One common misperception is that thyroid cancer is a “good” cancer. (This makes people writing on Thyca angry!) For me, 21 months post-surgury, all appears to be going well but, after reading many posts on the Thyca website and understanding better my own experiences, I want to tell you about what can be like to be a thyroid cancer patient – even one like me who seems, now, to be fortunate.

 

A large percentage of the time, I’d guess around 80% or more, with the removal of part or all of a thyroid, any growth is benign and the treatment simply consists of determining an optimal daily dose of levothyroxine (thyroid hormone). For thyroid cancer, it is not so easy.

 

After a total thyroidectomy (TT), either the cancer patient undergoes withdrawal from levothyroxine until she is treated with radioactive iodine (RAI) or she takes thyroid hormone for a few weeks or months and then undergoes withdrawal and has treatment with RAI. In either case, treatment involves withdrawal from thyroid hormone for a few days, if Thyrogen is used, or a few weeks, if not.[1] Withdrawal leads to hypothyroidism -- too little thyroid hormone for normal functioning. The patient may have extremely low levels of thyroid hormone and is dealing with the symptoms – depression, anxiety, fatigue, moodiness, among others.

 

On the Thyca website, Minix22 writes about the experience of hypothyroidism:

“If you are going hypo you should be required to be isolated from EVERYTHING before your RAI. I am a Cranky, Cranky individual. I should not have driven to the grocery store and went shopping. I got SO mad at this poor woman because she was walking the wrong way on MY side of the aisle. On the way home a guy wouldn't let me merge and the flow of foulness that poured out of my mouth was ridiculous. My husband is currently hiding from me in the other room. …I was sobbing last night cause a seal was about to be eaten on Shark Week, it was a still shot of both the shark and the seal, nothing graphic. Has anyone ever seen the Family Guy Christmas episode where Lois loses her mind because there are no more paper towels. Yeah that's me today.”

 

After RAI, the prescription for thyroid hormone for most thyroid cancer patients is designed to keep TSH (thyroid stimulating hormone) at less than one quarter of the minimum normal range for a few years while the patient is monitored for recurrence of the cancer. Low TSH goes with high levels of thyroid hormone already in the body. So the patient experiences hyperthyroidismtoo much thyroid hormone for normal functioning. This may suggest high energy and weight loss. But such low TSH is “over the top”. For many people it leads to depression, anxiety, fatigue, and stress. It can also lead to a rapid heart rate, palpitations, and atrial fibrillations  (think ambulance, paramedics, emergengy room, cardioversion -- scary stuff).

   

Hyperthyroidism can have the same symptoms as panic attacks and, according to (1), they are often confused.  The authors of (1) write:

 “Panic Disorder: A rapid heartbeat. Nervousness. Trouble breathing. All these symptoms may suggest hyperthyroidism. …It is not uncommon for people with hyperthyroidism to be initially misdiagnosed as having a panic disorder.
Panic disorder is a type of anxiety disorder. People with anxiety are consumed with worry. Their worrying is disproportionate to the actual event…
 People with panic disorder suffer from unexpected and repeated episodes of intense fear….. Symptoms include heart palpitations, shortness of breath, chest pain.  It is easy to see why hyperthyroidism is confused with panic disorder.” (Pages 186-187)

 

Some people on Thyca report severe, long-lasting headaches after RAI. I typically do not get headaches but after RAI I had a few small twinges of headaches, maybe a couple a day, enough to be worrying.  For me, these seem to have gone.  Also, some women report increased PMS.  [Let me mention that women are seven -- maybe as much as ten --times more likely to have thyroid cancer than men. No idea why.]

 

A bit of information that may be useful if you feel at risk for thyroid cancer: It does seem that for many people, symptoms of thyroid dis-function, such as unexplained fatigue, appear before standard blood tests indicate any problem. Indeed, it appears extremely rare for thyroid cancer to be detected by a blood test for TSH. [2] (See Amy Graeber’s story at http://www.thyroidchange.org/we-need-thyroidchange-one-patients-story/ for example.) A new approach is to periodically measure thyroglobulin levels. Thyroids and only thyroids produce thyroglobulin. (No thyroglobulin = no thyroid cells = no cancerous thyroid cells. At least if the thyroid cancer is “well differentiated” and you have no “thyroglobulin antibodies.”) If you are developing thyroid cancer, years before any growth can be detected in palpating the thyroid, changes in thyroglobulin levels may indicate that there is a problem. I leave it to you if you want to look into this further.

References:

 

(1) Friedman, T, C. and W. Wu (2007) The Everything Health Guide to Thyroid Disease, F+W Publications, Inc. Avon MA., USA.

(T.C. Friedman is a physician. W. Wu is, I believe, a professional writer. Corrections welcome!)

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[1] Thyrogen is a substance injected to create high TSH (thyroid stimulating hormone). With thyroid hormone withdrawal, the body produces more TSH, attempting to kick up the level of thyroid hormone. According to writers on Thyca, Thyrogen treatment is not without its own difficulties.
[2] It may be that when a patient sees her physician and some growth is found, the growth is already “large”, maybe over 2 cm, and subsequent TSH testing may yield non-normal results. But the exam came first.