subclinical hypothyroidism with valproate treatment

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Hello, My son has been diagnosed with epilepsy at 17 months. He was immediately put on valproate (in our country, a syrup called eftil) and his seizures stopped. He has been seizure free ever since, but is still on medication due to some eeg irregularities. I have always asked his doctor about his extremely low energy level and medication being its possible cause, but she always denied any connection. He has put on some weight, but, I never thought that weighing 3 kg more than you should can stop a child from running around like the other children of his age do. He didn't sweat, he didn't run, he didn't even like running, and he would often complain of being tired. And then, last year, we accidentally discovered that he had subclinical hypothyroidism, but our doctor denied any connection to the medication, so I did some research and found several studies that did say valproic acid can affect thyroid. The endocrinologist said we should start supplementing the hormone and we did. He was put on 25mcg of levothyroxine, which was later upped to 35mcg. This summer we started weaning him off VPA and we immediately noticed the difference in energy levels. He started sweating, he started running up the hill - now I have to make an effort and keep up with his pace, whereas it used to be me with my hand on his back to ensure he wouldn't stop walking. It's been 3 months that he's off valproate and a couple of days ago I ran a panel and it came back showing hyper - his ft4 levels doubled in a month. (from 16 they went to 32,4). At the time he was still on synthroid, as the doctor prescribed - she still doesn't believe valproic acid was the culprit, and suggested the dose 35mcg should be continued till April, when were were supposed to check his blood levels. Since I've been informed that the thyroid goes back to normal 2-3 months after stopping taking VPA, I refused to wait till April and here we are - slightly hyper. I've been wondering if any of yo guys had a similar situation. I can't find any information on stopping synthroid therapy - because people start taking this medication after they've been diagnosed with an autoimmune disease, which my son doesn't have, so I don't know if you have to wean off this medication, or just top taking it? I'm also worried, because I know that being hyper can induce seizures, and since my son has been seizure free for years, I wouldn't want to compromise that. Any thoughts?

Comments

Well if he has different

Submitted by just_joe on Mon, 2018-01-01 - 16:23

Well if he has different doctors they do need to be informing each other of the medications that your son is taking. Understand a medication that is for one thing can counter a medication for something else. Now you posted your son doesn't have autoimmune disease. Can you say that and be certain he isn't? An autoimmune disease is a condition arising from an abnormal immune response to a normal body part. There are at least 80 types of autoimmune diseases. Nearly any body part can be involved. Does everybody's immune system work the exact same way?? Do you need to take medications for a head ache when your friend may not take the same amount? I can tell you that for me I have always had to take the maximum amount of medications for any of my illnesses. No other family member needs the amount I take. However I am one that rarely need pain killers. Wonder what that is... Each person is different. Some people need steroids others don't. Can his body be producing less then what is needed? Yes that is possible. You have a doctor prescribing something that HELPS. I'm also worried, because I know that being hyper can induce seizures, and since my son has been seizure free for years, I wouldn't want to compromise that. Any thoughts? <<< Yes have the doctors talk to each other. Also if he hasn't had a seizure in years then discuss this issue with them since he cane be weaned off seizure medications slowly and that way if he has one they then know the dosage he was on before he has the seizure. which would be the lowest amount he needs to take and be seizure free. My cousin did it and she was seizure free for many years. Also understand a few things 1. seizure medications calm the nervous system down which can cause one to be tired and several other things. 2. Each person with epilepsy does not have the same triggers and that there are many other triggers that are not on the list.I used valporic acid back in the early 80's. It didn't slow me down because I was taking enough phenobarbital to put the average man to sleep for 24 hours. I was tired all the time but I didn't let it stop me from doing what ever I wanted to do. Believe me I did a lot of things and one was to go and do things people thought I couldn't.I have only been living and dealing with epilepsy for 50+ years and I speak mainly from my own experiences.The medication the endTaking him off seizure medications need to be watched because if taken off without the neurologist knowing it can cause him to go into status epilepticus. I know. I stopped taking my meds because I didn't like taking them and hadn't had a seizure in about a year. About 3 weeks later the therapeutic levels were out of my body and I went into status epilepticus having 50 convulsions and hour. It took a little over a month in the hospital and getting the medications built back up before they would release me so I could go home. I hope this helps and he gets the assistance he needs and stays seizure freeJoe

Well if he has different doctors they do need to be informing each other of the medications that your son is taking. Understand a medication that is for one thing can counter a medication for something else. Now you posted your son doesn't have autoimmune disease.  Can you say that and be certain he isn't? An autoimmune disease is a condition arising from an abnormal immune response to a normal body part. There are at least 80 types of autoimmune diseases. Nearly any body part can be involved. Does everybody's immune system work the exact same way?? Do you need to take medications for a head ache when your friend may not take the same amount? I can tell you that for me I have always had to take the maximum amount of medications for any of my illnesses. No other family member needs the amount I take. However I am one that rarely need pain killers. Wonder what that is... Each person is different. Some people need steroids others don't. Can his body be producing less then what is needed? Yes that is possible. You have a doctor prescribing something that HELPS. I'm also worried, because I know that being hyper can induce seizures, and since my son has been seizure free for years, I wouldn't want to compromise that. Any thoughts?   <<< Yes have the doctors talk to each other. Also if he hasn't had a seizure in years then discuss this issue with them since he cane be weaned off seizure medications slowly and that way if he has one they then know the dosage he was on before he has the seizure. which would be the lowest amount he needs to take and be seizure free. My cousin did it and she was seizure free for many years.  Also understand a few things 1. seizure medications calm the nervous system down which can cause one to be tired and several other things. 2. Each person with epilepsy does not have the same triggers and that there are many other triggers that are not on the list.I used valporic acid back in the early 80's. It didn't slow me down because I was taking enough phenobarbital to put the average man to sleep for 24 hours. I was tired all the time but I didn't let it stop me from doing what ever I wanted to do. Believe me I did a lot of things and one was to go and do things people thought I couldn't.I have only been living and dealing with epilepsy for 50+ years and I speak mainly from my own experiences.The medication the endTaking him off seizure medications need to be watched because if taken off without the neurologist knowing it can cause him to go into status epilepticus. I know. I stopped taking my meds because I didn't like taking them and hadn't had a seizure in about a year. About 3 weeks later the therapeutic levels were out of my body and I went into status epilepticus having 50 convulsions and hour. It took a little over a month in the hospital and getting the medications built back up before they would release me so I could go home. I hope this helps and he gets the assistance he needs and stays seizure freeJoe

Well if he has different doctors they do need to be informing each other of the medications that your son is taking. Understand a medication that is for one thing can counter a medication for something else. Now you posted your son doesn't have autoimmune disease. Can you say that and be certain he isn't? An autoimmune disease is a condition arising from an abnormal immune response to a normal body part. There are at least 80 types of autoimmune diseases. Nearly any body part can be involved. Does everybody's immune system work the exact same way?? Do you need to take medications for a head ache when your friend may not take the same amount? I can tell you that for me I have always had to take the maximum amount of medications for any of my illnesses. No other family member needs the amount I take. However I am one that rarely need pain killers. Wonder what that is... Each person is different. Some people need steroids others don't. Can his body be producing less then what is needed? Yes that is possible. You have a doctor prescribing something that HELPS. I'm also worried, because I know that being hyper can induce seizures, and since my son has been seizure free for years, I wouldn't want to compromise that. Any thoughts? <<< Yes have the doctors talk to each other. Also if he hasn't had a seizure in years then discuss this issue with them since he cane be weaned off seizure medications slowly and that way if he has one they then know the dosage he was on before he has the seizure. which would be the lowest amount he needs to take and be seizure free. My cousin did it and she was seizure free for many years. Also understand a few things 1. seizure medications calm the nervous system down which can cause one to be tired and several other things. 2. Each person with epilepsy does not have the same triggers and that there are many other triggers that are not on the list.I used valporic acid back in the early 80's. It didn't slow me down because I was taking enough phenobarbital to put the average man to sleep for 24 hours. I was tired all the time but I didn't let it stop me from doing what ever I wanted to do. Believe me I did a lot of things and one was to go and do things people thought I couldn't.I have only been living and dealing with epilepsy for 50+ years and I speak mainly from my own experiences.The medication the endTaking him off seizure medications need to be watched because if taken off without the neurologist knowing it can cause him to go into status epilepticus. I know. I stopped taking my meds because I didn't like taking them and hadn't had a seizure in about a year. About 3 weeks later the therapeutic levels were out of my body and I went into status epilepticus having 50 convulsions and hour. It took a little over a month in the hospital and getting the medications built back up before they would release me so I could go home. I hope this helps and he gets the assistance he needs and stays seizure freeJoe

My son was weaned off VPA and

Submitted by snezana on Tue, 2018-01-02 - 04:18

My son was weaned off VPA and is now on lamictal (doctor's orders). He is not being taken off AEDs, he is currently on a very small dose of thyroid hormone (for subclinical hypothyroidism, which we discovered by accident - there were no obvious symptoms) - and his latest results, as I've previously said, show that he is now hyper, not hypo - which should be the reason for not administering the hormones any more. When I say he doesn't have an autoimmune disease - I mean autoimmune disease of the thyroid, since the markers for it were negative (TPO Ab, TSHrat, TSI). We are going to repeat the lab to make absolutely sure. I live in a country where doctors DO NOT talk to each other and where it is possible for a neurologist to tell you that she is absolutely sure VPA cannot alter thyroid performance, only to admit it actually can, after I've brought her the research (various sources) + the answer I got from a member of a team that looked into the relationship of VPA and thyroid.I also understand that everyone is different and that what works for you might not work for me. However, my question was connected to thyroid issues + AEDs, not with weaning off AEDs, especially not: weaning without a neurologist.

hi Snezana,I think you are on

Submitted by Amy Jo on Tue, 2018-01-02 - 12:50

hi Snezana,I think you are on a good track, wish I had something helpful to say. No doc will be as motivated as you are in prioritizing your child's health or researching unusual aspects of drugs. I'm glad he's got you.