Ride for Life: 2012 Tour de Cure

CHANCES ARE YOU KNOW SOMEONE WITH DIABETES

Well I survived again! Today (Saturday) was the American Diabetes Associations big bikeathon, or as they like to call it, the Tour de Cure. I started doing this last year after my step-father-in-law Leighton told me about it. He has diabetes. Chances are, you know someone with diabetes. Or have at least sat next to one in the waiting room of your endocrinologist’s office. In fact, many people with diabetes also have thyroid problems as a result of their disease. Leighton is on a higher dose of Synthroid than I, and I have no thyroid!

The Tour de Cure is AWESOME even though it is extremely difficult and SOME family and friends (AHEM) told me I was crazy to do it. The SOLE reason this event is a matter of survival as opposed to just fun exercise for a good cause is because some crazy person decided to hold the Dallas ride at the end of July. July 28^th actually has no significance to the ADA. In fact, the Tour is a nationwide event and many states cooler than ours hold their event from February-June and August-October, any of which would have been far better than JULY. I clicked on about thirty different locations on the event map and found only ONE other location that rode on July 28^th, and that was in Hillsboro, Oregon. Guess what the high in Hillsboro was today. 76 degrees. 76!!! Our high was 106.

If the ADA had a suggestion box, I would be sending a lot of letters. Anyway, I wanted to do 64 miles this year, but A) did not ride further than 35 miles when training and B) did not want to DIE of heat stroke. If it were in winter maybe. New York and New Jersey have rides in October. How does that make sense??

YOU CAN STILL BE A HEALTHY PERSON (WITH A DISEASE)

Okay enough griping. Tour de Cure really is a fun and fantastic event. It is held at Texas Motor Speedway, and while I am not a car racing fan, it is pretty cool to bike a round such a big fancy track. They let us do a lap around the track and then the rest of the ride is along 1-2 lane country highways next to fields of sorghum and sunflowers. There are two rest-stops at the 10 and 16 mile marks, where wonderful volunteers give you food and water and cold towels and sunscreen and mist you with sprayers and let you sit in the blessed blessed shade while you catch your breath. To the right is a picture of the starting line. I am in there somewhere.

And once you survive the event, you get to sit in more blessed shade and drink more water and eat and listen to a band and visit a million booths giving away free merch and massages. I’m still mad at myself for not getting a massage while I was there.

Oh and I got to ride next to a guy on a penny-farthing bike for a while (Pictured left. The bike, not the guy). So if that doesn't raise my cool status I don't know what does.

This year I rode 32 miles in 3 hours and 8 minutes. That includes stopping 3 times to rehydrate, eat, sit, get sprayed in the face with water and use the port-a-potty. I completed the last 10 miles in 33 minutes. Both of these are personal bests for me.

Yes, I am tooting my own horn. But this is a HUGE improvement over last year, when I felt a bit weak and goofy. I took up bicycling as a hobby after my cancer diagnosis because it makes me feel absolutely and solidly alive. Even though you can feel perfectly healthy at the time of your diagnosis, cancer threatens to take away all those feelings of health, security, strength, independence. Until you are convinced that you ARE the cancer. That it has taken over your identity and no one (including yourself) will ever see you as a unique, productive or desirable individual again.

Cycling is my way of countering those feelings. Being outdoors, using all my senses at once, I become healthy again: feeling the strain of my quads as I push forward, hearing my breath pushing rhythmically against the air, smelling the sun-soaked earth and my sun-soaked skin, tasting the life force that is icy cold water and seeing myself reach each goal I set, go a little further than I thought I could. Those experiences have been everything. Someone so alive cannot be sick. Someone so alive cannot be defeated.

Last year, I was mostly in the back and would just try to follow someone who didn’t look too muscular. I did not finish until about 1:30, meaning it took me about 5 and a half hours to complete. The moment I remember most distinctly is finding myself along on a country rode and having a car full of teenage girls drive up next to me, cheering me on, saying “You can do it!”as if I didn’t quite look like I was going to make it. No one would say “You can do it!” to Lance Armstrong. He KNOWS he can do it.

This year, I would pick a muscular person, the kind with the square calves and bulging biceps, and tell myself to follow them, only to end up PASSING them! And I kept right on passing people. I definitely got passed, and the ride is not meant to be competitive, but I wanted to have a decent time and I think I accomplished that goal. I found myself going speeds I have never been able to maintain in the past.

Here is what I suspect were the keys to my cycling success:

1) The whole crowd aspect of a group-ride is super motivating.

2) I kept humming “Situation” by Yaz in my head, a strangely excellent beat for exercise. Mostly I was just singing “move out” over and over, especially when going uphill.

3) AND I just really wanted to get out of the heat. So I guess if the event WERE in October, I might not have been as motivated to ride quickly.

DONATE TO SUPPORT THOSE WITH DIABETES

Here is my “Sick people should stick together” plug: It feels good to help a cause even when it’s not your own. I have raised $355 so far. If you would like to donate, there is still time! They are collecting donations through August. Just click the icon below if you want to show your support for those with Diabetes and promote the research and awareness of this disease!

DREAM BIG THYCA CYCLERS

The next step is to start a THYCA fundraising event! How amazing would it be to have something comparable to the Tour de Cure?! I have not given up on my dream of a THYCA cycling team and eventually a bikeathon.

It reminds of Pollyanna dreaming of the bazaar:

“Picture it. Darkness. And out of the night,

50 bicycles appear moving down the square.

And hanging from their handle bars, two hundred,

TWO HUNDRED, gorgeous Japanese lanterns!"

Be Your Own Health Advocate

I credit this title to my friend Donna, who works in health care. I wanted to write a post cautioning against blind faith in doctors and diagnoses and this sounds much better than "Don't Trust Your Doctor." Chances are your doctor may be a kind wonderful person with all your best interests at heart. My mother-in-law, one of the nicest, cheeriest people I know, is a doctor. But you should still be your own advocate when it comes to your health.

What Do I mean by Health Advocate?

Take a proactive approach to all stages of health and illness: prevention, diagnoses, treatment, and again prevention. Take a daily vitamin or two. Eat more fruits and veggies. Exercise. Research your symptoms. Go ahead, WebMD that sucker. Just be sure to write down all your symptoms first, so you have in mind the difference between what you are actually experiencing and 101 more seductive sounding diseases you might have, according to your inner hypochondriac. If you aren't incapacitated by your illness, maybe try a few home remedies first. And if you do make an appointment with your doctor, bullet list symptoms and questions you want to discuss. Mention your relevant family history two or three times. If your Aunt Myrtle recently tested positive for such-and-such, go ahead, ASK if you should also have the test. It never hurts to ask.

Your Doctor is Not God

If you are like me, you have probably been giving your doctor both far too much credit and far too much responsibility.It is only over this past year that I have reexamined my perception of doctors. Typically I only go to the doctor when I believe something is wrong with me. I go the appointment believing that if I list my symptoms and the doctor pokes and prods me, they will unequivocally know what is wrong with me and how to fix it. WRONG. Doctors are human and thereby make mistakes. They are working off two things: their own medical expertise and the context you give them. Even the best of doctors may never have encountered, experienced or researched your condition and the fewer details you give them, the more it is like guesswork.

Why My Doctor Missed My Cancer

One of the greatest conundrums I have met with since my cancer diagnosis is the question of why I was not diagnosed sooner. Obviously, my doctor and I were both at a disadvantage, given that neither of us knew about my family history of thyroid cancer. I have two aunts with thyca, which I found out only after my throat sonogram. However, I did go to my PCP 6 months before my diagnosis, specifically for the purpose of getting tested for thyroid conditions. My mom insisted that a faulty thyroid could be the source of the many health difficulties I was facing. So I had my blood tested for TSH levels (Thyroid Stimulating Hormone) and everything came back normal. 

This is the part that confused the heck out of me. How could my test come back NORMAL? I had severe Hashimoto's Disease, a 3cm malignant tumor, and 9 malignant lymph nodes. I must have been (and certainly was displaying the symptoms of being) severly hypothyroidic at the time I was tested.

Well, the other day, I found the answer. Or at least as close as I am ever going to get. I was browsing the internet for articles on Hashimoto's and found this article on TSH testing. (The article is actually a series of 8 slides, and well worth reading in full. This links to slide #6.) Well, guess what! According to Mary Shomon, founder of Thyroid-Info.com, "Currently, most laboratories in the United States still use the old 0.5 to 5.0 range as their normal reference range for the TSH test."

So what, you ask? "New" guidelines, recommended by the American Association if Clinical Endocrinologists, state that anyone with a TSH level between .3 and 3.0 should be flagged for further testing and treatment. These standards were changed in 2002!!!! But today many doctors either do not know about these guidelines or purposely ignore them. I can't fathom why they would simply ignore them; too many sick people = inconvenient? The article goes on to say that the "AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

As long as these standards are ignored, people experiencing hypo and hyperthyroidism are not being diagnosed because they fall into the old normal range. Like me. My TSH level was a little over 4.0 (I'll have to check my records to find out the exact #.)When my doctor came back and said everything was fine, I just accepted it. I took her word for it. I can't help but wonder how long I would have gone undiagnosed if that dog had not bitten me. And how much further the disease would have metastasized.

 The moral of this story is to question everything. If your doctor says you are fine, check and double check. Don't be shamed into suffering a treatable illness! If you have a family history of thyroid disease or multiple symptoms, follow up your test with these questions:

If your doctor is simply unaware of the changes in TSH standards, you can help all their patients, by getting them the right information! This article tells you what to give your uninformed doctor.

If your doctor simply disagrees with today's TSH standards, find another one!

You can even circumvent a doctor altogether and order your own thyroid blood tests from MyMedLab:

• Order Basic Thyroid Profile: Thyroid/TSH, Free T4 (FT4), Free T3 (FT3), Thyroid Peroxidase Antibody (TPO), Reverse T3 (RT3)
• Order Thyroid Followup Profile: Thyroid/TSH, Free T4, Free T3
• Order Adrenal Stress: 24-hour Saliva Cortisol (4 collections) and DHEA-Sulfate

Doctors Forget What it Means to Be a Patient

Medical Degrees do not require communications courses. They Should. I absolutely believe that our health care system and patient satisfaction would improve if doctors had to take at least one course on communicating with patients. Hospitals and medical programs do, ironically enough, offer classes for patients on How to Talk to Doctors (but not often the other way around.) Too often patients leave an appointment confused or fearful when it could have been prevented. The thing is, you HAVE to be your own advocate, because your doctor EXPECTS you to be. Your doctor expects you to tell them everything. In fact, they probably anticipate hypochondriacs, while getting reticent introverts. If you go to the doctor with a suspicion, fear, question or purpose, but never voice it, how will they know?

Something else you may want to keep in mind is that doctors are motivated by money. We all are. Drug reps visit the same hospitals and doctor's offices weekly. They hold lunches in their break room. They leave behind little "freebie" presents of food, notepads, pens, mugs, samples, etc. If someone gives me something, I feel indebted to them. I'm not going to trade my ethics for a sandwich, and your doctor probably won't either, but when prescribing something for you, how likely are they to ignore the brand names that have treated them so well and now decorate their office or even write out your prescription? And of the dozens of times doctors offered me "free samples" of some new drug, I never once thought that maybe it wasn't such a good idea. That is might have more to do with convenience and ease than my actual health. Free is very seductive. 

Where it starts to cross the ethical line is when doctors start prescribing pills and treatments you DO NOT NEED. Like I said before, I have found countless forums on Hashimoto's Disease, where patients have been prescribed unnecessary thyroidectomies. A few of them questioned their doctor's suggestion, looking for second or third opinions, or seeking alternative treatments, but most do not even believe they have an option. They do not distinguish between doctor's words and doctor's orders.

Are You a Fully Informed Patient?

This is the question you should ask yourself every time you visit a doctor. There are a million and one things that I learned about my body, my thyroid, and thyroid care over the last year that I simply did not know before. The best way to be your own advocate is to be self-educated. I'll give you an example.

In an earlier blog, I talked about unnecessary x-rays, known to be a cause of thyroid cancer when delivered in excess. Today's dental standards recommend that patients receive only one diagnostic dental x-ray per year. Unfortunately, many dentists are indiscriminately prescribing these x-rays every 6 months!

The American Dental Association cautions that patient history, health, age, family history, risk and symptoms should all be considered when using x-rays as a diagnostic: "However, the dentist must weigh the benefits of taking dental radiographs against the risk of exposing a patient to X-rays, the effects of which accumulate from multiple sources over time."

Yet, BOTH my husband and his father were refused dental treatment because they refused to get a dental x-ray at their 6 month checkup. Obviously, something sketchy is going on here. And I suspect it is more fiscally motivated than anything. If you REQUIRE that all your patients undergo expensive albeit needless procedures, you make more money. Period. The end. 

Oh! And here is some fine print on the ADA website, you may not be aware of: you should be wearing a thyroid collar during these dental x-rays!!!! Their MouthHealthy website states: ". . .  a leaded thyroid collar can protect the thyroid from radiation, and should also be used whenever possible. The use of a leaded thyroid collar is recommended for women of childbearing age, pregnant women and children."

Did you know that? I didn't! I have been of childbearing age for sixteen years now and I have never once requested a thyroid collar!!!! Don't be afraid to do your own research. Yes, the internet is a tricky place to navigate. There is a lot of unsubstantiated crap out there, and you have to go through a lot of sources and know what to look for in order to find reliable information. Your doctor might even look at your list of questions and printed WebMD pages and laugh. But think of how much better it is to be an active advocate than a silent sufferer!

Mom's Diagnosis: What is Hashimoto's Disease?

2012 is turning out to be a far better year than 2011. My mom does NOT have cancer!!! Thank you to all who prayed and sent good thoughts our way.

Thyroid disease has attacked at least four women in my family and so far we are all strong survivors. Every single one of my mother's eight brothers and sisters has some kind of thyroid ailment, so it was rather unlikely she would escape scott-free. And she hasn't. She was positive for Hashimoto's Thyroiditis. This blog is dedicated to you, Mom, since you asked me to do research on Hashimoto's.

What is Hashimoto's disease?

I went into signs and symptoms a little in my last blog, but did not really discuss the implications of the disease itself. For all the details, read this article. For summary and observations keep reading.

Look at the model on the left. The thyroid on the trachea is an example of what a nice, normal thyroid should look like. The one to the right of it with the ugly red growth is an example of papillary carcinoma in a nodule. The Swollen pink one is Grave's disease. And that really hideous one? The one that's kind of gray-beige in color and looks more like a dog bone than a butterfly? That's the thyroid of us HD patients.

Like other diseases of the thyroid, Hashimoto's is an autoimmune disease that damages thyroid cells. This disease inhibits thyroid hormone production, causing the patient to experience all the glory of hypothyroidism (fatigue, weight gain, sensitivity to cold, muscle pain, etc. (and in extreme cases a tendency to slice your own head open if you believe the "Post Mortem" episode of House. Maybe avoid doctor TV shows after diagnosis; it tends to lead toward paranoia.)).

Unfortunately, the symptoms of hypothyroidism are easy to ignore. Put on weight? Blame that extra piece of birthday cake. Sensitive to cold? You're cold-blooded. Feeling tired? Who isn't?? Most articles on Hashimoto's have a line or two about how it can take years for symptoms to manifest. But even if they are manifesting, you might not be paying attention! Hardly anyone goes to the doctor for achy legs or constipation. People would think you were a hypochondriac. In some ways our societal attitudes towards illness could really stand to be reexamined.

What are the causes of Hashimoto's Disease? 

The most obvious cause is genetics. Four cases of it in my family (so far). I was diagnosed with HD at the same time as my cancer, but it was rendered moot by my total thyroidectomy. Like thyroid cancer, this is also a disease that mostly targets women. I've also read that it mostly targets middle-aged women, but I question the usefulness of this statement. I dismissed cancer as a possibility because I was (and still am) in my late twenties, which I don't think is considered middle-aged by anyone old enough to have graduated high school. I don't want others to dismiss the possibility of HD for the same reason. Given the strong correlation between Hashimoto's and Thyroid Cancer, it is likely that you can contract HD in your twenties.

Here are the three most interesting causes: pregnancy, too much iodine or other drugs, and radiation exposure. Apparently pregnancy can cause a number of thyroid illnesses due to increased thyroid hormone or hyperthyroidism. Strangely enough, this has a strong correlation with developing HD post-pregnancy.

Here's the one my mom needs to pay attention to: TOO MUCH IODINE. "Other drugs" refers to iodine supplements or drugs containing iodine. I don't know how this happened, but at some point my mom decided that a lack of iodine is the cause of her hypothyroidism. Unfortunately, she has started taking iodine supplements, which I found highly suspect even prior to researching. I have now found several articles that say NOT to take iodine, including this one, which also argues that iodine supplements are harmful for those who already have Hashimoto's.

Most people in America get PLENTY of iodine. Unless you are a complete health-food junkie who never eats anything other than what you have cooked yourself, you are safe. Here's why: most processed foods have iodine and iodized salts in them. In addition to the LONG list of foods with naturally occurring iodine (as iodide) (meats, grains, eggs, beans, dairy, anything from the sea), the U.S. has a salt iodization program (started in the 1920's), whereby iodide is added to all table salt.

According to The Office of Dietary Supplements, taking too much iodine can have the same impact as taking too little:

High intakes of iodine can cause some of the same symptoms as iodine deficiency—including goiter, elevated TSH levels, and hypothyroidism—because excess iodine in susceptible individuals inhibits thyroid hormone synthesis and thereby increases TSH stimulation, which can produce goiter [2,58]. Iodine-induced hyperthyroidism can also result from high iodine intakes, usually when iodine is administered to treat iodine deficiency. Studies have also shown that excessive iodine intakes cause thyroiditis and thyroid papillary cancer [2,58]. Cases of acute iodine poisoning are rare and are usually caused by doses of many grams. Acute poisoning symptoms include burning of the mouth, throat, and stomach; fever; abdominal pain; nausea; vomiting; diarrhea; weak pulse; and coma [2].

And finally, radiation exposure. This mostly refers to anyone who has been exposed to HUGE amounts of radiation, like that of an atomic bomb or nuclear disaster. Radiation is actually naturally occurring and all people produce radiation. Radon is the biggest source of radiation, medical x rays the second, and everything the third. The only one we can do anything about is medical x-rays (and I guess this now includes those taken at airports). I'm not saying to avoid x-rays, but be aware of when they are necessary and when your doctor or dentist is just trying to get a few extra bucks. For instance, getting x-rays every time you get your teeth cleaned is NOT medically necessary. And the thing I learned only AFTER my diagnosis is that you can request a cover for your neck during x-rays, to protect your thyroid!

What are the treatments for Hashimoto's Disease? 

Well, Mom, you don't have to be on any sort of special diet. Although you do have to stop taking those darn iodine pills. Sorry. You'll have to avoid donuts for other reasons. Basically, those with HD are put on a thyroid-replacement supplement such as Synthroid or Levothyroxine. It will take a couple of months to get your hormone level balanced.

Occasionally a thyroidectomy is recommended for those with HD. However, unless you are suffering from severe Hashimoto's and medication alone is not helping your symptoms, a thyroidectomy would be a drastic and possibly unnecessary procedure. Of course I am not a doctor. But I understand from thyroid forums and articles such as this one, that "There are a few voices out there that would recommend that all patients with Hashimoto’s Disease undergo thyroidectomy."

Make sure your doctor isn't one of them! Surgery is not fun. I hope I never have surgery again. The only reasons to undergo a thyroidectomy with Hashimoto's are if the scar tissue has built up around your wind pipe, making it difficult to breath or swallow, or if hard nodules have formed that are indistinguishable from thyroid cancer. Even then, I would get a biopsy first. 

So that's it. My nutshell description of Hashimoto's Disease, which was named after its discoverer, Hakuru Hashimoto. I leave you with this thought: If you discovered a disease, would you really want it to be named after you?

 "In 2012, (your name) Disease swept across North America, killing millions." "We pledge to wipe out (your name) Disease! Beat (your name) before it beats you!"

Hmm. And he looks so nice....