Epilepsy Talk

Your Thyroid…What Everyone with Epilepsy Should Know | March 5, 2016

Touch your neck, right above your collar-bone, 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. I take carbamepine twice a day, once a month I have to get my neck cracked.


    Comment by michele metzger — March 5, 2016 @ 1:48 PM

  2. Ooooooooooh. 😦


    Comment by Phylis Feiner Johnson — March 5, 2016 @ 4:16 PM

  3. I love your writings. They always make me dig deeper. I got here as Shadow my Dalmatian is epi for almost 4 years now. Needless to say that living with an epileptic dog is horrendous, let alone medicating knowing the ‘drugs’ are neurotoxins. And believe you me, there is knowledge out there and also a lot of KNOWING, but I have not had much help from anyone. So I research and its one of the best things I have done. Thanks for all your interesting input! 🙂


    Comment by RAW PASSION UK — March 5, 2016 @ 4:24 PM

  4. Thank YOU for the compliment!

    Hope that Shadow remains in good health.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 5, 2016 @ 10:15 PM

  5. I take Tegretol twice a day and have been for almost 15 years. When I was 20 I was diagnosed with Hashimotos Disease (hypo) whether the two are related is uncertain but my endocrinologist seems to think the drugs play a big role. Very interesting to see you writing on the subject. Thanks!


    Comment by LEOlover7631 — March 5, 2016 @ 10:46 PM

  6. nice article tendencies to have problems with thyroid may also run hand in hand with some epilepsy groups JME runs in my family so do thyroid problems but not everyone has both. Since depakote is prescribed for JME type it would make sense it would be higher. I personally think looking at my family data some (not alll) of this will eventually come back to a genetic disease of hypothalamus


    Comment by Tom — March 6, 2016 @ 8:54 AM

  7. Very interesting concept, Tom.


    Comment by Phylis Feiner Johnson — March 6, 2016 @ 10:11 AM

  8. Great article! I happen to have the “real baddy” (hypothyroidism)as well as epilepsy, but I don’t let it get me down!


    Comment by Joy — March 6, 2016 @ 11:50 PM

  9. Hats off to you, Joy!!!


    Comment by Phylis Feiner Johnson — March 7, 2016 @ 10:00 AM

  10. 2 years ago a blood test showed my thyroid was scraping the bottom, as Mum.s thyroid failed completly + I saw what happened to her I am worried but I’ve never been given another test. Reading this, I will have to insist on another test. I was on valproate at the time for nearly 20yrs but at least that has been removed


    Comment by Miss Gail J Barry — July 31, 2016 @ 5:01 AM

  11. Please go for another test and ask for the full 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.


    Comment by Phylis Feiner Johnson — July 31, 2016 @ 9:07 AM

  12. I have hypothyroidism. What baffles me is the specialists have never indicated my health issues are in any way connected. It’s as if each of them exists in a vacuum! It’s so good to come across articles like this so I can take my own health back. Thank you.


    Comment by Lesley Ward — November 3, 2016 @ 8:34 PM

  13. The first time (about a decade ago) my tsh was low was after I had been on my first anti- seizure med for 3 or 4 mths (I have adult on-set). I had questioned my dr. if they were related & he said of course not. I felt they were. TY for the confirmation! I’ve just tested low again so I will try the selenium & see if that has an effect. I’ve also been reading that one should focus on the adrenals first & that can sometimes help the hypo.


    Comment by Rachel — December 6, 2016 @ 11:47 PM

  14. Rachel, so glad I was of help.

    Try to take the Selenium with food, like all supplements.


    Comment by Phylis Feiner Johnson — December 7, 2016 @ 8:58 AM

  15. Thank you for the article! I have epilepsy and take depakote. Now recently I have been diagnosed with hypothyroidism and take medication for that now too. Thank you for finding the connection for me, I was curious if there was one and if there were any real concerns I should worry about. I’m 27, strong, positive minded. Taking all these pills daily isn’t easy but it’s the new normal for me now… thank you for your research


    Comment by eddiezamora — December 20, 2016 @ 2:30 AM

  16. Glad you made the connection and were able to rectify it.

    And kudos to you on your positive attitude!


    Comment by Phylis Feiner Johnson — December 20, 2016 @ 9:24 AM

  17. How’s does it affect someone with no thyroide who is taking thyroxine.


    Comment by Kelly taylor — January 10, 2017 @ 5:57 AM

  18. I think the thyroxine makes up for not having a thyroid and pumps out artificial hormones.


    Comment by Phylis Feiner Johnson — January 10, 2017 @ 10:25 AM

  19. My wife and and I just read your article, found it to be very informative. She had one question. Is this the norm for all who have seizures? Also if there is a difference of the effects on women versus men.
    In our house there are two of us who have seizures, our 17 year old granddaughter and myself. I am 61 and had my first seizure in 2013. Our granddaughter has had them for 14 and a half years. Any info you may have or where I can find info would be greatly appreciated.
    Thank you for all your hard work doing this page. I find it informative, helpful and a joy to read what you post. Keep up the good work.


    Comment by Sammy Deer — January 10, 2017 @ 8:31 PM

  20. Not all people who have seizures have thyroid problems. It’s just something, seizures or not, you should check regularly.

    Both men and women can have thyroid problems.

    As to whether seizures are inherited, this article may interest you:

    Is Epilepsy Inherited?



    Comment by Phylis Feiner Johnson — January 11, 2017 @ 10:36 AM

  21. Some epilepsys can be inherited, I have metabolic, and I know it runs in mine. I have just had it confirmed after many years; but owing to just dropping weight and now being diagnosed with a cyst, and knowing that these can be hormone related; is it at all possible, that if I have got a thyroid problem? Will my seizures be resolved if this is sorted? Or am I hoping for a miracle.


    Comment by J Bull — April 4, 2017 @ 12:46 PM

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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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