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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone With TLE Also Have A Thyroid Issue?

A MyEpilepsyTeam Member asked a question 💭
Brisbane, AU

So, I found out something interesting today basically by accident. The GP ordered I had my health assessment with is getting me to do a blood test which includes thyroid tests TSH, TFT

I've never had these before. Originally I didn't really think much of it and just thought it was probably just a standard test. will admit I do have some of the symptoms of thyroid issues. Having said that I did look into it and found out that the thyroid gland is basically controlled by the hypothalamus in… read more

September 7, 2023
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member, I may not have TLE, but i have been battling with my thyroid swelling from time to time. My doctor says it is a thyroid nodule which is an unusual lump growth. I thought it was swelling from taking seizure medications for decades. I will have to go to clevlandclinic.org and do a search on thyroid. Hope your thyroid issue will be okay.

September 7, 2023
A MyEpilepsyTeam Member

Yes. I have right "Temporal Lobe Epilepsy" and those tests are done on me almost every time I have a blood test.
In my case, after a blood test a few years ago, it was found that I had too much calcium in my blood and I was referred to an Endocrinologist. As it turned out, one of my "Parathyroid Glands," was overactive and it was causing me to lose calcium from my bones which can lead to osteoporosis - which I now have!
You have 4 Parathyroid Glands located behind (but attached) to your Thyroid Gland, 2 on each side. I ended up having one of them, which was enlarged, removed but, I still have osteoporosis. Dilantin (Phenytoin), doesn't help either because it can cause osteoporosis but, it's a good anti-convulsant. I've been on it for about 70 years so that might explain a lot!

September 8, 2023
A MyEpilepsyTeam Member

I developed Grave’s Disease (benign tumor) and had to have my thyroid gland radioactively ablated (killed). I still have problems maintaining a regular level, even though I get my thyroid hormone orally. My TSH is routinely off. So yes, it seems there is a relationship between epilepsy and thyroid dysfunction. I know of no relatives who have/ had thyroid problems.

September 7, 2023
A MyEpilepsyTeam Member

My blood tests showed elevated TSH and other thyroid hormones.
My GP referred me to an endocrinologist.
But palpation of the gland alone did not give a diagnosis of a link with my epilepsy. As I wrote it in the temporal lobe. I will be interested in your future development and doctors conclusion.

September 7, 2023
A MyEpilepsyTeam Member

I was also on Dilantin for over 40 years and developed osteoporosis so was taken off. But it did cause thyroid problems so meds were changed

September 8, 2023

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