Tag Archive for: thyroid

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Is Waldenström macroglobulinemia (WM) causing fatigue? Dr. Jorge Castillo shares why WM patients should share any symptoms and side effects they experience with their healthcare team.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

Related Programs:

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches

What Is the Patient’s Role in WM Treatment Decisions?

What Is the Patient’s Role in WM Treatment Decisions?

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions

Factors That Affect Waldenström Macroglobulinemia Treatment Decisions



Fatigue seems to be very common among Waldenstrom’s patients. Here’s a question that we received before the program. Kasey asks, “Why do I feel so tired all the time? Is there anything that can be done about it?

Dr. Castillo:               

That’s a great question, and as I said before and basically kind of summarizing what I put together, I mean, there are many patients why a symptom with Waldenstrom’s could be fatigued. One of them is they could be anemic. The other one, they could have some hyperviscosity symptoms causing some fatigue, maybe some inflammation in the body because of the Waldenstrom’s, but maybe there are other reasons why patients can be fatigued.

And if you go out there in the streets and you start asking people, “Are you tired?” 80 percent of Americans are going to be tired. I’m not trying to minimize the symptoms of the patients. What I’m trying to say is we need to be very careful at understanding what the relation of the fatigue is with the disease. We need to be convinced that there is a relation there.

If that happened in my clinic – for example, a patient comes to see me, and they are fatigued; their hemoglobin is 14, which is normal; their IgM is about 1,000, which is not supposed to cause hyperviscosity. So, I do not know really in that context if the Waldenstrom’s is driving the fatigue or not.


Or if it’s something else.

Dr. Castillo:               

Exactly. So, we need to make sure that the patient doesn’t have any iron deficiency, that the patient doesn’t have any thyroid problems, that the testosterone problems are okay, that there’s no sleep disturbances, that there’s no depression. So, there’s so many different other things that we need to make sure are not there before we mount into that. Because if someone is fatigued with a hemoglobin of 8, which is very low, with my treatments, if I make that 8 14, I know the fatigue is going to get better. But if the patient is fatigued with a hemoglobin of 14, which I am not going to improve with my treatments, then how confident do I feel that I’m going to improve the patient’s quality of life with a potentially dangerous treatment?

So, we talked about already secondary leukemias, neuropathy, other problems that the patient can have with the treatments or because of the treatments.

So, we need to balance that out and understand that the potential benefit has to be higher than the potential risk, and that’s why the personalization comes into play. So, fatigue is a big issue, and we try to take a very systematic approach about that, you know, ruling out other conditions, making sure that we understand its relation with the disease before recommending treatment just for fatigue.


Yeah. This is one side effect that is so important for patients to share with their healthcare team, right?

Dr. Castillo:               

Oh, absolutely.


So that their healthcare team can know how to treat them.

Dr. Castillo:               

That’s right. And again, there are so many interventions that are not medications that could be done in these type of situations, right? Meditation, mindfulness. There are so many other approaches to try to help in these type of situations, changing a little bit sometimes the perspective, trying to be a little bit more on the positive thinking, right?

So, there are so many different ways outside of pharmacological approaches that we can use to try to improve our patients’ quality of life.


Yeah. Knowing that one has an incurable disease can be very stressful, right? Knowing that you have to live with this.

Dr. Castillo:               

That’s absolutely correct, and again, what I’ve seen happening in some of my patients is every little thing that happens to them, they do not know if it’s because of the disease or not.


Oh, yeah.

Dr. Castillo:               

“So, I have a twitch there. Oh, it’s due to Waldenstrom’s. Do I need to be treated because of that twitch?” And that, I understand it. Well, I try to understand it. I’m not in that same situation, so I cannot understand it completely. But I try to understand how if you don’t trust your body anymore, right? I mean, you have a disease, and you don’t trust your body anymore, then how you trust all these little symptoms here and there?

So, in my conversations with my patients, I discuss these things openly and that you’re going to have a lot of different symptoms here and there. Most of them probably are not going to be related to the disease, but if some of them are concerning enough to you in terms of your activities, in terms of eating, drinking, sleeping, social life, sexual life, you know, working life, then let me know, and then we will be happy to investigate those because anything can happen to anybody.

So, you can have other problems. Waldenstrom’s doesn’t protect you from anything, so, and it’s always important to discuss this with patients and pay attention to the patients, not dismiss their symptoms, think about them with them, talk about them with the patients to try to understand how these are affecting them.

Thyroid Awareness: January and Beyond

This post was originally published by Sharon O’Day on MedicareGuide on January 21, 2021 here.

Most people with thyroid disease don’t even know they have it. More than one in eight Americans will develop a thyroid condition during their lifetime, but up to 60% are unaware of it.1

That’s because the symptoms — fatigue, depression, sleep disturbances and weight loss or gain, among others — could just as well be signs of other medical conditions and life stages.

That’s what makes Thyroid Awareness Month, which falls in January each year, so important. If both people and doctors think of thyroid problems more often, cases can be diagnosed earlier and the disease can be managed sooner.

What Is Thyroid Disease?

Thyroid disease is a medical condition that keeps your thyroid from producing the right amount of the hormones needed by your body’s systems to function. This small, butterfly-shaped gland at the lower front of your neck affects how well every cell, tissue and organ in your body works.

a close up of a christmas tree

Photo by Torten Dettlaff

The cause of thyroid disease is unknown, but it can often be managed with medical attention. But first it has to be diagnosed through blood tests, imaging (scans or ultrasounds) and physical exams.

With hypothyroidism, the gland doesn’t make enough thyroid hormone and you can feel tired, gain weight and feel the cold more intensely. 
On the flip side, when the gland produces too much hormone you can develop hyperthyroidism, leaving you feeling tired and nervous. You may also lose weight and find your heartbeat is rapid.

Graves’ disease is a specific form of hyperthyroidism, an autoimmune genetic disorder that affects about 1% of the U.S. population.2

Women are five to eight times more likely than men to be among the estimated 20 million Americans with a thyroid condition.3

Different types of benign (non-cancerous) growths and malignant (cancerous) tumors can develop in the thyroid gland. Thyroid nodules, for example, are common and usually benign; these lumps can be solid or filled with fluid. You should still seek immediate medical attention because, while most growths don’t turn out to be cancer, some do.4

What About Thyroid Cancer?

When the cells in the thyroid grow out of control, the disease can become thyroid cancer. In 2017, the latest year for Centers for Disease Control statistics, more than 33,000 women and nearly 12,000 men were diagnosed with thyroid cancer.5

Thyroid cancer has more specific symptoms than other forms of thyroid disease: a lump or swelling on the side of the neck, trouble or pain breathing or swallowing and a hoarse voice.6

What Are the Trends in Thyroid Cancer?

The yearly number of new thyroid cancer cases in the U.S. has grown steadily, from 18,000 in 1999 to a peak of 49,500 in 2015, with a small drop-off after that.7

In 2017, for every 100,000 Americans, 14 new thyroid cancer cases were reported and one person died.8

Scientists aren’t sure what causes thyroid cancer. But the risk factors include:9

Gender and Race

The chances of a thyroid cancer diagnosis are nearly three times higher for women than for men.10

But if you’re Black or American Indian/Alaska Native, you have about a 45% lower chance of being diagnosed with thyroid cancer than if you’re white, Asian/Pacific Islander or Hispanic.11

Survival Studies

Three factors influence the five-year survival rate for thyroid cancer patients: gender, age and race.12 

  • Survival rates are higher for women than for men: 98% versus 93.6%.
  • Survival drops as people age, from 99.4% for those under 45 to 86.1% for those over 75.
  • Survival is slightly lower for Blacks compared with whites and people of other races/ethnicities.

For women, thyroid cancer has the highest five-year survival rate of all cancers. For men, only prostate cancer and testicular cancer have higher survival rates.

Regional Glances

Across all ages, genders, races and ethnicities, the rate of new cancers is higher in the extended New England area and some western and midwest states, including Utah, Wyoming, North Dakota and Kansas.13

How You Can Raise Awareness About Thyroid Disease

Thyroid Awareness Month highlights the crucial role the thyroid plays in the ability of major organs to function. It aims for more people to get tested if they have unexplained symptoms like those mentioned above. And it promotes early treatment.

As with any type of cancer, greater awareness leads to earlier detection, which can save lives. A cancer stage is defined by whether cancer cells have been contained within the thyroid or traveled to other parts of the body, which influences your treatment options as well as the odds of recovery.14 

If you want to participate in Thyroid Awareness Month, here are six simple ways to get involved:

  • Do a thyroid neck check. You’ll need a hand-held mirror and a glass of water. Tip your head back, take a sip of water and swallow. Using the mirror as you swallow, watch the lower front of your neck for any bulges or protrusions. If you see any, talk to your physician right away.
  • Encourage friends and family to get tested. Although symptoms are pretty general, if a loved one complains of feeling cold, not sleeping well or having trouble swallowing, ask them to do the at-home neck check and suggest they see their doctor.
  • If you can, donate. Even if thyroid disease hasn’t affected you directly, consider donating to:
  • Share information online and off. ThyCa offers free materials to increase awareness of thyroid issues. Order some today and help spread the word.
  • Share Your Thyroid Story.  Paloma Health developed a video campaign that invites people to share their thyroid story to help raise awareness for thyroid disease symptoms, risk factors and treatment options. According to the organization, when someone submits a story, they’re automatically entered for a chance to win a thyroid support bundle giveaway.
  • Use hashtags to raise awareness on social media. By using these designated hashtags from the ATA and ThyCA, your efforts to raise awareness will be multiplied:
    • #thyroid #hypothyroidism #thyroidhealing #thyroidproblems #thyroiddisease #thyroidhealth #autoimmunedisease #hormones #hyperthyroidism #hypothyroidism #hashimotos #cancer #thyroidcancer #autoimmune #thyroidweightloss #covid #hashimotosdisease #thyroidwarrior #thyroidawareness #thyroidectomy #hypothyroid

Next Steps

January is Thyroid Awareness Month and September is Thyroid Cancer Awareness Month. But your efforts to raise awareness are needed year-round because most thyroid disease cases go undetected in their early stages.

Check yourself regularly with the swallow test. It only takes a minute or two. And stay vigilant when friends and family mention unexplained symptoms. If the signs fall in general categories such as fatigue, depression, sleep disturbances and weight loss or gain, encourage them to visit their doctor to have their thyroid checked.

Your efforts to promote Thyroid Awareness Month can help reduce the number of Americans who have a thyroid problem but don’t know and don’t get checked before a very treatable issue becomes much more serious.

  1. American Thyroid Association. “General Information/Press Room.” thyroid.org (accessed December 18, 2020).
  2. General Information/Press Room.”
  3. General Information/Press Room.”
  4. American Cancer Society. “What Is Thyroid Cancer?” cancer.org (accessed December 18, 2020).
  5. Centers for Disease Control and Prevention. “United States Cancer Statistics: Data Visualizations.” gis.cdc.gov (accessed December 18, 2020).
  6. Centers for Disease Control and Prevention. “Thyroid Cancer.” cdc.gov (accessed December 18, 2020).
  7. United States Cancer Statistics: Data Visualizations.”
  8. United States Cancer Statistics: Data Visualizations.”
  9. National Cancer Institute. “Thyroid Cancer Treatment (Adult) (PDQ®)–Patient Version.” cancer.gov (accessed December 18, 2020).
  10. United States Cancer Statistics: Data Visualizations.”
  11. United States Cancer Statistics: Data Visualizations.”
  12. United States Cancer Statistics: Data Visualizations.”
  13. United States Cancer Statistics: Data Visualizations.”
  14. Trends in Thyroid Cancer Incidence and Mortality in the United States, 1974-2013.”

Deceived But Not Defeated

I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.