T4-only tags

In the magazine India Today, it’s estimated that there are at least forty million individuals with thyroid disease, according to Dr. Ganapathi Bantwal, faculty member of the Indian Thyroid Society (ITS) and Professor and Head of Department of Endocrinology, St John’s Medical College, Bangalore.

He adds that most are women, and most hypothyroidism is occurring after the birth of a baby, called postpartum hypothyroidism.

The Indian Thyroid Society wants to observe January 2009 as Think Thyroid Month with experts calling  thyroid related disorders as the next diabetes to affect the nearly forty million Indians.

A side note from Janie: Sadly, when you visit the website of the Indian Thyroid Society (which by the way was created by the Department of Endocrinology at Amrita Institute of Medical Sciences in India), there is a flashing ad on most pages for thyroxine called Thyronorm. And guess who makes “Thyronorm”? Abbott Labs in India, the same pharmaceutical in the US which produces Synthroid.  Anyone hear the theme song from Twilight Zone playing in the background??

My mouth just fell open last night.

Apparently, in December of 2002, an Australian doctor named JP Walsh (Department of Endocrinology and Diabetes of Sir Charles Gairdner Hospital, Nedlands, Western Australia), and an Endocrinologist to boot, wrote an most interesting article in the journal Current Opinion in Pharmacology.

This incredibly stunning article was titled Dissatisfaction with thyroxine therapy — could the patients be right?

The abstract states:

In some patients with hypothyroidism, symptoms of ill health persist despite thyroxine treatment. It is unclear whether this arises from comorbidity or because standard thyroxine replacement is in some way inadequate for some individuals. Some patients feel better if they take a slightly excessive dose of thyroxine, but this carries a potential risk of adverse cardiac and skeletal effects. There are conflicting data on whether combined thyroxine/triiodothyronine treatment is preferable to thyroxine alone in dissatisfied patients

I am unable to read the full article, as it is required that you pay a sum I don’t have. But you definitely get the impression that this doctor was on the cusp of figuring out what we have known solidly all along.  Because Dr. Walsh, the patients WERE right, and still are.  Synthroid, Levoxyl, Eltroxin, levothyroxine and all other T4-only medications suck, and have sucked for a long, long time.  www.stopthethyroidmadness.com/t4-only-meds-dont-work and  www.stopthethyroidmadness.com/long-and-pathetic

I so hope to be able to contact Dr. Walsh.  Do you know him?  Because he and I need to have a long talk.

Janie

p.s. Thank you Gerry.

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)

I received a reply to a post below that I was unable to approve because it mentioned someone by name. And the reply was not particularly friendly, and definitely not accurate. lol. But the reply brought up some good issues, which I have no problem addressing.

Namely, can I agree that there are some people who do well on T4-only treatment such as Synthroid or Levoxyl?? I can…sorta. I have a friend whose husband is one of those seemingly lucky individuals on T4, with no thyroid, who leads a fairly active and happy life. Considering how lousy I did, he amazes me. But I did notice something else about him: he has high and rising cholesterol and is on statins. That’s a classic symptom of a poor treatment and continuing hypothyroid, even if he does have much better energy that I ever did.

And by observing him, and knowing a few others who subjectively feel they do well on T4, I came to the following conclusion: though some may do better than others on T4, I have yet to find anyone on T4 who doesn’t have some kind of side-effect of a poor treatment, whether they are treating it with statins, treating it with antidepressants, or not treating it at all & denying it. Sure, some may do better than others, but the proof is in the pudding if you look deep enough. And, at the very least, I’m just plain suspicious that ANYONE on T4, even doing subjectively well, is going to have symptoms of a poor treatment creep up on them as they age. The body was not designed to live on conversion alone.

Can I agree that some people just canNOT tolerate desiccated thyroid like Armour and need to be on T4? Initially, that may be. The gal that wrote me stated she felt a lot better on T4, and that no matter what she did, she couldn’t tolerate Armour. I believe her. If Armour was that miserable, she should be on T4 for the time being, or even better, a synthetic T4/T3 combination. But I also believe that even if she feels she did everything to a “t” and still couldn’t tolerate it, there was more for her to learn that she didn’t get the first time around when it came to her adrenal fatigue treatment. I see it too many times. And perhaps, over time, it will become more clear.

Do some proponents of desiccated thyroid go overboard in their fervor? I don’t doubt it one bit. We’re human. And we hope you are forgiving. But once you get past however you view are communication shortcoming, do know that our fervor is based on the fact that a huge volume of individuals are having lives changed due to desiccated thyroid (and/or treatment of low ferritin, and/or treatment of adrenal fatigue). And it’s too widespread and global not to have fervor, besides common sense that a treatment that gives us back what our own thyroids would be giving us is just plain remarkable.

So, do know that if you are on T4, and feel well, I’m behind you. It’s your life, not mine, and I believe you. But neither can I stop my belief and too many observations that if you are truly hypothyroid and need treatment, desiccated thyroid is a superior choice, now or later, whether you are lucky enough to have escaped adrenal fatigue, or whether you have a challenging case of adrenal fatigue that can be adequately treated!

I often wonder how many celebrities MUST have hypothyroidism, yet we don’t know it. Tonite, I just found out that Jillian Michaels, the tough and muscular fitness buff on the TV show Biggest Loser, has hypothyroidism.

And you’re left to wonder: is she, and are others, on Armour, Naturethroid, Westhroid?? Have they found out about the superior treatment of desiccated thyroid over a T4-only treatment with Synthroid, Levoxyl, et al?

Other celebrities with hypo include Kim Alexis, Linda Ronstadt, Kim Cattrall, Kelly Osbourne, Oprah Winfrey and others. We can only hope that one day, someone will figure out that desiccated thyroid is a superior treatment, and help us spread the word. So far, Oprah has let us down. Maybe…maybe…someone with the ability to spread the word will step up to the plate.

p.s. Prefer a book to a website? STTM is now in book form, with even more information than you can find on this site, and waiting to be in your hands.

Look at my blog post below and you’ll see the latest duhhh entry–i.e Endocrinologists finally reported that T3 was an effective treatment in place of T4. Finally!! Of course, patients know that desiccated thyroid is an even BETTER treatment, and that has been underscored by those that tried T3 with their T4 (without having a reverse T3 issue), then switched to desiccated thyroid like Armour, and noted they felt much better. But it’s still an announcement in the right direction.

But we now have another duhhh entry: The Journal of Clinical Endocrinology & Metabolism has reported that long-term levothyroxine replacement therapy in young adults is associated with cardiovascular abnormalities. Another finally. We as patients have already known that for years! We’ve experienced what Synthroid, Levoxyl and all other T4-only medications have done to our hearts! I watched my own mother have to have an angioplasty because of her long-term use of Synthroid…and we have NO heart disease or problems like this in our family history!

So yes, you will see the announcement that a new page is going to be created here on STTM which will highlight journal entries and medical announcements which only support what patients have been experiencing and trying to tell their doctors for a longgggg time. lol. And your contributions to this new page will be welcomed.

********************

The new page is here: www.stopthethyroidmadness.com/medical-research Check this page often, either to send me new research which supports what we already know, or to find meat to give your rigid doctor.

***You can order the STTM book here, which is a complete patient-to-patient book on far better thyroid treatment. It’s YOUR book!

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!

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!

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.

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.

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.

….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.