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Too Much on Our Plait

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Special Entry: Good Housekeeping Article Response

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. (I list my own list to add to hers later.)

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:


http://www.thyca.org/

http://www.endocrineweb.com/

http://www.stupidcancer.com/

http://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

Read More 1 Comment | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 48

Wow, it's been a while, hasn't it? Sorry, it's been pretty stagnant in the Cancer Clan. We're all doing fine for the most part. Mom and Janina are doing well. They both are still on 6-month follow-ups, but their scans showed up normal as did their blood work. Aunt Rea, Aunt Gracie, and Melissa are all well, also. They didn't need any radioactive iodine, so they are on yearly follow-ups. Aunt Gracie is the most recent addition to the Clan, so she's probably having more follow-ups, just to check her scar. I did see her at my cousin's 10th birthday, and, let me tell you, her scar is barely there! It looks wonderful, as does she.


I do want to let you all know that Mom and I will be on The Stupid Cancer Show on Monday, May 2. The 'Stupid Cancer' Show is a radio show hosted by Matthew Zachary, CEO and Founder of the I'm Too Young For This! Cancer Foundation, and Lisa Bernhard, Executive VP and Media Development for the Foundation. The show is entitled, "Parents of Young Patients." I will be on air as the Survivor Spotlight, and Mom will be one of the two guests on the show. It's going to be a wonderful show, so please mark your calendars and tune in! The link is here.


I'll more than likely post again later on in the week. I have more to tell! All good things; I promise. :-)


As always, I wish you all love, happiness, and -- most importantly -- good health.
Read More 2 comments | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 47

We got my Aunt Gracie's results from her thyroid surgery. Turns out she does indeed have papillary thyroid cancer. This makes her our 6th member of the PTC Clan. Fabulous.


Mom texted me with the news while I was at work. Of course, my phone was off, so I didn't get the message. I did, however, get a call from her with the news before I could even check my messages. To be honest, I couldn't help but laugh. Does this make me inhuman? I don't really like how I've been reacting since my aunt and cousin were diagnosed, but to be honest, isn't it just second nature now? It's sad to think that way, since this is one of the worst things to consider an everyday occurrence. At the rate this is going, though, it almost looks like it.


Let's put it in timeline perspective:


Me: June 2006 (outlier)
Mom: December 2009
Janina: January 2010
Aunt Rea: February 2010
Melissa: February 2010
Aunt Gracie: November 2010


This is absurd. Do you not agree? I hate feeling like this is just going to keep happening, but I can't help it. How else am I supposed to think otherwise?


I'm always the optimist in any situation that occurs. I do my best to think about the positives of each situation. The only one I can think of in this one is: No one is dying or is going to die.


Please tell me I'm not abnormal in my thinking.


Many blessings of love, happiness, and -- most importantly -- good health.
Read More 0 comments | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 46

I totally should be taking a shower right now, but I realized I haven't blogged in so long, and there's a lot to cover. So, I passed on my shower (for now, relax ;-] ) to update all of you in webland.

Last post, I mentioned that my Aunt Gracie (my mom's youngest sibling) was having biopsies of nodules in her thyroid. Well, those biopsies came back inconclusive, so she went in for surgery to remove her entire thyroid yesterday morning. Her (well, the family's, except me) endocrinologist stated that, considering our family history (which sucks at this rate), she should get her thyroid out. When we were on the phone after her appointment with him pertaining to her results, she said, "Dori, to be honest with you, I'm relieved. I want it out. Just take it. I'm already on Synthroid as it is." I agreed with her. I'm so proud of her attitude. We find out within the week if her thyroid tests positive for papillary thyroid cancer, or another type. That would certainly turn the tables, or at least knock them over.

On November 2, the whole lot of us (me, Mom, Janina, Aunt Rea, Aunt Gracie, cousin Melissa, cousin Jeanne, and her daughter Adrianna) all participated in a study that Johns Hopkins is conducting to find the genes responsible for thyroid cancer. When the family's endocrinologist told him about us, he was "very amazed" and said that our "case is so interesting." The doctor conducting the study said a lot of things that surprised me, yet made sense. 5% of thyroid cancer is the type that my family has, which is a familial cluster. He also told us (much to my dismay and disapproval) that the prognosis is "worse" for familial papillary thyroid cancer. Woo. One thing that definitely didn't surprise me, but it did reaffirm my suspicions, was that it takes "many years to spread," if there is spread. So, that pretty much means that me and Janina had it for a long time before it was discovered.

Hooray.

At any rate, they took blood work and information from us, as did the study from Ohio. Hopefully this will help further along the progress. I'd rather have my family get blood tests than ultrasounds every few years. Gross.

I finally have an update for you all! When we were at the study, we happened to be at the office across from my endocrinologist's office. She stopped by to say hi, then came back and told me there was a conflict with my appointment with her in late December (which would already have been about 2.5 months late). She asked if I could get my ultrasound done that morning. Well, duh! So, I got my ultrasound done, and when my endocrinologist came in, she said that they both saw something suspicious right above my second incision (the one along my neck crease in the middle of my neck). She said she wasn't sure if it was scar tissue, but she wants it biopsied and my blood work checked. I got my blood work done that day. My appointment with my surgeon for my very late follow-up (supposed to be in April; oops) is on Monday, and my biopsy is Wednesday. Hopefully my surgeon can give me a little bit more detail on what it is. Who knows.

At this point, I'm hopeful for the best, but expecting the worst. I can only think about the here and now, and that's the most important thing.

I hope that everything is well with you and yours. Many blessings of love, happiness, and -- most importantly -- good health.
Read More 2 comments | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 45

Another update on the Cancer Clan. My Aunt Gracie (a non-member) is getting biopsies done of nodules in her thyroid on Monday. From what I recall, she has a goiter, but her endocrinologist (same as my mom, sister, aunt, and cousin) decided she should have biopsies just to check. If any of this information is faulty, I'll change it immediately.

So, we'll see how that goes. I'll keep you folks posted.

I was looking through my Cancer Timeline, as I call it, recently. Today, I decided to glance through to see if there are any significant dates in September. I stopped around September, and I found this:

September 19, 2007 -- Thyroglobulin results betray that there may be more cancer.

I feel kind of sad that I didn't see this until today. This post would have been much more effective yesterday, but ah well. At any rate, here are my thoughts about this.

The back story to this event is that I had my usual scan on September 5 along with bloodwork. My endocrinologist gave me scan results immediately following each time I had one, so I always had instant results. This was after my second round of radioactive iodine (RAI), so I was really hoping and praying that this scan would show up clear. When my endo came out and gave me the thumbs up sign, I cried harder than I ever have. Seth (my then-boyfriend) was with me as were my mother and sister. It was so surreal for me; it seemed like a beautiful dream. I truly didn't want to wake up.

The next week, I had been talking to my sister as she was taking me to school one day. I said, "This just feels too good to be true." She told me not to jinx it. Well, I think I had, truth be told.

When I got the call from my endocrinologist stating that my levels were high, I was very confused. I thought that scans were completely accurate. How could I still have cancer? How could the scan betray me? Where  was it, then? And why wasn't it showing up on my scan?

To make a long story short (I'll elaborate later on, when I go through the rest of the story later on in the week), I still had cancer in my body. It wasn't showing up on the nuclear scan because it didn't pick up any RAI. It was what my endocrinologist calls "radio-resistant" thyroid cancer tissues. These don't respond to treatment. The only other real treatment there is is surgery. And, that's what had to happen on November 29, 2007.

The point I'm trying to make here, ladies and gents, is that thyroid cancer is a bit more difficult than we all may think. Sure, it's a better one to have than breast cancer or lung cancer, but it's still a pain in the butt cancer. Every cancer is, to be honest.

I learned a valuable lesson when this scan came through. I learned that you cannot rely on just one source of information. Folks, get ultrasounds. Get bloodwork. Get scans. Do everything it takes to get accurate results. Get multiple opinions if you feel you must. Honestly, it makes a world of difference.

I know so many cancer patients who were misdiagnosed or mistreated because they were not given the right diagnosis or given the proper treatment they needed in order to combat their disease. By the time their cancer was found and treated, they were in Stages III or IV. Don't let yourself get that far. Check your body. Know what feels right and what doesn't.

As always, I wish you all love, happiness, and -- most importantly -- good health.
Read More 0 comments | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 44

JANINA'S SCAN CAME BACK CLEAR!!!!


Sorry, I just had to blurt that out. Totally couldn't control it. I mean, can you people blame me? :-)


Mom is up next. Truthfully, I'm pretty worried about her scan. We were told she had no spread during her surgery, but then the scan following her treatment showed some uptake (RAI cling-age) in the right side of her neck. So, I really don't know what this scan will say. Let's just hope this treatment does the trick. Unfortunately, she does have to go through the low-iodine diet in order to prep for the scan. Oh, yay. Looks like I'll be doing some baking/cooking for her when that time comes around. I know by experience that stuff sucks.


To top off this fun entry, I have my 6 month follow up with my endocrinologist mid-October. Woohoo. While I do love seeing my endo, I don't really like having the waiting game. All she does is ultrasound me (while making comments and pointing at things, all of which I despise), feel up my neck, and bloodwork me. So, yeah. It's just one of those times I dread. Who knows what all of those tests will say?


I've got a small get together to go to tonight, so I'll save my big long heartfelt sentimental post for tomorrow. Until then, my darlings!


As always, I wish you all love, happiness, and -- most importantly -- good health.
Read More 0 comments | Posted by Adelina and Dori | Links to this post | edit post

Like Daughter - 43

It has been forever, loves, but there is finally an update on the Cancer Clan. Janina has bravely endured 3 weeks on her low-iodine diet, and has her nuclear scan tomorrow. This scan will determine one of three things: 1) if she is clear of thyroid cancer, 2) if not, she undergoes more radioactive iodine, or 3) she undergoes another surgery. Of course, we'd all prefer #1, but if that isn't the case, then I'd much rather her go through #2 than #3. I don't think I could handle seeing her go through a second surgery. She would take it well, though, knowing her. She's braver than any woman I know. But, let's not dwell on all that, shall we?

Mom is due for her scan soon. She's going to have it on a day she's off work, so I can go with her. She told me the other day that she has to brace herself for a nap. "It's too long of a scan," she said. The scan is an hour long, and it hovers about an inch away from your face/body, and it sloooowly moves down and up your entire body.

I've had about four of those scans. They all took place in the first, oh, year and a half of my treatment, so I was pretty used to them. If I had one now I'd probably just shrug and say, "OK!" By the time my last treatment came up, I knew everyone in the nuclear medicine facility by name. They were fantastic people, minus the woman who did the faulty Geiger test on me in my previous post. And, no, I'll never forgive her for that. ;-)

Anyway, during these scans, I would be nervous, of course. They pretty much determined what my next six months, or year, would consist of. To help this nauseousness subside, I would sing soundtracks/CDs in my head. For example, during one of my scans, I went through the entire Rent soundtrack/Rent movie in my head. By the end of the scan, I had pretty much gone through the whole film. During another scan, I "listened" to the whole Wicked soundtrack. It took all I could not to smile during the scan, and it comforted me.

These kinds of things kept me going during my entire journey. Sure, I had my family, friends, and then-boyfriend, but when they couldn't be by my side during the scans and treatments and surgeries, I had my memories, my songs, my slideshows. I thought of anything and everything about these people in my life and the other things that made me happy. I would instantly come alive at the thought of any of these things, and it reminded me that, no matter what, this too would pass.

As always, sweeties, I wish you all love, happiness, and -- most importantly -- good health.
Read More 0 comments | Posted by Adelina and Dori | Links to this post | edit post
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  • Behind the Blog

    Adelina Plait is a full-time wife, mother, practice manager, and medical transcriptionist. After receiving an ultrasound and countless biopsies, she was diagnosed with papillary thyroid cancer on December 11, 2009. She successfully underwent surgery on December 29, 2009, and had her first radioactive iodine treatment in February 2010. Following treatment, Adelina no longer needs RAI, but still follows up every six months with her doctors. She has been doing well, and refuses to let cancer slow her down.

    Dori Plait is 22 years old. She graduated in May 2010 with a degree in Adult Special Education. She was diagnosed with papillary thyroid cancer at the age of 17 on June 1, 2006, just three days prior to her high school graduation. Dori endured two radioactive iodine treatments and two surgeries to remove her complete thyroid and 39 total lymph nodes from her neck. She is now under close watch by her doctors, and only time will tell if the cancer stays at bay.

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