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About HESA

HESA – the Hashimoto‚Äôs Encephalopathy SREAT Alliance – is a 501(c)(3) ¬†nonprofit organization formed in 2012. It is HESA’s mission to collect, archive, and share information regarding Hashimoto‚Äôs Encephalopathy (‚ÄúHE‚ÄĚ), also known as Steroid Responsive Encephalopathy Associated with Thyroiditis (“SREAT”) or simply Autoimmune Encephalopathy (“AE”) with the public and medical professionals.

Other names used to describe ¬†HE/SREAT are Nonvasculitic Autoimmune Meningoencephalitis (“NAIM”), and Encephalopathy Associated with Autoimmune Thyroid Disease (“EAATD”). ¬†HESA takes no position on the most appropriate name for the disease, however¬†on this website the abbreviation “HE” is generally used as a shorthand way to refer to the condition.

HESA has published a book, “Understanding Hashimoto’s Encephalopathy” which is available for sale at Amazon.com by clicking on this link: “Understanding Hashimoto’s Encephalopathy” HESA also raises funds to support scientific research, and is planning a documentary film project. HESA’s website provides information and links to a variety of resources for patients, physicians, caregivers, and others interested in this poorly understood disorder. We appreciate your fully tax-deductible donations (see the Donate link above). ¬†Please also consider purchasing a HESA cookbook, featuring easy to prepare recipes submitted by HE patients. All proceeds go to support HESA.

PLEASE NOTE!

Although you will find a great deal of information about HE/SREAT on this website, the site is not written, monitored, or maintained by a physician. The site is intended to provide information only. HESA cannot provide medical advice. If you have HE/SREAT, or think you may have it, consult a qualified neurologist, preferably one with experience addressing immune-mediated illness.

Nothing on this website is – nor should it be considered to constitute – medical advice.

13 Responses to About HESA

  • Lynn says:

    Thanks for this. I did not realize that there was finally a Book published about us. I have Ordered it and look forward to reading it. We need to stick together. There are so few of us. We are our best hope for getting help and passing on advice. THANK YOU!!

  • Judy says:

    I am trying to find out more about HE. I suspected my mom has had it for more than 4 years but I could not get a doctor to test her for it until last November and when the test came back positive, the neurologist said it must be a false positive. I called Mayo Clinic Laboratory, where the test was performed, and asked what percentage of their tests are false positives. They said that they are extremely careful in their testing and advised me to find a different doctor.

    I did take my mom to UCLA and the neurologist there is on the fence, says the positive HE test can be due to age, same with elevated protein in her spinal fluid. My mom’s symptoms, (mainly memory loss, delusions, disorientation, sleep problems, etc.), came on suddenly after my mother was taken off thyroid medication for hypothyroidism. But getting her back on thyroid medication did not bring her back to her old self. Her symptoms have not really changed since this started, there doesn’t seem to be progression. She doesn’t have seizures or tremors but has a history of TIA’s which I feel may be thyroid related because once I changed her diet and got her on the right kind and dose of thyroid meds and supplements to lower her high cortisol levels, her high blood pressure, high cholesterol, etc, disappeared.

    Experts with the Alzheimer’s Association sas there is no way my mom has Alzheimer’s. Those in the know at the American Heart Association say it’s not vascular dementia. My mom doesn’t have symptoms of Lewy Body dementia except for the traits common to most dementias. Even my own brain specialists for Lyme disease, which includes two neuropsychologists from Cedar Sinai in LA, say my mom’s dementia is not like any permanent dementia. I just don’t know where to turn.

    • Kyle thompson says:

      If you feel that you mother has H.E. then make sure they check absolutely everything. Be especially careful if you notice shifts from paranoia, psychosis, and delusions. I have recently been diagnosed with H.E. and am lucky to be able to tell you this story.

      About three weeks ago I was walking out of work after a twelve hour shift, I walked out the front door and saw an ‘aura’ in this case a giant bird flying at me. I then experienced a 3 and a half hour Grand Mal seizure. It came on quick and it came on hard. I do not remember anything two days prior to this event. I was placed in a medically induced coma for three days and by the grace of god woke up.

      I had gone to another hospital after a weekend of intense hallucination, psychotic episodes, depression, manic and delusional behavior and was brushed off. This was 9 days prior to the Grand Mal episode.

      My point is that if you feel your mother has H.E. then press for testing, and quickly. Remember that it is a hail Mary when Doctors test for this condition, but push anyway. You could save her life and lower her chances of the more debilitating effects of this hellish disease.

      Thank you and God bless you and your mother.

  • Kyle thompson says:

    I had forgotten to post about the hospital that diagnosed and treated me. I see that you went to UCLA for this so I’m assuming you live in or around Los Angeles. If you have the means then I highly recommend going to Fletcher Allen here in Vermont for a consult. The team at this hospital is amazing.

    Thank you again.

  • Jessie Cheek says:

    I am reading the book Understanding Hashimoto’s Encephalopathy. Thank you for this book!!! My 19 year old daughter has Auto-immune Encephalopathy…diagnosed at MAYO this summer. (After going to many specialists and two trips to MAYO). After a month or two she began getting better on 40 mg prednisone and is now on imuran and IVIG. Her situation seems different from most other people’s. She never had any seizures, or severe movement disorders, or vision problems. Not much found in lumbar puncture or bloodwork, no elevated proteins, only very slightly elevated thyroid anti-bodies. It all began with cognitive decline…progressed to inability to study at all (never finished high school)…sleep problems…other neurological problems, then a psychotic break. Anti-psychotics didn’t work..misdiagnosed as schzophrenia first by local psychiatric hospital, then after much testing and a new neurologist and new psychiatrist, prednisone tried and she began to get better. A second trip to MAYO confirmed Auto-immune encephalopathy. She is currently on Imuran and tapering off prednisone as well as getting IVIG. She is finally able to study a little bit each day and all psychiatric symptoms gone. She never had balance or vision issues either, but emotionally was very withdrawn…still doesn’t talk much, but can handle basic ADL’s finally and smiles again..her extreme irritiability gone. Earlier this year she was diagnosed with Hashimoto’s also, so is taking synthroid. Has anyone else ever had simlar symptoms?…she is very fatigued and gained a lot of weight on prednisone…her cholesterol is up, but happily she hasn’t had other ill effects of medicines yet. We are in a plateau as we tried to lower prednisone too much. Seems that monthly hormones cause a slight set-back…but no one can explain that. She has an insignificant pineal cyst which no one thinks has anything to do with her problem. We are fortunate to have an expert team of doctors helping us with her case (they all say she is not a textbook case of this disease), but I’m still curious if anyone else has had similar thing…no seizures no memory loss, but general cognitive decline and near autistic emotional responses (that is better now that she is on steroids, but she is still mostly flat in all her responses, and not back to her former self at all). She was a very bright child, but when she hit puberty, slowly seemed not to be able to pay attention…we thought she had ADD, but realized later that wasn’t the case at all. She had circadian rhythm disorder since birth…so always went to bed late and woke up late, but later when puberty started couldn’t stay asleep…no narcalepsy…but similar…sleep specialists recognized irregular sleep patterns, but had no physical explanation for it. Now we know it was her Auto-immune disease. We don’t know if she will be able to tolerate lowering the prednisone once the imuran takes effect and the IVIG 12 week treatment is over after Christmas.

    • Susan Foley says:

      oh I am so sorry your daughter was dx with this rare disease. I also have autoimmune encephalopathy. Your question of the flat emotions hit me hard and had to write to you. That was one of the symptoms that I felt was the worst for me. I could not feel deeply about anything. I knew I should but felt like my face and mouth was in not a frown just no emotion at all. My brain wanted to make my heart feel the way it use too. I was also a very happy go lucky person, smiled all the time, laughed all the time, and felt deeply for people and things, and all of that was taken away from me so I feel for your daughter and for you. I have become better, more feeling, but still not that deep, deep heartfelt feeling I use to have. I was dx in 2011. Also there is no such thing I feel as a text book case of HE> everyone is different and present different. I pray your daughter starts to heal, and will once again be able to enjoy her youth. If you would like to contact me I would be happy to answer questions for you. Also we are in the process of writing another book on HE and if you would like to contribute your and your daughters story we would love to have it. I am a member of the HESA board just so you know who I am. Again I am here to help. susie

  • Jo Gilbert says:

    I am terrified after stumbling across this disorder for fear this is my problem. I’ve been hypothyroid for 30 years taking Synthroid. Last year my dr lowered the dose from .150 to .112 because I “seemed” anxious. I gained weight and had a multitude of ailments into this year until May when I had a seizure two weeks after he told me I was in a thyroid storm. Now I’m on an anti-seizure drug and .125 Synthroid but just don’t feel right. Keep having numbness and coldness in my extremities, brain fog, sleep problems, etc. I think the Drs here will pooh pooh this if I bring up the possibility of this disorder. I’m so scared.

    • Susan Foley says:

      Hello Jo,
      Sorry so late answering these posts. What my suggestion would be to get to a neurologist who has treated HE before and will recognize the signs. Have an thyroid antibody tests done. Bring as much information as you can find with you to the doctor and have a list of questions and symptoms with you. Start a journal now and write down things that have been happening,. as most of us that do have HE have a problem with short term memory.
      Good luck to you and let us know what you find out.
      Susie

  • Dee says:

    I have been suffering from random brief episodes of TIA like symptoms. Complained to Dr and was brushed off as maybe related to multi issues being treated for I have high antibody diagnosed hashimoto and placed on levothyroxine at night nature thyroid in am even though thyroid functions are still norm. I also have psoriasis and multi antibodies to foods triggered after severe gut infections post gallbladder surgery. I recently had sudden vision change in left eye and dr finally sent me to neurologist who saw low oxygen flow to left side of head further mri/mra showed spasm and constriction so placed on verapamil for RCVS. could this be HE or even PACNS I keep asking if the thyroid or my immune issues could be causing and she says no – however my symptoms are still hovering vision never restored from blur and the headaches are dull with random thudding in temple not a “worst of my life” I never got a spinal fluid test she only asked if I ever had a tap and I said yes 15 yrs ago and had a spinal leak with it had to have a blood patch to reverse – that was the worst “headache” of my life. can HE look like RCVS in scans?

    • Nicola Nelson says:

      It is important that you consult a neurologist who has some familiarity with immune-mediated illness. The thyroid does not CAUSE Hashimoto’s Encephalopathy (also known as SREAT). The thyroid antibodies are merely a “marker” of the disease. An endocrinologist is very unlikely to be able to treat H.E.

      • April Dyar says:

        What type of specialist is best for diagnosing and treating HE? My husband’s neurologist, who dx’d him, just kind of dumped him when he was unable to really help with my husband’s recovery.
        It’s been a really long, agonizing story, but I won’t get into a lot of it here.
        I will say that he’s doing his best to “exist”, but is in decline: he has only been treated with steroids a couple of times, thus far — both times resulted in a severe thrush infection and far too little improvement.
        He is now on disability and almost ready to give up – he was a very active person. He still cannot ear to sit down, but there is nothing he is really able to do.
        A few of his symptoms: neuropathy in his feet/legs, active loss of mobility, cognitive problems and personality changes (he is rather parkinsonian, symptomatically).
        He’s had a couple of TIA-like episodes.
        What about a diagnostician at Mayo?
        Thanks for any info you’re willing to share.

  • Karen Kardes says:

    I was diagnosed with HE 3 1/2 years ago. I was completely delirious, and hospitalized for 6 weeks. The neurologist need to do a spinal tap, and a slew of lab work including thyroid paradoxinase. I was originally told I was bipolar. Wasn’t thinking straight, constant fear and worry, forgetting everything, and always panicked and overwhelmed I tried to take my own life, and by the grace of God survived.

    • Nicole says:

      Hi Karen,

      I hope you are doing well. I would like to know more about the 3 1/2 years since your diagnosis if you are willing and able to reply. I recently saw a neurologist following a few years of a mix of the symptoms we see mentioned and am trying to get the prescribed testing scheduled to figure out what is going on. I’m hoping you can provide a voice of experience for me.

      Thank you for sharing

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