3 posts tagged “Thyroid Awareness Month”

“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

Posted January 29th, 2016 by

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members.

Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.”

Tell us a little about yourself. What are your hobbies and passions?

I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband.

When you were diagnosed, what went through your mind?

Barbara took this picture on her trip to Holland.

My diagnosis was a little odd.

I went in for a regular Pap appointment and the doctor felt my glands and made an offhand remark, “Oh, you’ve had that checked,” and then continued on. I sat there stunned. I did not like this doctor so I didn’t say anything about it. When I got home I immediately called and scheduled a physical. It was during the physical that they examined the lump on my thyroid. They sent me to an endocrinologist who did a biopsy after joking that he could do it blindfolded. I did not like that doctor either. The results were abnormal but inconclusive. I was told that I needed surgery and that there was only a 20% chance it was cancer and a 20% chance that I would need thyroid medication.

I thought that I might die. I know that was an overreaction but I was scared.

I didn’t get a real diagnosis until after the surgery.  It was cancer, and within two weeks I knew I needed medication even though I still have half my thyroid.

How has your life changed after having thyroid surgery?  

I have become intimately familiar with exhaustion. I was told by doctors and friends and co-workers that managing my thyroid would be no big deal. Only one person gave me a real glimpse of what was to come. That was a professor that had a friend with extreme exhaustion due to his thyroid issues.

I have been tired, exhausted, angry, unreasonable, irrational and a nightmare to live with. The worst was the first year but it took many years before I started to feel close to normal again. The surgery was nothing compared to my symptoms afterwards especially since I didn’t have any to start with. They have no idea why I got cancer. There is some in my family and I have been told that there can be a link with melanoma, which does run in the family. That is something I am still learning about.

I can empathize much more with people dealing with mental illness because looking back it seems like I was crazy. I know I was not in my right mind.

Barbara took this picture on a trip to Holland.

I have learned to be very sensitive to my emotions.  If I realize that I am not feeling “right,” then I can take precautions. If it is a really bad day I may call in sick to work because it can affect my job performance. I seem to be more prone to migraines when I am off. It can be really hard to tell if I am hypo- or hyper- from my medication. The symptoms can overlap or be very similar. I have charted all of my lab results and read a lot of different research so that I can be my own best advocate. Learning more and paying close attention along with an alarm set for my medication helps a lot. I never ever miss a dose. Depending on my blood work I may adjust my dose by half a pill a week or every other week. I have found that I am very sensitive to dosages. I miss Levothroid — it worked better than the Levothroxine I take now.

In honor of Thyroid Awareness Month, what’s one thing you think people should know about living with and recovering from thyroid cancer?

There are many different ways each person may be affected. If they push you away, please be patient. I did not realize how horrible I was until I came out of the fog. I didn’t feel that sick at the time but looking back, wow. There is help; once I switched doctors the new one listened a lot closer to what I told him and he believed me. Fight for your right to feel normal again. I had no idea that my thyroid controls so much.

In your profile, you mention your doctor: “He doesn’t seem to really understand what I am feeling because by now I should be ‘fine.’” How have you dealt with this? Do you have any advice for someone in a similar situation?

Doctors have been frustrating at times. I have tried to restate things in a different way and if that didn’t work I would request a different doctor. I have also seen a chiropractor that does muscle testing and she helped me a lot even though it seemed an odd way to see what could help. We found that a vitamin and mineral supplements helps me a lot.  We went through a few other supplements to get here but I felt better with each step and she was excited to see me improve. She started with a supplement that helped my liver. I would think that everyone may be a little different. She said that I improved about twice as fast as she thought I would so we were both very happy with the results. Now I have the energy to go out and take some photos.

What has it been like connecting with other PatientsLikeMe members with your condition?

It has been very helpful to see what other people try and what they feel works for them.  It has given me hope. I love the thought of all of our data helping others so they will have a faster, easier time with whatever their ailment is. If I don’t feel well I can see that someone else is doing much worse so I better be happy for what I do have.

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Write a Love/Hate Letter to Your Thyroid for Thyroid Awareness Month

Posted January 7th, 2013 by

Do you love your thyroid?  Do you hate it?  Or more importantly, do you even know where it is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

Dear Thyroid

In honor of Thyroid Awareness Month this January, we wanted to spotlight Dear Thyroid, a website that encourages literary self-expression from thyroid patients, including patients with lesser known thyroid conditions such as thyroid cancer, Hashimoto’s thyroiditis and hyperthyroidism.  The slogan is “Healing Our Thyroids One Letter at a Time, As Many as It Takes,” and each love/hate letter is displayed with retro and pinup artwork as “subversive” yet “iconic images of perfect health and beauty.”  Got a few things you’d like to say to your thyroid?  Write them down today and experience how good it feels to let it all out!  (Read Dear Thyroid’s submission details.)

Another source of relief comes from finding people who truly understand what you’re going through – namely, other patients like you.  Connect with the more than 3,500 patients with hypothyroidism at PatientsLikeMe today and see how they are managing their condition.  How many of them are taking Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine?  And how do they rate the effectiveness, side effects, cost and more?  Dig into our in-depth treatment evaluations to learn from real-world patient experiences with this common hypothyroidism medication.


What Do You Know About Thyroid Disease?

Posted January 11th, 2012 by

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

"I Am the Face of Thyroid Disease" Is the Theme of a Campaign Launched to Support Thyroid Awareness Month (Click Through to See Patient Videos and Stories)

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Some of the Commonly Reported Treatments for Hypothyroidism at PatientsLikeMe

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.