Endocrinologist

Life Lately

Flowers

We all need a break from time-to-time. While taking a day off from our day job may not always be feasible, enjoying a respite from our side-hustle should be. After the weekend, I felt like I needed a break. I had a great post planned to start the week, but when I got home Sunday evening to write it, nothing flowed. A couple of years ago, I would have forced myself to sit and write something…anything…just not to miss one of my scheduled posting days. But, honestly, who wants to read something that doesn’t come from the heart, and has no soul? I value your time and this space too much to publish just for the sake of putting something out there. So, I hope you will excuse Monday’s absence and understand my need for a respite.

If you have been following along on Instagram Stories this week, you may have seen me talking about my recent appointment with my endocrinologist. I appreciate all of the well wishes and prayers that you sent my way on social media, so I feel that it is only appropriate that I share the outcome of the appointment here.

After almost six months of blood work, neck ultrasounds, and treks into New York City for follow-ups, my antithyroglobulin levels remain elevated. Weeks earlier, I had hopes that despite a modest 50 point decrease from my February numbers, we could stay the course and keep up our watchful waiting approach. But after my appointment with my endocrinologist on Monday, a new course of action has been prescribed. Next week, I will have a consultation with a radiation oncologist at a hospital closer to my home, and will likely have an I-131 whole body scan performed, followed by a dose of radioactive iodine. Since my surgery in 2013, I had been resistant to undergoing radioactive iodine treatment, but given the length of time that my numbers have been elevated, and on the recommendation of my endocrinologist, I have decided to pursue this option.

I never imagined that I would be making this decision. For the last four years, my numbers had been steadily trending downward—which is a good sign after surgery. I can still recall the sheer shock that overcame me when I opened the results of my blood work from November 2016 and saw that my antithyroglobulin level was more than double what it should have been. That was the beginning of this setback and I am finally ready to write the ending and close the chapter.

The last six months of waiting, wishing, and wondering have taken a toll on me—even if I have tried to suffer privately. These months have reminded me that despite my best efforts to push unsettling news aside, sometimes you need to tackle things head-on—especially when they pertain to your health.

As always, I appreciate all of your support. It means so much!

What My Thyroid Cancer Diagnosis Taught Me

What My Thyroid Cancer Diagnosis Taught Me

This past weekend, April 2nd, marked the three-year anniversary of my thyroid cancer diagnosis (you can read the full story here). It’s not something I choose to commemorate, but rather something my mind never lets me forget. Like it was yesterday, I still remember the day I got the call to come in to my endocrinologist’s office to receive the news.

I was on my way out the door to have lunch with a friend, when I finally reached the doctor’s office on the phone hoping to get the results of the fine needle aspiration biopsy I underwent a week earlier. Instead of hearing “yes, everything is fine,” I heard instead, “the doctor would like to see you this afternoon.” I knew then that the news was grim.

It has been a lengthy and tortuous journey, one that I never thought would have lasted this long. But I learned after my surgery that it is a never-ending one. You are never cured of cancer; you are merely a survivor. Each morning I’m greeted by the same yellow Synthroid pill. And by the afternoon I’m reminded of the toll my invisible illness takes on my body. This journey has forced me to let go of who I thought I was, and to take control of who I am becoming.

But in doing so I’ve learned a few things about myself. I’ve learned that I’m stronger than that which tried to hurt me. I’ve learned that I’m more resilient than I ever thought I could be. And I learned that I will never stop advocating for myself and fighting the good fight — because the fight is worth it.

A terrible diagnosis can put life in perspective for you in a way that you might never know, even if you lived a hundred years. I feel that I am wiser than my young years should allow, yet older than my young years know.

Thyroid cancer has taught me patience, compassion, and understanding — not just for others, but for myself.

P.S. For those of you who are curious, the appointment with my new endocrinologist whom I saw last month went well. She agreed to keep me on the same dose of Synthroid that I’m currently taking, and seems to be a doctor who will listen to me and that I can work with. I will see her again in August for a neck ultrasound and follow-up. Thank you for all of your well wishes!

The Doctor Will See You Now…

The doctor will see you now

Three years after my thyroid surgery, the struggle to find a good endocrinologist is real. If you are a fellow thyroid patient, perhaps you can relate. The first time I heard the word endocrinologist I had no idea what kind of doctor they were, or what they treated. No one in my family had ever had a thyroid problem, so there was never a need for one. I didn’t have any friends who went to one either, so I asked my primary care doctor for a recommendation. He referred me to someone local, and advised me to make an appointment as soon as possible, as they tend to book up fast.

I started seeing an endocrinologist shortly after a lump on my thyroid was discovered in 2013 — even before I knew it was cancer. He prescribed my first dose of Synthroid, and advised me about the next step — a fine needle aspiration biopsy. At first I was in awe of the time he took with me; answering my questions and listening as my voice shook while I fought back tears. He was compassionate and seemed to understand my reluctance to start on Synthroid before I had an official diagnosis.

After the biopsy, when it came time to deliver the news, he called me into his office rather than tell me over the phone. I knew then and there that it wasn’t good. He kept me in his office for over an hour, speaking slowly and methodically about the surgery, recovery, and what I should expect.

But after my surgery it all changed. My surgeon prescribed my new dose of Synthroid — a slight increase from the dosage I had been on before. And I went for post-surgical follow-ups in New York City, where I had my surgery performed. The need to see my endocrinologist at that time seemed like overkill. I was happily adjusting well to 100 mcg of Synthroid, and my scar was healing nicely.

I returned to my endocrinologist a month after my surgery, and to my surprise found that he wanted to increase my dose even further. Here’s where the confusion began. I had a surgeon who wanted to keep me on the lowest dose that would still treat my symptoms, and an endocrinologist who felt that it needed to be higher. What’s a patient to do? Which doctor do you listen to?

I’ve always believed that my body was the best doctor, and would tell me what it needed. Over the last three years, my dose has been increased and decreased by various people with MD’s, and I’ve never felt much of a difference — for better or worse. I tend to think that the lowest dose that still treats your symptoms is best…at least, for me.

Today I am on my way to see a new endocrinologist, one who came highly recommended, and who will with any luck listen to my concerns.

To be continued…

The March Agenda

The March Agenda

The new month feels a little shorter when you sleep through the first week of it. I’m finally starting to feel like myself again after losing the battle to cold-maggedon (thank you Sudafed and Robitussin!). Today will be the first time I get dressed and leave the house for longer than a trip to CVS for tissues (sad, I know). I heard something about having two gorgeous days this week that were in the 60’s and 70’s, but it was hard to enjoy them in bed.

Here’s what I have on tap for the remainder of the month:

Try: Something about coming down with a cold has made me want to cook (or maybe it was that it was the only thing I could do without leaving the house?). Whatever the reason, I’ve been trying to figure out a way to make my beloved Fettuccine Alfredo healthier. And I think I found it. I’m not a huge fan of avocados (something about their mushy consistency turns me off), but I can’t deny the health benefits that their green goodness offers. With that in mind, I’d like to make an avocado cream sauce for my fettuccine. And in case you think all the Sudafed has affected my head, check out these recipes here and here.

See: The appointment I made many months back with a new endocrinologist is almost here. I’m looking forward to meeting this doctor who has come highly recommended, and I’m hopeful she will be able to help me feel more energetic.

Go: I’m really excited to be going to Philadelphia this month. It’s going to be a quick trip, but it will be nice to get away and explore a new City. I’m planning on touring the Eastern State Penitentiary, a 186-year old abandoned prison that I first learned about on this blog. Apologies if that doesn’t sound like your version of a good time, but this political science/criminology major always enjoys learning about correctional institutions — especially abandoned ones (remember my post about Alcatraz?). But I’m open to suggestions on other things to see and do while I’m in town. Feel free to leave your favorite places in the comments below!

Do: There’s always something fun to do in New York City, and thanks to Elana at Elana Lyn, I’ve added a visit to The Butterfly Conservatory at the American Museum of Natural History and the Sex and the City Tavern Tour to my itinerary this month.

What’s on your agenda this month?

Losing My Butterfly

Losing My Butterfly

The thyroid is a butterfly-shaped gland that sits at the base of the neck. Ironically, Vanessa, in Greek, means butterfly.

Two years ago yesterday, on April 2, 2013, I was diagnosed with thyroid cancer and lost my butterfly. I remember the day so vividly, yet not at all. I was going to meet a friend whom I used to work with for a late lunch. I hadn’t received my biopsy results yet and I was getting anxious. It had been over a week and all I could get from the lab was a message to call my doctor. I called my endocrinologists’ office that morning and they said they would check for my results. When I didn’t hear anything later that day, I called again. The receptionist told me that the doctor had an appointment available at 3:15 p.m. and he would review the results with me. I knew instantly that the news would not be good. I called my friend and canceled our plans.

I still remember hearing the words from my endocrinologist’s mouth as he quietly whispered that I had papillary thyroid carcinoma. At first it didn’t register. I didn’t hear the carcinoma part, and quickly thought to myself, “Well, at least I don’t have thyroid cancer.” I may have even cracked a smile. I can’t remember the exact details after hearing the diagnosis.

My endocrinologist sat patiently in his chair waiting for my reaction. He spoke softly for what seemed like an eternity, but in fact was a little over an hour. It was probably the longest amount of time I had sat with a doctor as a patient. Weeks earlier he had told me I would need to be on Synthroid for the rest of my life due to an under-active thyroid. I tried hard to fight back tears. He noticed, and offered to do another blood test to be certain. I was temporarily at ease. Now that that was no longer an option I couldn’t even bring myself to cry.

I sat motionless on the examination table as he gave me all of my options, daydreaming about more pleasant things. Occasionally, my thoughts drifted to questions: Whom would I call to break the news to first? How would I tell my grandmother?

Then I focused. We talked about a partial thyroidectomy, but a total thyroidectomy was more advisable. He provided me with a list of surgeons in the area and in New York City. I didn’t know where I wanted to have surgery or which surgeon to see. His parting words to me were “not to make a research project out of this.” I had no clue what that really meant.

Fast forward two years and I live with an invisible illness. Thyroid-less and cancer-less, I depend on my daily Synthroid to get me through the day. When people learn I had thyroid cancer they tell me how great I look. I appreciate the compliment, but nobody knows how I really feel. Despite 10 hours of sleep on most nights (12, if it’s a weekend), I awake feeling like a zombie. No amount of coffee can counteract the grogginess, nor can a higher Synthroid dose that should technically give me more energy. There are many days where I wish I could implement nap time in my daily routine. Still, I am grateful that that is my worst symptom.

If I could offer advice to other newly diagnosed thyroid patients, it would be this:

1. Do your research: Find a good endocrinologist who will listen to you. This doctor will be your most important resource, and likely your doctor for life. Make sure you feel comfortable talking to him or her, and don’t be afraid to disagree if something doesn’t sound right. There are plenty of endocrinologists, so if one doctor is not a good fit, find another.

On the research front — read about thyroid cancer, undergoing a thyroidectomy, Synthroid and what to expect after surgery. The Thyroid Cancer Survivors’ Association and ThyroidChange (of which I am a supporter) are both valuable resources.

2. Ask questions: Just because your doctor went to medical school, it doesn’t mean he or she is always right. You know your body better than anyone, so always have your best interest at heart.

3. Utilize support groups: When I was first diagnosed I heard over and over that thyroid cancer was a “good” cancer or that if I “had” to get cancer, thyroid cancer was the one to get. I understand that people were trying to be supportive, but in 2015, approximately 1,950 people will die from thyroid cancer. I doubt they would agree that it is a “good” cancer. Support groups can be a helpful resource, and you can interact with people who are going, or have been through, a similar diagnosis.

4. Trust your gut: Here is where that “research project” line comes in to play. I did a ton of research — and I mean a ton! I saw four surgeons by the time I had concluded my “research” phase. Sure, it might have been overkill, but that is what I needed to feel confident in my decision to move forward.

5. Take time for yourself: Remember to breathe! It can be overwhelming going through a diagnosis like this, and hard not to get completely absorbed. Make time to see friends, go for a walk, or take a trip. It will help to clear your mind and you will make better decisions when you’ve allowed yourself some distance.

Supporting ThyroidChange

ThyroidChange

{Image Courtesy of ThyroidChange}

In observance of Thyroid Awareness Month, I am pleased to introduce and support ThyroidChange, a nonprofit organization, which began in 2012 by a thyroid patient looking for answers and options amongst the medical community. As a thyroid patient for about two years now I’ve learned firsthand that you must advocate for yourself. You may trust your doctor, but as a patient, you know your body best. If something doesn’t feel right, you must speak up.

Ever since being diagnosed with subclinal hypothyroidism in 2013, and thyroid cancer shortly thereafter, I have spent the better part of two years educating myself on all things related to thyroid health. Looking back on it now, I was always fatigued and lethargic, yet never had any thyroid labs run. Even my diagnosis in 2013 was a fluke. I had gone to my gynecologist for my annual exam, with no particular symptoms, and happened to ask for blood work to be done. He took the extra few minutes to perform a neck check, and discovered a nodule on the right lobe of my thyroid.

Since then, I’ve undergone a thyroidectomy and have resigned myself to living the rest of my life on Synthroid. Through my blog and social media, I have met amazing thyroid advocates on Twitter who work tirelessly to spread knowledge to other undiagnosed and newly diagnosed thyroid patients. For them and their efforts, I am most grateful.

Recently I had the opportunity to learn more about ThyroidChange and their physician-patient centered approach. Their goals are simple and straightforward — to improve the lives of thyroid patients by providing access to information, and offering better testing and treatment options. Unfortunately, many endocrinologists rely solely on the numbers, and they base dosage decisions around where the patients’ Thyroid Stimulating Hormone (TSH) levels fall — instead of how the patient feels on a certain dose, or how they might see an improvement with a different form of thyroid replacement.

The primary mission of ThyroidChange is to create a standard of treatment for all thyroid patients, which includes a full thyroid panel (Free T3, Reverse T3, Free T4, TSH, and thyroid antibodies). ThyroidChange would like Free T3 and Free T4 values to play a greater role in the treatment process, while putting less emphasis on the TSH values, and advocates for more thyroid hormone replacement options to be available. This approach I wholeheartedly support, after my dosage was constantly being changed, irrespective of how I told my doctor I was feeling. His answer was always that my TSH levels were not quite low enough and my Synthroid dose needed to be increased. Despite my resistance, my dosage has been increased three times since my surgery, yet I detect no improvement in my energy levels. Doctors should look at the whole spectrum of thyroid indicators and take into consideration patients’ concerns and their overall condition. Offering more thyroid replacement options and allowing a patient to switch medicines more easily will enhance the relationship between patients and their endocrinologists.

ThyroidChange has created a petition entitled Endocrinologists: Patients with Thyroid Disfunction Demand Better Care, which to date has 28,520 supporters. (As an aside, within 24 hours of its introduction, it had already received over 200 signatures!) The thyroid community is clearly frustrated with the current status quo and wants change that will improve the lives of those living with a thyroid condition. It is a lifelong battle and the only hope for improvement is with daily medicine (in most cases) and the care of an endocrinologist. Only when the doctor-patient relationship is improved will patients see noticeable changes in their treatment — and a significant improvement in their health.

I urge anyone seeking information on general thyroid health, tests, and treatment to visit ThyroidChange and sign the petition. I am proud to support this worthy organization that has done so much to improve the lives of thyroid patients all around the world.

A Personal Note…Update

A Personal Note...Update

Thanks again to everyone who commented on the blog and sent emails wishing my grandmother well before surgery.

She underwent a mastectomy last Tuesday and was released from the hospital on Wednesday. The last few days she has been resting and feeling better each day. On Thursday we will see her surgeon for a post-operative appointment and get the pathology results. I am grateful to the competent and professional doctors and nurses at Stony Brook Hospital who cared for my grandmother, and of course to her wonderful surgeon, a breast cancer specialist, who performed the operation.

This will be another hectic week as I prepare to return to work and see my endocrinologist for a follow-up thyroid appointment on Tuesday — but not to worry, posts will be up as usual.

Happy Monday!

Thyroid Thursday

Thyroid Cancer - Get a Neck Check

Image Courtesy of ThyCa

Can you believe this is the last full week of September? It is also the last week of Thyroid Cancer Awareness Month! I’m glad there is a month devoted to the ninth most common cancer (according to ThyCa, 62,980 people in the United States will be diagnosed in 2014)- but awareness should take place every day. It’s important to know the signs of a thyroid problem and have your neck checked regularly. Symptoms include a lump or fullness in the neck, difficulty breathing or swallowing, or changes in your voice. While most thyroid nodules are benign, your doctor should check them.

I am forever indebted to my doctor who took the extra time and performed a neck check. Had it not been for his thoroughness, I don’t know when I would have known about my thyroid cancer. I also must stress the importance of finding a good endocrinologist, one who will listen to you and answer your questions thoughtfully.

If you know someone battling thyroid cancer, offer to bring them food, make a meal for them, or just go and visit with them. Although they may look fine, thyroid cancer, like other cancers, leaves an emotional scar.

For further information, please visit the Thyroid Cancer Survivors’ Association (www.thyca.org).

Stay strong thyroid warriors!

Thyroid Thursday

Synthroid 112

Can you believe we are halfway through September and Thyroid Cancer Awareness Month? While awareness should take place every day, I hope all the articles, photos, and tweets I’ve shared have inspired you to get your neck checked and learn more about thyroid cancer (the ninth most common cancer in the United States according to thyca.org).

I wrote a post to celebrate my one-year thyroidversary back in June 2014 (you can read it here). Now that I am past the one-year mark, I thought I would share what I have learned going through a cancer diagnosis.

I was very fortunate that my cancer was found early and from the start I had a good team of doctors. I would advise anyone who has been diagnosed with cancer to get a second opinion before making any decisions. After I was diagnosed and had a consultation with an endocrinologist, I saw three surgeons. With each appointment I learned more about my diagnosis, asked questions related to the surgery and post-operative care, and took notes on how they treated me as a patient. When I finally decided to have surgery at Weill Cornell Medical College (after almost two months of research), I knew I made the right choice. I felt confident in my surgeon and the hospital. He explained the procedure at length to me and even gave me his email address in case I had any questions after the consultation.

My endocrinologist warned me, “Don’t turn your diagnosis into a ‘research project.'” Nevertheless, doing your homework and making sure you find the right doctor whom you feel comfortable with is critical. Also, being mentally and physically prepared to undergo surgery is important. I had initially scheduled my surgery for May 2013, but then postponed it by a month. My diagnosis so frightened me that I needed more time to process it all. By the time I went for my thyroidectomy in June, I felt informed and confident.

While the surgery and recovery went well, I did struggle at first with my Synthroid dose. I was put on 88 mcg before my surgery because I was also diagnosed with an underactive thyroid. After a few weeks on Synthroid, I began to feel sluggish, weak, and have stomach pain. I told my endocrinologist about my symptoms. To my surprise, he was not sympathetic and brusquely told me to see my primary care doctor.

After the operation, my surgeon increased my dose to 100 mcg to account for the fact that I no longer had any thyroid hormone. Weeks after my surgery my thyroid stimulating hormone (TSH) levels were tested and my surgeon told me that everything looked good and that I should continue on the same dose. Later that same day, though, my endocrinologist called and said my levels were still too high and he wanted to increase my dose to 112 mcg. You can imagine my surprise and confusion after the call! For most of the year following my surgery I saw my surgeon regularly, seldom seeing my endocrinologist, and remained on 100 mcg of Synthroid. It wasn’t until April 2014 that I saw my endocrinologist, and again he advised me to increase my Synthroid dose to 112 mcg. After a tense conversation, I reluctantly conceded, more because I needed a new script than that I actually agreed with him. He explained that the higher dose was necessary to prevent the cancer from returning, but there were risks to being on a higher dose when it wasn’t required due to high TSH levels. I left his office that day upset, confused, and reluctant to take the higher dose of Synthroid.

As a rule, I have always preferred to take the least amount of medicine possible. While I understood why the endocrinologist believed a higher dose was necessary, the contrast between his and the surgeon’s interpretations of my blood results was frustrating. The former seems to be more concerned with surpressing the TSH to almost non-existent levels and less with how the patient feels on a certain dose. I haven’t noticed much difference in terms of increased energy levels on 112 mcg, and I must be candid: I prefer to be on a lower dose.

In the end, after speaking with many thyroid cancer survivors, I have learned the importance of finding the right endocrinologist–one who will listen to your concerns and frustrations and not base their recommendations solely on numbers– because as a survivor you will be dependent on them for prescriptions, and even more importantly, on their knowledge and guidance for future care.