Epilepsy Talk

Your Thyroid…What Everyone with Epilepsy Should Know | September 3, 2017

Touch your neck, right above your collarbone, and you’ll find a little gland called your thyroid.  It only weighs an ounce, yet this thyroid’s hormones control your metabolism.

When those hormones are balanced, everything is fine.

But if your thyroid makes just a little less or more than you need…it could cause havoc, both with how you function and the effectiveness of your AEDs.

Hypothyroidism – or an underactive thyroid – is the real baddy.  It can result in fatigue, weight gain, constipation, fuzzy thinking, low blood pressure, fluid retention, depression, body pain, slow reflexes, and much more.

On the other hand, hyperthyroidism – an overactive thyroid — can result in a rapid metabolism and symptoms like: anxiety, insomnia, rapid weight loss, diarrhea, high heart rate, high blood pressure, eye sensitivity/bulging eyes, vision disturbances, and many other concerns.

Although any kind of hormone irregularity is cause for concern, endocrinologists, generally consider hypothyroidism the worse of the two.

Which leads us to the bad news…

In a new study, when researchers at the American Academy of Neurology called for hormone testing…

The team found that about 32% of epilepsy patients who were taking anti-epileptic drugs (both in mono or polytherapy) had thyroid hormone abnormalities.

The most relevant finding was in patients who were taking Depakote (Valproate) as a  monotherapy.

Previous studied had shown that Depakote increased the levels of thyroid-stimulating hormones which, in turn, can lead to hyperthyroidism.

However, when recent research compared anti-epileptic drugs, they found that the following drugs actually encouraged hypothyroidism.  (The no-no.)

These drugs were:

Depakote — Valproate (61.5% greater incidence of hypothyroidism)

Tegretol — Carbamaepine (47.9% greater incidence of hypothyroidism)

Dilantin — Phenytoin (17% greater incidence of hypothyroidism)

Although both thyroid irregularities can be successfully treated, you have to know they exist, in order to alter the situation.

If you have hypothyroidism, researchers suggest large doses of selenium — a common over-the-counter supplement — to bring your thyroid levels back up. You can probably get enough selenium by taking a good multi-vitamin and mineral product.  Just make sure you’re getting 200 mcg per day of selenium.

Hyperthyroidism is relatively rare and can be treated successfully with anti-thyroid drugs, prescribed by your doctor.

However, the bottom line is that thyroid illness is more common than you think.

That’s why we need to be pro-active about thyroid testing.

When you go to your internist, insist on running a full thyroid panel of T4, T3 and TSH (Thyroid Stimulating Hormone).

Most docs will only test your TSH and tell you everything is ducky if you don’t spell out the full panel requested.

(Believe me, I speak from experience.)

Also, please take the initiative to ask for your results and check them against the norms, before you decide to take any action.

If you think you do have hypothyroidism, it’s as easy as taking selenium or a thyroid supplement.

And if your testing shows you to have hyperthyroidism, it’s just a matter of taking an anti-thyroid medication.  And in a little time, it will probably “fix” itself.

But make sure of your results first!

Your thyroid might be the last thing on your mind.  But please, if you’re on any kind of AED, ask your doctor to run a full thyroid test panel once a year.

It could make a world of difference in how you feel.

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  1. Good morning Phylis & once again you’ve furnished some ENLIGHTENING information.

    My wife has hyperthyroid (overactive) & it does play havoc in her day to day living, with a lot of the symptoms you outline). The tests you suggest I will have her ask her endochronologist (T3, T4 & TSH) to run a full panel test! She is also taking Anastrozole to lower her estrogen after having 2 breast cancer surgeries.

    I might mention too that for that past couple of weeks She has been feeling like she will faint & that really has frightened her. Spoke to our primary care doctor & is no longer taking Lisinopril, a drug to combat high blood pressure in hope her BP readings will improve.

    Enough said Phylis, I wish you a very nice Sunday & appreciate all of your newsletters with very informative information.

    Kindest Regards from HOT & HUMID So. California.

    Email: ajgolfnut5@gmail.com

    P.S. I am the surviving twin brother who passed from SUDEP on Nov. 24, 2014 & wish he had not been under the care of the VA.

    I believe awhile back you sent me some referrals or websites to log onto for emotional support in the sudden loss of my brother…who I miss DEARLY & if time permits would really appreciate you emailing me them. Take Care My Friend.


    Comment by AL "AJ" Johnson — September 3, 2017 @ 10:59 AM

    • I think the full panel test of T3, T4 & TSH will help to better define her condition.

      Hoping also that taking her off Lisinopril will improve her BP readings.

      Here’s some info on Lisinopril:


      Lisinopril can cause hypotension, which is a side-effect of the med.

      How is her breast cancer recovery coming?

      The Epilepsy Foundation has a webpage on support for the bereaved.


      And the SUDEP organization also has a webpage:


      And here’s an interesting article from The New York Times:

      A Risk for Sudden Death in Epilepsy That Often Goes Unmentioned

      And for what it’s worth, Facebook has a page on SUDEP Global Conversation


      Hope this helps…


      Comment by Phylis Feiner Johnson — September 3, 2017 @ 12:21 PM

      • Good morning Phylis & thanks for your prompt reply.

        My wife has a little less than a year to go on her Oncology checkups & having to take Anastrozole RX, which lowers the estrogen, which they’ve found that high levels can cause cancer.

        A suggestion to your women readers about being diagnosed with Breast Cancer in any stage…please make sure to have at least 2 Radiologists read the films in order to share with an Oncologist. My wife was diagnosed with Stage 1 Breast Cancer in her Left Breast, was immediately scheduled for surgery, had the first surgery only to be called back within a week or so to have a 2nd. surgery in order to increase the margins for surgical removal of more tissue surrounding the site. Thank God She since then has had 2 Mamograms every six months, sees her Oncologist every 3 months where they draw blood & thru God’s Mercy & medical intervention hopefully She’s going to continue to be cancer free!

        Thank you as well Phylis for the bereavement links, which I will visit later on today.

        Should any of your readers like to contact me I will provide my email: ajgolfnut5@gmail.com

        Wishing you well my friend.



        Comment by AL "AJ" Johnson — September 3, 2017 @ 12:49 PM

      • AJ, thanks LOTS for the Radiologist and Oncologist advice. I hope people will read this and benefit from it.


        Comment by Phylis Feiner Johnson — September 3, 2017 @ 1:08 PM

  2. Wondering if a tongue that feels almost a bit too wide for the mouth might also be a symptom….. Seems like I have a tendency to bite the sides of my tongue…. almost as if my tongue doesn’t quite fit. It’s especially ‘fun’ after a grand mal….of which I had a short one last night…each side is tender…and/or my molars have grown quite sharp.


    Comment by Ellen LaFrancis — September 3, 2017 @ 12:10 PM

  3. wow – a bad scolding was this article…take my pills! Grr! Not sure they ever told me the thyroid and seizures were related – but mine is a hypothyroid – low acting!! And I just found out my mom (who has never had seizures) has been diagnosed recently (long after mine) I take synthroid for it – but must admit – I hate it says take an hour before eating! That means – take when wake up – but can’t take seizure meds for the hour either! Confess – lots I will just take all at once and eat! Since I see lots commenting on high thyroid – is my case weird? Maybe not seizure related!?


    Comment by floodcolleen — September 5, 2017 @ 10:43 AM

    • If you have hypothyroidism, researchers suggest large doses of selenium to bring your thyroid levels back up.

      You can probably get enough selenium by taking a good multi-vitamin and mineral product. Just make sure you’re getting 200 mcg per day of selenium.

      And of course, take your synthroid.

      If you have any seizure doubts, your endocrinologist or neuro may be able to answer that question.


      Comment by Phylis Feiner Johnson — September 5, 2017 @ 10:49 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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