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Category: Doctors

If this is normal, I’m not impressed!

Screen Shot 2015-09-03 at 2.06.02 PMThis page has been updated to the present day and time. Enjoy!

In 2008, I was getting to know a 40-something relative-in-law whom I hadn’t known long, but could tell we would click! She’s one of those people who could say things in a way that I’d be on the floor, laughing.

When she found out I had written the Stop the Thyroid Madness book, she got a copy and read it. And as she read, her eyes got bigger…and bigger…and bigger. The Thyroid Stimulating Hooey chapter was especially an eye-opener for her.

Turns out she has had fatigue problems for at least 14 years (while being told she was normal), starting right after her daughter was born. And that fatigue showed in her eyes and her demeanor (while being told she was normal). But that’s not all. She’s continually gained weight all these years (while being told she was normal), even though she eats like a bird (while being told she was normal), and has enough depression to warrant an anti-depressant (while being told she was normal). She was also getting worried about her cholesterol (but of course, she’s normal). And finally, she had low cortisol symptoms (while being told she was normal).

14 years of being pronounced “NORMAL” is as crazy-making as it get, don’t you think?

Why was she continually told she was normal? Because the TSH lab result said so. It always…always fell in that crazy-making “normal” range. And like so many doctors, her doctor believed ink spots on a piece of paper over all her very clear symptoms of NOT being “normal”. Talk about bringing 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 misinformed, TSH-obsessed 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 the obvious clinical presentation of clear hypothyroid symptoms ran right down into the sewer. And with that loss has come hundreds of millions of hypothyroid patients worldwide with the schizophrenic diagnosis of “normal” along with raging symptoms thanks to ink spots on a piece of paper called the erroneous TSH range. And that is exactly why this website is necessary, as is the book and YOUR demands for better treatment.

I was schizophrenically “normal” for nearly 20 years while I had miserable and even debilitating symptoms. My relative had been for 14. How about YOU?

JanieSignature SEIZE THE WISDOM

** “Like” the STTM Facebook page for daily tips, wisdom, and/or humor.

15 replies

Has progress been made with thyroid treatment??

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! 😆

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!

8 replies

The right way to find a good doctor!

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.)

23 replies

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

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.

10 replies

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

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.

9 replies