Pain is inevitable, suffering is optional.
—M. KATHLEEN CASEY
You may think that if you have an undiagnosed thyroid condition, your weight problems will be over after it is treated. Unfortunately, that happy ending is for the minority of patients. The majority of thyroid patients struggle with a variety of symptoms, including fatigue, mood swings, and, of course, weight gain or difficulty losing weight.
This is where the issue becomes particularly challenging, because there is a fear among some physicians to even connect thyroid and weight problems. Perhaps this is because in the past, just as amphetamines were abused by doctors and patients for weight loss, thyroid drugs were also used in a similar way. Doctors who were known to dispense amphetamines and thyroid drugs for weight loss—the “diet doctors”—had a bad reputation. In fact, the stigma was so bad that today’s doctors specializing in weight loss call themselves bariatrics physicians, and they are more likely to be handing out antidepressants and suggesting gastric bypass than testing for an underactive thyroid.
Today’s doctors are afraid that if they connect your weight with your thyroid, you may become a drug-seeker, looking for drugs inappropriately—in this case, looking to get thyroid drugs or taking too many thyroid drugs as a way to lose weight. They fear being lumped into the old category of the diet doctors.
Another reason doctors don’t want to connect thyroid disease with weight gain is that they simply don’t understand very much about nutrition, metabolism, and the thyroid. They know the basic symptom list, they know how to do a thyroid-stimulating hormone (TSH) test, and they know how to write out prescriptions. But they don’t know about nutrition. You’ve heard the old bromide about how most doctors spend about an hour on nutrition in medical school. Well, in addition to that hour, they spend a couple of hours on thyroid disease, and that completes their education on nutrition and metabolism. The complexities of the endocrine system, the delicate interplay that goes on between hormones, the brain, the stomach, the appetite, and the ability to store and burn fat, are not topics most doctors have studied or even understand.
Most doctors really don’t know what to do about losing weight. The majority of Americans are overweight, and doctors don’t have much more advice than telling people to get off the couch, get more exercise, and eat less. Even for those who don’t have a thyroid problem, this advice obviously isn’t working. And when you add in the difficulties of a thyroid problem, doctors have even less to offer.
What you will hear from endocrinologists, other physicians, and even patients, however, are supposed facts about thyroid disease and weight gain that are spread around without question but should actually be looked at quite critically.
FACTS VERSUS MYTHS
There are a variety of myths about thyroid disease and weight gain. Here are the facts.
1. If you are hyperthyroid, you may not lose weight.
Actually, a percentage of people who are actively hyperthyroid gain weight. Why they do is not clear. It may be they are simply so hungry that they are taking in more calories than even their revved-up metabolism can burn. Or it may be that their impaired endocrine system sets into motion a variety of the problems discussed in the last chapter such as poor digestion, insulin resistance, and adrenaline resistance.
2. If you are hypothyroid, you may not gain weight.
There are in fact a small percentage of hypothyroid patients who have difficulty gaining weight, or who maintain a normal weight throughout diagnosis and treatment. Also, some hypothyroid people do not have weight gain right away but find that over time it slowly creeps up on them.
3. If you are hypothyroid, your weight gain may be significant.
If you talk to some physicians, they will suggest to you that hypothyroidism can’t cause more than a few pounds of weight gain. Not true. Just ask the thousands upon thousands of thyroid patients who were at perfectly normal weights—myself included—until they started to pile on weight faster than seemingly physically possible, only to get diagnosed with hypothyroidism shortly afterward. Of course, there are always some patients who gain only a few pounds and who lose them fairly easily once treated, but they appear to be in the minority.
Laura, an active 51-year-old mother of two children, knew something was wrong when she started to gain weight and feel tired, moody, and achy.
I went from a vibrant, in-shape woman to a totally out-of-control, overweight couch potato! I wanted to scream but could not, since I also lost my voice! I did not want to leave my house and was too tired to do anything. I felt so sick I thought I would die! I gained about 40 pounds in a period of about 3 months. That alone was pretty scary.
Elizabeth is 61 and describes herself as at least 70 pounds overweight. In the past, the heaviest she had been was 190 after two pregnancies.
In 1999, I was told I had nodes on my thyroid and had a biopsy, which showed all was well. I had a severe case of vertigo in 2000, and the doctor I was taken to found out that my heart rate was out of control and my thyroid readings were bad. I was seriously hyperthyroid. Diagnosis: multitoxic nodular thyroid. I went to an endocrinologist and he had me take RAI (a high dose), and then I was put on Synthroid. He never told me that I was going to gain this much weight. I ballooned up to 230 pounds. That is my current weight! So I went from 190 to 230! What I find most frightening is the way my body has changed shape. Also my neck, which used to be long and graceful, is now squat, short, and I have these fat bulges in the indentations of my collarbones. I kept crying to the endocrinologist about how big I was getting. He said nothing and did nothing. I then went to a woman endocrinologist—she looked at me and pooh-poohed everything I said. She said I was fat from eating! At this point my regular internist takes care of me. But I must say that not a day goes by that I do not cry in the privacy of my home. I am so heavy my back is killing me. I barely have enough breath or energy to do things like I used to. It seems the doctors are unwilling to see the pain we are in. In plain English, I am not the same person I was before I had RAI. I am so miserably unhappy. I must try to get a grip on my weight before it does me in all together.
4. If you are treated with radioactive iodine (RAI), you will most likely become hypothyroid, and you will in all likelihood gain weight.
Doctors who tell you that they can somehow calculate just the right amount of RAI are living in fantasyland, because most patients post-RAI become hypothyroid, and many complain of weight gain. In fact, one research study found that more than 85% of patients receiving RAI became hypothyroid, and despite being treated with levothyroxine, their median weight gain was 11 pounds after 6 months, 20 pounds after 12 months, and 25 pounds after 2 years. Before the therapy, 27.5% were considered underweight by body mass index calculations, and 19.3% were obese, with a body mass index above 30. Two years after treatment, only 8.7% of patients were underweight and 51.3% were obese. Overall, the researchers found that there was a 32% increase in obesity in previously hyperthyroid patients following RAI therapy, with the main weight gain coming in the first 2 years.
Miya had this experience:
I used to be chronically underweight. In high school I wore a size 4 and I’m 5'9"! My mom was convinced I had an eating disorder. I always felt light-headed and would get dizzy spells. When my thyroid was hyper, I was literally eating four to seven meals a day. I ate Dairy Queen on a regular basis and was outeating my 6'2" boyfriend. I gained maybe 5 pounds the whole time (months and months) I was hyper. Once I went on Tapazole, I started to gain. I guess I began to be a weight that my body was supposed to be. I went up to a size 8, then a 10. When I was diagnosed, I was about 130 pounds. When I had RAI, after a year of Tapazole, I think I was about 150. After RAI, there was a 2-week period where I literally gained 10 or 15 pounds. It was insane. My weight went up to 175.
5. Thyroid cancer patients can have weight problems.
Some doctors will suggest that thyroid cancer, either in its early stages or after treatment, doesn’t cause weight problems. Not true.
Jody was diagnosed with thyroid cancer at age 21 and had a complete thyroidectomy followed by one radiation treatment.
During the time period that my thyroid was all out of whack when I was going through all the ultrasounds and biopsies to determine cancer or not, I gained 40 pounds. Yes, I went from a very healthy and in-shape size ¾ to a tired, miserable, and flabby size 13/14. I hated what had happened to my body as well as my mental well-being. I felt disgusting and that I had lost control of the one thing that I used to be very in control of. After the surgery, I could only thank God for getting me through it all and I could call myself a cancer survivor.
6. If all or part of your thyroid is removed, you can still gain weight.
But it’s not guaranteed that you’ll gain weight in this situation, because total thyroidectomy is most often done for thyroid cancer patients. And if you’ve had thyroid cancer, doctors do not typically wait until you become hypothyroid and your TSH levels elevate before they start thyroid hormone replacement. It’s usually started right away, and levels of thyroid hormone replacement are high enough to suppress thyroid hormone production, which means that you will be kept at a hyperthyroid or nearly undetectable TSH level. Still, even with a TSH at a hyperthyroid level, you may find weight piling on or impossible to lose.
7. The weight will probably not just melt off after you start thyroid hormone replacement.
There is always the story of the thyroid patient who started taking his or her levothyroxine or natural thyroid and lost 20 pounds in a month. But these accounts are few and far between. More likely is the loss of a few pounds, usually water weight, as the water retention of hypothyroidism starts to abate, then…nothing. The scale comes to a grinding halt.
CHALLENGES TO WEIGHT LOSS FOR THYROID PATIENTS
Even if your thyroid treatment is optimized, as described in chapter 2, as a thyroid patient you may still face a variety of challenges that make it more difficult to lose weight than it is for the typical person. I’ve focused primarily on hypothyroidism because the end result for almost all thyroid conditions is a surgically removed, radioactively ablated, or otherwise underactive or nonfunctioning thyroid—or hypothyroidism.
Diagnosis Delay
For many people who become hypothyroid, it can be months or even years from the time their thyroid condition develops to when it is diagnosed and treated. During this period, a variety of symptoms can appear, even before TSH elevates enough to officially qualify for a conventional diagnosis of hypothyroidism. Even slight decreases in metabolism mean fewer calories burned every day, so even if you ate the same amount and kept up your same level of activity over time, you would see weight gain due to the slight reduction in metabolism. Unfortunately, many people who are becoming hypothyroid also experience fatigue, low energy, and muscle pain, which makes them less likely to exercise. So you have another factor that can further reduce metabolism. Finally, as you become more tired, you may eat more to unconsciously try to generate energy. So it’s a triple whammy to your metabolism: you’re eating more food, burning off even less of it because of a lowered basal resting metabolism, and doing less physical activity.
If this resulted in a metabolism that was 350 calories a day less efficient, you could gain a pound or more every 10 days, or 3 pounds a month. Go undiagnosed for a year, and that’s 36 pounds. It can be even more, because the more weight you gain, the more efficient your body becomes at fat storage and the less active you typically become. All the more reason to become your own best advocate, and push for diagnosis and treatment as early as possible.
Hyperthyroidism
As hyperthyroidism develops, some people actually enjoy the ability to eat anything they want without weight gain or even with weight loss. Excess energy in some hyperthyroid people also results in their doing a great deal of exercise. So during this period, there’s an increase in resting metabolism and often an increase in activity level that often outweighs increased appetite. Or, if appetite remains the same, some people enjoy desirable weight loss that occurs as they eat normal amounts but lose weight because of improved metabolic efficiency.
The problem is that hyperthyroidism needs to be treated. It can cause rapid pulse and high blood pressure, and untreated hyperthyroidism puts you at risk for thyroid storm, an episode of uncontrollably high blood pressure and heart rate that can result in heart attack or stroke. So at minimum, your doctor will give you antithyroid drugs and perhaps beta-blockers, to help slow things down temporarily and see if you respond. Or you may get RAI treatment that permanently makes you hypothyroid.
The problem is that you may continue to eat as you did before. If you were eating at higher-calorie levels and all of a sudden you go on antithyroid drugs to slow down your thyroid and beta-blockers to slow down your heart rate, it’s like taking your metabolism from 60 to 0. You’re going to be burning up less calories, and you can start gaining weight quickly on your former calorie level. The double whammy comes when you find yourself feeling tired, so you cut back on activity and burn even less.
Even if you did not increase your food intake, you may have been eating at a level that maintained your weight. But after your diagnosis and after your metabolism adjusts to antithyroid medication and beta-blockers, you may find yourself gaining weight if you don’t cut calories and/or increase physical activity.
Erich was a cross-country runner, 5'10", who kept himself at a trim 145 pounds for most of his life, until he developed hyperthyroidism, went on antithyroid drugs, then had a thyroidectomy.
My weight just prior to surgery had climbed to an astounding 195 pounds, fully 30 pounds more than I weighed for the majority of my life. Following surgery, I was placed on a minimal dosage of Levothroid, which failed to provide me with the necessary supplement for my removed thyroid gland. Gradually, the dosage was increased (sometimes by my taking two pills on my own) until the point where I was taking 500 mcg per day. Unfortunately, the higher dosage failed to alleviate many of the symptoms of hypothyroidism such as cold hands, lethargy, weight gain, etc. By the time I switched doctors, my weight had climbed to approximately 236 pounds.
Another problem for people who start out with hyperthyroidism is the delay in getting on thyroid hormone replacement after RAI. Honestly, I have no idea what motivates some of the doctors who are treating thyroid patients, but if you are hyperthyroid and going to have RAI, your doctor should sit down and tell you these things:
Most of you will not have this discussion with your doctor. Unfortunately, the longer you go with your TSH elevating and without thyroid hormone replacement treatment, the more likely it is that you will gain excess weight.
Once you’ve had RAI, forget about being hyperthyroid and start considering yourself hypothyroid. Familiarize yourself with hypothyroidism symptoms and treatments (my book Living Well with Hypothyroidism can help), and take control of your own health. Monitor your symptoms. If you have to, order your own thyroid blood work as described in Part 1 of this book, and push for proper treatment for your now-hypothyroid condition.
Digestion and Elimination
Many physicians don’t tell you that thyroid disease causes water retention and bloating—especially hypothyroidism, which can cause puffiness and bloating in the face, eye area, arms, hands, legs, and feet. You also may not know that the body will hold on to water fiercely, unless you are getting enough water. Because you feel or look bloated or swollen, you may not drink enough water, but that is counterproductive. Dehydration can interfere with proper metabolism.
Hypothyroidism also slows down digestion and elimination. In fact, constipation is one of the most common symptoms, even for people who are treated. Slower and less efficient digestion and elimination means that toxins spend more time in the intestines, where they can do damage and pass into your body. Allergens spend more time in contact with your intestinal lining, where they can cause irritation and inflammation. All of these factors can impede weight loss.
Autoimmune Disease
Most thyroid disease is due to autoimmune conditions, like Hashimoto’s disease and Graves’ disease. Autoimmune diseases are conditions where there is internal inflammation. And, as noted in the previous chapter, inflammation can be a factor that impedes weight loss.
Endocrine Imbalances
The thyroid is part of the endocrine system. The endocrine system releases hormones, and its key players include
The endocrine system is very much geared toward balance, and an imbalance in one area seems to set into motion a cascade of other imbalances in many people. Among these, the underlying endocrine dysfunction of a thyroid problem means that you face a higher risk of other endocrine imbalances and conditions, including
All of the above factors can interfere with weight loss.
Some thyroid patients also overuse caffeine and herbal stimulants for weight loss and energy, which further stimulates and aggravates the adrenal glands and contributes to worsening adrenal exhaustion.
Body Temperature
The reduction in body temperature associated with an underactive or inactive thyroid can communicate to your brain that you are facing a period of starvation. This sends out a variety of signals that increase appetite, encourage fat storage, and discourage fat-burning—all as a means of ensuring survival.
Metabolism
The slowdown in metabolism may be communicating to your brain that you are facing a period of starvation, therefore increasing appetite, encouraging fat storage, and discouraging fat burning as a way to ensure your survival. Overall, a lower basal resting metabolism means that you either need to eat less or have higher physical activity, in order to prevent excess calorie intake and weight gain.
Another aspect of metabolism that is affected by hypothyroidism is the ability of cells to use oxygen, which is impaired in some people with thyroid dysfunction. This reduced oxygen utilization makes cells less effective at converting food into energy—another factor that encourages fat storage.
Starvation Dieting
Many thyroid patients have already gone to extremely low-calorie starvation diets in attempts to lose weight. This sort of diet wreaks havoc on the metabolism, making it think that you are facing starvation and turning on a whole host of appetite-increasing, fat-storing hormones, slowing the metabolism in order to prevent possible starvation.
Exercise
When you have a thyroid dysfunction, even with optimal treatment you may feel more fatigued than normal. This level of fatigue may mean that you exercise less and move around less, which reduces the amount of energy you expend.
Thyroid disease also commonly causes joint and muscle aches and pains, carpal tunnel syndrome, tarsal tunnel syndrome, and tendonitis, all of which make exercise and movement harder and may discourage you from exercising. Again, less exercise means you expend less energy.
In both cases, the less you exercise and the less physical activity you have, the more likely you are to lose muscle mass. And reduced muscle mass also reduces metabolism.
Fatigue and Food Intake
Many people with thyroid problems experience ongoing fatigue. When you are tired, one of the body’s ways to try to generate energy is to increase your appetite, encouraging you to eat to get energy.
Carbohydrate Cravings
Dutch researchers studying the energy and nutrient intake of thyroid patients found that thyroid disease and hyperthyroidism in particular may be linked to increased appetite for carbohydrates. This increased craving for and intake of carbohydrates appears to stem from various changes in brain chemistry and sympathetic nervous system activity due to the thyroid condition.
Depression
Thyroid disease can trigger or worsen depression. Depression is known to trigger eating in some people and especially increase carbohydrate cravings. It can also make you less likely to exercise and disrupt your ability to get restorative sleep.
Sleep Disruptions
Thyroid patients may have difficulty getting restorative sleep, which affects fat burning, serotonin, and hormone levels.
Allergies/Sensitivities
One of the known causes of thyroid problems is celiac disease, or gluten intolerance and sensitivity. Thyroid disease seems to make people more likely to have food allergies and sensitivities (e.g., wheat, milk, cheese, eggs, soy, and citrus allergies). As a thyroid patient, you are also at greater risk of candidiasis—yeast overgrowth—and the sensitivity or allergy to yeast can become an impediment to effective weight loss.
All of these allergies and sensitivities can cause inflammation and disrupted digestion and ultimately leaky gut/dysbiosis, which can further interfere with weight-loss efforts.