It's NOT working! It NEVER has!! It STILL doesn't!!

Janie's Thyroid Blog

May 16, 2008

If this is normal, I’m not impressed

Related categories: Doctors

I have a 40-something relative who I’ve been getting to know better lately. When she found out I had written the STTM book, she got a copy and read it. Her eyes were apparently wide as to what she was reading, especially the Thyroid Stimulating Hooey chapter. Turns out she has had fatigue problems for at least 14 years, right after her daughter was born. And it shows in her eyes and demeanor. But that’s not all. She’s continually gained weight all these years, even though she eats like a bird, and enough depression to warrant an anti-depressant. She was also getting worried about her cholesterol. Typical hypothyroid symptoms.

And worse (anybody identify with this?), she’s been told she is NORMAL for 14 years!!! Why? Because the TSH lab result said so. Talking about it brings her to tears.

I sent her to a MUCH better and hopeful doctor.

In 2006, the World Health Organization defined health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. So…if you stuck “normal” in front of that definition of health, as ignorant doctors so routinely tell us we are, it means that we have the symptoms expected of one who is in complete physical, mental and social well-being. THEN WHY DON’T WE FEEL THAT WAY?????

Yessirree, somewhere along the medical perspective timeline, the ability to pay attention to CLINICAL PRESENTATION ran right down the sewer. And with that loss has come HUNDREDS OF MILLIONS of patients worldwide with the schizophrenic diagnosis of “normal” with raging symptoms thanks to ink spots on a piece of paper called the erroneous TSH range. Exactly why this website is necessary, as is the book and YOUR demands for better treatment.

I was schizophrenically normal for over 17 years. My relative has been for 14. How about YOU?

Janie @ 4:41 pm

April 12, 2008

The STOP THE THYROID MADNESS book is out!

Related categories: Information, book

UPDATE: I am pleased to announce that the most gutsy, revolutionary, comprehensive and practical book on the subject of diagnosis, treatment, and medications for hypothyroid, as well as related conditions, including low ferritin, adrenal fatigue and other problems which befall hypothyroid patients…is out! This is YOUR book as a patient-to-patient book.

The link below will take you to the Publisher’s website. On the home page, you can read about the publisher. Then click on the PRODUCTS page to see the book and information. Click on the DOUBLE GREEN ARROWS to open up the entire text plus shipping information.

www.laughinggrapepublishing.com

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Yup, it’s done. It’s complete. And I can say without a doubt that there is NO book on hypothyroid as hands-on as this one. Why can I say that? Because the book is based on YOUR EXPERIENCE and thousands like you. Because this is THE patient-to-patient book. Yes, I wrote it, but YOU wrote it, too.

Where is the STTM book available? It will FIRST be available right here on the site in approximately two weeks. It’s about 300 pages and will sell for 19.95. So keep coming back here.

Is the STTM book a copy of the website? Not exactly. Yes, you will see some things in the book that ARE on the website. That was important. But….you will also find a chapter totally on T3. You will learn some history that’s not on the website. You will get more details on adrenal support. You will have new stories of others. You will read a chapter totally written for and about doctors. And there’s much more that is not right on the STTM site…little details inserted here and inserted there.

Why did I write it? Because though the STTM website has done WONDERS to reach people, MORE is needed. There are folks out there who are NOT coming to the web, or even know to look for answers, and this book will reach them. And….it can simply be more productive to have a BOOK to refer to and a BOOK to read when you are traveling in the airplane or waiting in the doctor’s office. AND…..FINALLY, we have something to HAND THE DOCTOR when he or she doesn’t get what we are talking about…or to our family or friends when they don’t get it, either.

Get ready. I’m excited. I hope you are too. img_0261.JPG

P.S. Guess what Oprah Winfrey may be drinking daily?? Soy milk. And since soy is a known thyroid inhibitor, guess what she’s doing to her thyroid? Quoted directly from her site: Thanks to all the yogurt and calcium-enriched soymilk she consumes, she’s getting an average of about 1,100 mg of calcium daily OOPS.

Janie @ 4:07 pm

March 10, 2008

Has progress been made with thyroid treatment??

Related categories: Doctors, Health Care, Patients

Sometimes I ponder: the current movement away from Synthroid & Levoxyl and all other T4-only meds to desiccated thyroid like Armour (as well as the understanding of the high prevalence of adrenal fatigue with thyroid patients), has been going on for ALL of the 21st century. In other words, patients were starting to talk about desiccated thyroid like Armour by the year 1999, and Yahoo’s Natural Thyroid Hormones group was started in 2002. Other patient groups sprung up around the same time. The latter group is also where the knowledge about adrenal fatigue in thyroid patients grew, which was further added to on STTM. So….has there there been any changes in the way thyroid patients are treated for their hypothyroid and related conditions?

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! :lol:

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!

Janie @ 11:48 am

March 3, 2008

Does it make sense? Nope. In fact, it’s just plain STOOPID.

Related categories: Health Care

If you were told that water wasn’t important to your well-being, and thus, if you want it, you will now need to pay a LOT more for it, would that make sense?

Nope. And neither does what Medicare has decided about Armour Thyroid.

Medicare is the government’s health insurance for those of you age 65 or older. It’s also available for those with certain disabilities, and for any age with permanent kidney failure requiring dialysis or a kidney transplant. And recently, the almighty Medicare has notified those using Medicare that it will no longer cover Armour. Why? Because it fits under medications considered “less than effective.” And poop on top of garbage…Medicare also recommends T4.

You have got to be kidding.

Armour thyroid is conclusively, adamently and overwhelmingly changing the lives of those who switch to it. Conversely, T4-only medications like Synthroid, Levoxyl and others have conclusively, adamently and overwhelmingly left most if not all hypothyroid patients with continuing hypothyroid symptoms of one degree or another. Yet, Medicare has dictated that an inferior treatment is the medication of choice and will be covered, and a medication that changes lives is not worth being on their formulary.

There is a pervasive madness going on out there.

Janie @ 9:48 pm

February 18, 2008

Bumper Stickers are coming! And they work!

Related categories: Products

***UPDATE: BUMPER STICKERS ARE HERE! You will also note a way to pay immediately for either bumper stickers or t-shirts, using a new, growing and SECURE site that transfers money from your bank to the STTM account on the site. This is a preferred alternative to PayPal with much less hassle. NOTE: IF YOU USE IT, you will need to use Contact Me to let me know the information on the Order Form.

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A gal suggested I also have bumper stickers in addition to the t-shirts, and I think she’s right. I have a bumper sticker on my car of Calvin peeing on a particular brand of T4 (I can’t sell those since I name the brand–lol). But it definitely catches attention! Just the other day, as we had parked our car in front of a Walgreens, a gal came up with her camera to take a photo of the bumper sticker. She laughingly explained that she works in the pharmacy and wanted to show it to the pharmacist.

And I have to wonder how MANY view that bumper sticker when I am sitting in line behind a red light, or parked somewhere. It has to create thought. And that is exactly what we ALL want–to create thought in this T4-obsessed, TSH-worshipping society.

You will see four different kinds of bumper stickers on this site before March, and I will announce them here. Three use good ole tongue-in-cheek humor. WE CAN MAKE A DIFFERENCE. YOU CAN MAKE A DIFFERENCE. Stop the thyroid madness!

Janie @ 9:51 am

January 11, 2008

Oops. Let’s not blow this out of proportion!

Related categories: Armour

A very overreactive rumor is being started as I type this about the FDA and Armour, and I think this whole topic needs to be leveled out. The rumor is as follows:

1) The FDA has stopped manufacture of all grandfathered drugs like Armour.
2) Armour will no longer be available at your local pharmacy

i.e. it’s being banned, discontinued, taken off the market, gotten rid off…you name it.

Now first let me clarify that all are totally and completely false. Forest Labs is still making Armour, and you can also find Armour at your local pharmacy, even if certain strengths are easier found than others.

Here is what is going on: In the January-February issue of the 2007 (i.e. a YEAR AGO) FDA Consumer Magazine, an article came out by Michelle Meadows titled The FDA Takes Action Against Unapproved Drugs. But this is NOT new news. This is based on the June 2006 release guidance by the FDA, called Marketed Unapproved Drugs—Compliance Policy Guide. What the FDA is doing is working to get unapproved drugs meet their approval guidelines.

What is an unapproved drug? For one, they are those drugs which were around before the FDA (Federal Drug Administration) came into existence in 1938, and these drugs were ‘grandfathered’ in with the subsequent FDA-approved drugs thereafter. (Armour is an example. Synthroid was too until it did what it took to be approved in 2002) Other examples, as explained in the January/February 2007 article, are when only one company may have approval to market a drug, but other companies are illegally marketing their versions of the drug without having gone through the FDA’s approval process. Another scenario is that a combination of ingredients is approved by the FDA, but a company is marketing a single ingredient without approval.

The article also clearly states: Before pursuing regulatory action against unapproved drugs, the FDA plans to consider the effects on the public health, including whether the product is medically necessary. The agency recognizes that some unapproved therapies offer benefits. An example is Phenobarbital, a drug used to control seizures. In some cases, FDA action requiring drug approvals will be gradual to avoid shortages of medically necessary products. In other words, whenever the day may come that Forest Labs is asked that Armour meet the regulations of the FDA, the process will be gradual and Forest will be given a fair deadline to do what it takes.

Kathy, a pharmacist with Forest Labs, reminds us that Armour has never been asked to go through that process (or they may not be admitting it yet so they can go through it in peace.). And if the day comes, they will do what it takes. Armour is a safe and life-giving product. And you bet your booties that even if it looked threatened some day, there would be a huge uprising from patients to stop it. But that’s not going to happen, just as it was for Synthroid where Abbott labs did what it took to be approved, and succeeded.

So, take heart: everything is fine. Armour is still being made. Your pharmacies still have it, even when some strengths are easier to come by than others. And I’ll keep you informed. And remember: I’ve always told you to stock up on your desiccated thyroid products anyway. :)

p.s. The root of the rumor comes from a recent recall by Forest Labs concerning its 3, 4 and 5 grain tablets, which had a 6-month potency problem, and a misunderstanding about it’s implications by individuals. Those tablets are currently scheduled to be out again by the end of January.

http://www.fda.gov/fdac/features/2007/107_drug.html
http://www.fda.gov/cder/guidance/6911fnl.pdf

***Want to spread the word and be your own thyroid patient advocate? Get your t-shirt here.

Janie @ 10:38 am

January 9, 2008

The right way to find a good doctor!

Related categories: Doctors, Patients

A friend of mine, Kerry, recently confessed to me and a few friends that it was time to find a new doctor. Her normal one had been a disappointment for her far too many times. Time to move on.

And how she is moving on TOTALLY impresses me, and I think all of you reading this should consider this positively assertive and self-advocating strategy.

First, she scoured through her list of doctors on her insurance plan, and found one that looked promising. She called and spoke to his nurse on the phone. She then told us the following: I explained that I use Armour and refuse to change meds; I am VERY involved in my health; I watch my Frees carefully and don’t rely on the TSH at all since the feedback loop is interrupted by meds..etc. With that said, the nurse stated she would check with the doctor.

In other words, my friend Kerry refused to do what all of us have done most of our lives–approach the doctor passively. She clearly outlined who she is, where her intelligence is about her body, and that she expects a partnership, not a demi-god, one-sided dictatorship of what is right and what isn’t right for her health care.

She also stated that if this doctor didn’t come through, her next strategy was to write a letter about her health needs and how she wants to be very involved in her treatment, then fax it to every available doctor on her insurance list in her area and see if she gets someone calling.

MAJOR, HAND-CLAPPING BRAVO, Kerry!!

THAT, friends, is the way each and every thyroid patient should approach their health care: candid as to your beliefs about your treatment, and what you want from the doctor. And eventually, your assertive approach will produce a doctor who is going to be a gem for you! Remember: it’s YOUR body and YOU live in it.

p.s. Without an insurance plan? Pull out the Yellow pages! And don’t hesitate to use parts of this Dear Doctor template letter to help you flesh out and compose your words or letter.

***WANT TO MAKE A FASHION STATEMENT ABOUT YOUR THYROID TREATMENT? Go HERE for a thyroid advocacy t-shirt. I dare you to wear it to your doctors appointment. (But if you don’t, wear it everywhere else. It does attract questions.)

Janie @ 11:54 am

December 27, 2007

Stop the Thyroid Madness 2008 NEW YEAR’S THYROID PATIENT RESOLUTIONS

Related categories: Information, Patients

For 2008, as a hypothyroid patient: I will:

1) expect that the relationship with my doctor will be a TEAM approach to my health care: not just his medical school/continuing education/experience, but also my own important knowledge and wisdom that I have gained (from reading sites like this), plus my subjective experience on my medication. My doctor does not live in my body or experience my symptoms; I do.

2) take the time to find a better doctor if my doctor refuses to respect the knowledge I have gained from reading sites like this, and/or will not listen to my subjective experience in my own body!

3) make my symptoms far more important than ink spots on a piece of paper called lab results, and will not passively allow a doctor to treat me ONLY according to those lab results.

4) give myself important supplements, including, but not limited to: selenium and zinc (helps conversion of T4 to T3), other minerals which may include magnesium, etc., plenty of B-vitamins (which are needed as I improve my thyroid function, besides supporting my adrenals), Vitamin C (also supports my adrenals) and more that I feel are suited for my needs.

5) be open to the fact that if Armour or other desiccated thyroid products don’t seem to be working, I am making one of several mistakes in my use of it, and will identify my mistakes and correct them.

Do you have others as a thyroid patient? Just respond to this post.

Janie @ 3:34 pm

December 7, 2007

Wear a Thyroid Advocacy T-Shirt!

Related categories: Patients

Because so many of you asked….you can now order a THYROID ADVOCACY T-SHIRT. And let me tell you–it works!! I did a test run. Wore it to several places over several days to see what reaction I would get. And reactions I got. Sure, it was a person here or a person there. But you are planting seeds in each person who asks. And they will carry those seeds into their own better health…and tell others.

And if you think that because you are on a large thyroid forum or group, it means the word is getting out–it is! But we’ve only scratched the surface. There are still millions out there who don’t know why they gain weight so easily, feel tired, have rising cholesterol, hair is thinning, or have depression. They need to hear about this.

We have to change the current LOUSY thyroid treatment protocol from the bottom up by spreading the word. It’s WE who will go to our doctors offices and demand change! It’s WE who will stop putting money into the pockets of those doctors who won’t listen to what patients have learned and go to those who WILL.

Enjoy the shirt! And feel proud for the part YOU can play garnering attention and spreading the word! p.s. Right now, orders are from the US only. As soon as Bidpay updates their checkout, I’ll add International. STTM is not just MY website: it is YOURS.

ALSO REMEMBER: if you use Bidpay, you’ll need to use the CONTACT ME form at the bottom of the page to let me know which size. The Bidpay function has no place to designate size.

Janie @ 12:48 pm

November 8, 2007

Join the OPRAH WINFREY LETTER-WRITING CAMPAIGN

Related categories: Information, Patients

I have had many folks email me about their concern that Oprah is not only failing to get the message about her thyroid issue, but thyroid advocates and interviews are not sending the message about what information is needed out there…and the media has STILL not caught on to this HUGE treatment scandal of the use of T4-only meds and the TSH lab. So, by request, I have created a letter template that you can use to be part of a massive letter-writing campaign to Oprah.

Yes, I’m sure she’s very distracted by the heartsick tragedy of her Leadership Academy for Girls in South Africa, but it may also worsen her thyroid condition, as well as create a potential adrenal problem. So THIS is the TIME to make a MOUNTAIN in her mail room. Go here: www.stopthethyroidmadness.com/letter-to-oprah-winfrey/

Please note that you can also use the above template letter to email her, but if we can ALSO send REAL LIVE letters as outlined in the above page, that can make a HUGE VISUAL difference as to what we are trying to tell her.

Janie @ 6:51 pm

November 6, 2007

Site is back up….and beating a dead horse once again

Related categories: About this site

Whew.

I go away for a few days on business, and when I get back, I find out that the site has been down the entire time! Turns out that the Domain name had expired, and notices of its impending expiration were being sent to an old, non-existent email address. Thus, I got no warnings and had no idea the domain name was about to expire. But we are back up…and they have my correct email address. :wink:

And by the posts of alarm by thyroid patients on several yahoo groups, one thing sure stood out: THIS IS AN IMPORTANT WEBSITE for thyroid patients. The information compiled here was sorely missed!

Why was it missed? Because the information on STTM is ground-breaking, by patients and for patients. It reflects the hard-earned, tough-learned knowledge of YOU against decades of a thyroid treatment THAT HAS BEEN AND IS WRONG and HAS KEPT THYROID PATIENTS SICK!!

Equally as important, STTM gives ground-breaking information on the common condition of adrenal fatigue and how to treat it. There is now a growing body of thyroid patients who have successfully weaned off their HC thanks to the information presented here!

Second, I discovered via a few emails that there are some VERY generous and kind thyroid patients out there. One gal thought that something had gone financially wrong, and she offered to completely host the site and work on it according to my direction. HOW NICE!!

But do know that everything WILL be paid for (and especially now that they have the correct email. lol) You can also be a part of the cost by contributing to the web hosting. See the HOSTING DONATIONS ACCEPTED button at the bottom of each page, or go here. That donations allows YOU to be a part of this important information revolution for thyroid patients, besides helping me as the individual who owns this site and doesn’t have a rich uncle. :lol:

And I think I will beat the dead horse in a new post above this one…in a few days.

Janie @ 10:41 am

October 17, 2007

What planet to do you live on, Oprah??

Related categories: Information, Patients

Cuz it ain’t the one WE live on, dah’ling.

For a few years now, patients have repeatedly written the Oprah show, begging her to address the thyroid scandal of decades of T4-only medication and the lousy TSH lab, both of which have left MILLIONS of patients with lingering hypo symptoms while our doctors proclaimed we were NORMAL…and about a FAR better treatment called natural desiccated thyroid and dosing by symptoms, NOT the TSH.

And when she finally has a program which somewhat addresses the thyroid issue this week, she allows her hallowed guest, Dr. Christiane Northrup, to state “your symptoms are actually your soul’s way of bringing deeper issues to your attention.” Hogwash! And thyroid patient Mary Shoman has rightly proclaimed that “thyroid disease is NOT your fault, despite what Dr. Northrup says.”

But the issue goes even further. Oprah implies, by her own experience, that taking a month vacation and eating fresh foods is enough to make one well from thyroid disease?? Double hogwash! Thyroid patients seek to live some of the healthiest lifestyles there are. All you have to do is observe the conversations in most any internet thyroid patient talk group, and you will see daily posts on the best supplements to take, healthiest foods to eat, and best ways to de-stress our lives. We are overall a VERY educated group of patients about health, and we practice it. We HAVE to be in light of how poorly educated most of our doctors are about our thyroid disease. And in spite of all the above, our thyroid condition persists.

What has CHANGED our lives is leaving the scandal of T4-only treatment in the dust, and learning about desiccated thyroid like Armour, switching to it, and dosing according to the elimination of symptoms, NOT simply labs.
We have also faced the fact that at least 50% of us have adrenal fatigue, which leaves us impatient and angry, with headaches and body aches, chronic back pain and body aches, a loss of passion, and sleep issues. And we have tread new ground in our knowledge on how to treat it, when many of our doctors pooh-pooh the reality of adrenal fatigue.

I love ya, Oprah, as do millions of women out there. But taking a month vacation and eating fresh foods does NOT cure our thyroid disease. So time will tell what went on with you! So now, all we can do is hope eternal that Oprah will get on the planet that the rest of us live on, and help us to spread the word as to why millions of thyroid patients have been suffering and about a far better treatment. If you can continue to have persistence, you can email her here. STOP the thyroid madness!

P.S. Go here to read thyroid patient Anna’s humorous experience with following the same kind of advice given on Oprah’s show.

Janie @ 9:25 pm

October 3, 2007

The FDA is improving T4’s potency….but it won’t change one particular FACT…

Related categories: Information

Is this akin to “improving” cardboard?

The FDA announced today that they are tightening the potency specifications for levothyroxine sodium (aka Synthroid, Levoxyl, etc) “to ensure the drug retains its potency over its entire shelf life” rather than what often occurs with any T4 med: the deterioration of T4 before it’s expiration date. They state that this tightening will improve the quality of the product.

Cough.

Let me give you some history. After it was isolated, T4 was first produced as a treatment substance over 80 years ago. The T4 did result in some improvement in patients they tried it on at the time. But guess why they never gave it to patients beyond the early experiments? BECAUSE THEY KNEW IT WASN’T STABLE. They knew that fact 40+ years before it came back on the market in the 60’s due to the heavy and moronic pharmaceutical promotion.

And the irony of this so-called improvement is that it’s NOT going to stop the deterioration of T4. They are only attempting to stop it before “the expiration date”.

Sorry FDA. You can improve the tensile strength of cardboard, but you can’t improve the FACT that T4-only meds are about as effective as giving a hypothyroid patient CARDBOARD…whether it’s stable or not.

http://www.fda.gov/bbs/topics/NEWS/2007/NEW01717.html

(Thanks Stephanie)

Janie @ 6:40 pm

September 16, 2007

Count on it: your doctor is going to ignore your symptoms

Related categories: Doctors

At the heel of Oprah’s revelation that she has a thyroid condition (see my blog post below) comes this article on September 13: Statins: Doctors ignore patients’ complaints of reactions to drugs

Boy howdy, doesn’t THAT sound familiar!

Sure, it’s about a non-thyroid drug called a statin, which has an advertised purpose of lowering your high cholesterol. But the information MIRRORS the experience of ALL thyroid patients!! Namely, the article shows that doctors rarely believe that the pill you are on is to blame for your “real - or imagined reactions”.

The article outlines a study that involved 650 patients who had complained of particular reactions after taking their statin. And the problems these patients observed are COMMON to being on statins - muscle problems, cognitive loss, and nerve pain called peripheral neuropathy (and my dear mother-in-law, who is on a statin, has all three). And what they got across the board is that their doctors either denied or barely considered that the statin could be causing the problems which the patient complained about!

And there’s a huge double whammy irony here. Namely, not only do thyroid patients have this exact experience when we are on T4-only meds and continue to have hypo symptoms that our doctors dismiss, but WE ARE A CERTAIN BODY OF THOSE ON STATINS because of one of the key continuing hypo symptoms that our doctors dismiss–high cholesterol.

Clinical presentation has gone by the wayside in favor of a lazy worship of the infallibility of pills.

Janie @ 7:57 am

September 14, 2007

Oprah…you can save yourself a lot of problems….

Related categories: Patients

….if you will take the time to read here of what thousands of patients have found out about the medication you will PROBABLY be put on, and about the lab you will PROBABLY be dosed by.

For those who haven’t heard, Oprah announced on September 10th during her Good Morning America interview that she “blew her thyroid out”. Now that also sounds suspiciously like she also has adrenal fatigue, but time will tell.

And Oprah will now join the club of an estimated “billions” worldwide with thyroid disease. But even worse, she may also be joining the club of those who for nearly 50 years, have been put on the lousy T4-only medications (Synthroid, Levoxyl, Levothyroxine and others) and who have been terrorized with the TSH lab and it’s dubious and pathetic “normal” range.

Yes Oprah, beginning in the 1960’s, doctors starting putting ALL of us on T4-only meds, and in the early 1970’s, dosing by the TSH lab. And NEITHER have worked. Sure, some will state they felt better. But many will tell you that NOTHING changed. And ALL, to one degree or another, have been left with a variety of hypothyroid symptoms while doctors have been proclaiming that those VERY symptoms had nothing to do with hypothyroid since we were now “adequately” treated.

But we have NEVER been “adequately” treated, Oprah. Doctors became cattle in the chutes of their pharmaceutically-financed medical schools, blindly believing that T4-only meds were working and that the man-made TSH was the gold standard of diagnosis and dosing…and ignoring clinical presentations which showed the opposite.

And when we still complained of symptoms, we have been put on anti-depressants, statins, anti-anxiety meds, and a variety of other pills to bandaid our continuing hypo symptoms.

And we finally fought back Oprah. For the last 7+ years, patients like myself found out that there has always been a MUCH better treatment (desiccated thyroid), MUCH better labs (free T3 and free T4) and much better dosing strategy (by symptom elimination). Our lives have become far better because of what we have learned.

This website represents the knowledge of a large and constantly growing body of patients worldwide, and some wise doctors, which goes totally COUNTER to nearly 50 LOUSY years of pitiful thyroid treatment.

You, Oprah, are a megaphone of influence. And if you can take the time to read this website, you might play a huge role in helping to change MILLIONS of lives. Because right now, the vast majority of the medical community does NOT get this, and is continuing to keep patients SICK and TIRED and/or with continuing hypothyroid symptoms of some kind. And YOU are going to be one, with your own continuing list of symptoms, if you don’t consider what thyroid patients are trying to tell you by nearly 50 years of LIVING it.

Janie @ 8:55 pm

August 24, 2007

What happens to you….just happened to me

Related categories: Janie's experience

Last week, after hours, I called the office of the Nurse Practitioner I have used as my doctor for 5 years. I left my message–that I have had rising blood pressure and was curious what she would recommend. (And yes, I like her.)

I mentioned that I was slightly lowering my Armour, just in case the iodine I had been giving myself for a year was now causing my Armour amount to be too much (and contributing to my BP). I also mentioned that I had found many articles on the net about the benefit of taking CoQ10 for rising blood pressure…plus the fact that low levels of potassium and magnesium may place a role in at least 50% of those with rising blood pressure. I also asked if I could be sent lab papers so I can test my potassium and magnesium levels. I was curious.

Last Monday, the office called. It was the nurse under the physician that my NP works under, and whom I was FAR less impressed by. She explained that I would now be under his care, since blood pressure doesn’t fall under her specialty–female hormones. (first inner alarm).

Next, she says that the doc feels there is “no strong research” that CoQ10 will help me. (second inner alarm) I replied that there’s “no strong research” that Armour turns the lives around of thyroid patients, yet it does. Cough.

Finally, she stated that she doubts he will feel “comfortable” with letting me test my potassium and magnesium (final alarm). Excuse me…HE would not feel comfortable for me to know what my levels were? HE would not feel comfortable?? WHO’S BODY ARE WE TALKING ABOUT HERE?!?

And today…I received the lab papers I was to use…and all he checked were electrolytes….and TSH. Thud. Granted, there is a relationship between electrolytes and blood pressure…but I was appalled that he gave no respect to my request to know my potassium and magnesium levels….and wanted to test the WORST and most unreliable “thyroid” test there is.

I have tossed those lab papers…and I am making an appointment with a new doctor…one I have heard about from another patient….and who has a reputation of listening, not simply dictating.

p.s. I’m back on my regular amount of Armour. And..my blood pressure has fallen to a respectable level: 125/74 tonite…and 105/69 the other night. What did it? Probably the release of stress from letting go of some responsibilities. I’m also making sure I take a full spectrum of minerals, CoQ10, and I’m back to walking aerobically at least 4 times a week. And finally, I’ve been using a tablespoon of apple cider vinegar (acv) daily with 1/4 tsp baking soda for over two weeks. The acv has done wonders for my husband’s FORMERLY poor digestive issues….and there’s evidence it helps control blood pressure in two weeks!! (Remember: these blog posts are ONLY for comments. Want to talk to others? See the TALK TO OTHERS link on any STTM page.)

Janie @ 7:58 pm

August 23, 2007

A personal note

Related categories: About this site

I have waited to post again on my blog until the forums became officially closed, and today is that day. To read the full story, go here. And after you read that, you can rest assured! I have replaced the forums link, which was on the left side of any page, with this one, called TALK TO OTHERS. You will see other alternatives, from another forums similar to what we had here (with some of the same mods), to groups that are excellent for patient-to-patient information (and with some of the same mods–lol). Enjoy! And I will add more as I find them–groups that have an excellent understanding of what thyroid patients have learned.

Am I sad at the closing? Very. But with me being freed from the responsibility of the forums, I now have time for my private life, AND I have time to do other things for this site, and for thyroid patient advocacy.

But do NOT think that STTM’s heart has ceased to beat simply because our forums are gone!! What propelled me to create STTM is still the ENERGY of this website: namely, a place to educate patients as to WHY they feel lousy on T4-only meds, why certain labwork has NOT worked, and other issues that a large body of thyroid patients have had to face: adrenal problems. It was also created to STOP the thyroid madness of hundreds of millions of thyroid patients!

You will continue to see new articles, updates to old ones, and other activity in the future. :) And by the way, check out the SITE MAP for our new category: FAQ pages. We have an excellent one for adrenals, another one for hypopituitary, and one coming as I write this…for B-12.

Janie @ 5:03 pm

July 29, 2007

You can now donate to the hosting fees of STTM

Related categories: Information

Since I created this site around November of 2005, I’ve had several of you ask if you could donate, somehow, somewhere. I wasn’t sure how to do that. What I did know is that millions of patients have suffered, and still suffer…and this site was to help educate you on what we have learned…and that education, in turn, could be taken to your doctors on how to stop the madness.

But, I found out that STTM can have a way for those that appreciate and use it to donate money towards the cost of HAVING THIS SITE UP—towards the hosting fees. Yes, STTM costs me. So…at the bottom of any non-forum page, just like this one, you will see a small rectangular button that says: HOSTING DONATIONS ACCEPTED You can donate any amount–high, low or in between–to the company that hosts STTM. It’s totally your decision.

Yes, it helps me, but it certainly underscores that STTM is “everyones” site, not just mine. So for those of you who have really wanted to help, and to feel a part of an important worldwide patient revolution, there it is. And thanks. :)

Janie @ 10:47 pm

July 13, 2007

The King is Naked and the GMC of the UK–brotherhood of FOLLY

Related categories: Doctors

Who hasn’t heard the tale of the naked king, who succeeded at making his subjects schizophrenically believe that nakedness is the norm?? That nakedness isn’t nakedness at all!

The same folly still occurs today when you view the final press release in the Fitness to Practice hearing of Dr Gordon B Skinner in the UK, sent to me by Lyn Mynott, chair of Thyroid UK. In case you aren’t up on the news, Dr. Skinner has been brought before the GMC because he dares to treat his patients with thyroid hormone when they have so-called “normal” blood lab test results. The General Medical Council (GMC) is the “big brother” of all doctors in the UK, dictating exactly what is “a good standard of practice and care” for patients and the “proper standards in medicine”.

And you don’t have to guess long to know what that “good standard of practice” is. Namely, that man-made ink spots on a piece of paper called labwork tells the truth, and your slew of symptoms do not. That your chronic low-grade depression is of “unknown origin” or imagined. That your aches and pains are from Fibromyalgia or imagined. That your easy weight gain is because you eat too much or exercise too little. That your rising cholesterol is from what you eat or your genes. That your hair loss is simply alopecia or age. That your poor stamina simply means to take naps. And they can all occur with “normal” thyroid labs.

It’s simply pure and simple crazy-making: Of COURSE you aren’t hypothyroid. Your lab work is NORMAL. You are NORMAL.

What a bunch of brainless, skunk-butt bull crap.

If what is happening to Skinner by the GMC isn’t so pitiful, it would be hilarious. History will one day look back at this and weep.

Janie @ 8:19 am

July 6, 2007

The Walking Tired

Related categories: Patients

It happened about three hours ago. She was a pretty blonde-headed gal whom I noticed sitting in a vintage oak rocking chair about 15′ from where I stood in a store. When she saw that I noticed her, she asked “Is it OK if I sit here?” “Of course!” I replied cheerfully.

And then it struck me. What is this 50ish, pretty, vibrant looking gal doing looking tired in a rocking chair?? So I asked “Tired?” “Yes!” she mouthed, with more explanation about not having stamina since she entered menopause.

Bingo. I walked over to her and asked “So you don’t have the stamina you used to?

“No!” she exclaimed with her brows furrowed.

“Tell me then” I continued. “Do you have hair loss?”

“Why yes!” she replied, surprised. “I see them on the floor constantly now”

“Do you have chronic low grade depression?”, I asked tentatively, since that’s a personal question.

“Yes”, she replied quietly, and her eyes getting wider. My questions were hitting the bullseye of her symptoms.

“Do have high cholesterol?”

“Well yes, it’s getting higher than it used to be”.

And after more affirmations about dry skin, constipation and tiredness, I asked “Have you had your thyroid tested?”

“Yes, and it was normal”.

So….I proceeded to tell her that I have NO doubt that she is hypothyroid, and that doctors do the WRONG tests. I grabbed a two-page handout, which is identical to the T4 Only Meds Do Not Work page, and explained that she needed the free T3, and if it’s low in the range, THAT is the clue she needs labwise. I also explained Armour as compared to Synthroid, etc.

The fun part of the above was that she looked at me like I had repeatedly hit the bullseye and had practically made her naked. lol

And as she left, she said “I can’t begin to thank you for this information. For once, I have HOPE.” And oh was she smiling.

And that encounter underscored to me that because doctors are BLIND to obvious hypothyroid symptoms and overreliant on ink spots on a piece of paper, there has to be MILLIONS of the “Walking Tired” out there.

How long did you walk tired before ANY doctor had the vision to see what was going on??

Janie @ 1:52 pm

June 14, 2007

She wants to cry, and I want to cry with her!

Related categories: Patients

I just want to weep when I get private emails like the below:

I have been reading this site for the last 72 hrs…I want to cry…for 12 yrs, on and off, I have been going to Dr’s thinking I was crazy..I am 38 yrs old and have not felt great in 12 yrs…I have had the nerve testings, I am on anti-anxiety meds, synthroid, lisonopril for high blood pressure…all these linked to my “normal” TSH of 5.48 and Ferritin level of 6.

I was told exercise more and take an iron supplement….I starved myself and never went below 160..I exercise for hours a day and weight doesn’t budge…my Dr told me to start exercising at 5 am and eat a handful of almonds several times a day, plus Fiber 1 cereal and salad…I told him I couldn’t live like that…he told me that I didn’t really want to lose the weight then…

I spent 2 months sleeping all day and staring at the tv at night in a constant panic attack, afraid to tell my husband because I thought I was losing my mind…I saw an Endo last Friday…she told me it was my thyroid and I found your site and I am not crazy or a hypochondriac….I can’t wait to start to feel better. Thank you….

Awful. No, dear one, you were never crazy or a hypochondriac. You just went through what we all have in the hands of doctors who don’t get it. And be aware: It’s not more Synthroid you need; it’s Armour, and dosing by symptoms, NOT the TSH. Demand that from the Endo. Don’t give your power away when you enter his office. www.stopthethyroidmadness.com/things-we-have-learned Keep in touch!

Janie @ 7:39 am

June 3, 2007

To ROSIE O’DONNELL

Related categories: Information

Aha!! Betcha that a lot of you who saw the title of this post thought that Janie was going to use her STTM blog as a political arena! Well…..I’m not. What I am going to do is speak to Rosie O’Donnell as a fellow human being.

Valerie, the mod of the Adrenal forum, emailed me this morning about a post that occurred on Rosie’s website on May 19th, 2007. The post by “Stacey” said “Rosie, have u evr had ur thyroid cked? I thought I was crazy…..anx, depr, panic….my thyroid was way out of whack. Plz ck this website out. www.stopthethyroidmadness.com Peace2u ~Stacy”

And Rosie replied “had it checked over and over .”

Well Rosie, if you didn’t check out the link to STTM on May 19th, I hope that someone sends you right here, because I want to explain something to you: Millions of women and men just like you have had our thyroids checked “over and over” and we have all been told we were normal, it’s not our thyroid, our TSH is optimal, we need to be on anti-depressants, we need to eat less, we need to exercise more…..blah, blah, blah. Ad nauseam. www.stopthethyroidmadness.com/give-me-a-break

Additionally Rosie, the tests that most well-meaning but unknowledgeable doctors use are not going to give a single clue about your continued hypothyroid state. Additionally, patients have learned that “normal ranges” mean squat. You will stay hypothyroid in many parts of that so-called normal range. www.stopthethyroidmadness.com/recommended-labwork

And finally Rosie, in addition to your obvious hypothyroid symptoms, I see evidence that you may have adrenal fatigue. When a person remains hypothyroid due to the failure of doctors to listen to clinical presentation, your adrenals have to take over to keep you functioning. And over time, they wear out and become sluggish. That means you don’t produce enough cortisol to help you cope with stress. And life can become an emotional rollercoaster, besides feeling like an old piece of chewed gum on a Manhattan sidewalk being stepped on by thousands of happy squishy feet daily. www.stopthethyroidmadness.com/adrenal-info

Bottom line, to Rosie and any human being out there who might identify with weight issues, anxiety, depression, poor stamina, and/or feeling unbearably stressed out…there is hope, and it’s not coming from the majority of doctors out there, nor their labwork or being on Synthroid, Levoxyl or any other T4-only med. It’s coming from patients who finally got sick and tired of feeling like crap, having obvious hypothyroid symptoms, and being told we were NORMAL!! That’s exactly why I created this website. This website represents what thousands times thousands of us have learned, and how our lives our changing. It also represents what doctors NEED TO LISTEN TO. www.stopthethyroidmadness.com/things-we-have-learned

Here is my story. Here are stories of others. And the latter only BARELY touches the changes that are going on out there.

Rosie, there is a chaos and tumult of terrorism in the way billions of thyroid patients have been diagnosed and treated for more than five decades. We have been left sick thanks to the lousy treatment of T4-only meds, thanks to labwork and their dubious ranges which have failed us, thanks to doctors who tell us it’s all in our heads and put us on a slew of other prescription meds, and thanks to be social constraint that we must walk into that doctor’s office and give our power away. It’s wrong. It’s medical mayhem. And we are FIGHTING BACK! Stop the thyroid madness!

Janie

Janie @ 9:05 am

May 5, 2007

Oh..oh..oh..do you think the Endrocrine Society is going to understand FACTS???

Related categories: Information

NO.

The Endocrine Society’s 89th Annual Meeting is going to occur in Toronto, Canada, June 2-5th this year. And one of the scheduled presentations is titled: Thyroid Hormone Therapy: Why Some Patients Are Unhappy.

Now based on that title, you can be an optimist and decide that yes…a presentation is going to be given that will give a clue why MILLIONS of us are unhappy, unhealthy and reeking of hypothyroid symptoms with a “normal” TSH….and have been for FIVE DECADES!! It’s enough to get your hopes flying.

But below is what was said by the speaker:

Today, pure synthetic T4 is the medication that the vast majority of hypothyroid patients use. Most physicians now consider desiccated thyroid and the combinations of synthetic T4 and T3 to be obsolete. Since they contain both T4 and T3, and T3 is absorbed and used by the body more quickly than T4, their T3 content can cause some patients to develop temporary symptoms of hyperthyroidism (palpitations, nervousness) after a tablet is taken. Also, desiccated thyroid, derived from slaughterhouse animals, may have variable potency from batch to batch, depending on the animals’ diet, the season of the year, and the species of animal used to make the tablets.

Huh?? That “obsolete” desiccated thyroid is turning lives around 180 degrees! And those “temporary symptoms of hyperthyroidism” are caused by low cortisol in some, not by a problem in the tablet. And finally, funny that those of us on dessicated thyroid aren’t noticing any issues of variability.

So, unless I hear differently, I can only presume that in early June, these Endocrinologists will only continue to be prescribing medications that do NOT work (e.g. Synthroid), and making ink spots on a piece of paper (called the TSH lab and range) far, far more important than obvious hypothyroid symptoms in their patients. i.e. they will continue the treatment which has only served to keep ALL of us SICK.

Cuiusvis hominis est errare; nullius nisi insipientis in errore perseverare

Janie @ 7:11 pm

May 2, 2007

I tried to get a STTM book published–to no avail

Related categories: Information

In my advocacy, I noticed that there were potentially millions of women out there who either don’t use a computer, or if they do, they have no clue that the symptoms they experience are due to an inferior medication called T4-only, or compounded by adrenal fatigue. I’ve been shocked how many I come into contact with even in my small little world. And if you multiply that times the large and growing global population who have hypothyroid, it’s potentially millions who walk around clueless.

To reach them, I did the book.

But…because of other thyroid books out there, I’ve been unable to convince either a publisher or an agent that I have a different focus–i.e. STTM is based on PATIENT EXPERIENCE and for that reason alone, provides a totally different focus with unique information! This website proves it!

But sadly, unless you are a thyroid patient who has lived years and years of being told….

1) your symptoms are all in your head
2) you are normal, normal, normal because a TSH lab result says so
3) your high cholesterol, aches and pains, thinning hair, poor stamina and weight gain are normal parts of aging
4) you need to fill this prescription for an antidepressant, statin and pain med to treat those “other” symptoms
5) there’s nothing wrong with your adrenals

…you won’t get the need for the book. And sadly, they haven’t.

So…this website will be providing ways for YOU to spread the word, and hopefully over time, we can reach those millions who either don’t use a computer, or who don’t get that their high cholesterol, aches and pains, thinning hair, poor stamina and weight gain ARE due to an inferior treatment and a doctor who relies solely on the TSH….and there’s a MUCH better treatment.

Right now, STTM has a flyer you can use, and coming soon: t-shirts and business cards.

If I can’t find an agent or publisher wise enough to see the need for the STTM book, they YOU will be the messenger, and we’ll help the best we can. :) STOP THE THYROID MADNESS!

Janie @ 1:42 pm

April 22, 2007

Richard Simmons, weight issues, and my friend Helen

Related categories: Patients

I have an internet friend named Helen Trimble. Helen is an intelligent, witty, and funny gal whom I’ve had the pleasure of knowing for almost a year. And recently, Helen sent several of her friends an audio of a recent conversation she had with beloved fitness guru Richard Simmons. In that delightful exchange, Helen shared that she has lost 83 lbs over the past year, and praises Simmons for the important role he and his diet tips played in her weight loss.

But Helen made a key comment in that conversation: that her long years of non-diagnosed hypothyroid played a major role in her weight gain..i.e. it wasn’t just getting older or eating wrong that was doing it. And why was she undiagnosed so long? Because of the failure of doctors and the TSH lab range to give a true picture of what was going on.

In a conversation with me, Helen stated: “For years after childbirth, I went on yoyo diets, starving myself to death, and still did not lose weight. The only thing I lost was energy, hair and eyebrows. I was gaining weight on 1200 calorie diets, whereas when I was healthy and active, I was 124 pounds and ate a 2400 calorie a day diet.” And Helen’s years of unexplained weight gain put her to nearly 300 lbs.

But the turning point for Helen was not just Richard Simmon’s contagious enthusiasm or his diet tips, even if they were and have been extremely helpful. The turning point was when Helen had many conversations with Valerie, the moderator of the Adrenals forum and whom Helen states is her hero, and finally found out about Armour a year ago, besides treating her low cortisol–the latter a common problem with many hypothyroid patients.

Says Helen: “Today, I am now losing at least a pound a week on a 1500 calorie diet and my apple shape is changing. I eat when I am hungry and put a little protein in my body every 4 hours. I had put most of my weight on in the middle…I cannot help believe that the hormone imbalance is the reason for this. As we all have switched to Armour, and get closer to optimized, our body shape changes, faces change, and the weight comes off.”

But just as striking as the above was Helen’s next statement. She works in a pharmacy at a large store, handing prescriptions to patients: “Now when I look at the obese women who come to pick up their prescriptions for Synthroid, a bell goes off. We all look the same, eat the same, and have the devastating symptoms.”

THAT was a clincher! Helen, who has herself experienced the weight gain due to untreated hypothyroid, sees mirror images of herself every day when she hands Synthroid or other T4-only meds to women–women who look just like she has! HUNDREDS OF WOMEN! And what does that say? Exactly what this site is saying: that Synthroid and Levoxyl and all other T4-only meds are leaving patients UNDERtreated, and weight gain is the side effect of a poor treatment

Richard Simmons: Helen and I have a strong suspicion that a certain or large percentage of those wonderful women and men you work with are either undiagnosed hypothyroid (due to doctors overreliance on a faulty lab called the TSH with it’s dubious range) or are UNDERtreated on a T4-only medication. These T4-only meds have been the ineffective treatment of choice by doctors for five decades, and have left millions of patients all over the world with continuing hypo symptoms, and doctors telling them to diet, exercise more, or get on an antidepressant! Stop the Thyroid Madness!!!

Janie @ 6:40 pm

April 18, 2007

Ted thanks us…and I thank him for doing so

Related categories: About this site

Below is a comment made by Ted on the forums on this site, and it expresses his appreciation to the moderators who give back their time and information to other patients.

But what I also see is that it’s patting the back of thousands of you whom I observed…and whose experiences I used, besides my own, to create the energy and message of this patient site–that T4-only treatment has been a disaster, that dosing by the TSH and it’s dubious range is mostly a failure, that there are better labs your doctor can use, that desiccated thyroid is a better treatment choice, and that many patients have adrenal fatigue that needs to be addressed by their doctors!

By the way, I can’t believe the veritable treasure trove of information on this forum. I’ve learned more about my health status, and how to deal with it in one month here, than I’ve learned in the last 15 years of searching books and talking with doctors. It’s hard to argue with all the practical experience and hard-learned lessons found here, even for a hard-headed retired biochemist. All you moderators are to be congratulated for your tireless energy and willingness to listen (and respond) to what seems to be an ever-growing number of very sick people. THANK YOU ALL!!!!!

And oh how I thank Ted back for those wonderful words. The very purpose of this site, and of those that contribute, is to educate patients. And it appears to be working! And hopefully, that education is being carried to the doctor’s office, and in turn, creating the beginning of a MAJOR change in the way hypothyroid patients are diagnosed and treated. It’s long overdue.

Janie @ 12:58 pm

March 24, 2007

Patient experience in the doctor’s office makes you weep

Related categories: Doctors

I’m sick. I’m tired. I feel awful. I’ll go the my doc’s office for help.

We have all done it, filled with hope and promise. I have done it!! Why not, since our doctor has had at least four years of medical school training that we couldn’t fathom doing ourselves, including working with patients under the supervision of licensed doctors, and 1-3 years of residency following school. Oh and let’s not forget the continuing education, besides experience with thousands of patients before me.

I’m in good hands.

THUD. For thyroid patients, it couldn’t be FARTHER from the truth. The experience in the beloved doctor’s office has been nothing less than dismal, disgusting, and depressing….and nothing more than pure malpractice.

Why? Because there’s not a thyroid patient anywhere who hasn’t gone in with raging hypothyroid symptoms…and 1) was dismissed, 2) told they needed an anti-depressant/pain med/statin rather than better thyroid treatment and/or 3) were told they were “normal” simply because those ink spots called labs ’said so.’ So we have left…sick, and for years.

Whatever happened to “clinical presentation”????

And if you think that I am barking up the wrong tree, take heed. The following true story, which was related to me two days ago, is exactly like THOUSANDS we hear on this site every week:

I walked into the Endo’s office, feeling awful. I had been told he was the best in the state and I knew he held a high position in the University. First, when I told him about my unrelenting brain fog, he dismissed it. When I told him my cholesterol keeps rising, he said I wasn’t eating correctly (I love veggies and eat fowl more than beef). When I told him my throat felt tight, he said it was a temporary inflammation, take tylenol and it would pass. When I told him that I wanted a treatment with T3 in it like Armour to help my depression, he laughed, saying there was no connection between T3 and mental health. I left with my normal script for 125 mcg Synthroid, a pronouncement that I’m “normal”, feeling crazy and stupid, moving to a sense of COMPLETE rage, and mostly, I felt like a complete fool for ever taking the time. What will happen to me? I can only get worse with my symptoms, which thanks to you site, I can now see are ALL hypo symptoms. Will ANY doctor LISTEN TO ME???

I WEEP.

Janie @ 10:48 am

January 21, 2007

Doctors don’t like us using the internet?? Tough!

Related categories: Doctors

Today’s morning newspaper was repugnant. The article was titled Doctors not fans of Googling to find ailments. Oh really?? Why are we not surprised! Yes, the article began with the idea that many of us are googling our unexplained symptoms before heading to the doctor and they “aren’t thrilled.”

It then stated:

In fact, doctors used words like “nightmare,” “annoying”, “irritating” and “frustrating” when talking about the burden of dealing with patients who bring in stacks of Internet-based health information (and misinformation) according to a recent study in the Journal of Medical Internet Research.”

It continues with doctors seeing it “as an unwelcome intrusion” and they “resent the new interpretive role they have been put in.”

Does that trouble you, the thyroid patient, as it does me?? In fact, I find it pompous and nauseating. Let’s turn that article around to represent the REAL truth:

Thyroid patients have found it to be a “nightmare” when doctors overtly and unanimously proclaim us “normal” because of dubious lab results (TSH and T4) in the face of obvious and ongoing hypothyroid symptoms.

Thyroid patients find it “annoying” that doctors ignore the continuing symptoms and instead, push anti-depressants, statins, anti-anxiety or pain meds on the patient rather than become educated about the role of a low free T3.

Thyroid patients find it “irritating” that doctors, especially Endocrinologists, blindly conclude that Synthroid, Levoxyl and any other T4-only treatment is the best treatment for hypothyroid patients…when it has clearly failed us for decades.

Thyroid patients find it “frustrating” that doctors don’t recognize the common occurrence of adrenal fatigue with hypothyroid, and their failure in understanding how to treat it.

And thyroid patients “aren’t thrilled” that doctors still seem to see themselves as demi-gods of their patients health, when in fact, the relationship should be a PARTNERSHIP. You do NOT live in our bodies.

So dear doctor, instead of bemoaning our use of the internet, which in fact saved ME from your incompetence as it’s doing millions of others, rejoice that your patients have had the balls and inclination to FIND answers via the internet. Because those answers are here. And the answers are not just for us, but for those of you who are open-minded and mature enough to LEARN from the internet. Because the internet is ultimately US.

Janie @ 11:27 am

December 28, 2006

Beware: major hormonal changes can affect your adrenals!

Related categories: Janie's experience

I normally don’t write about me here, but more on thyroid advocacy issues. But this time…it’s going to be ME, because YOU need to be aware of what happened to me…because it can happen to you.

I appear to have adrenal fatigue.

Now understand this: I didn’t have it when I got on Armour over 4 years ago. I raised my Armour without a hitch, except for low Ferritin twice that I had to correct. And for approx. 3 1/2 years, I’ve been optimal with Armour with a perfect mid-afternoon temp of 98.6

So why adrenal fatigue now?? It helps to explain it this way: Two years ago, in Dec. of 2004, I entered serious peri-menopause. My progesterone fell rock bottom while I still had a youthfully high estrogen. And I’ve had to deal with the misery of severe estrogen dominance for two years. I’ve used compounded progesterone cream for those two years, but it was often never enough to stop the symptoms of estrogen dominance.

Also, Dr. Lam states the following and it explains me to a T: In early stages of adrenal fatigue, cortisol output is high as the body attempts to neutralize the stress by producing more of it. However, when too much cortisol is produced, it will have multiple undesirable effects. For example, cortisol blocks progesterone receptors, making them less responsive to progesterone. Progesterone normally produced by the adrenals comes to a halt in favor of cortisol. Insufficient progesterone production leads to an imbalance of estrogen to progesterone…(aka estrogen dominance). And voila–I did have high cortisol in the morning and noon. I had done the saliva adrenal test just a month after my progesterone had dropped.

Finally, this past October, I noticed the estrogen dominance FINALLY stopped, as did my periods. A huge victory. :) But in early December, after a particularly busy day on a Saturday, I majorly crashed………and haven’t recovered since.

And ALL my symptoms point to adrenal fatigue. First, my temps fell. And they were all over the place. My highest would only be 98.3, and one night, I was 97.1. That was VERY wrong for me.

Next, I started waking up EVERY night between 3-5 am. A typical adrenal symptom. Also, if I felt emotional about something, my body would get VERY hot. At first I thought it was a hot flash…but it was different.

And I was achy for 1 1/2 weeks. That stopped when I raised my Armour and got my temps back up. But even without the achiness, I have felt fatigued all over, and just bad.

Also, I fail the blood pressure test in the mornings. The other day, my supine blood pressure was 135/84. Standing, it was 115/84. A good sign of adrenal fatigue. I also have a faster and a pounding heartrate.

I have sent off my saliva samples…but have no doubt what the results are going to be. So….I am going to start the very adrenal support that I have written about in so much detail here on STTM. Because there is simply too much stress in my life to think that practicing all the other adrenal support methods are going to help my adrenals recover, or even help me feel better.

And by the way, for the past year and more, I have always given myself 5000 mgs of Vit. C and high dose B-vitamins, plus E. I have exercised regularly by walking. But it wasn’t enough to stop what a huge female hormonal change has done to me. I now am using Licorice Root daily (which stops some of the breakdown of cortisol in your liver) and 1/2 tsp sea salt, stirred in orange juice and my morning yogurt. And I’ll have to start on cortisol.

What can you do to not find yourself in my shoes? For one, if you enter peri-meno, even without the presence of adrenal fatigue, I would start on some mild OTC adrenal support now, which I was never on. Also, do whatever you can to counter excessive emotional stress in your life during this time by finding times to laugh and doing what you enjoy. I have been stuck with a job that wore me down, and family issues that stressed me terribly, and I’m sure that played a part.

COMMENTS TO THIS POST ARE WELCOME :) (I could use pats on the back because this makes me SICK), but if you have questions, this is not the place for them. Go to our forums here: www.stopthethyroidmadness.com/community And by the way, I will update this particular blog post when I get my adrenal saliva test results back…and as I progress in my treatment. My fingers are crossed.

Click here to see the continuation of my comments on my own Adrenal Fatigue.

Janie @ 8:29 pm

November 11, 2006

NBC, CBS, ABC, Oprah, Dr. Phil…you name it. YOU are NOT keeping up!

Related categories: Information

And to the list above, I can add any and all mainstream press media out there. Because you are ALL falling behind. There is a HUGE revolution going on among thyroid patients against DECADES of lousy treatment, and YOU are failing monstrously to see it and report it.

Instead, you believe and report hook, line and sinker the standard byline of medical news, as if what you report is the ONLY and BEST information there is (e.g. the news on Chronic Fatigue Syndrome mentioned below) and you seem to be blind as bats that there’s an outcry from millions of thyroid patients out there who are suffering due to an ignorant, rigid and malignant method of thyroid treatment with thyroxine medications and standard labs that do NOT reveal anything more than dried ink spots on a piece of paper.

So take heed. We are UNIMPRESSED with your deaf ear and dumb vision and monkey-says, monkey-do reporting. There is a LOT more going on than what the medical establishment is going to feed you. Millions of patients across the nation AND THE WORLD have been paying an appalling price for decades due to a contemptible method of thyroid treatment that involves a medication that has NOT worked, a TSH lab range that keeps patients hypothyroid, and rigid doctors who’d rather bandaid continuing hypothyroid symptoms with anti-depressants, statins, pain meds, and psychotrophic meds rather than open their eyes and think outside their Medical School Training Box. Stop the thyroid madness!

Janie @ 8:44 pm
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