5 Things Thyroid Patients Shouldn't Be Forced to Do

thyroid patients face many frustrating challenges

Being a thyroid patient comes with a number of inherent challenges: managing a chronic disease; working to eliminate persistent symptoms, and doing your best to have a healthy life. On your journey from initial symptoms to wellness, there are five things that thyroid patients should not be forced to do—ever!

1. Thyroid Patients Should Not Be Forced to Argue for Proper Testing

When you go to the doctor and complain of symptoms such as fatigue, weight changes, mood issues like depression or anxiety, or other common thyroid symptoms, your doctor should quickly move to conduct a thorough clinical examination and order a comprehensive panel to evaluate your thyroid. This is even more of an obvious next step if you:

  • Tell the doctor that you suspect a thyroid condition and ask to be evaluated.
  • Share with the doctor any personal or family history of thyroid or autoimmune disease.
  • Are pregnant, as pregnancy is a time when thyroid management is crucial to a healthy pregnancy and baby.

Unfortunately, many doctors do not think to test for thyroid disease, or even when it is requested, refuse to do a thyroid evaluation. Why?

  • Cost containment strategies dictated by HMOs and insurance companies provide disincentives for doctors
  • Restrictive "guidelines" dictate who and when to test for thyroid disease
  • For ego reasons, some doctors are personally obstructive when faced with patients who request specific testing. (There are patients who report doctors saying "I'm the doctor, and I will tell you when you need thyroid testing!")

You should not be forced to argue for proper thyroid testing.

You may have to, however. Some tips:

  • Bring a checklist of risks and symptoms, and ask the doctor to sign and date it, and indicate his/her refusal to do thyroid testing, and ask that it be included in your medical file, and a copy given to you for your records. (This will often shift the doctor's position to greater willingness to run the requested tests.)
  • Write a letter to or file a complaint with your HMO or insurance company ombudsman, laying out the case for why you are requesting testing, and documenting the physician's refusal.
  • Find a new doctor, or consider seeing a cash practice doctor who is not beholden to an HMO or insurance company's narrow dictates.

2. Thyroid Patients Should Not Be Forced to Take Medications That Don't Work for Them

Most thyroid patients, whether with thyroid cancer, Graves' disease/hyperthyroidism, or Hashimoto's disease, for example, eventually end up hypothyroid and require thyroid hormone replacement medication. The go-to, standard thyroid hormone replacement drug most physicians prescribe is levothyroxine, a synthetic form of the T4 hormone. Levothyroxine is the generic name; popular brand names you might know include Synthroid, Levoxyl, Tirosint, and Unithroid.

Some patients, however, do not do well on a particular type of levothyroxine. For example, if you are allergic to acacia or lactose, Synthroid—which includes those ingredients—may trigger allergies in you. A drug like Levoxyl might be a more appropriate choice. If you have absorption problems, or a digestive condition like Irritable Bowel Syndrome, the hypoallergenic, liquid gelcap Tirosint may be a better choice.

Research shows that a subset of patients does better with levothyroxine plus a synthetic form of the T3 hormone—generic name liothyronine, brand name Cytomel. And a subset of you will do best on natural desiccated thyroid (NDT), whose brand names include Nature-throid, Armour Thyroid, and Thyroid WP.

You should not be forced to take medication that doesn't work for you.

You may come up against this challenge, however, for several reasons:

  • Many conventional physicians often are not aware that a brand like Tirosint may be a better and more effective alternative for some patients, compared to other levothyroxine drugs.
  • Many conventional physicians are opposed to the addition of T3 or the use of NDT drugs.
  • Official guidelines—often considered mandatory by many HMOs and insurers—discourage use of any thyroid hormone replacement medications except for levothyroxine.

If your thyroid medication isn't working, some tips:

  • Ask the doctor to try a different brand of levothyroxine, as a starting point. If you have absorption issues or allergies, ask specifically for Tirosint, and ask the doctor to write it as "dispense as written" (DAW) with no substitutions.
  • Ask the doctor to test your Free T3 level. If it is low, low-normal, or not at least the mid-point of the reference range, ask the doctor if he/she is willing to do a trial to add T3 to your T4 drug, with retesting to ensure that you are not overmedicated or undermedicated.
  • Ask the doctor to do a trial of switching you to NDT, with retesting to ensure that you are not overmedicated or undermedicated.
  • If the doctor refuses, put in a written request to your doctor, and copy to the HMO or insurer if necessary, and keep a copy for yourself. File a request or complaint with the ombudsman if necessary.
  • Consider switching to a more integrative physician, or a cash-practice physician who specializes in thyroid hormone balance. These doctors are typically more open-minded to use of T3 and NDT, as they are not restricted by corporate rules and narrow treatment guidelines.

    3. Thyroid Patients Should Not Be Forced to Self-Medicate

    Some of you may become so frustrated with your inability to get proper testing and treatment that you make the decision to purchase your own thyroid drugs without a prescription and self-medicate. In addition to being illegal for the most part, this is a decision that can be dangerous, for a number of reasons:

    • You risk getting drugs that are not potent, superpotent, may not even contain the stated ingredients, or may have unwanted contaminants that pose risks
    • You risk being overmedicated, which can cause dangerous heart rhythm irregularities, such as atrial fibrillation, as well as many other debilitating symptoms
    • If you are pregnant or become pregnant, you could put your pregnancy and baby at risk without the proper dosage of medication and monitoring

    You should not be forced to self-medicate with thyroid drugs.

    Again, if you are frustrated, you may have to mount an assertive campaign with your HMO or insurer to get to the right doctor and the right treatment options. This may involve letters and filing complaints. If you have the financial resources to do so, the simplest solution is to opt out and see a recommended physician with expertise in thyroid evaluation and balance. (Note: this is often NOT an endocrinologist.) Usually, however, these physicians do not take insurance, Medicare, Medicaid, or belong to HMOs, and run cash practices.

    4. Thyroid Patients Should Not Be Told That They're Drug-Seeking

    Decades ago, there were some unscrupulous doctors who prescribed amphetamines ("speed") and thyroid medications for weight loss. Intensive oversight and enforcement efforts rooted out most of these doctors. Still, the stigma remains, and there are doctors who automatically assume that an overweight woman or athlete who comes in and asks for thyroid testing and treatment is "drug-seeking"—looking for "stimulant" medication as a solution for weight loss or for improved athletic performance. You should not be dismissed as "drug-seeking" if you request thyroid testing and appropriate treatment. If you request testing and are dismissed by a physician as "drug-seeking"—again, it's time to mount a campaign with your physician, HMO or insurer.

    • Start by submitting detailed risks and symptoms checklist, and asking the doctor to sign, date, and note that he/she refused thyroid testing. Make sure a copy is included in your medical file, and keep a copy for yourself.
    • Write to or submit a complaint to the ombudsman at your health insurance company or HMO, and include the signed risks and symptoms checklist.
    • If you have the resources, consider opting out for a more open-minded practitioner outside your HMO or insurance coverage.

    5. Thyroid Patients Shouldn't Be Forced to Endure Insensitivity

    Have you heard any of these statements?

    • Thyroid cancer is the "good" cancer.
    • You're blaming your thyroid, but you're just fat and looking for an excuse.
    • You look fine. I don't believe you really have a problem.
    • You have "fork in mouth disease." You must be eating all the time to keep gaining weight. It has nothing to do with your thyroid. (This "fork in mouth" line was actually said by an endocrinologist to a woman who was a marathon runner, subsisting on 1,200 calories a day, by the way!)
    • You don't need thyroid treatment, you need a psychiatrist. You have a "somatic" problem—it's in your head.
    • All you need is spinning class and caffeine to solve your thyroid problem.​
    • Sofia Vergara has a thyroid problem, and she's not fat!
    • and so on....

    You should not have to put up with insensitive, ridiculous, and downright cruel remarks from doctors, the public, the media, co-workers, friends, and family members.

    But what do you say or do? Honestly, if your doctor is the one saying any of these things, there's only one solution: it's time for a new doctor.

    For friends, family, and coworkers, a good starting point is to share a copy of this "open letter to family/friends of people with thyroid disease" with them. It may help them to better understand what you are going through.

    You may also find that it's helpful to share your stories, and get support and advice from other thyroid patients who have heard it all—and then some—already. You'll find a supportive community of patients at Thyroid Support at Facebook, moderated by Mary Shomon.

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