steadily, we are seeing more and more doctors starting to “get it”, even if they still have a way to go. Slowly but steadily, folks are finding out why they have less stamina than others, or depression, or rising cholesterol, or fibromyalgia, or thinning hair in the face of the dogged “normal” diagnosis…all due to an inadequate medication called T4, aka Synthroid, Levoxyl, Eltroxin, et. al. and a lousy lab called the TSH.

Slowly but steadily, folks are finding out about desiccated thyroid to treat their hypothyroid, and cortisol to treat their adrenal fatigue.

Even the STTM book has been like the tortoise. Literary agents didn’t get it, nor did huge publishing companies. I finally stopped counting, but I bet I had over 200 rejections. They all thought it was simply “another” thyroid book. So the fruition of the STTM book came out of true sweat and tears, and a lot of cuss words as I squirmed through my frustrations. Yet, the STTM book–a PATIENT-TO-PATIENT book of which I was only the messenger, is not only a steady seller like the tortoise was steady, but sales keep growing every month, reviews are excellent, and lives ARE changing. How can you criticize a message, whether the STTM site or the book, that is based on the positive and critical experience of thousands of patients around the world!!

Change IS happening! Like the tortoise, we’re winning the race and creating change, bit by bit, whether it’s via STTM, various internet thyroid groups, other good books, or just word of mouth. We’re all a part of it. But we can’t be complacent, because it’s truly obvious by blogs and websites I read that there’s still a huge body of hypothyroid patients still suffering on T4 who need to find out what WE have found out. But it will happen, bit by bit.

The YES

Sometimes I can say a resounding yes! There are many doctors around the world who are looking at Stop the Thyroid Madness (STTM) and listening to what is says. STTM is about the real life changing experience of patients! Some doctors tell me outright, either via the Contact Me form or by responding to my blog posts here, that they are reading it and approving the information. Or, I find out about other doctors second hand by patients who tell me their doctor TOLD THE PATIENT to read STTM. The latter definitely makes me chuckle when so many doctors tell patients that information on the internet is DANGEROUS!

I can also say yes when I read the comments of patients on various thyroid patient groups on the internet. Because of the information patients have learned from STTM, which is in turn passed into the groups, patients all over the world are making demands in their doctor’s offices, and some progress is being made all over the world.

And a final yes can be uttered by me when I see a few but growing number of websites promote desiccated thyroid.

The NO

But there are so many situations where I have to say no. 1) When doctors on internet forums TO THIS DAY continue to give lousy advice to thyroid patients, it’s disheartening. 2) When patients on thyroid patient groups TO THIS DAY continue to have doctors state each and every ridiculous give me a break comment, it’s sad. 3) When a famous female talk show host continues to ignore each and every email sent to her for years about the deplorable situation across the world with thyroid patients, as well as seem to misunderstand her OWN thyroid and potential adrenal problem, it’s maddening. 4) And when I can run into patients DAILY when I go to the grocery store, or to the gas station, or to any public place, who are still on Synthroid or Levoxyl and coping with innumerable symptoms of a poor treatment, not excluding adrenal fatigue, it’s scandalous.

So the complete answer? Yes and no. The ball has definitely been rolling for better treatment. Some doctors out there are truly listening. Many patients out there are learning and demanding change. It’s happening. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who question their treatment, find answers via STTM and other websites and patient forums, and continue to demand change from their doctors and the entire medical establishment. I just hope to see more change sooner than later, don’t you?!

p.s. Want to spread the word?? Go HERE to order a t-shirt or bumper stickers. You CAN make a difference!