My TSH Is Normal, But I Still Have Symptoms

What You Need to Know

Middle Eastern doctor examining patient in office
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Many people who have been diagnosed with hypothyroidism, and are receiving treatment, have test results that are firmly in the so--called "normal" range of TSH, and yet still don't feel well.

The reality is that despite treatment for hypothyroidism, many patients -- some even say the majority of you receiving thyroid treatment-- continue to have symptoms that may be related to your thyroid. Even after you've been diagnosed and are on thyroid hormone replacement drugs, you may have persistent symptoms such as continued weight gain or difficulty losing weight, depression, brain fog or difficulty concentrating, hair loss, hand/feet/facial swelling, intolerance to heat and cold, muscle aches and joint pains, constipation, carpal tunnel or tendonitis, high cholesterol levels, low sex drive, and difficulty getting pregnancy, among others.

What are some steps to take to move toward feeling better?

1. Ask Your Doctor If a New Target TSH Might Be Appropriate for You

The first step for you is knowing your exact TSH level, and other key thyroid levels such as T4 and T3. These levels allow you to help gauge where your doctor is in terms of treatment and give you a common point of discussion.

Knowledgeable doctors know that a TSH of around 1 - 2 —in the low end of the normal range — is the normal level for people without thyroid disease, and they aim for this range in treating thyroid patients. Keep in mind that a doctor telling you your TSH is "fine" is not enough, because if your doctor is using the standard normal range of .5 to 5, you could have a TSH of 4 and be told that you are "normal." (Note, some doctors are following a new, recommended TSH range of 0.3 to 3.0). In my own situation, I know I feel terrible at a TSH of 3.0 or above, and I get hyperthyroid symptoms at .1, but I feel well at around 1.5 or so.

(Note: this TSH is usually kept even lower than 1-2 for thyroid cancer survivors to help prevent recurrence.)

2. Ask the Doctor If a Switch to Another Brand of Levothyoxine Might Be Appropriate

Another important step is to determine if you are on the right drug for you. The majority of thyroid patients are started out on levothyroxine, a synthetic T4 drug, usually the Synthroid brand.

But if you are not feeling well on Synthroid, or whichever brand you are on, you may want to ask your doctor about trying a different brand. The brands all have different fillers and binding ingredients, and some are more easily dissolved/absorbed than others, so some people find they do better on one brand versus another. The most available brands include Synthroid, Levoxyl, Levothroid, and Unithroid.

3. Try to Avoid Generics Or Get a Stable, Long-Term Batch If Necessary

If you still don't feel well, find out about the problems with generics, the need for T3, integrative approaches, and good doctors.

Some HMOs and insurance companies are automatically filling prescriptions for levothyoxine with generic versions of the drug. There is a problem with generic levothyroxine.

The key challenge with generics, and a valid complaint by doctors, is that when you have a prescription for generic levothyroxine, every time you get a refill, you may get a levothyroxine made by a different company. This means that every time you get a refill, you may have a product that has slightly different potency, which could have an impact on your TSH levels. This is particularly a concern for thyroid cancer survivors, who require careful dosing in order to suppress TSH as a way to prevent cancer recurrence.

If your HMO or insurance is trying to force a generic on you, you can ask your doctor to write a prescription for you that says "no generic substitution" and DAW (dispense as written). The doctor may even write a letter to help defend a brand name prescription.

If you are absolutely forced to take a generic, one way to protect yourself against fluctuation from brand to brand is to get a supply that will last for some time. Consider getting your doctor to write you a prescription for a six-month supply, for example. But when you get this prescription filled, make sure you get a fresh batch, one that will not expire until long after you will have used up the six-months' worth of drugs.

4. Consider Asking Your Doctor to Prescribe Additional T3 or a Drug That Includes T3

For some people, even if the TSH level is normal, or even in some bases, low normal, there may still be a situation where one is functionally hypothyroid, due to the body's inability to convert circulating T4 thyroid hormone into the active T3 hormone at the cellular level, inadequate T3 hormone levels in general, or other factors. Inability to properly convert T4 to T3 can also result in fluctuating TSH, as the system struggles to keep balancing an out of whack T4 and T3 level, sending TSH levels up and down to compensate. For these patients, supplemental T3 may help them to feel well.

Some patients find that adding T3 in the form of Cytomel or via compounded, time-released T3, to their levothyroxine, resolves symptoms. Others have had success with the another approach: synthetic T4/T3 drug Thyrolar, and a subset of patients seem to feel best on the natural desiccated T4/T3 drug Armour Thyroid, which has been available by prescription for more than 100 years.

I am one those people who feels far better taking T3. Since my diagnosis in 1995, I have taken various brands of levothyroxine, levothyroxine plus Cytomel, Thyrolar, and Armour, and I have always felt better on a regimen that included T3, versus levothyroxine drugs alone.

Surprisingly, It's still considered controversial to use T3 for people with hypothyroidism by the less innovative or accepting members of the medical world.

5. Integrate Alternative and Holistic Approaches Into Your Treatment

If you've optimized your thyroid treatment, the next step is to consider complementing your conventional thyroid treatment with additional approaches. These may include dietary changes, herbs/vitamins/supplements to help alleviate specific symptoms, adrenal support, metabolism-boosting techniques, stress reduction approaches, and other integrative efforts. To help develop your own integrated thyroid plan, there are various books that provide in-depth information. See information on thyroid-related books for ideas.

6. Get a New Doctor

If your doctor won't discuss options, then you'll need to find a doctor, one who is familiar with thyroid conditions, who will be your partner in wellness. If you want to find the doctor to help, you can search for a good doctor recommended by our fellow thyroid patients at my Top Docs Directory. The Directory features U.S. and international doctors by state or country.

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