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  • Hashimoto's Encephalopathy

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    Old 01-10-2005, 09:27 AM   #1
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    Join Date: Oct 2004
    Posts: 41
    trian1 HB User
    Hashimoto's Encephalopathy

    Just wondering if anyone here has heard of this or has it?
    I have had hashi's for almost a year (that I know of) and have been having some very weird things going. I was thinking that it was reactions to synthroid, so my doc switched my to Levoxyl. I am still have things going on.
    These "episodes" I have are very similar to an epileptic seizure, with feeling like a odd case fo dejavu, then I feel extremely sick to my stomach, then I am very tired and just feel "out of it" all day. They seem to be happing a few times a week. I very seriously doubt it is epilepsy as I have no involuntary twitching nor do I loose consciousness.
    It may sound weird, but my mind just does not feel right. I get the random, odd thoughts from my past. Not to mention, I have a very difficult time finishing sentences because I loose my thought.
    It may just be that I am on my way to getting more of a psychological diagnoses as opposed to a medical one (if you know what I mean). I am just trying to figure out what is going on with me.

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    Old 01-10-2005, 12:01 PM   #2
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    Join Date: Jul 2002
    Location: Belleville, Il, USA
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    NodiGoiterGirl HB User
    Re: Hashimoto's Encephalopathy

    I have heard of it but actually just recently. I posted it in a previous post having to do with treatment of Hashimoto's Thyroiditis. Someone talked about their doctor treating them with steroids for the Hashimotos antibodies. I came across the encephalopathy in my research. Seems that they use steroids to try and treat this too. I'm not sure what the tests are to determine if you have encephalopathy or not but it has to be some kind of antibody test. It is a very rare disease but is more common with those that have Hashimoto's thyroiditis.
    Wish I could help you more, but I don't think anyone that is on this board has been diagnosed with it.
    Good Luck,

    Old 01-10-2005, 04:32 PM   #3
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    Posts: 41
    trian1 HB User
    Re: Hashimoto's Encephalopathy

    Thank you for replying.
    I am very doubtful that this is what I have, but I just want answers as to what is going on. These episodes are so scary to go through and to not know why it is happening is even scarier.
    Thankfully, this new doctor is willing to do test to try and figure it out. So, I guess it will be a process of elimination.
    Anyway, thanks for the input.

    Old 11-29-2007, 06:54 PM   #4
    Join Date: Nov 2007
    Location: SLC, UT, USA
    Posts: 5
    annan HB User
    Re: Hashimoto's Encephalopathy

    I have the EXACT same episodes that you describe! You are the first person I've found who describes what has been happening to me, minus the upset stomach. I was diagnosed with Hashimoto's Disease in February 2007 and have been described as an "atypical" presentation by every physician I've seen. The latest "atypical" symptom is these strange seizure-like episodes. The first was in July and was severe. I went to the Mayo neurology unit and was tested for 5 days with EEG, EKG, halter monitor, spinal tap, etc. I do not have encepholopathy nor epilepsy, but the studies were inconclusive as to why these episodes happen. Unfortunately, the episode did not happen during that visit, but happened 3 times the week following, then none for 2 months, and now almost daily for 4 weeks. They are getting worse and are completely unnerving, not only while it is happening, but for the period of time after when you are completely "out of it". Did you ever find out why they are happening to you?

    Last edited by annan; 11-29-2007 at 07:02 PM.

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