QUESTIONS & ANSWERS
If you’re a thyroid patient taking levothyroxine to treat your hypothyroidism, you have questions! As part of the Levothyroxine Deep Dive, you're invited to submit your questions about everything to do with levothyroxine -- differences, costs, generic vs. brand, and more!
What does "optimal" treatment mean for hypothyroidism versus "normal" levels?
How can the extra ingredients in levothyroxine tablets affect my hypothyroidism treatment?
My doctor says that all levothyroxine drugs are the same, and it doesn't matter which one I take. Is that true?
What is Tirosint and Tirosint-SOL, and why is the list price so much higher than other brands of levothyroxine?
What can I do if my doctor says my levothyroxine levels are "fine" but I still don't feel well?
My endo lowered my dose, and now I'm waking up from a sound sleep, choking and gasping for breath. Could the med change cause this?
What does "optimal" treatment mean for hypothyroidism versus "normal" levels? (Kelly R.)
Optimal treatment means that your hypothyroidism medication is safely helping to resolve your symptoms as best as possible. It's not enough to have a Thyroid Stimulating Hormone (TSH) level that's in the normal reference range (usually .5 to 5). You may need a TSH level that's "optimal," usually below 2.5. AND, your treatment needs to provide relief from hypothyroidism symptoms, which can include fatigue, weight gain, depression, anxiety, brain fog, constipation, and many other commonly-seen complaints. You can learn more about optimal treatment in the Levothyroxine Deep Dive Part 3 webinar and guide.
What's the best way to take my levothyroxine? (Marcella S.)
Ideally, you should take your levothyroxine in the morning, at least an hour before eating, drinking coffee, drinking milk, or taking supplements that contain iron, calcium, or magnesium. When it comes to calcium, iron, and magnesium, it's best to take it at least three to four hours apart from your levothyroxine. Also, be careful to avoid calcium-fortified juices within three to four hours of your medication. Detailed guidelines are outlined in the Levothyroxine Deep Dive Part 3 webinar and guide.
How can the extra ingredients in levothyroxine tablets affect my hypothyroidism treatment? (Bob G.)
If you are taking Synthroid®, Levoxyl®, Unithroid®, or generic levothyroxine tablets, you should be aware that your tablets contain a variety of extra ingredients, known as excipients. They are used as fillers, binders, coatings, and dyes in the tablets.
Excipients can include:
Acacia -- derived from tree bark, and a known trigger for seasonal allergies
Povidone iodine -- an ingredient that's problematic for people with iodine allergies
Lactose -- which can cause symptoms in people with lactose intolerance
Starch -- which can contain gluten, an issue for people with gluten sensitivity or celiac disease
Dyes -- which some people are sensitive or allergic to and can cause symptoms and reactions
If you have allergies or sensitivities to these extra ingredients, you may have side effects from your levothyroxine tablets, or they may not work well for you.
For more details on excipients, dyes, and extra ingredients, see Part 1 of the Levothyroxine Deep Dive.
My doctor says that all levothyroxine drugs are the same, and it doesn't matter which one I take. Is that true? (Pablo A.)
All levothyroxine drugs are not the same. Here's the rundown.
Levothyroxine comes in three forms: tablets (Synthroid®, Levoxyl®, Unithroid®, and generic tablets), gel caps with liquid levothyroxine (Tirosint®), and liquid oral solution (Tirosint®-SOL).
Among the tablets, different fillers, binders and dyes (excipients) mean that some tablet formulations may cause sensitivity in some people taking them. In addition, because levothyroxine potency can vary -- FDA regulations require it to fall within 95 to 105% of the stated potency -- even the same dosage of levothyroxine can have different potency, depending on which company makes it. Also, the liquid forms of levothyroxine – Tirosint capsules, and Tirosint-SOL oral solution – are shown in research to be better absorbed by people with allergies, sensitivities, or digestive and absorption problems. Bottom line: All levothyroxine drugs are not the same.
For more details on excipients and potency, see Part 1 of the Levothyroxine Deep Dive.
What is Tirosint® and Tirosint-SOL®, and why is the list price so much higher than other brands of levothyroxine? (Linda B.)
Tirosint® and Tirosint®-SOL are special forms of levothyroxine. Tirosint® is liquid levothyroxine, in a gel capsule. Tirosint®-SOL is straight liquid levothyroxine, taken as an oral solution from individually-dosed ampules.
Because they have no dyes, and very few excipients, the Tirosint forms of levothyroxine were initially recommended for people with allergies and sensitivities. Also, research has shown that Tirosint® and Tirosint®-SOL are better absorbed by people with digestive and intestinal issues, including Irritable Bowel Disease/Syndrome (IBD/IBS), Crohn's disease, ulcers, and other conditions that cause absorption problems. More recent research has now shown that the Tirosint® and Tirosint®-SOL forms of levothyroxine are better absorbed in general, and as a result, more patients have switched to these treatments, and more doctors are recommending it.
The list price of Tirosint® and Tirosint®-SOL is over $100 a month, and due to interference by pharmacy benefit managers, many patients have an insurance copay of $60 to $100 or more per month. IBSA, the manufacturer, has created two programs to ensure that any patient who can benefit from Tirosint® or Tirosint®-SOL can afford the medication.
For those with insurance, the Tirosint® copay savings program discounts your copay, and with insurance, almost all patients pay no more than a $25 a month copay. For those without insurance, or with minimal prescription drug coverage, the Tirosint® Direct program allows you to fill your prescription by mail order from designated pharmacies, and pay $50 a month, or $120 for a three-month supply.
For information on the Tirosint® copay savings card: go to https://Tirosint.com/patient-savings-resources/ways-to-save/copay-savings-card.
Download a Tirosint® copay saving card: https://coupon.tirosint.com
For information on how to participate in Tirosint® Direct, go to: https://Tirosint.com/patient-savings-resources/Tirosint-direct-program
For more information on the costs of Tirosint® and other levothyroxine drugs, see Part 2 of the Levothyroxine Deep Dive.
"I had Graves' disease, and then was diagnosed with fibromyalgia and lupus after that. It wasn't the best of time. I had a full thyroidectomy last September 2019 since then I've gained weight, my blood tests have been checked and my levothyroxine levels are fine. It's really dragging me down. Can you advise any help for me please?" (Helen)
"Your levels are fine." "Your levels are normal." When it comes to managing your hypothyroidism and relieving symptoms, these statements by doctors are really NOT helpful. The first question is: What does your doctor mean by "fine"? You need to know the actual test levels -- AND the reference ranges for each test. And then, compare those results to what we know to be the "optimal" levels for the majority of thyroid patients. You can learn more by watching the Levothyroxine Deep Dive webinar on Resolving Levothyroxine Challenges, located at: http://www.mary-shomon.com/levothyroxine-challenges - and specifically, check out this information on "Optimal Thyroid Levels," at https://www.mary-shomon.com/levothyroxine-challenge1
"No matter what Levothyroxine I take it causes my heart to go into Afib my doctor won’t do anything else, just the same thing over and over and my TSH is so high." (Carolyn)
Being overmedicated on levothyroxine is a known risk factor for atrial fibrillation -- "afib" -- but it sounds like you have a particular sensitivity.
Obviously, a good starting point would be an evaluation by a cardiologist, to determine what might be going on.
As far as your thyroid medication, one option would be to discuss with your doctor whether it would be an option to take partial doses of Tirosint-SOL oral solution, and slowly increase the dosage over time, based on your tolerance and hopefully, without any a-fib symptoms.
Integrative physicians would also recommend that you have your adrenal function evaluated, because this sort of intolerance to thyroid medication is sometimes reported in patients with adrenal dysfunction.
"My endo has been changing my dose for the last year. Starting w/125 mcg down to 88mcg. I've been waking up from a sound sleep, choking and gasping for breath. Could the med change cause this?" (Gary)
In your shoes, I would first want a sleep study to figure out what's going on. It could be sleep apnea, which is a condition that is more common in people with hypothyroidism. Another question is whether the drop in dosage has left you borderline hypothyroid, or hypothyroid, or less "optimal." A first step is to know the actual test levels -- AND the reference ranges for each test. And then, compare those results to what we know to be the "optimal" levels for the majority of thyroid patients. You can learn more by watching the Levothyroxine Deep Dive webinar on Resolving Levothyroxine Challenges, located at: http://www.mary-shomon.com/levothyroxine-challenges - and specifically, check out this information on "Optimal Thyroid Levels," at https://www.mary-shomon.com/levothyroxine-challenge1
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