A hypothyroidism diagnosis may come with a sigh of relief. For many, it can take several years or even several doctors to finally receive a diagnosis. You feel like you have your medicine and marching orders and you’re finally ready to start healing. But then you learn about all of the tests, labs, and levels you need to keep track of. And then you realize it’s not an exact science and your conventional treatment may be failing you.
When I was diagnosed with Hashimoto’s, the autoimmune component of hypothyroidism, I felt like I needed a PhD to understand my tests, labs, and levels. Even after hours of research, it still didn’t make sense. On top of that, my treatment didn’t seem to work. What gives? We’re going to break it all down for you – your labs and tests and what they mean, thyroid hormones, T4 to T3 conversion, autoimmunity, and even pregnancy.
Introduction to Hypothyroidism
Hypothyroidism means that your thyroid is underactive, and your thyroid gland doesn’t make enough thyroid hormones. Your thyroid controls many of your body’s functions and affects almost every organ.1 Women are more likely to develop hypothyroidism than men, and although it can be diagnosed at any age, it’s found primarily in women over the age of 50.2
There are two categories and multiple causes of hypothyroidism:3
- Primary is due to disease in the thyroid:
- Autoimmune is the most common, normally from Hashimoto’s Thyroiditis.
- Post-therapeutic hypothyroidism is common after radioactive iodine therapy or surgery.
- Radiation therapy for cancer.
- Iodine deficiency, which is more common in iodine-deficient regions of the world.
- Although rare, enzymatic defects can cause goitrous hypothyroidism.
- Secondary is due to disease in the hypothalamus or pituitary gland.
In primary hypothyroidism, the thyroid-stimulating hormone (TSH) is increased; in secondary, it is decreased. 1 If it sounds confusing, it is. Your doctor will run several standard tests to evaluate your hypothyroidism.
The following are standard blood tests that all doctors should be running to evaluate your hypothyroidism and determine your standard of care.
Serum TSH is often lauded as the best diagnostic test. This test measures the effectiveness of the TSH telling your thyroid gland how much T4 and T3 to produce. If TSH is elevated, your thyroid is underactive. While it’s extremely important to monitor TSH levels, it should not be done in a vacuum, and monitored in parallel to the other tests.4,5
Additional hypothyroidism tests should include:
- Free Thyroxine (Free T4)
- Free T3
- Reverse T3
- Thyroid Peroxidase (TPO) Antibodies
- Thyroglobulin (TG) Antibodies
Finally, a thyroid ultrasound is recommended to monitor the size and activity of the thyroid gland.
You have several options when it comes to your hypothyroidism treatment. Your protocol will depend on your condition and your doctor’s recommendation.
T4 medicines provide T4 to your body. These treatments include drugs such as Synthroid (and the generic levothyroxine), Levoxyl, and Tirosint. 17
If you don’t convert T4 to T3, then adding T3 is needed to supplement your T4 medicine. T3 doesn’t stay active in your body very long, normally around 10 hours. Your doctor may recommend taking it twice a day. Cytomel is a common T3 drug, and compounded time-release options are also available. 17
There are options for a combination of T4-T3 blends such as desiccated thyroid medicine or a compounded medicine. Blended drugs include Amour, WP Thyroid, and Nature-Thyroid. 17
Thyroid medicine is not an exact science. Unfortunately, some endocrinologists give a rubber stamp prescription without a proper dialog. Here are some things to be mindful of when speaking with your doctor: 17
- Your TSH labs look fine, but you still feel sick. Make sure you are getting all of the labs and tests needed (refer to the section below).
- Dosing levels with generic prescriptions may inconsistent and not accurate.
- Some insurance companies will not cover all medications.
- Compounding pharmacies are not available in all locations.
- Some doctors believe that desiccated thyroid medicines are inconsistent. This was true many years ago, but now they are more strictly regulated.
- Be sure to take nutrition into consideration, as may patients with hypothyroidism do well with eliminating gluten, grains, and dairy from their diet.
My experience was all too common. The first endocrinologist I went to only prescribed Synthroid to all of his patients. I am one of those individuals who does not convert T4 to T3. For five years, I was missing a huge component of my treatment. Even the occupational nurse at my former employer said to me, “why can’t you just take Synthroid and be fine like everyone else?” While Synthroid is an effective medicine for many, there are options if it doesn’t work for you. Here are a few more items to be mindful of.
Don’t leave your doctor’s office without asking the following questions:
- What are my prescription options? How does generic compare to brand-name?
- What fillers are in my medicine and how does that affect my condition? Many individuals with thyroid conditions feel better by avoiding gluten, grains, and dairy in their diet. Unfortunately, some medicines contain gluten, corn, and lactose.
- When should I take this medicine? For example, levothyroxine should be taken first thing upon wakening, on an empty stomach, and at least an hour before eating.
- When will I feel better? It can take anywhere from one week to a month or more to start feeling the effects of your medicine. When given a new medicine, it’s best to go back for new labs in 4-6 weeks to determine how the new medicine is working.
- How should I store my medicine? Normally you want to store it in a cool, dark place. Bathrooms are not ideal due to the heat and humidity.
- Should I combine T4 with T3? It’s going to depend on your situation and labs.
The Debate Over TSH Ranges
Remember what I said about needing a PhD to interpret test results? There’s so many tests, so many numbers, and so many resources to turn to. It’s difficult not just to interpret the results, but also to make sense of what the results mean for you. I spent hours researching how the experts recommend interpreting these lab results and conducted an analytical comparison of four of the most respected clinicians in thyroid health. The table below represents this analysis with the most optimal results. 4, 7, 5, 8
|TSH||0.4 – 4.0 mU/L|
|Free T4||0.8 – 1.8 ng/DL|
|Free T3||> 3.2 pg/mL|
|Reverse T3||11 – 18ng/DL|
|TPO Antibodies||< 4 IU/mL|
|TG Antibodies||< 2 IU/mL|
Optimal lab results, especially for TSH, are hotly debated, even among the experts. McCall McPherson PA-C, Founder & Co-Owner of Modern Thyroid Clinic, explains the cause of this controversy.
“Generally speaking, TSH cannot be considered a reliable marker for screening for hypothyroidism, as it’s largely influenced by the thyroid’s inactive thyroid hormone, Free T4. The worse a person’s conversion (and activation) of the Free T4 to Free T3, the better their TSH will look. This problem is compounded when people are on T4 based medications like levothyroxine and Synthroid, artificially suppressing their TSH while leaving their active thyroid hormone depleted, leaving millions of thyroid patients suffering with debilitating symptoms while their doctor tells them their thyroid labs (TSH) look great. Once a person is put on T4 based meds, TSH becomes completely unreliable and can no longer be used alone to gauge a patient’s status. But when looking at TSH in its simplest form, it should always be below 2, ideally closer to 1, and sometimes people don’t feel good until it’s less than 1.”
Conventional standards for normal TSH values range from 0.4 to 4.0 mU/L, or even higher, but the experts don’t always agree on the upper number. Labs use different measurements which produce different results. Additionally, this range is not ideal when you have a pituitary disorder, thyroid cancer, or are pregnant. 17
Ever wonder why your doctor tells you that your “labs look fine,” but you still have numerous symptoms? TSH ranges vary person to person, and even on the time of day. While TSH labs are important, it’s more thorough to look at all of the lab results as a complete picture, along with a discussion of your symptoms with your doctor.
Think of it this way. If your car doesn’t start, checking the battery is the most obvious place to start. But if the battery is fine, it may be the starter, alternator, or your car may even be out of gas.
Sensitivity to Thyroid Hormone
We’ve discussed previously that for those with hypothyroidism, you aren’t making enough of your thyroid hormone. Thyroid hormone replacement is a very common treatment. Thyroid hormone replacement therapy is designed to compensate for your lack of thyroid hormone. Synthetic thyroxine (T4) is manufactured to work in the same way as your thyroid hormone. Every patient will respond to this therapy differently. For many, this treatment works well and is extremely effective. But there is a population of individuals who do not improve with this therapy. 10, 11
With Hashimoto’s, your immune cells attack your body’s healthy tissues instead of protecting them. Some patients with Hashimoto’s may develop antibodies against T4 and/or T3. It’s important, especially if you have or suspect Hashimoto’s to get these additional tests so that you can be treated accordingly. 2, 7
As discussed above, one question you should ask your doctor is about the fillers in your medicine. For example, Synthroid contains acacia, lactose, and gluten. Individuals who have pollen allergies and hay fever may adversely react to acacia, which is a family of trees. Many individuals, not just those with hypothyroidism, have an intolerance to lactose and/or gluten. If you feel worse 30 minutes to two hours after taking your Synthroid pill, talk to your doctor about the fillers and discuss an alternative treatment plan. 4
T4 to T3 Conversion
Many with hypothyroidism and Hashimoto’s have difficulty converting T4 to T3. The production of your thyroid gland is 80% T4 and 20% T3. T4 originates from thyroid secretion, but the majority of T3 is produced from T4 deiodination. Despite this, T4 is mostly inactive, while T3 is the active hormone. This is why the T4 to T3 conversion is so critical.7
The lack of conversion of T4 to T3 can be due to various factors including the deficiency of selenium or zinc, the absorption of selenium or zinc, liver dysfunction, high cortisol (high stress) levels, and even medicines such as beta blockers. 7
If you are on Synthroid and are not feeling better, ask your doctor about your T4 to T3 conversion and see if changing your treatment will help.
If you are pregnant or trying to get pregnant, then you really need to keep an eye on hypothyroidism. I have several friends and colleagues who have miscarried due to hypothyroidism. According to research presented at the 2012 Endocrine Society Annual Meeting, the risk for miscarriage and stillbirth for women with thyroid dysfunction (not just hypothyroidism) is seven times greater.21 It’s not to scare you, but more to arm you with additional information to discuss with your doctor.
Dana Trentini created Hypothyroid Mom out of her rage from one of these miscarriages, and the promise to help other moms and moms-to-be manage their hypothyroidism while pregnant.8
In addition to the regular conversations you are having with your doctor about hypothyroidism, if you are pregnant or want to be, add these questions to your list to ask: 15
- How does hypothyroidism affect my unborn child?
- What should I be aware of in each trimester?
- Are my TSH and other labs in line with the Endocrine Society Standards? (2.5 or under)
- How does this affect my T4 dosage?
- What do I need to know about iodine consumption and levels?
- What are the signs or symptoms I need to be aware of for immediate attention?
Autoimmunity and Hypothyroidism
It’s also necessary to look at the autoimmune component of hypothyroidism. It’s estimated that 90% of adult hypothyroidism is due to autoimmune disease, primarily Hashimoto’s. We mentioned earlier in the article that hypothyroidism is predominant in women over 50 years old. Most Hashimoto’s patients are women as well, but younger; 20 to 60 years old.6
The treatment protocols listed above are appropriate for hypothyroidism and Hashimoto’s, but the autoimmune component with Hashimoto’s adds another layer of complexity to the standard of care. While there are many forward-thinking Endocrinologists, unfortunately, not all of them want to treat beyond hypothyroidism. You should work with your doctor to identify the root cause of the autoimmunity and look at various factors such as removing inflammatory foods from your diet (gluten, grains, dairy, etc) and environmental toxins. It’s also helpful to get tested for heavy metals, parasites, and viruses such as Epstein-Barr (EBV), Herpes simplex, and Human papillomavirus (HPV).
I really wanted to break down the complex information in this article as simply as possible for you. Getting a hypothyroidism or Hashimoto’s diagnosis is scary, and it’s a lot of new information to digest. Take it one step at a time and one day at a time. And always remember the following:
- Hypothyroidism is complex, and everyone is different. Your treatment plan should be unique to you.
- If your TSH “looks fine” and you still feel sick, keep pressing for additional labs and tests.
- Ask your doctor about Hashimoto’s if they don’t mention it.
- Ask your doctor about the different kinds of prescriptions, and don’t forget to ask about the fillers.
- Ask your doctor about nutrition and lifestyle factors that you should consider.
Finally, don’t give up and keep pressing for answers. You deserve to be happy and healthy!