Doctors tags

In honor of 2009,  a year we hope to see bold changes in the medical system, Stop the Thyroid Madness presents the Fifteen Most Annoying Phrases From the Mouths of Doctors. (Note that the word “Armour” has been used for simplicity sake; any prescription-grade desiccated thyroid product can be inserted there.)

Here’s raising our New Year’s stemmed glasses to change!

15) I’ll see you in eight weeks.
14) Here’s a script for [insert any non-thyroid medication to bandaid continuing hypo symptom]
13) The free T3 lab test is not necessary.
12) Your symptoms do not warrant a thyroid medication.
11) You’re tired because you are [insert any label like "a mother" "menopausal", etc]
10) That has nothing to do with your thyroid.
9) I can find nothing wrong with you.
8 ) You need to eat less and exercise more.
7) Your TSH is too low.
6) The TSH test is [insert any positive description, like "a reliable marker" or "sensitive measure"]
5) I do not believe in Armour.
4) Armour is [insert any negative adjective/description like "unstable" or "hard to regulate"]
3) You’re depressed.
2) You are hyper.

….and tah-dah, the #1 most annoying phrase that comes out of the mouth of a doctor:

1) You are normal.

Just as I was finishing up the post below about a short summary on the Endocrinology Today website, I saw a link at the bottom of the page that interested me.  It took me to a blog post on the same site from December 10th titled “Why can’t it be my thyroid?”.

And a slew of thyroid patients around the world, as well as a growing body of doctors,  would completely disagree with this post.

Namely, a DO explains the problem of patients arriving in doctors offices with “innumerable possible symptoms of hypothyroidism” including “fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others.”

Yet, he bemoans, these patients have a “normal TSH” which is “well within the normal laboratory reference range.” He also refers to their normal free T3 and free T4, and states there is no history to suggest pituitary dysfunction or that the TSH is unreliable.”

He then proceeds to pat himself on the back because he 1) will treat some patients with a high-normal TSH and other clinical features,  2) he will treat to a low-normal TSH of less than 2.0, but like the good-boy-doctor, “still within the normal laboratory reference range” and 3) he will not induce iatrogenic hyperthyroidism, even if symptoms persist. (yikes)

“Iatrogenic hyperthyroidism”??  Since “iatrogenesis” refers to harmful medical procedures, he’s probably referring to a TSH below the range, which in his mind, equates to hyperthyroidism.

***Then comes the observation that has made many thyroid patients shiver, since so many doctors have said it: because he feels that adding T3 to T4 has more negative results than positive, he explains to his patients “that there may be causes of their symptoms besides the thyroid.”

THUD.

So here is my 6-point response to any doctor who might share these beliefs:

1) There’s hardly a thyroid patient around who hasn’t had a so-called “normal” TSH in spite of clear and obvious hypothyroidism.  The TSH lab test frequently lags behind what is reality in the body, and has been doing so since it’s creation in the early 1970’s (see Chapter 4 in the Stop the Thyroid Madness book for history).

2) Having a “normal” free T3 and free T4 means nothing. It’s “where” the result falls in that range that means something. i.e. patients all around the world are noticing that having a free T3 mid-range or lower in the presence of hypothyroid symptoms is usually a BINGO lab result pointing to hypothyroidism.

3) Exactly because doctors tend to dismiss clear hypothyroid symptoms as “something else” thanks to a lousy TSH reference range, a burgeoning number of thyroid patients are falling into adrenal fatigue with its low cortisol, which serves to mess them up even more.

4) A huge body of thyroid patients who are on desiccated thyroid hormones (aka Armour, Naturethroid, etc), and who finally have a complete removal of symptoms with a normal temperature and heartrate, also have a suppressed TSH lab result, and not one iota of “iatrogenic hyperthyroidism.”

5) When it appears that adding T3 to T4 is having negative effects, the problem is most likely adrenal fatigue that needs correction, and/or low ferritin, NOT deciding that the symptoms must be from another cause or T3 doesn’t work.

6) “Fatigue, cold intolerance, decreased energy, weight gain, depression, hair loss, low libido, menstrual irregularity and others” may be shared in other conditions, but you are most likely missing CLEAR symptoms of hypothyroidism, both in the undiagnosed patient with a so-called normal TSH, or with a patient treated with the lousy thyroxine, which leaves most everyone with continuing hypothyroid symptoms.

“I’m sorry. It IS your thyroid” is exactly what patients need to hear.

I was informed today that a very popular and well-liked doctor in Texas, who treats many hypothyroid patients, was disciplined recently.  And for what?  Under the column titled NONTHERAPEUTIC PRESCRIBING, it states:  The action was based on Dr. Launius’ prescribing Adipex, Adderal and Armour Thyroid to patients when such medications were not indicated. www.tmb.state.tx.us/news/press/2008/101608a.php

Adipex and Adderol are both central nervous system stimulants, and I can’t comment one way or the other. But the mention of Armour thyroid as “not indicated” is potentially worrisome, especially with similar disciplinary actions brought upon well-liked and wise doctors like Peatfield and Skinner of the UK, Derry of Canada, and  Springer in the US–all who dared to make obvious symptoms more important than ink spots on a piece of paper.

Take Kymm, a 45 year old woman.  She has manifested hypothyroid symptoms for 15 years since the birth of her daughter.  Yet during those entire 15 years, her TSH lab result has been completely “normal”…i.e. hypothyroidism has never been “indicated” based on the typical and widespread gold standard of diagnosis: the TSH.  But she has never, ever been normal with 15 years of easy weight gain, chronic depression, thinning hair, rising cholesterol, and other clear hypothyroid symptoms. And she has in fact started on Armour…and is soaring.

Kymm is not an oddity.  Thyroid patients on internet groups report going years with a normal TSH, no diagnosis, yet clear symptoms which are ignored by their TSH-obsessed doctors.   So their doctors may have avoided disciplinary action, but did they truly practise the art and science of healing??

How many doctors can I strangle with my bare hands?? Grrrrrrrrrrr.

Today, I am once again appalled and saddened by the endless body of thyroid patients who continue to plummet into the abyss of adrenal fatigue, day after day after day. And it just never needs to happen if doctors would simply pay attention and be informed.

Belinda is the perfect example. She didn’t participate in thyroid patient groups anymore, living her life happily, because she thought her post-RAI thyroid treatment was under control, being on 2 grains of Armour for a year. But suddenly, she felt the need to return to her groups and seek feedback. Because she has become more irritable and moody, has a hard time falling asleep, and feels frequently anxietal. Labs are redone, and she finds herself with a slightly over-range free T3 and a very suppressed TSH. Her doctor decides to lower her thyroid meds, which in turn improves her insomnia and anxiety, but weight starts piling on. She’s confused and wonders how she can find her balance between being on too little with unwelcome weight gain and being on too much with uncomfortable anxiety and insomnia.

What Belinda didn’t get, and what her doctor didn’t get, is that Belinda had now joined the dubious camaraderie of those with adrenal fatigue, a needless condition of over-stressed and under-functioning adrenals. As a result, T3 in Armour starts to pool in the blood, causing anxiety, insomnia, and all sorts of low cortisol symptoms. Thyroid patients just like Belinda have to first discover what is going on, then face the complicated balancing act of treating adrenal fatigue AND hypothyroidism. And it’s a path that never needed to happen.

WHAT IS POTENTIALLY TAKING YOU DOWN THE DIRTY-YELLOW BRICK ROAD TO ADRENAL FATIGUE??

1) Being undiagnosed, or being dosed by, the faulty TSH lab test and its dubious “normal” range, which will leave you with lingering hypothyroid symptoms. (Belinda’s 2 grains tells me she was being dosed by the TSH)
2) Being treated by T4-only medications like Synthroid, Levoxyl, Eltroxin, et al, which end up teasing your adrenals to work harder to take up the slack of an inadequate treatment.
3) Lowering your expectations of what “normal” is. No, it’s not normal to have less stamina than others, to be on an anti-depressant to bandaid your hypo depression, to feel colder than others, to require frequent naps, to feel the need to avoid people, to be bothered by lights or noises, to be told by those you love that you are too defensive or over-reactive…and so on.

I hope anyone reading this comes to an understanding that you canNOT enter your doctor’s office as if you are entering the throne of a god. Your doctor, no matter how educated or dedicated, may not have a strong understanding of the role of adrenal function in relationship to bad treatment via T4-only meds or the TSH lab range. You may have to bring this knowledge to your doctor, or find another one who is either learned, or open-minded. Because your chances of having adrenal fatigue are huge if you are on T4, if the TSH is worshipped by your doctor whether on T4 or desiccated thyroid, or if you keep walking into the doctor’s office and hang your own knowledge on the hook outside his or her door.

(See Deborah’s story about ceasing to smoke with adrenal fatigue)

Hardly a person hasn’t heard Aesop’s fable of the tortoise and the all-too-confident hare, running their I’ll-prove-to-you-who’s-boss race. The hare was FAST and certain to win the run. But the ever-so-committed tortoise, even if slow, slower and slowest…was steady…and won the race.

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.

It would make an incredible horror movie. The plot: stunningly convince at least hundreds of millions of individuals worldwide that what has always been obvious, isn’t. That leaves only look green because of alien filters in your eyes. That ripe apples fall because water pulls them down. That fire doesn’t really burn your skin; it’s just your imagination.

And about hundred more schizophrenic ying yangs. Because if those in authority say so, it must be so.

But the horror movie is a reality, and I see it EVERY TIME I come into contact with people and the subject of my thyroid advocacy comes up.

Like today. A couple saw my book and struck up a conversation. She was on Synthroid; he was on Levoxyl. They had each been on their T4-only treatment for 12 and 14 years respectively, felt their hypo was perfectly treated, believed their doctors…and were now dealing with other problems: his rising cholesterol, her depression, his fatigue, and her weight gain. BUT OF COURSE, THOSE HAVE NOTHING TO DO WITH THEIR T4-ONLY TREATED HYPOTHYROID AND SOME OF IT IS THEIR OWN FAULT…leaves aren’t really green, water makes ripe apples fall, and fire doesn’t really burn.

It just struck me. And it’s struck me before. There’s just a LOT of SILENT SUCKERS walking around. I was one; my mother was one; and there are obviously millions out there, still walking around trying to live with the side effects of a treatment that their doctors say are NOT caused by their thyroid.

Sad.

(Has your cholesterol and other lipids improved since you switched to Armour and raised without using the TSH? Your story of success is welcome on the blog post below!)

I was lucky.

My cholesterol hadn’t started to raise yet when I was on Synthroid and later Levoxy. But it was going to, because nearly everyone on a T4-only medication has a climbing cholesterol number, sooner or later, along with heart problems and/or elevated CRP. And what do their doctors do next? Put them on statins with all the lovely side effects: muscle aches & pains, memory loss, and peripheral neuropathy. (See the Yahoo Stopped My Statins group here.)

My mother is the classic example. We have absolutely no heart problems in our family history that I know of. Yet, here was my mother who, in her 60’s, was suddenly in the hospital having a balloon procedure on her heart, called an Angioplasty, done to open up a clogged artery to her heart. Huh??

It was only years later, when I become a thyroid patient advocate, that I could look back and see why that happened to her. She had been on a T4 medication for the majority of her adult life!

Today, as patients are switching to natural desiccated thyroid like Armour, Naturethroid and Westhroid and others, and as they are allowed by their informed doctors to raise NOT according to the TSH but by the complete elimination of symptoms…VOILA…. their once-high cholesterol….FALLS!!

But guess what else falls? Your CRP.

CRP stands for C-Reactive Protein, and it becomes elevated in response to an inflammation. With that elevation comes the heightened risk of heart attacks and strokes. And guess what: continued hypothyroid (as found with T4-only treatment) results in an increased CRP level.

On an optimal amount of Armour, which for me is 4 grains, my CRP is 0.9. Ideal is less than one. Bingo.

***Have a story to share about your improved lipid or CRP levels since you became optimal on Armour? Let us know.

YEEHAW! Check out this study done in 2007–the higher the TSH, the worse your lipids. Ironically, even a TSH IN RANGE does this, according to the experience of MILLIONS of patients!! Thanks Nita for bringing this to my attention!

I use those phrases often. I can’t help it. Because it’s exactly what doctors are when it comes to thyroid treatment. It’s APPALLING.

Yesterday, I had the first of two book signings. It was announced in the paper, and I wasn’t sure what the turnout would be. I shouldn’t have wondered. It was a great turnout. People are GETTING IT that there is SOMETHING WRONG with their treatment. Around me stood several women, all still on T4 (Synthroid, Levoxyl, et al), and ALL suffering. All but one woman had weight problems. Several had rising cholesterol. Some admitted to being on anti-depressants. Some obviously had adrenal fatigue. And ALL were being told by their doctors that their thyroid treatment was now “normal”. Where can I go beat my head against the wall?????? They were eager to get the book and the knowledge it contained to change their lives!

So far, the book has been sent to Norway, Iceland, Belgium, UK, Austria, Sweden, Switzerland, Ireland, Australia and Canada, besides all over the US. The STTM website started the wheel to turn, and the book can only move it faster. And add it to other thyroid books which had begun to mention the truth (Broda Barnes being the first) as well as other groups and websites—we’ll eventually knock some SENSE and SIGHT in doctors, don’t you think?

The Stop the Thyroid Madness book, the bible of correct thyroid and adrenal treatment, by patients for patients, can be ordered here.

P.S. I live near one town which serves a population of nearly 35,000 people, and near another of over 4000 people, and there are plenty of doctors around here. Yet, there is not ONE doctor in this area that “gets it”. I sympathize with YOU if you are in the same boat.

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!

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.