Guide to the Site

This site is not run or monitored by a physician. Its primary purpose is to serve as a place to find the latest published scientific research concerning Hashimoto’s Encephalopathy (HE), aka Steroid Responsive Encephalopathy Associated with Thyroiditis (SREAT).  We cannot provide medical advice.

This site also provides descriptions of medical terms and issues designed to help patients better understand HE/SREAT. Please see the links on the right-hand side of the page.

Your comments are vey welcome, but this site is not intended to provide a forum for patient communications.  There is, however, a tab (see above) that lists a number of places patients and caregivers can go to find support and to  communicate with others. If you are aware of a forum that is not listed here, please feel free to send that information to HESilverLining at yahoo.com.

There is also a tab (above) for Success Stories, where patients who have achieved remission can share the treatment protocols that worked for them.  You are urged to consider your personal privacy, and if you share your story do not to post your actual name without carefully considering the implications of putting your personal medical information out for the general public to view.  Pseudonyms may be worth considering to safeguard your privacy.  This is especially important for parents of pediatric HE patients, who are urged not to put their children’s real names out there, or at least to use only a first name and not a last name. Your child’s privacy in their medical information is important.

To find the most recent, up-to-date listing of case studies and scientific articles on HE/SREAT published around the world, click on the tab (above) marked “Case Studies.” The listing of case studies and articles is being constantly updated to provide you with the very latest research, including numerous articles written between 2010 and 2012.   If you are aware of additional scientific publications or case studies not listed here, please send such information via email to HESilverLining at yahoo.com so that we can add them.

  1. Betty Cook Finner
    August 26, 2012 at 2:13 pm

    I was diagnosed with hashimotos 2 years ago….have had RA for 8 years… Just diagnosed with Addison’s now. I truly believe all the hormone organs are so closely related you have to be ready for them to all begging to have issues because they all work hand in hand….bottom autoimmune disease is just that. Give it lots of names to lots of different symptoms…let’s jets just call it what it is. “AUTOIMMUNE DISEASE”

    • PK
      January 16, 2013 at 1:17 pm

      Yes…absolutely!!!

  2. sharon McMinn
    September 24, 2012 at 2:38 pm

    I have had problems with thyroid for a long time. I kept having problems with memory, etc and after an MRI they thought it was MS. During blood work, they have said that I have Hashimoto Thyroiditis Encephalitis and want to start me on 200mg of prednisone in one day and then repeat in two weeks. I am on phenebarbitol also for sezuire disorder that i have had for years. A little afriad of the midication.. Start it tomorrow.

    • September 24, 2012 at 2:53 pm

      I can see why you are a little afraid, but try not to be. 200mg is a high dose, and you MIGHT get some side effects, but you will likely feel a lot better in general. Best of luck and my thoughts are with you.

  3. September 24, 2012 at 5:18 pm

    Just to reiterate what Scientistseeking posted, 200 is high but you won’t be at that dose for long. When I was first diagnosed I had 5 days at 1000 mg per day (via IV). I got enormous relief from symptoms and almost felt like my old self again. Unfortunately in my case, symptoms returned during tapering. But it’s not that way for everyone. Have hope!

  4. October 9, 2012 at 4:39 pm

    I am taking 5 mg a day and 7 when needed after beginning with IV for 3 days, then 60mg tapering down to the 5. I think I would do better on 10 to 15 a day but my GP who is trying to help me without a neurologist is hesitant due to side effects. I feel like I’m about 50% of who I used to be but am grateful that I continue to be able to do many things I was incapable of before my diagnosis. It is doable!! Melissa

    • October 13, 2012 at 12:33 pm

      Melissa,
      Hang in there. I’m glad you have found this site, and that it is helpful to you. Indeed, life goes on and I know what you mean about being grateful to be able to do many things, even if one cannot do everything one did prior to receiving diagnosis and initial treatment. Please keep us posted on how you are doing. Also, please feel free to post comments and make suggestions. Best of luck!

  5. Lori Erhardt
    November 15, 2012 at 3:57 pm

    I am seeing a homeopath who has begun prescribing remedies to treat what he believes to be Hashimoto’s Encephalitis. He believes that a bout of mycoplasma pneumonia (noted in the lower right lobe of the lung with accompanying strep throat) a number of years ago first affected my thyroid. (Six months later I was on Thyroid medication with the amount increasing over the last number of years.) Once the thyroid had been attacked, and the immune system was in a weakened state, the mycoplasma began attacking the nervous system causing fatigue, tremors, weakness in arms and legs, intractable burping upon exertion or touch to the neck and spine, pain in appendages upon lifting, an affected gait, and cold and painful appendages after eating. I was diagnosed with Hashimoto’s Thyroiditis by an endocrinologist. After being referred by the GP, a psychiatrist subsequently diagnosed ‘somatoform disorder’ and following that I received a diagnosis of vasculitis from a neurologist although that was not confirmed by a rheumatologist as there was no sign of swelling. The rheumatologist mad a secondary diagnosis of ‘fibromyalgia’, although she was not able to offer a primary diagnosis. I am curious as to whether homeopathic remedies are considered in the body of material on HE. Thank you.

    • December 6, 2012 at 11:38 am

      I have not read anything about homeopathic remedies for HE. Are you aware that the “somatoform disorder” diagnosis means that the psychiatrist believed this was a type of mental illness, not physical illness? I just wanted to be sure you know that. This is often an initial diagnosis of those with HE and other forms of autoimmune encephalopathy, and reflects a failure to fully investigate the physical cause of the symptoms. I will be interested to know what kind of homeopathic remedies you have been given, and whether they have helped you. Please feel free to reply.

  6. Lori Erhardt
    December 6, 2012 at 1:16 pm

    Thank you for your response!

    I am aware of the nature of the psychiatric diagnosis and, having spent two years challenged by the limitations of conventional medicine (particularly in regard to this type of health challenge) I continue to explore avenues of healing help beyond its constraints. Further to your point about a failure to fully investigate the physical causes, the diagnosis of vasculitis and fibromyalgia came after the diagnosis of somatoform disorder, when further testing revealed a PANCA result.

    The homeopathic tinctures I am taking include Kal I Carb. CMK, Arsenicum Iod. 30 CH, Streptococ. CMK, Thymusinum CMK, Bryonia Alba CMK, Terebinthina 6CH, and I am waiting for an order of Insulinum 7C, and Thyroidinn 4c. I have only been on the remedies for less than a month and have not noticed a huge change, although I do not seem to be getting worse. I take a variety of digestive enzymes, vitamins and fish oils. I also meditate, and have begun a yoga and qi gong practice ( for pain relief.) The weakness and fatigue continue to be a challenge.

    Thanks again.

  7. PK
    January 16, 2013 at 2:10 pm

    I have had myriad health issues since the birth of my son in 1995. I have been on many psych meds and combinations thereof with not only no Improvement but also with side effects worse than the original symptoms. My new psychiatrist questions whether or not I ever needed them. She is very learned, wise and respected and I trust her assessment over that of all previous doctors. Her diagnosis is that of a severe case of ADD and also measurable PTSD. The former diagnosis of either depression or bipolar never felt right to me however, this new insistence rings true…it account for so many issues. I have Hashimoto’ s hypothyroid, fibromyalgia and CFS which I believe, as Betty Cook Finner says above, are all basically symptoms of one overriding syndrome. I have had a number of neurological symptoms over the years. A neurologist did a number of tests and basically said I didn’t have MS and told me to go home and not worry. I am not and have never been worried as much as I am trying in every way I know how to get to the bottom of all this so I can get the correct medical care and so I can do for myself what will best support my health. As it is, knowing I have a sensitivity to gluten, I am strictly off that as well as the entire list of foods they say one might also be unable to digest (all grains-except rice, dairy, corn, soy sugar caffeine) on the off chance those are adding to the problem. I feel I can’t do this half way if I hope to get better. I was taking the supplements recommended for the above conditions yet read it may be beneficial until the gut heals and proper flora is restored. Not sure what to do about that at this point other than take probiotics and eat only non-affenpinscher food (meat, veggies, fruit, beans, nuts). I also juice with dark greens and fruit a few times a week. Ideally, I think it would be quite beneficial to do that every morning…I feel best when I do. Although I feel all these efforts are health supportive and would be so for anyone, I don’t believe it has or will have a curative effect on the profound fatigue or neurological symptoms. If my brain is being effected by antigens present as a result of an autoimmune response, all the veggies in the world will not cure that. Eliminating offenders (food, stress, etc) will certainly help as preventative measures however, I have been at the food thing for many months (nearly a year), I am making every possible effort to sleep more and on a more consistent schedule and am keeping stress at bay, when possible (even doing guided meditation at night) and the tremors, shaking and disorientation is back and keeping me from living “normally”…what ever that is (I have lost a grip on that). After getting off many meds (on my own since my former psychiatrist would not help me…operative word, former), I had a nice long stretch of being better than I remember being in the past 17-plus years now, many symptoms have, once again, reared their ugly heads. I have most, if not all, the Hashimotos symptoms with the addition of the neurological ones and pronounced word finding problems and times when I feel confused/disoriented. I not only have, as they say “brain fog” but, my brain seems to seize up…like things are suspended in time and space…where I can’t seem to move forward (can’t answer a question/can’t make a decision), I went through a long period of many months where I could not organize my thoughts enough to speak. I could go on but, the point is it appears I have a number of HE symptoms and intend to have that addressed. I talked to my primary dr who said she would research it. I need to find a neurological endocrinologist who has first hand experience with this as close to home as possible. I have been to way to many drs over the years with little improvement…I want to cut to the chase.

    I live in New Jersey. Can anyone recommend a knowledgable dr. HELP!!!

    I wish you all the best possible health, peace and joy.

    Paula

  8. March 9, 2013 at 5:28 pm

    As a person with Hashi’s/SREAT/auto-immune encephalopathy, I have been with a support group on Facebook that is fantastic for support, bouncing ideas off others, asking questions about doctors, meds, treatments and just venting. Look for Encephalopathy aka HE/AE or Hashimoto enceph. The more we can all share info, the better we can help educate ourselves and physicians!

    • March 12, 2013 at 9:37 am

      Absolutely! The Facebook groups are listed in the Support tab at the top of the page! They are fantastic resources for communicating with – and learning from – others.

  9. December 27, 2014 at 7:02 pm

    I am not sure if this site is being is still in use but I was dx with HE and steriods gave me pancreatitis. The doc got mad that this “textbook” therapy did not work and now I have no direction to go in. Anyone have suggestions?? I feel terrible. I live in FL, but really need a doc I can trust

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