If you are an avid member of the thyroid disease/cancer community, then you most likely already know the controversy and outrage that surrounds this article, written by Susan Carlton and published by Good Housekeeping. If not, this article and all comments and concerns about it still apply to you. Why? It’s as simple as this: knowledge is power. Knowledge of the diseases and cancers that are out there, and knowledge about what information is accurate, and what information is dangerous. Below is my take on certain portions of the article. Admittedly, I am no expert. Some of the information that Ms. Carlton presents is without documented sources. Therefore, I can neither credit nor discredit her claims. However, since I currently (some formerly) endure four different types of thyroid diseases, I am able to use my 5 years of acquired experience and knowledge to refute several points made by Ms. Carlton and Good Housekeeping. Questions, comments, complaints, and commendations are not only requested but encouraged.

Introduction – Section 1

“My eyes lit up. Could the problems I’d assumed were inevitable be blamed on the tiny thyroid gland — and be reversed with a tinier pill? Maybe I didn’t have to renew my gym membership after all.”

What I feel Ms. Carlton is inferring here is that Synthroid and its brothers and sisters (Levothyroxine and such) will simply cure all of her symptoms – fatigue, weight gain, lack of energy, brainfog – and then she will happily carry on her life. That is a piece of information that should never be relayed to anyone. It isn’t as simple as that. While she does state that it isn’t simple in the next paragraph, I don’t think she should have used such a comment as a clever quip. It sends the wrong message to individuals who are not privy to the ins and outs of thyroid problems. I’ll explain further on this as the article progresses.

“At least 13 million Americans have some form of hypothyroidism, says Jeffrey Garber, M.D., who (literally) wrote the book on it — The Harvard Medical School Guide to Overcoming Thyroid Problems.”

When I Google’d the general quote from Dr. Garber, I noticed that this statistic was in an online review of this book, but it was written very differently. You can view it here under “Editorial Reviews.” It clearly states the following in the review, “More than 13 million people in the United States suffer from some form of thyroid disease, and that number is expected to rise precipitously as the baby boomer generation approaches its sixties.” This changes the meaning of Ms. Carlton’s statement entirely. It isn’t solely hypothyroidism that over 13 million people in the US deal with on a daily basis – it’s every thyroid disease. That includes, but is not limited to: thyroid cancer, Hashimoto’s Thyroiditis, and Hyperthyroidism. Not only did she misquote, but she also did not even use this book to her advantage. She only uses one statement from the entire book in her three-page article, and even in that statement there is no evidence of how to “understand thyroid problems”, as her article claims to assist the reader to do. She does quote Dr. Garber later in the article, but I (nor anyone else) am not sure if that quote is from his book or if she spoke to him personally (The evidence that Ms. Carlton did not speak to any of the doctors she cited in her article and responses to her “advice” can be found here). Even with the secondary quote, it is obvious that Ms. Carlton did not put forth as much effort as she could have to include more information from this source.

Ms. Carlton then proceeds to give a statistic about how many people are affected by hypothyroidism, following it with this: “(Hyperthyroidism, meaning thyroid hormone production is in overdrive, is a less-common condition.)”

Just so the readers know, this is the only statement she makes throughout her entire article on Hyperthyroidism. Word to the Not-So-Wise: If you are going to write an article about “understanding thyroid problems,” then you should probably write a little bit more than just one line about another thyroid problem that exists. If your focus was simply on Hypothyroidism and Hashimoto’s Thyroiditis, then state that in your title and description so it does not mislead the readers. This title is, in a word, insulting. You, my dear Ms. Carlton, claim to have all of the secrets we want to know about our thyroid problems, and yet, you only focus your attention on Hypothyroidism, with Hashimoto’s Thyroiditis being a close second. Where are the others? And how dare you make such light of Hyperthyroidism and only describe it in six words, then say in a single breath that it is a “less-common condition”! All that would tell a reader who is still learning about these conditions is that Hyperthyroidism is not a disease that should be worrisome since it obviously couldn’t possibly happen to that reader. It’s “less-common!” Let your mind be at ease, dear one! You are saved from Hyperthyroidism! Here’s a little factoid for you, Ms. Carlton: I have hyperthyroidism due to being diagnosed with papillary thyroid cancer when I was 17 years old. These are two thyroid diseases that you failed to mention and explain in your article. Hm. Fancy that.

It gets so much better (oops, I mean worse): “Hypothyroidism has been recognized since at least the 17th century, yet it’s become a disease du jour…”

Excuse me? Okay, Ms. Carlton. Here is another factoid about my thyroid cancer battle for you: In order to receive radioactive iodine treatment (RAI) to treat my thyroid cancer, I was forced into hypothyroidism. When hypothyroid, iodine-suppressed, and then given iodine, the thyroid immediately takes it in and uses it. There is also a low-iodine diet that contributes to the thyroid being so deprived that it will suck up all of the iodine given to it during treatment. Believe me, my dear, being so hypothyroid was not a walk in the park. It is certainly not a “disease du jour,” as you so flippantly called it. Who says we wanted this for ourselves? Who says I wanted to become so tired and exhausted that I couldn’t even enjoy my summer with my friends and family like I wanted to at 17 years of age? Who says I liked being so cold in the middle of July that I was wearing sweatshirts, sweatpants, gloves, thick socks, and a blanket in 70-degree weather? Who says I enjoyed my weight gain when I was already overweight (and struggling with it) to begin with? Ma’am, you have some serious rethinking to do. None of us asked for this, and none of us want to be a part of this club. When your hypothyroidism starts to affect you more than it has (because it will), I hope you begin to feel the same way.

“…people have lots of questions.’

There’s no shortage of answers for them. Hundreds of websites, a virtual cottage industry, profess to educate women about hypothyroidism.”

It is certainly one thing to have hundreds of websites dedicated to providing information on hypothyroidism to the public, but how do we know that these websites are giving accurate facts? It is easy to find information, sure, but how are we sure as to which websites are legit and which are a farce? Ms. Carlton does respond to this later in the article, and really gives some valuable website information, but the list definitely does not start and end with the sites that she listed. I also firmly believe that she could have listed websites for the rest of the thyroid diseases and conditions that she did not discuss in the article. (Psst: www.thyca.org, being one.)

Testing Roulette – Section 3

“To confirm a hypothyroid diagnosis, many doctors suggest two additional blood tests: one to check the levels of T4 hormones (low levels confirm hypothyroid) and another to check for antithyroid antibodies (to see whether you have Hashimoto’s).”

Whatever happened to T3 hormones? Sure, T3 tests are important for diagnosing hyperthyroidism and Graves’ disease (again, another disease not mentioned in Ms. Carlton’s article), but the T3 triiodothyronine brand medication called Cytomel, can be (and sometimes is) used alongside Synthroid (Levothyroxine) to relieve symptoms of hypothyroidism and speed the buildup of Synthroid in the body. Personal anecdote: While I was undergoing treatment, my endocrinologist (God bless her) prescribed me Cytomel for the first two out of the six weeks I spent in prep time for treatment. During those six weeks, I had to become hypothyroid, and the Cytomel helped relieve my symptoms of hypothyroidism for the first two weeks. If I had not taken that medicine, I would probably have been in an even worse state than I was after the six weeks had passed. Once treatment was completed, I was able to resume my Synthroid, along with two weeks of Cytomel. The Cytomel was a lifesaver for me while I was in college. If that medicine had not been given to me, I would have struggled greatly through my first two semesters of college. I would probably not have passed most of my classes. To learn more about a study that proved T3 triiodothyronine medications to be helpful alongside Levothyroxine, see Mary Shomon’s article here.

To Treat or Not to Treat – Section 4

“The goal isn’t just to ease symptoms — it’s also to preempt new ones.”

I think she meant “prevent.” Hey, typos happen.

“A recent Danish analysis of a small group of newly diagnosed hypothyroid patients found little or no change in patients’ fat mass after one year of thyroid treatment.”

Where is all of the information for this study? Where can we find it? Dori to the rescue! The brief overview and results of this study is located here. Does it really take that much effort to keep track of your resources and then cite them?

Treatment: Old-School Versus New-Age School – Section 5

Explain, explain, explain. When writing an article that people will read for information, you need to explain as much as you possibly can. The “why’s” will always jump off the page for readers, especially when information that is deemed crucial is stated in one sentence or quote. Here’s why:

“’The goal is to take the lowest dose possible to get the TSH in the 1 to 2 range,’ says Daniel Duick, M.D., an endocrinologist in Phoenix and president of the American College of Endocrinology.”

Why do we want our TSH in the 1 to 2 range when hypothyroid? I’m sure most if not all of the readers of this article were asking, “Why 1 to 2?” Well, our beloved Mary Shomon, About.com Guide for all things Thyroid, explains that in this article.
Online…And On Guard – Section 6
While I do believe that she posted some informational websites, I believe that she could have listed so many more, if only she had discussed the several other thyroid diseases that exist. Below are several websites that I adore and want to add to Ms. Carlton’s collection:
www.thyca.org
www.endocrineweb.com
www.stupidcancer.com
www.thyroid.org
http://www.cancer.gov/cancertopics/types/thyroid
http://www.medicinenet.com/thyroid_disease/article.htm

This is just too good of a conclusion to skip without commenting:

“So here it is: Six months later and after a retest, I find my TSH is…exactly the same. Given my family history, my doctor recommends I check again next year. With all I’d learned about hypothyroidism, I had already decided that even if my levels had nudged up a bit, I would opt out of treatment. In the meantime, I’m drinking more java (for energy) and honing my crossword skills (for focus). As for the unwanted pounds, there’s a spinning class on Saturday with my name on it.”
While I am no expert, I do know that coffee, crossword practice, and [insert workout class title here] will not eradicate symptoms of hypothyroidism, nor will it even lessen them. While hypothyroid, I had so much trouble concentrating on my Sudoku puzzles, even coffee would not suffice. I still would fall asleep! And I sure as hell did not want to work out while feeling so horrible. I sincerely hope and pray that Ms. Carlton’s health does not decline, but unfortunately, there is a very good chance that it will. As Dr. Datis Kharrazian states in Mary Shomon’s article in response to this controversy: “The research shows that by ignoring an autoimmune thyroid condition one raises the risk of developing future autoimmune issues. Also, the brain is highly dependent on sufficient thyroid hormones to function normally and she is accelerating her own brain degeneration, memory loss, and autonomic dysfunction by ignoring her declining thyroid health.” If you read her article and have the choice of treatment or ignorance (like Ms. Carlton), I truly hope you will choose wisely.

My Final Thoughts

Just so that I make myself clear, I am not holding Ms. Carlton solely responsible for this article being available. I do also blame the editors at Good Housekeeping for deeming it appropriate and factual enough to publish. You can view the editor’s response to the thyroid community’s comments, concerns, and rants about the article here. In short, the response to our outrage is stating that we are not careful readers and Good Housekeeping is avoiding taking responsibility for this dangerous article and its contents. I am horrified by this and still am amazed that they are standing by this publishing, and personally am offended by their simple yet bogus reply.

Please, my friends, be aware of what is out there, and make sure you are receiving accurate information about your diagnoses, and any other disease out there that you are trying to understand. It is articles like this and people like the editors of Good Housekeeping that/who mislead us and potentially harm our bodies further due to their lack of proper guidance. Know your body and know that you have valuable, reliable resources at your disposal. Use them wisely.
Wishing you love, blessings, and most importantly, — good health.
Dorienne Plait
5-year Papillary Thyroid Cancer Survivor

Dorienne Plait

Dorienne Plait hails from Baltimore, Maryland, and is a papillary thyroid cancer survivor. Her 5-year cancerversary was on June 1, 2011. She is a graduate of Towson University, with a Bachelor’s degree in Adult Special Education and Secondary English. Dorienne and her mom, Adelina, share a blog about their family’s journey with stupid thyroid cancer, called Too Much On Our Plait (http://toomuchonourplait.blogspot.com)

Well, today I woke up entirely exhausted again. This has been going on for about a couple weeks now. Some nights I sleep , usually with the assistance of yet another prescription that has taken up residency on my night table. Most nights it’s a grueling fight to rest as my body writhes in pain, dripping sweats and just plain insomnia. This fatigue of late is different however. It’s the, “I can barely function” sort of fatigue that grips every muscle and clouds my memory. I’ve had this sort of fatigue before in combination with other things I’m noticing. I’ve had sudden appetite changes and stabbing pains like lightning on my right side. Of course I’ve found every excuse to diminish or dismiss these things that have put a sudden brake on my life. For six weeks now, I have been nursing what is believed to be a possible injury although I never noticed a particular event that started all of this pain.  I am fairly active and involved in water sports.  I race competitively as a part of a dragon boat team and I also practice and exercise nearly every day.  I have felt strong for the past several months. Occasionally I even join my husband for a run, although I find that rather boring compared to paddling on the water.  We tease each other about which is more boring, paddling on a boat or running.  In the end, we trump each others reasons and realize that although it’s fun to prepare for a race, I go to practice to simply be on the water.  He simply goes out the front door to run for the high and has not yet signed up for a race.

Although I have backed off my workout routine, my back and my ribs continue to hurt more and more.  It has grown from annoying to agonizing.  At the end of the weekend, the pain was so intense I could not breathe. Concerned about a broken rib or something sprained, I went to the hospital. After the usual x-rays and blood work, I was sent home with pain medications that I already have at home.  I took a little time off from practice and rested with medication and ice every night with no change. I decided I wanted to move again and consulted with my doctor. It was agreed that as I am in good overall shape, I should get back to working out and practice as long as I hold back a bit and stop if it gets worse. Well, here I am six weeks later going to PT every other day and finding no relief. After two weeks of doing all the prescribed things I should do to improve, I find myself declining more.

I don’t like it when the doctors look at you with concern and order more tests. Tomorrow I go to the hospital for a bone scan. Naturally the thing I fear the most is that cancer has returned.  I’ve read everything about metastatic breast cancer and where it shows up next.  As much as I want to find out that there is something more to all of my pain and weakness, I do not want to hear what’s in the back of my mind. I suppose many people who have been diagnosed with cancer and have gone through recovery must worry about cancer returning every time there is some unexplained illness or list of symptoms. I know I have put off going to the hospital for a few weeks in hopes that my pain would subside after some PT and rest. No such luck.

And now as much as I want life to return to normal, I am suddenly back to asking my kids to carry the laundry after I was able to bench press their body weight. I have spent the past year working hard to regain my health and strength. I tried this new sport I love weeks after completing my chemo treatments last summer and never looked back. As the snow began to fall, I turned inside working out faithfully until I could paddle again on the water this spring. I have felt good and strong enjoying life again. I do not want life to be interrupted yet one more time. I am trying to be hopeful, but I can’t help but worry that tomorrow’s tests will tell me what I don’t want to hear. I suppose I am hoping that I will feel silly for all of the worry. I felt that way two years ago when I felt all of these same symptoms. “What if I have cancer or something”? And then I shook my head thinking how silly it was to think of such dramatic results. It was surreal the day I received the dreaded phone call with the bad news after a series of tests. Denial is a powerful way to cope before and during cancer. But once you’ve had cancer, it’s difficult to deny that it might return. When all goes wrong with the body, it’s the first thing on the mind.

My husband will take off work tomorrow to sit with our children as I go through a very long day at the hospital. My heart is heavy and I am frustrated with grief that I am dealing with these current issues after taking such good care to be healthy. I have little patience for the things that put me down. I fight with anger for my strength and losing it represents something different to me than just feeling weak.  Others have been kind and want me to rest and heal so I can return to life again, but I feel helpless when rest yields no results. I feel frustrated when I take care of my body but I don’t know what’s wrong.  I have scheduled my first Reiki session the day after tomorrow. It is the one thing this week that I look forward to as I strain to hold on to positive energy.  It will distract me from waiting for the doctor to call after my tests.

I received another compliment about my boys angelic behavior at therapy today.  We have a routine when it comes to attending all of my doctor appointments.  Bring lots of stuff to do and sit quietly.  I am so proud of them as they do not complain and are wonderful company, but I can’t help but feel guilty that this has become routine for them.  I wonder what impact all of this will have on them in years to come.  I witness in them a peace and calm and an early onset of empathy.  I see how nurturing they are around my friends’ younger children.  For them, spending countless hours in waiting rooms, treatment rooms and at chemotherapy has become the norm.  At their age, it is all that exists in their recent memory.  What it was like “before”, has become faded even for me and all but gone for them. Though I’d rather see them busy at play outside, they are content doing the quiet things they can do until I am done.  Occasionally we make a special day of it and get treats together at our favorite coffee shop.  They like feeling “grown up” holding their hot chocolates while I sip on my coffee in the same kind of cup.  I suppose the tradition had its start when a nurse told me long ago that I should try to eat something before blood draws or treatments, and all I could manage was a sweet cinnamon apple fritter.  I have not tired of getting those sticky savory globs of dough warmed to go.

I suppose tomorrow will be no different.  Comic books and snacks are packed and ready for the long day. We will stop at our favorite spot on the way to the hospital.  I will watch my sons anguish over which pastry choice will win over another.  Maybe some think that children shouldn’t be in hospital waiting rooms.  It is not my first choice for them, but as I look back at all the time they have indeed spent with me in these places, they enjoy the simple time we have spent together.  They do not show fear toward these places filled with sickness, and when we talk, they mostly remember sitting with me sipping on hot chocolate discussing our plans for when we return home.  We take each day as it comes and deal with things the best that we can.  I will be at the hospital much of the day and we will spend some of that time together snickering over the funny parts in the comic books.  They will not be anxious or fearful and I will say hello to all of the hospital staff I have come to know so well.  And so, with all of my worries put aside, tomorrow will be just another day as usual…in the waiting room.

Laura McGinnis

Read more at: http://hidden-dragons.blogspot.com/
I am a mother, a wife, a sister, a daughter, an athlete, a photographer, a psychotherapist, a runner, hiker, artist, musician, business owner, writer and friend. Oh yes, I like biking and camping quite a bit too. Before you start thinking I’m one of those crazy, fears nothing outdoors type, I’m just a regular woman who happens to have alot of passion for life. I “retired” 10 years ago as a psychotherapist & medical social worker to raise my 2 amazing boys. I suppose I took a maternity leave and never went back. I own a photography business which I run from my home in Pittsburgh, PA. I was diagnosed with breast cancer in 2009. Since 2010, I am a member of a breast cancer survivor dragon boat team. Something you can google as you try to figure out what that is…but I’m a paddler, not a rower. Just to make that clear! As for the rest, read my story. I am open and honest. My story reveals very personal details sometimes because I want those of you who are too suffering from cancer or know someone, to know that you are not alone.