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Steroid Responsive Encephalopathy in Association with Autoimmune Thyroidism (SREAT)

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Posted 3/14/2012 6:46 AM (GMT 0)

My husband spent 21 days in three visits to the hospital before he was finally diagnosed.  He presented with stroke-like syptoms, plus weakness and confusion.  Cat Scans and MRI's turned up nothing.  A spinal tap showed a mild irritation in his brain.  Massive steroids brought him back from a near comotose state to paranoia and hallucinations.  Doctors were baffled, but a neuroligist kept consulting with other specialists and they discovered his thyroid levels were elevated.  Nearly 100 days into our nightmare, my husband was finally diagnosed with SREAT.  He has been on Prednisone since the end of January and is finally acting normal.  They will try weaning him of the Prednisone in May.  We are a little anxious.  Does anyone have any experience with the disease?

Posted 8/22/2012 12:16 PM (GMT 0)
i have some experience.
in 2009 i heard first time about this kind of desease.
the therapy with steroides was sucessfull. After one year we reduced to zero.
18 month, i did not have any problems.
4 weeks ago i suffered from stronge headage and nausea and was hospitaliced once again.

high steroide therapy bgoght me back to live.
Now my doctor intends to supress the immune system by Azathioprin.
This dos not have the side effects of steroides.

i would be very glad to get some feedback to this rare Desease.
Thanks and all the best from Austria / Europe
Posted 8/22/2012 11:22 PM (GMT 0)

Hello Rudolph,

I am sorry you have to go through this, too.  But I feel lucky that we both have a diagnosis, since a lot of physicians don't seem to know about SREAT.  I think there are a lot of people who just die from this disease because they are not diagnosed correctly.  I hope you have someone to help you through your ordeal.

My husband is in the third month of steroid reduction and seems to be doing well.  He is seeing a neurologist in San Francisco at the U.S. Veteran's hospital, who has had some experience with these patients.  I am very glad to know about Azathioprin, and will inform my husband, Chuck, about this drug so that he can ask his doctor about it.  Thank you so much.

May I ask how your disease presented itself; did you have hallucinations while you were in the hospital?  How long were you in the hospital and how long was it before you were diagnosed?  What were your steroid side-effects?  Is your condition considered chronic?

I know I have asked a lot of questions and I would be happy to answer any of yours.  I am grateful that you replied to my post.  You are the first one who has done so in five months. 

Thank you,

Suzanne Pershing

Posted 8/27/2012 8:12 PM (GMT 0)
I have a SREAT diagnosis also. I was diagnosed in April 2011. I have the stroke-like episodes, and my most significant symptoms are serious memory problems, concentration difficulty, impaired speech, and impaired balance. I was given IV steroids in the hospital (5 days x 1000 mg a day) and had a miraculous "recovery" but my symptoms came back quickly during tapering. I should add that I also have a few other annoying symptoms like constant tinnitus, occasional olfactory (smell) hallucinations, and auditory (sound) hallucinations. I also get the headaches that most of us get.

My condition is chronic, at least so far. I have not been able to work since Feb 2011, when I had my first stroke-like episode, which is what led to my diagnosis.

There is a website that has links to over 50 scientific papers on HE/SReAt, published since 2003. Over 20 of the articles were published just in 2011 and 2012. It's encouraging to see info getting out there. Anyway, that website with the article links is at: http://henotebook.wordpress.com/case-studies/

Good luck to everyone.
Posted 8/27/2012 8:16 PM (GMT 0)
I forgot to mention that I suffer from extreme fatigue too, which seems to go with the territory. If any of you are on Facebook, there are a couple of really good support forums where you can learn from others with HE/SREAT. The FB page (for those on FB) is: https://www.facebook.com/groups/251477975360/

Remember that SREAT is also called Hashimoto's Encephalopathy. Mayo Clinic coined the term SREAT, but many scientists still use the term H.E.
Posted 8/30/2012 10:38 PM (GMT 0)
Hello ,
glad to have found this site. and forum. In June went thourgh the in and out of er sick not know what was wrong finally admidted to hospital when started haullucations extreme headache couldn't hold water down. was ther for almost 2 weeks and went thourgh 5 neurlogist before they diagnosed it as SREAT. had sezures kidney shut down and liver also start to shut down before they found SREAT as what i had .
Like Straw Princess husband they had done all thoses test plus a egg brain scan and nothing came up there. now on anti sezure med double doses and same with prednisone I''m a diabetic now on insulin instead of other meds with the pred and seizure meds make bloodsugar wacky.
Now they are starting to wean off prednisone see how i do. Ihave the confusuion mood swings have speech problem the trouble reading or even watching tv . someday like today is good i can type and words are ok.others jibberish..i hard when was full functioning person going to college now not sure of what is going to happen next have days walker other days use a cane. then some can just be able to getout of bed is effort.
Posted 8/30/2012 10:55 PM (GMT 0)
I also had the oversenstive to smells in hospital that made me sick hand sanitzers deodrant perfume and anything set me off . have the balance issue.
They have very few anawers on what my out come will be they say could be 80% back to where i was before won't know till off prednisone on that and then maybe anotheter year before sezures since had not had them before that was aware of at least.
My sister says that we lived a live version of the TV SHOW HOUSE which she can now no longer enjoy because of this.
Posted 8/30/2012 11:00 PM (GMT 0)
sorry if seem to jump all over the place here just finding somewhere that has had same thing happen and can get more insight on it helps plus brain is going 90 miles and hour here on the prednisone doen't help thoughts jump around alot

checking out face bbok
Posted 1/6/2013 8:28 AM (GMT 0)
My husband has been weaning from the prednisone for 9 months now. We are grateful that his personality has pretty much returned to normal. Three more months to go before he is completely off the medication. However, this week he has been experiencing some sleep interuptions (rapid movements of hands and feet) and some irritable behavior. I am hoping that this is not the SREAT, but merely stress, which he has experienced in his life before SREAT, but I will mention this to the neurologist at our next meeting.
Posted 1/6/2013 8:31 AM (GMT 0)
Thanks to Nicelodeon for the facebook page and the wordpress site. I will definitely be checking them out.
Posted 2/3/2013 4:52 AM (GMT 0)
Hi,
I was diagnosed with HE, SREAT or as it is also sometimes called now autoimmune encephalopathy in 2006. My symptoms started in 2003 or '04, I think. My body does not tolerate high doses of prednisone so I was treated with cellcept and IVIG infusions. I responded extremely well to that but after about three months, my insurance company decided they would not cover any more infusions. I'm sure it was the cost although they said it was because it wasn't a proven treatment.

Since then it has been the cellcept alone to suppress the immune system. I have to take breaks from it every now and then because I start getting too many infections. Sinus infections and UTIs seem to be my weaknesses. During these breaks from cellcept (which also helps my scleroderma) symptoms from both the HE and the sclero start to return which isn't too much fun, but I look at it as a much need break for my body.
Posted 3/5/2013 5:00 PM (GMT 0)
I have SREAT (aka Hashimoto's Encephalopathy). You can find a lot of really helpful scientific articles about SREAT at this website: http://henotebook.wordpress.com/case-studies/

They are learning more and more about SREAT lately. In the last 3 years over 50 new scientific articles about it have been published. Good luck.
Posted 4/9/2013 6:24 AM (GMT 0)
For anyone out there that may be suffering from autoimmune thyroiditis. I am looking for any supplements that may be working for you. I have lupus also. I am taking bio identical hormones including dessicated thyroid,this is more natural for you than any of the pharmaceutical thyroid meds. I think all drs are very hesitant to presci e this because they get a kick back from the drug co,so will not give armour thyroid unless you pretty much insist. Either the armour or dessicated I have found works the best because it is the closest to what your thyroid makes. I am up to 3grains now. You cannot go by just your TSH alone. Must have free t3 & 4 tested also and also a good idea to do the antibody test done also to be sure there is not any form of thyroiditis. There are many different thyroid problems to rule out. Thank you for listening. And any ideas on a good thyroid support would be awesome.
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