How to be Your Own Thyroid Advocate
I recently realized my dosage of thyroid medication was too high. This was great news, as it means my thyroid gland is coming back to life and doing what it’s supposed to. Although I considered this good news, it took a while to convince my practitioner it was possible for me to recognize a wrong dosage and that blood tests are not the only way to truly tell if a dosage is wrong.
I will spare you the details and will simply share it took two weeks before my practitioner agreed to change my dose, even though I knew within two days that the dose was wrong. My symptoms were severe enough to negatively impact my ability to function normally. I could not wait two weeks to return to normal, so I changed my dosage on my own without her approval. (Please don’t do that. Always discuss dosage changes with your physician and never make changes without his or her direction and approval.)
Every thyroid patient I’ve ever met or interviewed says they know within two days whether a new dosage will work or not. Unfortunately, many doctors and mainstream practitioners don’t believe this and insist on waiting SIX WEEKS before performing blood work and agreeing to change a dose. If your thyroid gland stopped producing adequate levels of hormones, you would know something was terribly wrong within a few days. The same is true for medication dosage changes. Making a thyroid patient suffer for six weeks … or even ten days … is simply not acceptable and indicates a lack of understanding of the severity of thyroid conditions. It also indicates a lack of understanding of how sensitive patients are to what is occurring in their own body. There are multiple Facebook groups and international thyroid support groups that repeat this over and over again. Thyroid patients are tired of having practitioners ignore their symptoms. The fact these groups have hundreds of thousands of members from all over the world is valid proof there is a problem and lack of understanding related to adequately and effectively treating thyroid disease.
Being hypothyroid – or having insufficient levels of thyroid hormones – is a form of hell on earth that no one can understand unless they’ve experienced it. This is why many mainstream practitioners just don’t get it. They think thyroid patients should happily endure incredibly rapid and consistent weight gain unrelated to food consumption, edema that causes “cankles” and makes it impossible to see the bones in one’s feet, bald spots, depression, fatigue, itchy skin, severe aches that resemble arthritis, loss of balance with vertigo, weak muscles, muscle cramps, constipation, irritability, memory loss, slurred speech, feeling cold all the time (even in 100+ degree heat), and more. I’m here to say: NO MORE. (What I would actually say can’t be posted in a family-friendly article such as this one.)
It is estimated that 10-20% of US citizens have a thyroid disorder that requires intervention. Unfortunately, many of these thyroid conditions get ignored due to improper testing and doctors who don’t recognize the common symptoms. There is also a tendency for practitioners to dismiss symptoms, saying things such as, “You work full time and have four kids. Of course you’re tired!” Many doctors assume that complaints of fatigue, weight gain and more are simply “whining” and are not genuine symptoms or are indicators of psychological issues. There is also an assumption that weight gain is related to laziness and that patients who insist they are doing everything right are lying. That attitude, my friend, brings me closer to cussing than anything shared previously.
So what can you do? Be the squeaky wheel. If you know you have something physically wrong or that your thyroid medication dosage is wrong, INSIST your doctor change the dosage. Do your research and share your symptoms, stating the symptoms you are experiencing are obvious indicators the dose is wrong and that waiting several weeks to perform blood work will cause further damage. Be blunt and be insistent. If this doesn’t work, go ahead and get the blood work run early. Although docs insist blood work requires six weeks to show true results, your blood levels of thyroid hormones will show enough change after two weeks to show an imbalance and a need for a medication change.
Let’s review … to truly check how your thyroid is functioning, you must have the following tests run every time:
- Free T3: A measure of the active T3 thyroid hormone.
- Free T4: A measure of the less active T4 thyroid hormone. The body should convert T4 to T3 but often does not.
- Thyroid Stimulating Hormone (TSH): A measure of a pituitary hormone the body uses to stimulate the thyroid gland. Many doctors ONLY order this hormone, which is a grave error. Only measuring TSH – a hormone produced by a different gland entirely – is similar to checking the the temperature of your radiator fluid in order to gauge whether you need more oil or not. It is indirect and very inaccurate. Measuring the true thyroid hormones (Free T3 and Free T4 at a minimum) is the only way to tell where your levels are for sure. TSH levels may also fluctuate greatly in thyroid conditions caused by an autoimmune condition, so their use is highly unreliable.
- Reverse T3: Reverse T3 is a hormone that counteracts the T3 your body is producing. It is important to test this because your TSH, T3 and T4 could potentially be “normal,” but overproduction of Reverse T3 could cause you to be extremely symptomatic because your body is “killing” the T3 that’s produced. Excess insulin and insulin resistance often cause excess RT3, so it is important to test this hormone each time thyroid hormone levels are checked.
- Thyroid Peroxidase (TPO): TPO measures the amount of anti-thyroid antibodies in your blood stream and is used to identify an auto-immune thyroid issue. TPO typically should be measured multiple times, because levels vary and it may take several tests before levels are high enough to be identified in a blood test. (Remember that a blood test is a very tiny “snapshot in time” and that the results shown in that instance may not always be 100% accurate for some measures.)
- Thyroglobulin Antibodies (TgAb): This is another measure of autoimmune antibodies that is typically only used when hyperthyroidism exists.
When a dosage is changed, it is imperative to have new blood work run (TSH, Free T3 and Free T4 at a minimum) within 3-6 weeks to ensure the new dosage is correct. It breaks my heart when people tell me their provider changed their dosage of thyroid medication and told them to come back in six MONTHS for blood tests. Severe physical harm can occur in six months of hypo- or hyperthyroidism. Waiting that long is not acceptable.
Did you notice your thyroid gland makes two hormones? (It makes more, but T3 and T4 are two of the most important ones and affect health the most.) Be aware that commonly prescribed medications such as Synthroid and its many derivatives only contain T4. Your liver should convert the less active T4 into the active T3, but many people’s bodies just don’t do that. This means many people suffer needlessly while taking Synthroid because their bodies desperately need more T3. There is a mainstream prescription, Cytomel, that contains T3. Many people find their hypothyroid symptoms disappear once they add T3 to their regimen. Natural thyroid medications such as Armour and Naturthroid contain both T3 and T4 and work far better for most people. For me personally, switching to a combination of T3 and T4 was a true life-changer. My symptoms began to disappear within a few days and I could actually begin living again.
To receive the best care possible, you must be your own advocate and seek the best care you can. Have you done that? If not, please do!
If you are a thyroid patient who can’t make sense of your blood test results, please contact me. I would love to help you interpret the results and will help guide you to discuss the results with your practitioner. Please feel free to call me at 317.489.0909 to schedule a 15-30 minute test results review consultation.
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