I get tons of emails from thyroid cancer (and other thyroid patients) wondering how to best handle starting new thyroid medication or changing doses of thyroid medication. These helpful hints are based on my own experiences as well as those of other thyroid cancer patients I met on the road while writing my book Everything Changes.
Remember, I’m not a doc and this is non-medical information. What worked for me also might not work for you. This isn’t a doctrine or manifesto. These are just some ideas for you to consider. They are presented in three sections:
1. Communicate with your doc about your levels
2. Get clear with yourself
3. Create a self-care plan
PART I: COMMUNICATE WITH YOUR DOC ABOUT YOUR LEVELS
1. Know what your doctor’s goals are.
Have a focused conversation with your doctor in which you understand what their ideal goals are for your TSH levels, why this is their target number, and what they base this decision upon.
Patients with different kinds of thyroid disease have different target goals for their hormone levels. Traditionally, thyroid cancer patients have been kept extremely hyperthyroid as a long-term treatment goal (in other words very low TSH). The thinking is that the lower the TSH, the less stimulation of thyroid activity, and hopefully the less opportunity for renegade cancerous thyroid tissue to grow. How hyper a patient should be might vary from doctor to doctor. Some endocrinologists on the forefront of thyroid cancer research are beginning to toy with the idea that maybe patients need to be kept hyperthyroid but not uncomfortably so.
Regardless of where your doctor’s approach falls on the spectrum of how low to go with your TSH, make sure you understand what their goal is so you are not banging your head against the wall with miscommunication about your lab numbers and symptoms.
2. Aim for a rational conversation with your doc about your symptoms.
Thyroid cancer patients are hands down the most emotional cancer patients I meet. Some of us are weepy, exhausted, amp-ed up, and anxious due to our hormone levels. These states of mind can make for doctor appointment train wrecks. Here’s a remedy:
When you are calm and focused type a list of your symptoms, followed by the questions: a.) Are these symptoms normal for someone with my TSH level? b.) Would changing my medication have any baring on the symptoms? c.) Would you recommend changing my med level - why or why not? Hand this symptoms and questions list to your doctor at the top of your appointment. Also, if you tend to get emotional when talking about your symptoms, consider having a friend accompany you and do the talking.
Here’s what not to do: Do not go into your endocrinology appointments weeping about your symptoms, asking your doc to take them away, or demanding your medication be changed. I’ve learned that none of these methods work too well.
PART II: GET CLEAR WITH YOURSELF
3. Make peace with your situation.
Sometimes your doctor is not going to be able to adjust your meds in a way that will make you feel better. That sucks. It can be a very slow process accepting this reality. But once you accept the limitations of what your doctor can do, you can begin to explore practical ways in which you can help yourself. (Wow, that sounds so hokey, but hey – it’s true.)
I’m not saying love your disease, I’m not even telling you to be positive. I’m just saying be real about the fact that you have some symptoms that might have to accompany the medication you take and you might have to get crafty about how to manage them in your life.
4. Give yourself time.
Hormonal thyroid states can sometimes make life seem so extremely intense. You might feel that what you are experiencing now is going to last forever. And yes, it may take a while for things to simmer down. So put a bracket, a set of parenthesis, around this time in your life. This is your time to adjust to your thyroid medication, to your new hormonal state of mind, to your disease. During this time you are going to have to find new ways to tame your mind, to preserve your energy, to think clearly, to have a somewhat normal feeling body. This will not happen in a week, it might not happen in a month, and it could take more than a year until you begin to feel like yourself. And you might not feel like your old self. You might feel like a different, new self.
PART III: CREATE A SELF-CARE PLAN
5. Identify your problems and brainstorm solutions.
Make a clear list about the things that are hard for you since you began your medication. When I began thyroid medication I felt extreme anxiety, brain fog and forgetfulness, and like my energy was crap. I wasn’t tired so much as wired. I had hair loss, hot flashes, and weight loss.
I have not erased the problems, but I have found ways to live my life comfortably despite these problems. I made the following changes over the course of months, some even years. They have made a huge difference in how I feel. They are night and day from how I used to live my life. I hope these ideas jumpstart you into thinking about crafty ways you can respond to your own symptoms. Remember this is trial and error.
1. Reduce your drama. I’ve ended energy sucking friendships. I limit my contact with friend and family who are a handful.
2. Trim down your calendar. I say ‘no’ more often than I say ‘yes’. I do ¼ the amount of socializing I used to.
3. Spend more alone time relaxing. I give my brain a rest by settling into long fiction books, zoning out on design blogs, and watching Law and Order.
4. Improve your mental self-esteem. My brain fog changed my identity. It made me feel stupid. It took a few years for me to turn this situation around. Read more about this in my New York Times post ‘When Cancer Muddles The Mind‘.
5. Declutter your physical space. If you have brain fog, come up with systems for streamlining and organizing your keys, you bag, your to-do lists, and for managing important information.
6. Sleep more restfully. My mind was going so fast I couldn’t get deep, restful sleep. There are tons of tricks out there for this. I eventually visited my general practitioner and got a prescription for xanax. While addictive for some, it has not been for me, and works like a charm.
7. Address anxiety. If you have anxiety, get real about taming it so it does not take control of your life. There are so many approaches for this including exercise, talk therapy, taking anti-anxiety medication.
8. Anticipate and respond to physical changes. Physical changes are so varied. Here’s how I’ve responded to some of mine:
I’ve sweat a lot more since starting thyroid medication. I now own cotton sweaters instead of wool, dress in layers, and do a ton more wash, which means I budget a lot more time to do laundry.
My hair has thinned. I’ve experimented with shampoos and haircuts. I’ve also started to wear more lipstick so if I’m feeling crappy about my hair when I look in the mirror, I see some other sparkle that makes me feel good about my appearance.
I’ve lost a ton of weight. I look scary skinny sometimes. I consciously try to eat more food, which sometimes helps and sometimes does not. I’ve started wearing more high heels because I figure if I’m doing to look like a waif I might as well try to look like a sexy one!
Please comment below to share your challenges and successes with adjusting to thyroid medications. I’d love to hear from you. (I’m not big on promoting natural thyroid hormone - plenty of other sites for that - so please no comments on it here.)
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
