Hypothyroidism: Why Symptoms Continue Despite Treatment
Hypothyroidism affects approximately 5% of the US population. It is also known as underactive thyroid, where the thyroid gland, which is located in the neck, does not prove produce enough thyroid hormones. So it would seem back treatment is simple: prescribe thyroid medication to pick up the slack, and labs will return to the normal range. But most thyroid sufferers know this is not the result of their treatment, even if they have been taking thyroid medications for years.
Thyroid symptoms persist because most doctors don’t know how to properly treat thyroid disease
Doctors that are not specialists in thyroid disease are treating patients for their thyroid conditions
Common symptoms are attributed to other diseases and an ineffective treatment is prescribed
Symptoms are disregarded: patients are told they’re just getting older, or it’s all in their heads
The physician doesn’t look at the big picture, and how other diseases and organs/organ systems can affect the thyroid
Yes, thyroid dysfunction does involve the thyroid. However, problems are much more complex, and most physicians don't look beyond basic thyroid tests when it comes to treating symptoms. Instead, when a patient complains of still feeling unwell despite normal lab results, a doctor will often suggest that the problem has nothing to do with the thyroid, or is maybe just a result of stress. This is particularly true when the patient is female, and unfortunately, women are five to eight more times more likely to develop thyroid disease in their lifetime than men.
Why is the thyroid so important?
Thyroid hormones affect nearly every organ in the human body. Therefore a thyroid gland that cannot do its job can wreak havoc in all organ systems. Although it usually takes a long period of neglect to reach this point, thyroid-related fatality does occur.
Symptoms often develop slowly over the course of years so it may be a very long time before a thyroid condition is diagnosed. Feelings of fatigue, gradual weight gain, dry skin, and thinning hair may be mistaken for natural changes happening during the aging process rather than symptoms of a disease. But the more frustrating situation occurs when a patient is acutely aware of their symptoms but their blood tests come back normal and they don't receive a diagnosis. Meanwhile, more organs will become affected while the underlying lying cause remains undiagnosed.
Common symptoms of hypothyroidism
Besides the effects mentioned above, underactive thyroid disease can also express itself as constipation, heavy or irregular menstrual periods, cold intolerance, joint pain, headaches, puffiness (particularly around the face), brain fog, need for more sleep, and depression. Trouble swallowing or a swollen or tender throat, or nodules in the throat called goiters can also occur. Because fibroid function regulates other hormones in the body, it is not uncommon for hypothyroid patients to experience fertility issues. Men may have trouble with low testosterone while women may have menopausal symptoms.
The biology of hypothyroidism
The thyroid gland does not just spontaneously produce the thyroid hormone used by the body to regulate function. In fact, other organs must be fully functioning and participate in the process both before and after the thyroid.
It all starts in the hypothalamus, which is a small organ within the brain. This organ produces TRH (thyroid releasing hormone), which activates the pituitary gland (also in the brain) to create TSH (thyroid stimulating hormone).
TSH activates TPO (thyroid peroxidase activity) within the thyroid. Iodine is then attached to tyrosine to make the two primary thyroid hormones: T3 (with three iodine molecules) and T4 (with four iodine molecules). In order to make T4 and T3, the thyroid gland needs cofactors (various vitamins and minerals).
But the process doesn't end there. The thyroid only produces about 7% T3 vs 93% T4; since T3 is the hormone that is most usable by the body, more work must be done. Most T4 is converted by the liver into T3. The remainder of T4 is converted to T3 in other parts of the body. Of the T3 produced, some of it is in an inactive form and is converted to active T3 in the gastrointestinal tract.
Common misconceptions about thyroid disease
As you can see, there are many places where this system can go wrong. For example, if the hypothalamus or pituitary gland is not functioning properly, then the thyroid gland will not receive instructions to start making thyroid hormones. Nutritional deficiencies could prevent TPO from creating T4 and T3. If there is liver or gastrointestinal dysfunction, then hormones produced by the thyroid will never reach their active form in sufficient amounts.
Most doctors will only test a patient's TSH level. As you can now see, TSH isn't even the hormone that the thyroid creates. So examining only this one test can lead to a faulty assumption that all processes down the line from TSH production are working properly.
Using only TSH level and treating patients just with T4, known commonly as Synthroid or Levothyroxine, assumes that the body can properly react to TSH and convert T4 to T3. This is the standard care model in most doctor’s offices, which ignores the most common cause of hypothyroidism.
Hashimoto's disease or Hashimoto's thyroiditis is an autoimmune disorder. Hashimoto's affects approximately 10% of women over the age of 30. Those with other autoimmune conditions are more likely to have Hashimoto's, and it is the leading cause of thyroid dysfunction.
Hashimoto's frequently causes fluctuations in thyroid function that can create both lab results and symptoms of underactive and overactive thyroid function.
This autoimmune disorder attacks the thyroid and causes damage, which leads to its dysfunction. Standard diagnosis techniques for Hashimoto's include a blood test, physical examination, and reviewing medical history. However, it is possible for Hashimoto's blood tests to be negative and still carry a diagnosis of Hashimoto's. It's possible for many reasons including an overall depressed immune system, fluctuations in the immune system, and different endocrine imbalances.
How to improve symptoms with hypothyroidism
Many people with hypothyroidism receive treatment from their primary care physician, who is probably well-meaning but does not have the bandwidth to keep up with all the latest information regarding thyroid dysfunction. If you have been treated for thyroid symptoms but are still suffering, I recommend you ask for a referral to a specialist. Doctors who specialize in endocrine disorders such as thyroid disease are called endocrinologists. They often have long waiting lists, so getting in to see one will require a lot of patience on your part.
Also, don’t let any health care provider tell you there is nothing wrong with your or nothing to help you just because a lab test says you are within the normal range. Standard lab testing reference ranges are based on results from “healthy control” test results for a local region. There are many questionable points in this practice, such as:
How healthy are the people in your location?
Did the lab use an adequate sample size?
When was the last time the reference range was updated?
Are environmental factors in your area skewing results?
Were the samples collected using proper aseptic techniques, without hemolyzing (damaging) the blood or blood vessels, and processed on functioning equipment and within a timely manner?
I won’t go into all the technical details in this area, but as a former phlebotomist, I can tell you that I often cringe when I have to get my blood drawn due to the sloppy practices adopted by the people who take my blood. I have also worked inside labs and saw how little care some people take in processing samples, and how poorly they maintain their machines.
Not to mention that our population as a whole is unhealthier with each decade; don’t confuse longer lifespans (which are now declining) with health. So the collection of healthy people for reference labs is small, and not necessarily represented in people who get their blood tested.
In short, normal blood tests do not constitute irrefutable proof that you do not have any medical issues, or that your thyroid condition is well-managed. A quality physician will accept that you know your body, and if you say something does not feel right then it needs to be investigated further.
Sadly, more testing may be needed, and it may turn into a guessing game to discover what improves your symptoms. Just know that giving up is a bad option because chances of feeling better spontaneously are low. It’s more likely you will continue to feel worse.
Resources I don’t recommend for improving thyroid symptoms
First and foremost, I recommend against buying a bunch of supplements recommended by a friend, or that you saw in a book or on the internet. Whatever you do, DO NOT buy something just because it’s recommended by Dr. Oz! That man is a seller of snake oil; he will put his reputation up for anything so long as he gets paid.
It’s imperative you do your own research when trying any medical treatment, regardless of who is recommending it. Healthcare practitioners, regardless of where they got their training, are still infallible human beings. Ask lots of questions before you agree to any treatment.
What you can do to support your thyroid wellness
I wish I had a magic bullet or had discovered some miracle cure for thyroid dysfunction. I’m hypothyroid myself and have been told I “probably” have Hashimoto’s. Despite over ten years on thyroid medicine, my lab results still have quite a bit of fluctuation, and even when they are in the normal range I don’t feel well.
Even so, there are basic things everyone can do to try to feel better while they continue to work with their care team. Here are my recommendations:
Lower your stress as much as possible.
Try gentle exercise, such as walking, if your doctor says it’s safe.
Allow rest periods throughout your day.
Eat a healthy diet--work with a good dietitian, if at all possible.
Find a support group or a counselor.
Ask your friends and family to provide emotional support.
Keep up on personal hygiene and care for your immune system to avoid catching infections such as a cold or flu.
Don’t be hard on yourself if you’re too tired to do things you used to. Ask others to be understanding and explain you are working with medical professionals to try to feel better.
And most importantly, continue to advocate for yourself. You are not alone.