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Hashimoto's Encephalopathy?

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Posted 12/1/2011 10:29 PM (GMT 0)
Hi everyone,

Just wondering if anyone here is dx with Hashimoto's Encephalopathy?

I sure would like someone to chat with about this. I have a host of other autioammune diganosis going on, some pretty rare in themselfs, but this is the rarest I quess. Been hypothryoid for six or seven years, then perxidase antibodys went sky high among a few other antibodys tests. I do feel lucky that I have a great Neurolgist who is on top of things that could dx me because so many others go without a dxs.  I start IV infussions sunday of predisone, for five days and then oral preds. So if anyone has nay info please help me, thanks everyone.

 PS if it was not for forum groups with all that I have going on I believe I would think I was nuts, lol it is so good to talk to others who understand.

Bob the builder54 turn

Posted 1/20/2012 6:40 PM (GMT 0)
HI,
I HAVE THE SAME DIAGNOSIS. HAVE HAD IT FOR ALMOST 4 YEARS. I AM ON PREDNISONE AND WAS ON DILANTIN (FOR SIEZURES) FOR 3 1/2 TO 4 YEARS. BECAUSE BOTH PREDNISONE AND DILANTIN CAN CAUSE OSTEOPOROSIS I AM NOW SWITCHING TO A NEW SIEZURE MEDICINE. I AM ON GENERIC SYNTHROID FOR HYPOTHYROIDISM ......FOR about 1 1/2 YEARS. I HAD A SEIZURE SEVERAL YEARS AGO (WHICH LED TO MY DIAGNOSIS) AND RECENTLY HAD ANOTHER ONE.... WHILE CHANGING TO ANOTHER SEIZURE MED.
I HAVE BEEN DOING GREAT FOR SEVERAL YEARS , WITH A FEW BUMPS. WORKING THE WHOLE TIME. JUST RECENTLY I HAVE HAD A REOCCURANCE OF SYMPTOMS. MY DOC SAID I SHOULD BE OFF MY PREDNISON AND FREE FROM SYMPTOMS AT THIS POINT.???????

WAS MY RECENT PROBLEM DUE TO A REOCCURANCE OF THE HASHIMOTO'S OR RESULT OF CHANGING MEDICINES?????? I WAS NOT THINKING CLEARLY AFTER MY RECENT SIEZURE EVEN THOUGH I RETURNED TO DILANTIN . MY SANITY RETURNED AFTER I RAISED MY PREDNISONE LEVELS....ON MY OWN. I HAVE A NEW ENDOCRINOLOGIST, (MY PREVIOUS ONE RETIRED). I AM NOT GETTING MUCH HELP FROM HIM. ON MY FIRST VISI, WHEN I MENTIONED BEING ON PREDNISONE, HE ASKED ME WHY I WAS ON PREDNISON.
?????? DID HE EVEN LOOK AT MY FILE BEFORE HE WALKED INTO THE ROOM?.

SORRY IF I AM NEGATIVE BUT RIGHT NOW I'M NOT FEELING VERY POSITIVE. I DO NOT WANY ANOTHER SEIZURE. I USUALLY AM DOING OK. ONCE TREATMENT IS STARTED RETURN TO NORMAL IS USUALLY THE NORM FROM WHAT I UNDERSTAND.
Posted 1/23/2012 4:46 AM (GMT 0)
Hi Naida2,
Nice to hear from someone who can relate to this disease. I am also on antisiezure meds carbamizpine. I was put on this before I was dx because of perherial neuropathy but they gave me megga doses of pred IV infusions, and autioammune supressents but I also have UCTD, inflammatory muscle diseases, the HE, bla, bla, bla.

I am so sorry you are going thru the doctor thing, it is so frustrating when you go in looking for answers and you know more than they do about what you need or what you have. My primary just tells me she does not know that much about this dx (HE), so I sort of lead her to what I think I need. Which is great because we make a good team I think.
What kind of seizures do you have if I can ask you? I am interested for a couple of reasons but one being that I have seizure like activity involving bright lights.

thank you for answering my post, there is not a lot of us out there.
Susie
Posted 5/7/2012 5:58 PM (GMT 0)
Hi.  I'm new to this forum.  I was diagnosed with Hashimoto's Encephalopathy last October.  At first they thought I was a psychiatric case because of the dementia, confusion and eventually unresponsiveness (I was pretty much out of it for a couple of weeks) and after two weeks of testing at the local hospital I was transferred to Mass General Hospital where they eventually diagnosed me with HE.  I was given high dose steroids, IVIG treatment and one dose of Rituxan.  After 9 weeks in the hospital including 3 weeks at a rehab center to regain my balance walking, I was released on 40 mgs. of prednisone which has since been tapered down.  I am now at 5 mgs. and doing pretty good and on most days almost feeling like my old self again.  I am also on Levothyroxine which is keeping my thyroid levels stable. 

It's been 8 months now, and although I'm feeling pretty good, I am always concerned about a relapse, however my doctor told me if I do relapse, they will just start over with the steroids until symptoms go away.  I am praying that I am one of the lucky few who have a complete remission.  My doctor says that I will eventually be off the prednisone completely and then we'll see how I do and while I can't wait to be off the prednisone, I'm a little scared at what will happen then.  I have traveled a long and difficult journey, and I hope that what the doctors learned from my illness and my treatment will help someone else. 

If anyone wants to ask me anything or give me any advice I'd be glad to hear from you. Keeping a positive attitude is important so everyone have a great day!

Posted 5/7/2012 11:19 PM (GMT 0)
Angel12, Hi

Nice to meet you. I am sorry that you went through so much with the dx process. It seems we all seem to go through some sort of bad exspeirence getting someone to listen to us. I feel I was a lucky one, I was already dx with lupus, scleroderma, autioammune colitis, raynauds, hyporthryoid, perherial neuropathy and myositis, and bla, bla, thats enough for now. So I think my neurolgist who came into the picture later in the dx process already had some of the dxs eliminated that it could be, from all the others. (Does that make sense)? lol.
Well anyway my symptoms were typical HE and the blood work when done confirmed it. I did not go through what you did, I am so sorry for you. But so glad that you are on your way to recovery.

Flares do happen, they have for me, I was dx with HE in Nov of last year, had the IV infusions in Dec and on autioammune suppressents among others. But stress is a big trigger for me, just went through some life changing stress, my house burned down, nothing left, three weeks later my mom passed away. Well let me tell you the symptoms came crashing back. The balance issues, terriable, the mind, playing tricks, the memory, the talking, not saying or talking right, but a short 6 day dose of preds did help. Not perfect but better.

Let me ask you, do you have a problem with lights, or computer screens, street lights, they seem to really bother me to the point of almost seizure like, without the seizure. it scares the heck out of me. Also do you still have problems with your balance, or is that completely better? What about your speech?
I am still a litttle confussed with HE. Of course it is hard to tell for me what autioammune disease is causing what problems sometimes.
Susie
Posted 5/8/2012 12:34 AM (GMT 0)
Hi Susie,

I am so sorry that you have so many other health issues to deal with and so, so sorry for the loss of Mom and your home.  I have heard that stress can be a trigger for a relapse and you have had major stress!   My dad died last year and it is so difficult to lose a parent.  I'll pray for you.

In answer to your question, I don't seem to have a problem with lights but more with sounds.  It seems that I have supersonic hearing now and some sounds drive me crazy.  My balance is almost back to normal, but I still can't walk for long distances.  I still get very tired sometimes and although my speech is back to normal, I still search for the right words sometimes.  I've noticed that my memory isn't what it used to be and I have to right a lot of notes so I don't forget to do things.  I've also noticed slight problems with fine motor skills like picking up small objects and I drop things a lot, but other than that I'm doing pretty well.   

Because HE is very rare, they don't really know what causes it.  I have a family history of thyroiditis but no one has gotten encephalopathy.  The hardest thing to come to terms with is that this is a relapsing condition, however some people have a complete remission and go on to live a normal life.  The way I look at it is that I have this condition, but thankfully it is treatable, and although I'm not and never will be the same as I was before, I can and will lead a productive, "new" normal life.  I try to take each day at a time with the knowledge that if and when I relapse, I will be able to get through it.  When I first got sick my sister found a wonderful website from a woman named Beverly Seminara, who has HE.  Her information proved invaluable to me.  I've posted the link below.   Thanks for replying and have faith.  I've found out that I'm much stronger than I thought I was and it's true what they say "What does not kill us makes us stronger".  Have a good night.

Celeste:)

www.thyroid-info.com/helpsfaq.htm

Posted 11/16/2013 4:34 PM (GMT 0)

perfect54 said...
Hi everyone,
Just wondering if anyone here is dx with Hashimoto's Encephalopathy?

I sure would like someone to chat with about this. I have a host of other autioammune diganosis going on, some pretty rare in themselfs, but this is the rarest I quess. Been hypothryoid for six or seven years, then perxidase antibodys went sky high among a few other antibodys tests. I do feel lucky that I have a great Neurolgist who is on top of things that could dx me because so many others go without a dxs. I start IV infussions sunday of predisone, for five days and then oral preds. So if anyone has nay info please help me, thanks everyone.

PS if it was not for forum groups with all that I have going on I believe I would think I was nuts, lol it is so good to talk to others who understand.

Bob the builder54 [img]/community/emoticons/turn.gif[/img]

Posted 11/16/2013 4:38 PM (GMT 0)
helo.
my name is Kelly pickel.
have hashimoto's encephalopathy.
been real sick
am losin my ability to spell and write.
would you believe I am literacy coach who teachs children the 21st century reading and writing!

Please help me by emailing any information you have with me

thank you
Kelly pickel
Posted 11/17/2013 11:02 PM (GMT 0)
Hello,

oh I am so sorry that you have been dx with this rare disease. The good thing is, is that they now know what is wrong, and start treating you. Have you started any type of treatments yet? I was dx in 2011  I am much better but still not my normal me. I will  never be the person I was. I also have a lot of other rare autoimmune diseases so I am sort of a medical mess. A friend and I who have HE have put together a book about hashimotos encephalopathy that should be available by Amazon in paper back in the beginning of /Dec. it has all the latest info in it about this disease and it also has around forty patient stories who also have hashimotos encephalopathy. Also about thirty more of family and friends who wrote on their experience's dealing with us with HE>

Their is a facebook group I belong to for HE that has been a life safer for me, why don't you look into it because it helps to get info from others who are sick with the same thing as you. I hope you get better and anything you want to know from me, just ask. Please, don't feel alone.

susie

Posted 5/14/2014 1:46 AM (GMT 0)
Angel12 .. was going to contact you..but no email addy - You still around?
Posted 6/3/2014 10:05 PM (GMT 0)
I suggest that anyone with a rare autoimmune disorder get tested for a mycoplasma infection, a by-product of Lyme disease. (I was never bitten by tick that I know of). I have Hashimoto's and scleroderma and a positive Lyme antibody and mycoplasma infection. I have been on doxycycline for two years with tremendous results. My thyroid antibodies have dropped considerably. Anyone with any auto-immune illness should really, really clean up their diet and drop gluten from their diet-period. Wheat is now all genetically modified and very bad for anyone with autoimmune. Both of my doctors have said this!
Posted 6/4/2014 1:46 AM (GMT 0)
I have an appointment to see a Rhemmy at the end of the summer. Do they normally test for lyme antibodies or should I encourage my GP to do it? I have Hashimotos and SS, but I have constant inflammation, headaches, and brain fog. I'm not taking any medication for either conditions, but the fatigue pain and is taking its toll on me. I'm tired of docs throwing an antibiotic at my symptoms and telling me to see my endicinologist (because I have a noticeable goiter) then my endicrinologist telling me I'm fine because my TSH is normal... Yet I am not fine. I self referred to a Rheummy because I felt like I was getting no where.
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