Does anybody have experience of epilepsy and hypothyroidism at the same time. I understand from various blogs on the internet one condition does bear on the other but I'm not aware if the medication needs to be adjusted. I've had both conditions for 11 years. Any input would be appreciated.
Epilepsy with Hypothyroidism - Epilepsy Research...
Epilepsy with Hypothyroidism
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pezenas
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Hi Pezenas, yes, I have both epilepsy and hypothyroidism. I have had epilepsy for 40 years now and hypothyroidism was picked up through a blood test. Hormones has a lot to do with epilepsy and and also the thyroid. I currently take Euthyrox for Hypothyroidism and Carbamazapine and Phenytoin for Epilepsy. Depending on the level of the hormones, this can affect your seizures. My epilepsy started at the age of 16 (puberty years), I have had a full hysterectomy and am on HRT. When running low on estrogen and depending on hormone levels can exacerbate a seizure.
When I was first diagnosed with hypothyroidism I was simply told by the doctor I should take levothyroxine to stop me feeling tired. My epilepsy had not been diagnosed at that stage. In fact it was not diagnosed at all from my symptoms for nearly 4 years until I had a tonic clonic seizure. No doctor has ever mentioned the connection and as far as I know the prescribed medication has always been for two entirely separate and unrelated conditions. I'll have to sort this out.
Yes i do and mine are kinda connected i suffer from hashimotos and have done for the past 13 years and my brain swelled which left me with seizures so if it wasnt for the hashimotos which is a thyroid problem i wouldnt have seizures i take 125 milligrams of thyroxine but i am always tired wether this is due to other meds i dont no
How interesting. I was diagnosed with epilepsy some 40 years ago. Recently (last year) hypothyroidism was diagnosed. I take at present! ...Phenytoin for Epilepsy and Levothyroxine for the underactive thyroid - this is still being monitored. I started off with 50mcg and now am up to 150mcg daily. Had no idea there is a connection or a problem with both? More research to do 
Hi Harpy yes there is a link, and it's mainly through the medicatin' you know the side effects part where one of them is tiredness plus loads more, what's happening is that the phenytoin is making you hypothyroid at the cellular level, so Levothyroxine is of little use, plus the phenytoin speeds up the metabolism of levothyroxine. Ideally you need T3 adding in to assist, as the tiredness is the hypothyroidism. I have the same problem but talking to the doctor who very few understand hypothyroidism just think they can give levothyroxine and all is hunky dory, as you can feel it's way off base also hence any weight issues you may have too as the calorie needs are 25-50% below normal because of the hypothyroidism
Hope that helps...
Interesting. Me too. Had epilepsy for 40 plus years and recently diagnosed with hypothryoidism. Had no idea until now that these might be connected! Only heard via my consultant for Dupuytrens which is probably also caused by the Primidone I've been taking! I was told to start on 100mg - that was too much. So now on 50mg.
I am in exactly the same situation. Had Epilepsy for 44 years and recently diagnosed with Hypothyroidism. Taking Phenytion..Epilepsy has been controlled for many years but beginning to feel unwell and wondered if there was a connection!
Yes theres a connection, err whether they admit it is a different thing...
Harpy
I started searching the internet for under active thyroid for which I take daily 125mcg levothyroxine. For my epilepsy I take 200mg a day Lamictal. I just wanted to give up the thyroxine and decided to surf the net to find out anything the doctors hadn't told me. It was quite a surprise to see the link with epilepsy. There are pages of the stuff and plenty of information enabling you have more assertive conversations with doctors.
This is crazy, i have been on both meds and have struggle to know my full medical history as my parents were fighting whenever i was sick and i was too out of it to understand enough at the drs. I am also on 125mcg levothyroxine and i am on lamotrogine 300mg i didn't know there was a difference between lactimal and lamotrogine. I still have seizures but i struggle with a toxic enviroment and other issues including an iron deficiency and other things and i am trying to figure out all the things in my medical history. It doesn't make sense for you to start levothyroxine without being diagnosed with a thyroid deficiency and i didn't know it would be used loosely to stop tiredness unless they did tests and didn't fully inform you. I still get really tired and more.
I have epilepsy & take Tegretol slow release on which I've been stable for 16 yrs. I learnt several years ago after a blood test I've hypothyroidism, though showed no symptoms. I did not received any treatment initially, then about 4 yrs ago was put on 25 mcg of levothyroxine which was increase to 50 mcg about 18 mths ago.
I was aware of a possible link and discussed this with my GP. He thought it unlikely and advised me I probably have thyroid diseased. I still show no symptoms of any kind, nor do I feel any different being on levothyroxine apart from slightly more oily skin & hair after starting the higher dose.
Roadrunnergreg in reply to
Hi it's most likely the epilepsy meds that's causing the hypothyroidism and their giving you levothyroxine/T4 and because it's At the cellular level you need your T3 levels checking as that's most likely where the problem is. Hard part finding a doctor that listens and understands...
Hope that helps
I agree. Go look at the side effects of, say, Tegretol. It can cause thyroid issues.
Thank you Pezenas, I was already arming myself with documentary evidence about Lamotrigine which the consultant want to put me on and take me off Phenytoin. I am going to refuse after reading about the side effects. And as I have been taking Pheny. for 40 years think I will carry on. I already have osteo arthritis so don't need any more joint pain and at the moment am suffering depression. I think Lamotrigine would tip me over the edge and I don't see why I should be a guinea pig. Plus I know that Phenytoin now is 4 times the cost it was a few years ago because of who now manufactures it and how it is labelled.
Unfortunately GP's take cost into account sometimes to the detriment of the patient. For example the branded Lamotrigine - Lamictal - I am told costs the practice £52 a month (28 tabs) whereas the generic version, simply called Lamotrigine costs £4 a month. My epileptologist has told me the bio-availabilities of different brands of medication may vary by up to 45% and this may lead to breakthrough seizures or the emergence of side effects. Pharmacists tend to stock different generic preparations at different times. If you are on Lamotrigine INSIST on Lamictal.
Hiya I take phenytoin too, it's the phenytoin that's caused both the thyroid problem as it speeds up the metabolism of FT4 leading to hypothyroidism or even mild hypothyroidism termed sub clinical hypothyroidism. The phenytoin also causes depression and memory loss, learning difficulties too, the herb Bacopa gets rid of all that, I know as I drink a coffee with it in, and works wonders. No medical claims but they've gone I've got memory, no depression, and more...
I was diagnosed with complex partial seizures in 2006, but have had aura and possibly undetected seizures since I was a teenager. In 2009, I was diagnosed with Graves disease, an autoimmune disorder that leads to hypo/hyperthyroidism unless it is controlled. For epilepsy, I take Topamax (or the generic, Topiramate); for Graves disease, I started on Carbimazole and Prednisone, but was switched to Propylthiouracil (PTU). Since I am controlled for a good while, my GP and endocrinologist recommended thyroid radiation therapy to rid myself of the thyroid once and for all. But much of what I've read, on this and other forum, scares me so I'm on the fence about what to do.
Read up on the mushroom Ganoderma for normalising the thyroid/hyperthyroidism. Also look into iodine too inc selenium as they are needed together
Hi chimaribel. My advice would be don't do it! I had Graves disease around 15 years ago, and doctors advised me to have the radiation therapy. I wish I hadn't - had a lot of problems since, including Hypoglycemia and seizures, which I'm pretty sure are connected. Sure some people are fine with it(?) but not me....... Please do your research and think carefully about it. Good luck.
A lot of the time we are very low in B Vitamins essential for brain health and development... a lot of seizure issues are related to low B Vitamins and Magnesium... during carriage and a few months after birth...
I have hypothyroid and partial complex seizures. I had no idea the two conditions sometimes occurred simultaneously. The neurologist at one time even suggested laser surgery even though CT scans and MRI's show no lesion whatsoever. It took 15 years to find a way to control my seizures with medication but the dizziness I feel as a side effect is pretty terrible. I'I'm on Fycompa and oxcarbazepine for seizure control, and I'm on synthroid (175 mcg). I'm about to ask for a full slate of thyroid tests and a change in thyroid medication. I have a great GP who listens to me but he never knew me when all this started. Wish me luck. I am thankful for the shared posts on the web. It validates my own health experiences. Good luck to you Pezenas
Roadrunnergreg in reply to
Hi there, the dizziness you may be feeling may not be related to your seizures but it could be a vitamin D3 deficiency as this is very common with hypothyroidism plus some seizure meds effect vitamin D absorption medication leaflet should show this if it does...
Hope that helps.
Roadrunnergreg in reply to
Get your doctor Check your Vit D3 levels, as hypothyroid people tend to be low in Vit D3 =dizziness, osteoporosis or osteopenia, even some epilepsy meds like phenytoin lower serum D3 check the leaflet to see, or go to drugs.com and look at your meds and hit the professional tab, enlightening from the patient tab, hope that helps...
Luckystay in reply to
Good luck!
I had some seizures over a 25 year period. Anti epileptic meds may cause hypothyroidism in the first place (Epilim, and Tegretol I think). But then again, seizures may have been triggered by a dodgy thyroid.
The has been major research in veterinary medicine on links between the thyroid and seizures in dogs.
If your still having seizures check the side effects oh seizures... Why you having them, epilepsy or medically induced...
I have both. Hormones play a big part. I have fought doctors for years but they won't listen.
From what I understand these medications need to be separated. By a few hours.
I was diagnosed with epilepsy 7 yrs ago and take 500mg Lacosamide daily and two yrs ago i was diagnosed with underactive thyroid which I'm take 125mg of Levo...
levothyroxine have connection with seizures. by reading on internet many people started having seizures just after few days they have started taking levothyroxine tablets. specially 100mg or more in a day dose. so its connected but doctors never accept this.
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