Welcome to TiredThyroid.com, a website for those who are tired all the time, and not getting the help they need to restore their health due to thyroid problems. This site was specifically written for patients to share with their doctors. Therefore, it is essential that one understand thyroid physiology terms. Here, in great oversimplification, are the terms one needs to know.
The hypothalamus is located in the brain and is about the size of an almond. It sends signals to the pituitary gland, located beneath it, to create hormones that stimulate other organs. One of these is Thyroid Stimulating Hormone, more commonly known as TSH. TSH tells your thyroid to produce thyroid hormones such as thyroxine, also known as T4. The “T” stands for tyrosine, which is the amino acid that 4 iodine atoms are attached to. A healthy person produces, on average, around 100 mcg T4 and 6 mcg T3 daily. T3 or triiodothyronine, which is tyrosine with 3 iodine atoms attached, is the biologically active thyroid hormone that raises metabolism when it fits into a T3 receptor site in a cell. This is analogous to a key fitting into a lock. Without sufficient T3, the body doesn’t function well, and in extreme cases, lack of T3 causes a condition called myxedema coma. In a healthy person, T3 converts from T4 by an enzyme that strips one iodine atom off a T4 molecule, resulting in a T3 molecule. A different enzyme will convert a T4 molecule into a reverse T3 (rT3) molecule, by removing an iodine atom from a different position. Both T4 and rT3 do not directly increase metabolism, though they do have other essential functions. A healthy body has T4, T3 and rT3 in the correct proportions, with T4 being the dominant hormone.
The hypothalamus and pituitary work off feedback loops, similar to a thermostat in a house. If you turn the heat on in a cold house, a thermostat will sense the air temperature, and when the temperature drops below a certain level, the heat will turn on, warming the house until the temperature reaches the desired level. Then the system automatically shuts off, until the temperature again drops below the set level. The heater only turns on when the thermostat indicates it’s too cold. This is a simple feedback loop, and similar to how the TSH works. TSH will rise when the body senses that thyroid levels are too low. A high TSH is a signal to make more thyroid hormone. Severely hypothyroid patients have reported TSH levels in the 100s, while a healthy TSH is closer to 1.0. A very low TSH (near zero) may indicate hyperthyroidism or too much thyroid hormone in the body, but many on replacement thyroid medications have a suppressed TSH with normal T4 and T3 levels.
In the same way that thermostats can break and become unreliable, so can a damaged hypothalamus or pituitary result in insufficient TSH signals. The TSH will not be a reliable gauge of thyroid levels. A hit to the head from a sports injury or car accident can damage either the hypothalamus or pituitary, resulting in what is called tertiary or secondary hypothyroidism. Severe blood loss from an accident or childbirth can also damage the pituitary, again resulting in a broken feedback TSH signal. For this and multiple other reasons explained in another section, TSH is not a reliable indicator of thyroid levels.
To review: thyroid hormone is produced in the thyroid gland in the neck, acting on the TSH signal produced by the pituitary gland in the brain. In a similar fashion, cortisol is a hormone produced in the adrenal gland located above the kidneys, in response to an ACTH signal produced by the pituitary gland in the brain. ACTH stands for Adrenocorticotrophic Hormone. Thyroid and cortisol work together in a healthy person, so lack of either hormone creates health problems. Normally, thyroid and cortisol will rise and fall in tandem, so as thyroid levels fall, so do cortisol levels. Likewise, raising thyroid levels slowly can raise cortisol levels. Interestingly, if someone suspects they have low cortisol or adrenal fatigue, a lab test to determine cortisol levels is run first. ACTH, the pituitary hormone, would only be tested later to determine if a deficiency in ACTH is the cause of the abnormal cortisol result. This is in direct contrast to thyroid testing, where the pituitary hormone TSH is tested first, and actual thyroid hormones (T3 and T4) may not even be checked. As stated earlier, a normal TSH does not necessarily mean that thyroid levels are healthy. This is the major flaw with current thyroid treatment: TSH is a pituitary hormone, not a thyroid hormone, does not fit into a T3 receptor site, and therefore excessive or deficient TSH levels cannot cause one to be hyper or hypothyroid. Only excessive or deficient T3 (and T4) levels can cause hyper or hypothyroidism. Someone can be severely hypothyroid with a normal TSH.
More terminology for the case study that follows:
Thyroidectomy – surgical removal of one’s thyroid
Goiter – enlarged thyroid gland, often from an iodine deficiency or Graves’ disease, an autoimmune thyroid condition which causes hyperthyroidism
Desiccated thyroid – a natural medication made from dried pig thyroids that contains all the components of a thyroid: T4, T3, iodide, and tyrosine
Armour, Nature-Throid, Erfa’s Thyroid, NP Thyroid, WP Thyroid – some brands of desiccated thyroid
Cytomel, liothyronine – some brands of T3 medication
Synthroid, Levoxyl, Tirosint, levothyroxine – some brands of T4 medication
A Typical Thyroid Patient’s Doctor Visit
Nearly everyone who is hypothyroid will relate to this real-life forum post from a male thyroid patient (four years after total thyroidectomy at age 38 due to compressive, non-toxic, multi-nodular goiter, and still suffering from multiple hypothyroid symptoms on Synthroid):
Re: First Endo Appt
Ask your doctor about switching to desiccated thyroid or adding T3 to your treatment. I recently had my first big endo appt too. I was so excited about the appt and prepped for a week. I wrote everything down on 3×5 cards, I had test questions, all my symptoms, concerns, q? about t3 and Armour. And then the douchebag [chief endocrinologist] walked in and said there is nothing wrong with me. It was horrible. [My TSH was normal. He dismissed all my symptoms and said there is nothing he can do for me because TSH is the gold standard and a godsend to thyroid treatment. He would not run Free T3 or Free T4 labs because he said they were almost useless. He would not give me Cytomel or even entertain the idea of desiccated thyroid.]
So don’t put too much stock into this appointment. The first thing you need to ask this new endo is, “what is your treatment philosophy—labs or symptoms? And does it include Armour and/or Cytomel?” If he treats labs and doesn’t believe in Cytomel or Armour then you will have a horrible visit.
I too was on Synthroid and feeling like sh*t for years. My new endo recently changed me to a brand named Levoxyl and added Cytomel. I feel much better already, but still need to make some minor adjustments.
After his thyroidectomy, this patient was prescribed 150 mcg Synthroid, which was slowly raised to 175, 182, 200, back down to 175, then up again to 200. His last adjustment up to 225 mcg still did not rid him of the usual hypothyroid symptoms: weight gain (25lbs), inability to lose weight no matter what, brittle fingernails (they broke easily, all the time), constipation, mood swings, fatigue, muscle and joint aches, lower back pain, high cholesterol (went from 175 to 310), lack of motivation, depression, memory problems, foggy brain, trouble concentrating, inability to get mentally organized, scatter-brained, and trouble sleeping.
The following are his own words, which have sadly been repeated by too many:
I complained of muscle aches, they said exercise more and stretch out
I complained of mood swings and depression, they sent me to mental health
I complained of constipation, they gave me stool softeners and laxatives
I complained of memory problems, they said I’m getting old and to deal with it
I complained of weight gain, they said it’s old age again.
I complained of sleeping problems, they gave me sleeping pills.
I complained of hair loss, but the doctor said it’s just normal male balding for my age.
Hind sight is 20/20. If I could do it all over again, I would have left my thyroid in and dealt with having a big goiter on my neck and looked like a freak instead of dealing with this nightmare. It has turned my life upside down for the worse. I have gone thru 3 primary care doctors and am on the fourth one now after firing the last one.
The messed up part is, no one ever treated the symptoms as a thyroid problem . . .
Thyroid Treatment Today
Many women feel doctors do not take them seriously because they’re female. Well, the above post from a male patient demonstrates that being female is not the problem. The absolute reliance on one number, the TSH, is the problem. It has the power to keep patients from ever from being properly medicated, and condemned to a life of ill health. Unfortunately, the above story is very commonplace. Week after week, variations of the same story appear on thyroid internet groups from both men and women, young and old. I feel that reliance on the TSH is the #1 obstacle every thyroid patient faces in getting their thyroid levels optimized. I devote an entire section to the flaws of using the TSH for diagnosis and dosing [TSH levels do not reflect thyroid levels]. It is my hope that patients can use these sections with their doctor to justify a change in either type or strength of thyroid medication. The goal should be to achieve wellness, whether that is with one medication or two, natural or synthetic. The goal should not be to achieve a “normal” TSH test result.
Thyroid patients, in general, are not taken seriously. Maybe it’s because we look fairly “normal.” If we’re overweight, then our laziness is to blame, not our lack of thyroid hormone. Maybe it’s because thyroid reference ranges are so broad, that low thyroid hormone levels are considered normal. I’ve written another section that explains how misleading current thyroid reference ranges are [Thyroid lab ranges are too broad]. In any case, there’s seems to be a huge disconnect between someone not feeling well and seeking help, to actually getting help.
This website was designed for everyone with a tired, dysfunctional thyroid who does not feel well. Maybe they can’t even get the diagnosis that their thyroid isn’t working, because their TSH always comes back “just fine.” Maybe they’ve already been diagnosed and take some form of thyroid hormone, but still feel tired all the time. Since their TSH is “normal,” they’re instead offered prescription medications for their hypothyroid symptoms like anti-depressants, anti-anxiety medications, statins, sleeping medications, blood pressure medications, antacids, and laxatives, to name just a few. Or lastly, maybe they tried to do their own research, followed the advice they found on the internet, but became worse. Dosing is such an individual thing that what works for one person may be ill-advised for another, and some have ended up worse than ever. There are serious drawbacks to some of the recommended thyroid internet group protocols, and I try to explain them here at this site.
If someone has been declared “normal” but has multiple underactive thyroid symptoms, they will literally have to fight the system if they want to regain their health, because of the reliance on the TSH. (And that is really difficult to do with brain fog and fatigue!) There are articles here and there that talk about the flaws of using the TSH, and certainly, overwhelming first-person accounts on many thyroid internet groups on how keeping TSH levels in-range has kept many sick and undermedicated. But as far as I know, there is no website that summarizes multiple thyroid topics, with medical journal references and studies, that a patient could share with their doctor (on an iPad in their office!) to plead their case. I hope this website becomes that tool.
[UPDATE: There is now a Tired Thyroid book that explains thyroid physiology in much more detail. There are case studies, chapters on iodine, autoimmunity and reproduction, and additional charts and graphs that are not on the website. You will learn the facts you need to know to customize your dose to your needs.]