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

I live in a country where

Submitted by just_joe on Thu, 2018-01-04 - 12:28

I live in a country where doctors DO NOT talk to each other <<<< OK fine.. If you have information about the medications he takes have you giving that information to all of the doctors??? Reason is a medication that treats one issue can counter medication that treat a different issue.As for AED's I am well aware of them and have only been using them for 50+ years. I took the medication your son was taking. I also know that blood tests were to be done yearly if a person was taking it. Other medications require tests and yes some meds work in the liver and others in another part of the body. Did you understand what I said about weaning your son off AED's??? Did you think of that at any time rather then keeping him on the amount of medication he is taking when he could take a lesser dosage or even NO AED's??As for valporic acid and the research you did fine I admire your work but I also know that there were no computers in homes back in the 1980's. In your post you talked about VPA and said nothing about the other AED which you say he had been changed to. Now you are worried about the VPA which he isn't on anymore. So yes the removal and switch could have done something to his system. Have you thought of that being why he seems to have more energy or runs around and is hyper now???I haven't done much research and have only posts from information I have obtained during the years with the medications and other procedures I have had with epilepsy. So if I upset you then understand that the group of neurologists I have been seeing since 1971 is one of the groups of neurologists that do drug tests for new medications here in the states. Have you ever thought about getting your country to work on getting your doctors communicating with each other?? I have a PCP and anything any of my other doctors know that the information on what they do to me needs to go to him. He also knows what he has information that does need to go to them. They all have all of the medications I take listed in their files. That information also includes over the counter meds too. If you have seen ads for medications on TV all that itty bitty writing is side effects for those medications. I generally check out the side effects to the over the counter meds because some of them have "possible seizures" So those meds can cause seizures in seizure prone people and yes epilepsy is seizure prone.

I live in a country where doctors DO NOT talk to each other <<<< OK fine.. If you have information about the medications he takes have you giving that information to all of the doctors??? Reason is a medication that treats one issue can counter medication that treat a different issue.As for AED's I am well aware of them and have only been using them for 50+ years. I took the medication your son was taking. I also know that blood tests were to be done yearly if a person was taking it. Other medications require tests and yes some meds work in the liver and others in another part of the body. Did you understand what I said about weaning your son off AED's??? Did you think of that at any time rather then keeping him on the amount of medication he is taking when he could take a lesser dosage or even NO AED's??As for valporic acid and the research you did fine I admire your work but I also know that there were no computers in homes back in the 1980's. In your post you talked about VPA and said nothing about the other AED which you say he had been changed to. Now you are worried about the VPA which he isn't on anymore. So yes the removal and switch could have done something to his system. Have you thought of that being why he seems to have more energy or runs around and is hyper now???I haven't done much research and have only posts from information I have obtained during the years with the medications and other procedures I have had with epilepsy. So if I upset you then understand that the group of neurologists I have been seeing since 1971 is one of the groups of neurologists that do drug tests for new medications here in the states. Have you ever thought about getting your country to work on getting your doctors communicating with each other?? I have a PCP and anything any of my other doctors know that the information on what they do to me needs to go to him. He also knows what he has information that does need to go to them. They all have all of the medications I take listed in their files. That information also includes over the counter meds too. If you have seen ads for medications on TV all that itty bitty writing is side effects for those medications. I generally check out the side effects to the over the counter meds because some of them have "possible seizures" So those meds can cause seizures in seizure prone people and yes epilepsy is seizure prone.  

I live in a country where doctors DO NOT talk to each other <<<< OK fine.. If you have information about the medications he takes have you giving that information to all of the doctors??? Reason is a medication that treats one issue can counter medication that treat a different issue.As for AED's I am well aware of them and have only been using them for 50+ years. I took the medication your son was taking. I also know that blood tests were to be done yearly if a person was taking it. Other medications require tests and yes some meds work in the liver and others in another part of the body. Did you understand what I said about weaning your son off AED's??? Did you think of that at any time rather then keeping him on the amount of medication he is taking when he could take a lesser dosage or even NO AED's??As for valporic acid and the research you did fine I admire your work but I also know that there were no computers in homes back in the 1980's. In your post you talked about VPA and said nothing about the other AED which you say he had been changed to. Now you are worried about the VPA which he isn't on anymore. So yes the removal and switch could have done something to his system. Have you thought of that being why he seems to have more energy or runs around and is hyper now???I haven't done much research and have only posts from information I have obtained during the years with the medications and other procedures I have had with epilepsy. So if I upset you then understand that the group of neurologists I have been seeing since 1971 is one of the groups of neurologists that do drug tests for new medications here in the states. Have you ever thought about getting your country to work on getting your doctors communicating with each other?? I have a PCP and anything any of my other doctors know that the information on what they do to me needs to go to him. He also knows what he has information that does need to go to them. They all have all of the medications I take listed in their files. That information also includes over the counter meds too. If you have seen ads for medications on TV all that itty bitty writing is side effects for those medications. I generally check out the side effects to the over the counter meds because some of them have "possible seizures" So those meds can cause seizures in seizure prone people and yes epilepsy is seizure prone.

Hi, Joe,if you could just

Submitted by snezana on Fri, 2018-01-05 - 07:20

Hi, Joe,if you could just take the time and actually read what I wrote - you would understand what my question was.You would most certainly see that I'm not worried about VPA, I was talking about the effect it had while my son was still taking it - which was until three months ago.VPA does change the function of thyroid and I was interested if anyone else had the same experience, because it would give me an insight into what I might or might not expect. What I do know is that my son is in a risk group for an altered thyroid function, beacuse he started taking VPA at a very young age and he had been taking it for a very long time. Sadly, thyroid panel test is not something doctors order prior to therapy initiation, so we don't know what his base levels were, nor can anyone say for fact when it all started. As for the lab tests, children who are on VPA get tested more than once a year - my son was tested for both VPA levels and his liver function every three to four months, sometimes even more often than that. The reason for this is that it can be very toxic to children, especially those younger than 2. In my original post I wrote that he was weaned off VPA - which he was, and supposing that all normal people do that by doctor's orders, I surely didn't find it important to say why he was weaned and if he was taking any other AEDs now - because it simply doesn't have anything to do with the question of VPA affecting TSH levels. :)The reason I asked the question in the first place was because subclinical hypothryroidism, as the name suggests, has no clinical manifestations, and it gets detected by accident, as it happened in our son's case. It also means that there are no definitive guidelines - for instance, doctors do not know what mechanisms are responsible and what VPA really does to a thyroid, to induce the changes it does, so it stands to reason why there's: 'more research needed' written under each report that I've read. You don't upset me - you are just wasting each other's time by talking about a subject that's of no interest or benefit to me or my son.In any case, thank you for reading and all the best to you.

Hi, Joe,if you could just take the time and actually read what I wrote - you would understand what my question was.You would most certainly see that I'm not worried about VPA, I was talking about the effect it had while my son was still taking it - which was until three months ago.VPA does change the function of thyroid and I was interested if anyone else had the same experience, because it would give me an insight into what I might or might not expect. What I do know is that my son is in a risk group for an altered thyroid function, beacuse he started taking VPA at a very young age and he had been taking it for a very long time. Sadly, thyroid panel test is not something doctors order prior to therapy initiation, so we don't know what his base levels were, nor can anyone say for fact when it all started. As for the lab tests, children who are on VPA get tested more than once a year - my son was tested for both VPA levels and his liver function every three to four months, sometimes even more often than that. The reason for this is that it can be very toxic to children, especially those younger than 2. In my original post I wrote that he was weaned off VPA - which he was, and supposing that all normal people do that by doctor's orders, I surely didn't find it important to say why he was weaned and if he was taking any other AEDs now - because it simply doesn't have anything to do with the question of VPA affecting TSH levels.   :)The reason I asked the question in the first place was because subclinical hypothryroidism, as the name suggests, has no clinical manifestations, and it gets detected by accident, as it happened in our son's case. It also means that there are no definitive guidelines - for instance, doctors do not know what mechanisms are responsible and what VPA really does to a thyroid, to induce the changes it does, so it stands to reason why there's: 'more research needed' written under each report that I've read. You don't upset me - you are just wasting each other's time by talking about a subject that's of no interest or benefit to me or my son.In any case, thank you for reading and all the best to you.

Hi, Joe,if you could just take the time and actually read what I wrote - you would understand what my question was.You would most certainly see that I'm not worried about VPA, I was talking about the effect it had while my son was still taking it - which was until three months ago.VPA does change the function of thyroid and I was interested if anyone else had the same experience, because it would give me an insight into what I might or might not expect. What I do know is that my son is in a risk group for an altered thyroid function, beacuse he started taking VPA at a very young age and he had been taking it for a very long time. Sadly, thyroid panel test is not something doctors order prior to therapy initiation, so we don't know what his base levels were, nor can anyone say for fact when it all started. As for the lab tests, children who are on VPA get tested more than once a year - my son was tested for both VPA levels and his liver function every three to four months, sometimes even more often than that. The reason for this is that it can be very toxic to children, especially those younger than 2. In my original post I wrote that he was weaned off VPA - which he was, and supposing that all normal people do that by doctor's orders, I surely didn't find it important to say why he was weaned and if he was taking any other AEDs now - because it simply doesn't have anything to do with the question of VPA affecting TSH levels. :)The reason I asked the question in the first place was because subclinical hypothryroidism, as the name suggests, has no clinical manifestations, and it gets detected by accident, as it happened in our son's case. It also means that there are no definitive guidelines - for instance, doctors do not know what mechanisms are responsible and what VPA really does to a thyroid, to induce the changes it does, so it stands to reason why there's: 'more research needed' written under each report that I've read. You don't upset me - you are just wasting each other's time by talking about a subject that's of no interest or benefit to me or my son.In any case, thank you for reading and all the best to you.