What is hypothyroidism?This was a question I had from day one of my diagnosis, when terms like hypo, hyper, TSH and RAI were introduced like catch phrases. When your entire physiology is about to change, a Wikipedia definition or list of symptoms proves deficient. Read too many forum fears and complaints and you might start to feel a bit like blind Gloucester.
I will try to describe, thoroughly, how I have experienced hypothyroidism. I was hypothyroidic for a long time before my cancer diagnosis and had no idea I had a thyroid problem. I had Hashimoto's Disease, the most common cause of hypothyroidism in the U.S. for so long that my thryoid had been ravaged by it prior to my thyroidectomy. I had years of fatigue, weight gain, mood swings, sensitivity to cold, muscle aches, depression, etc. I chalked it up to life for a long time. When I finally did seek help from a doctor, six months prior to my cancer diagnosis, I went because my mother begged me to. She said thyroid problems were common in our family and I should get tested. Well, I did, and my test was negative! Six months before they found a 3cm tumor in my neck. Even if your test comes back clean, you may STILL have a thyroid problem.
Remember the beloved Shel Silverstein poem “Sick”? I recited it in third grade. A gash, rash and purple bumps? All the basics of hypothyroidism. It’s like getting beat up by God. Okay, I might be exaggerating slightly, but I’m extremely hypo right now and feeling a tiny bit sorry for myself.
The thyroid is an endocrine gland (a gland that produces hormones and releases them in the bloodstream) that controls just about everything. It controls your body's ability to use energy, make proteins, and react with other hormones. When your thyroid is messed up, it is a big deal.
In simple terms, hypothyroidism is an extremely common thyroid condition in which your thyroid does not make enough thyroid hormone for your body to function normally. It affects 2-6% of women and .2-2.5% of men (the % increases with age). While the definition of hypothyroidism is simple, its symptoms are not. The reason I compare this illness with the "Sick" poem is because the list of symptoms is as unending as the little girl's attempt to get out of school. The symptoms of hypothyroidism are many, vague, and common. Because of this, it is often dismissed, by doctors and society.
Hypothyroidism is real. Recognize the symptoms.One of the biggest problems with thyca awareness is the lack of drama surrounding it. We do not go bald or turn colors or forget who we are. And our society loves drama. Have you ever seen a movie or TV show in which a character had a thyroid problem or was diagnosed with thyroid cancer? Probably not. It just can't hold a candle to breast cancer, lung cancer, heart attacks, Alzheimer's. Don't get me wrong. I am extremely grateful that I do not have these conditions and do not have to face the horrific treatments and symptoms they come with. But thyroid conditions are no less deserving of awareness and treatment.
The symptoms of hypothyroidism sound a lot like the symptoms of life. No one thinks to themselves, “I put on five pounds; I wonder if I have cancer,” or “Man I need a nap; must be my tumor coming back,” or “I probably shouldn’t have yelled at my husband like that; maybe I should get my thyroid checked.”So people ignore them. Doctors ignore them. Patients try new diets or longer nap times or anti-depression medications. And when they don't get better, we blame THEM.
America (or American meritocracy or U.S. patriarchs) decided long ago that everything good depends on PRODUCTIVITY and EFFICIENCY and everything bad stems from being FAT and LAZY. So while we all have a good laugh at Homer Simpson, we certainly don’t want to be him. Then we would be laughed at. So we ignore the extra pounds, the tiredness, the sore throats, the muscle aches, the mood swings and chalk it all up to not being all we could be. But at what point were we supposed to stop and say, “Wait, something is wrong here. It’s not just me, something is wrong with my health”?
I don't know. No one does. Which is part of the problem. Our best step towards diagnosis and treatment is patient awareness. If people know these problems exist, know their family history, and know when their body is acting strangely, they are more likely to seek help.
Even on a lot of thyca support group sites, there seems to be a very fine line drawn between advising people on how to deal with the symptoms and warning them against “blaming it all” on the thyroid. While I do not think the disease or surgery should be a “Get Out of Judgment Free” card, these symptoms are very real, very hard to deal with, and definitely deserving of consideration.
So if you are popping out at parties or feeling unpoopular or know someone who is, this is for you...
The Symptoms of Hypothyroidism(Please keep in mind I have no medical expertise. These are the symptoms as I understand and experience them.)
MIND LEAPINGOn several websites this is described as “memory loss,” forgetfulness,” “depression,” “irritability,” “difficulty concentrating,” etc. I feel like my term, “mind leaping” encompasses all these things. It is not so much that you lose your capacity to think. Instead, it’s a sad trickle-down economizing of the brain. Things that were once easy are hard, things that were once hard, now seem impossible, so the brain disperses its wealth a bit less directly.
This is strongly tied to the complete lack of motivation symptom. Whereas before you might have taken the time to find the right word or look for those glasses or censor yourself before you speak, these filters and skills now seem a superfluous waste of brain energy. Your mind just leaps over them. So you make up words, buy another pair of glasses or walk around blind, and tell your boss, family and friends exactly what you are feeling in that moment. Not good.
This also makes daily tasks like driving not such a good idea. I’ve read a lot of debates on whether to drive or not while hypo. I really don’t believe it is comparable to drunk driving, unless your drive also coincides with naptime. When I had severe Hashimoto’s 3-5pm was “naptime,” which meant if I attempted to drive home between these hours I looked a lot like one of those bobbing, water-drinking, plastic birds. So I had to wait it out to be safe. My commute was about 1-1.5 hours long. As hypo as I am now, that would be extremely dangerous. However, short drives have not been dangerous, just confusing. For instance, I have been going to a friend’s house 7 minutes away for the last 17 years. The other day it took me about 20 minutes because I forgot where I was going, passed it, and couldn’t remember how to get back right away.
Other examples of mind leaping:
• Got lost going home while following another car.
• Experienced a surge of homicidal rage towards a stranger with a “No fat chicks” license plate.
• Wore a shirt inside-out.
• Have said “you know what I mean,” about 1000 times. They never do.
• Frequently find myself in rooms, wondering why I am there.
• Missing: one pair of eyeglasses, two pair of sunglasses, several outfits, multiple dishes, one toothbrush, shampoo and conditioner, a scrabble piece, a scarf, books, Tupperware, the remote, a TV for the remote, and (surprise) socks.
Refers to the laughable and lovable cartoon cat, not the former Pres. Described as “weakness,” “fatigue,” “tiredness,” etc. In my opinion, also inextricably linked with a complete and utter lack of motivation. From a physical standpoint, a lot like having the flu. This is probably the worst and most debilitating part of it all, especially if you are used to being a productive member of society. We have all had those days where waking up is the hardest thing to do (holidays, weekends, illnesses, unwelcome tasks). You are lying there because some godforsaken creature (an alarm clock, a bird, a cat, your husband) has woken you, but you can’t think of a single thing that makes getting out of bed worthwhile. Even with a full bladder or rumbling stomach, you lay there, mentally tabulating the pros and cons of staying in bed forever. Now imagine that that is every day.
I am quite lucky in that I do not have a job to go to right now. If I did, I would most assuredly lose it. If there is not one already, someone should create a thyca website devoted to tips and tricks for getting through a normal workday. On the worst days I have barely managed to get myself to the kitchen (downstairs) for food and to the bathroom (3 feet away). My absolute favorite activities—painting, writing, reading, biking—have all lost their appeal. I have gone a week without checking email (Inbox: 124), a month without checking mail (bills!), and several days without stepping outside (blindness). It took me more than five days to complete this blog. I do not recommend this.
I have found that the best treatment for GS is outdoor exercise, preferably with a friend who is willing to kick you a couple times if you decide to nap in a stranger’s front yard. Actually getting out the door is the hardest part, but I found that once I was actually doing something, a fair amount of the usual desire to do it returned.
ACHY-BREAKY EVERYTHINGAs with all other symptoms here, it is difficult to tell what to attribute to hypo and what was already a problem. For instance, I was in a car accident in June 2008 and have experienced neck pain and major knots in the neck and shoulder area ever since. I have had headaches my entire life, but they tend to get more frequent during specific times in my life (stress-related) and most recently are tied to my neck issues. This is why I was seeing a chiropractor and a neurophysiologist.
However, when I told my neurophysiologist about my thyca diagnosis, he told me he would hold off on recommending any further treatments until I’ve been on Synthroid for a while. Apparently this miracle drug might just help with my neck as well (yay!).
Being hypo definitely exacerbated the usual amount of pain I experience in these areas. It also caused a general but bearable soreness in my legs, arms, stomach area. I think if you were not previously experiencing any kind of injury, this will be an inconvenience akin to normative menstrual cramping: nothing to scoff at, but nothing debilitating. Again, the best medicine for me was outdoor exercise, but take it easy.
Weight GainCheck. Uncheck. Check. During treatment I would not let this become a major concern. I am not above vanity, but when your body is dealing with so much confusion and your hormones and metabolism being dealt such rapid alteration, it is hardly worth stressing over. I have not really kept track of pounds over the course of this, but the fit of my clothes has altered both ways over the last month. I went from liquid only diet (loss) to a few days of gorging on soon-to-be taboo favorites (gain) to the low-iodine diet (both). My appetite has come and gone, but is generally smaller (likely due to food restrictions). The diet is great because I have had to give up processed, restaurant and fast foods, but the benefits here are probably outweighed by the increase in sloth. So rather than drive myself nuts with a balance sheet, I am trying to stick to the healthier recipes in the cookbook and force myself out of bed.
Sensitivity to ColdCheck. I was already a very cold-natured person. My mother and I are those strange people who carry sweaters around our waists in July (in TX) in case we have to go into a grocery store, movie theater, restaurant or other place that have no fear of A/C bills. Post-op, it was even worse, manifesting in A/C battles with my husband (I kept turning it off completely and he is very hot-natured), going around in the car with no A/C (if you are from TX, I just heard your gasp), and wrapping up in those sweaters (indoors and at night mostly). If you live in a colder climate or are experiencing this during the winter, I recommend migration or dressing like this guy>>>>>>
Slow heartbeatAlso called bradycardia This is a little scary. Most of the time I do not notice it, but when going to sleep, I no longer feel entirely comfortable sleeping on my back. Lying down still feels a bit like choking, my heartbeat sounding loudly in my throat and my breaths gaspy. So I lie on my side.
Dry Skin and Brittle NailsNot a big deal. The most I noticed were little patches of dry skin around my fingers and toes. No peeling or irritation. A small bottle of lotion helps.
ConstipationI’m talking bowels, people. A TMI topic, so I will leave it at this: my mother-in-law warned that it would behoove me to stock up on things like Benefiber and things ending in “lax.” She was right. Use sparingly.
Heavy periodsDid not notice a difference.
Hair LossNot yet. But I have plenty to spare.
DepressionSeriously? Mary frickin Poppins would be a little depressed in these circumstances. Just hide the knives and stay away from tall windows.
Tingling Hands and FeetAlso called paresthesia. Annoying but not painful. Take lots of calcium supplements, especially since you can’t consume any dairy. TUMS also help with stomach discomfort.
Slow HealingI’ve noticed that I bruise more easily, that they last longer and that they are more painful than usual. For instance, I have never had a problem giving blood in the past. When you have cancer, doctors ask for blood like cops asking for a driver’s license. Normally I wouldn’t even remember which arm they took it from, but lately I am left with achy green and purple marks at the site, each lasting a little over a week. Also, I had my first stye and it lasted a month. Would not go away for all the wash cloths in the world.
Some Tips for Making Hypothyroidism Bearable:• Heating pads and a tube of Icy Hot are indispensable for aches.
• Triple-check ovens and locks.
• Take off your valuables and put them in a safe place. Tell someone you trust where that place is. As someone who is forever losing things, I decided not to risk the additional memory loss. So my wedding ring and other jewelry are on vacation (helps with hand-swelling anyway).
• Put aside some good books and a stack of movies. Even if you are the most ambitious type-A personality in the world, you will be forced into downtime. Might as well make it enjoyable. I preferred to revisit favorites because I keep falling asleep in the middle of things.
• Carry water and energy snacks with you everywhere. My favorites are a baggie of unsalted peanuts and raisins, apples, bananas and clementines. Just don’t forget them in your purse for too long…
• Long hot baths are great. Just don’t fall asleep.
• Do fun, stress-free, non-food activities with the most forgiving of your friends and family. Try not to play games that are too competitive or high-risk. Make sure whomever you are spending time with is aware that you may not be feeling your best, may say offensive things, may get emotional and may need to leave. If these things do not deter them from wanting to spend time with you, count your blessings!
''Nobody can tell what I suffer! But it is always so. Those who do not complain are never pitied.'' –Mrs. Bennet, infamous hypochondriac of Austen’s Pride & Prejudice ☺