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CONTACT INFORMATION

ATTENTION:

MEDICAL PROFESSIONALS, RESEARCHERS, MEDICAL STUDENTS, UNIVERSITIES, and THE MEDIA:
This Web Site and the Additional Pages (above) were created for your INFORMATION, EDUCATION and RESEARCH concerning Hashimoto's Encephalopathy.

CONTACT INFORMATION FOR:

Medical Professionals, Researchers, Medical Students, Universities and the Media, are welcome to contact me regarding: comments, interviews or appearances.

To contact me, use the "Viewer Email Form." It is located at the end of this Web Site.

ATTENTION:

DIAGNOSED WITH HASHIMOTO'S ENCEPHALOPATHY
If you or a loved one have been Diagnosed with H.E. - All the information YOU need regarding H.E. plus H.E. Diagnosis and Treatment, is contained in my H.E. LINKS and within this WEB SITE. Feel free to print out this information for yourself and your Medical Professionals' information.

IMPORTANT:
Due to the volume of emails I receive from individuals diagnosed with H.E., I am unable to answer you individually.

PLEASE inform your Medical Professional about this Web Site listing all Case Studies on the Diagnosis and Treatment of H.E.

TO JOIN HELPS:
Put in the "Send To" area of your email: HELPS-subscribe@topica.com

ATTENTION:

HASHIMOTO'S THYROIDITIS, HASHIMOTO'S DISEASE, HYPOTHYROID and THYROID DISEASE PATIENTS:
If you have been diagnosed with: Hashimoto's Thyroiditis, Hashimoto's Disease, Hypothyroidism or with Thyroid Disease, please see the LINKS BELOW Titled: "Hashimoto's Disease & Hypothyroidism," "Thyroid Disease Information" and "Thyroid Disease."

DISCLAIMER:
All information presented in this Web Site and on these Pages is for INFORMATIONAL and EDUCATIONAL purposes only, and is not meant to diagnose, prescribe or to administer to any physical ailments. It is not a substitute for medical advice or treatment for specific medical conditions. In all matters related to your health, please contact a qualified, licensed practitioner.

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Members List:

International Patient Advocate:
Beverly J. Seminara

LINKS:

H.E. LINKS - ARTICLE, FAQ's and THYROID DISEASE INFORMATION

H.E. A NEUROENDOCRINE DISORDER - ARTICLE

H.E. FREQUENTLY ASKED QUESTIONS & ANSWERS

H.E. INFORMATION HOME PAGE

H.E. A BRIEF INTRODUCTION – MARY SHOMON, AUTHOR

HASHIMOTO’S DISEASE & HYPOTHYROIDISM - MARY SHOMON

THYROID DISEASE INFORMATION - MARY SHOMON

THYROID DISEASE - MARY SHOMON

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QUOTED IN THE FOLLOWING DIRECTORIES & WEB SITES

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QUOTED IN THE FOLLOWING DIRECTORIES & WEB SITES

 

Referenced in All Major Search Engines

 

(NOTE:  This list is incomplete at this time)

 

____________________________________________________________________________________

 

Directory and Search Engine for KIDS

 

MeSoFun.com

 

Date:  2002-2003 – Present:  2005

 

Web Site Description: 

 

MeSoFun Directory and Search Engine for Kids

 

Directory Link: 

 

http://www.mesofun.com/fun/condition+disease+disorder+rare.shtml

 

Directory within Site:  

 

Directory - Search:  Condition Disease Disorder Rare

 

MeSoFun H.E. Page Links:  

 

Hashimoto's Encephalopathy: A Neuroendocrine Disorder / Thyroid Disease Information Source - Articles/FAQs:

 

Link - H.E. Article:

 

http://www.thyroid-info.com/hashimotos-encephalopathy.htm

 

“Information on Hashimoto's Encephalopathy: A rare neuroendocrine disorder related to Hashimoto's Thyroiditis, from Beverly Seminara ... rare and potentially deadly autoimmune disease with symptoms that can mimic many different neurological disorders. It is a treatable disorder ... this condition is quite rare ...”

http://www.thyroid-info.com/hashimotos-encephalopathy.htm  

 

____________________________________________________________________________________

 

Directory and Search Engine for Psychological Sciences - United Kingdom:

 

PsychNet-uk.com

 

Date:  2003-2004 – Present:  2005

 

Web Site Description:   

 

PsychNet – Clinical Psychology Links

 

PsychNet is an independent private web site which was conceived, developed and is run for the benefit of mental health professionals or those interested in mental health practices. Our goal is to become the preferred UK information access point of students, professionals or those who want to know more about the psychological sciences.  PsychNet-UK is growing!   From initial launch in June 1998 our link database has increased from 500 to over 9000. The site is constantly evolving and being improved with now over 350 pages, our hit-rate is over 50,000 visits per month and climbing, and with over 1400 major academic institutions / professional sites linking directly to PsychNet-UK, and over 950 regular monthly book marked visitors. We are on target to achieve our goal.

 

PsychNet-UK is an independent web site and has no association with PsychNET.org, the American Psychological Association or the British Psychological Society.

 

PsychNet Site Link:

 

http://www.psychnet-uk.com/index.html

 

PsychNet Page to H.E. Links 1 and 2:

 

http://www.psychnet-uk.com/clinical_psychology/clinical_psychology_uncategorised.htm

 

 

Link 1 – H.E. Article:

 

http://www.thyroid-info.com/hashimotos-encephalopathy.htm

 

PsychNet H.E. Description Listed:

 

“...Hashimoto's Encephalopathy: A Neuroendocrine Disorder - Hashimoto's Encephalopathy: A Neuroendocrine Disorder By Beverly Seminara. 3/5”

 

 

Link 2 – H.E. Introduction:

 

http://www.thyroid.about.com/cs/hashimotos/a/encephalopathy.htm

 

PsychNet H.E. Description Listed:

 

“Hashimoto's Encephalopathy by Mary J. Shomon Hashimoto's Thyroiditis is the autoimmune thyroid disease that is the most common cause of hypothyroidism.  3/5

 

“Hashimoto's Encephalopathy: A Brief Introduction - Hashimoto's Encephalopathy by Mary J. Shomon…”

____________________________________________________________________________________

 

Directory and Search Engine:  “Google”

 

Google Answers

 

Date:  February 24, 2004 – Present: 2005

 

Web Site Description:   

 

Google Answers is a way to get that help from Researchers with expertise in online searching.

 

A Researcher will search for the information you want. When they find it, they will post it to Google Answers.  Google Answers Researchers are experts at locating hard-to-find information on the web, and through offline resources as well.  Researchers must go through an application process that tests their research skills and the quality of their answers.  All Google Researchers are tested to ensure that they are expert searchers with excellent communication skills. Some of them also have expertise in various fields. Your question may be answered by an expert in a particular field or by an expert searcher.

 

Google Answers Site Link:  

 

http://www.answers.google.com/answers/

 

Link to Answer about HASHIMOTO’S ENCEPHALOPATHY by Researcher: 

 

http://www.answers.google.com/answers/threadview?id=310225

 

Question Asked:  “Subject: Hashimoto Enzephalopathie

Category:

 

Health/Medicine:   “Diagnostics and Therapy of the Hashimoto Encephalopathy”

 

 “Google Answers” H.E. Page Link:

 

http://www.thyroid-info.com/hashimotos-encephalopathy.htm

 

Answer: 

 

“Dear hashimoto:”

 

“Descriptions of diagnosis and treatment of the rare Hashimoto's Encephalopathy are very hard to find. Finally, I was able to locate

two texts - one from a Hashimoto's Encephalopathy patient, one from a collection of medical essays - providing overviews. I have combined elements from both texts for you. In case you would like to read the original essays including their bibliographies and references, you will find links to the respective websites below.”

 

“- Hashimoto's Encephalopathy –“

 

“Hashimoto's Encephalopathy is a subacute condition associated with autoimmune thyroiditis. It is a severe and rather infrequent clinical condition initially described in patients suffering from chronic lymphocytic thyroiditis. Its origin is still controversial but it can be agreed to have an autoimmune etiology. In fact, its most characteristic finding is the high titre of antithyroid antibodies,

especially antimicrosomal. Its presentation varies from focal neurologic deficits to global confusion. Unlike encephalopathy associated with hypothyroidism, Hashimoto's Encephalopathy responds to steroid therapy and not thyroxine replacement.

 

“There are some conflicting views by researchers as to Hashimoto's Encephalopathy being a type of autoimmune cerebral vasculitis, a neuroimmunological syndrome, a neurological encephalopathy, a condition that develops due to Hashimoto's Thyroiditis, or perhaps a disorder that should be classified separately. What is known is that it is a neuroendocrine disorder -meaning it affects both the endocrine system, and the neurological (nervous) system.

 

“The neurological symptoms frequently lead to mistaken neurological diagnoses; furthermore, Hashimoto's Encephalopathy, while rare, may have been underrecognized, since its clinical presentation overlaps several more common disorders, such as depression, seizures, or anxiety - it is likely that more cases exist than are actually properly diagnosed. Hashimoto's Encephalopathy typically have high antithyroid antibody titers as do patients with Hashimoto's Thyroiditis, and all patients with Hashimoto's Encephalopathy eventually are diagnosed with Hashimoto's Thyroiditis as well.

 

“The average age of onset in reported cases is 47 years (range, 14 to 78 years). Approximately 85% of the patients are women. Two types of clinical presentation can be observed. The first type is characterized by acute stroke-like episodes with transient focal neurologic deficits and even epileptic seizures. The second form has a more insidious onset, progressing to dementia, psychosis, and coma over several weeks. No focal neurologic deficits are seen in the latter type, but neuropsychologic testing reveals severe cognitive deficits.

 

“No specific diagnostic test exists for Hashimoto's Encephalopathy. Thyrotropin and FT4 levels should be relatively normal. A positive antithyroid antibody titer is necessary but not sufficient in making the diagnosis of Hashimoto's Encephalopathy. The presence of other autoantibodies, such as anti-parietal cell antibody or anti-intrinsic factor antibody, has been reported. Although nondiagnostic, these additional autoantibodies can signify an increased likelihood of an immune-mediated form of encephalopathy.

 

“In about 75% of reported cases, the cerebrospinal fluid reveals an elevated protein level (range, 0.48 to 2.98 g/L [48 to 298 mg/dL]). Of these, 25% also have mononuclear pleocytosis (range, 8 to 169 cells). Oligoclonal bands are detected in 4 of 15 patients for whom such a result is reported. Glucose level is always normal. Therefore, while cerebrospinal fluid abnormalities are usually seen in Hashimoto's Encephalopathy, a normal examination may be present in up to 25% of cases and does not rule out the condition.

 

“Electroencephalography is abnormal in more than 90% of cases. Typically, the EEG shows nonspecific, intermittent slow wave activity. Epileptic activity has been documented in several cases. These abnormalities do not improve and even worsen after the initiation of anticonvulsant therapy.

 

“Neuroradiology studies frequently reveal nonspecific findings, such as bilateral subcortical high signal lesions on T2-weighted images, or mild cerebral atrophy with temporal predominance. Cerebral angiograms (reported in 10 cases) and Doppler sonograms of cerebral vasculatures (reported in 5 cases) are normal.

 

“Many symptoms can occur. Some patients experience many of these symptoms, others may show some but not all of the symptoms listed here. Symptoms include:

 

-Confusion

-Disorientation

-Psychosis

-Coma

-Tremors

-Convulsions

-Concentration Problems

-Attention Span Problems

-Difficulty Retaining Information

-Short Term Memory Problems

-Seizure Activity

-Monoclonal Jerks - Involuntary Muscle Jerks

-Dementia

-Fatigue

-Coordination Difficulties

-Headaches

-Episodes of Stroke

-Episodes of Stroke-Like Deterioration

-Right Sided Hemiparesis - Right Sided Partial Paralysis

-Aphasia - Speech Difficulties

-Articulation Difficulties

-Word Finding Difficulties

-Fine Motor Movement Problems - Coordination of arms, hands, fingers.

 

“Though it is not curable, Hashimoto's Encephalopathy is treatable. Patients with Hashimoto's Encephalopathy respond dramatically to steroid therapy. The initial dose of steroids varies between 50 mg and 150 mg of prednisone daily, usually slowly decreased over weeks to months, depending on the clinical course. While rapid improvement can be observed within 1 to 3 days, the average time from start of therapy to significant clinical improvement is 4 to 6 weeks. Most patients (90%) stay in remission even after treatment has been discontinued (with follow-up periods of up to 10 years). Hashimoto's Encephalopathy is a relapsing condition, but the use of oral corticosteroid can keep the condition manageable for many patients.”

 

 “The above text was composed mainly from elements from:

 

Beverly Seminara - "Hashimoto's Encephalopathy - A Neuroendocrine Disorder"

 

Original text available on Thyroid-Info…”

 

____________________________________________________________________________________

 

Thyroid Forum Web Site – Germany:

 

Schilddruesenforum

 

Date:  September 9, 2004 – Present:  2005

 

Web Site Description:  Schilddruesenforum

 

English Translation:  Thyroid Forum

 

Schilddruesenforum  (Thyroid Forum)  H.E. Page Link:  

 

http://www.schilddruesenforum.de/thread.asp?threadnr=6377

 

Language:    GERMAN

 

In German:   Zurück zur Übersicht          

 

English Translation:  “Back to the overview”

 

In German:   zum Thema: Hashimoto-assoziierte Enzephalopathie   Kann das jemand sinngemäß zusammenfassen - auf Deutsch? Das wäre nett....”

 

English Translation:   “To the topic:  Hashimoto associated Enzephalopathie can summarize that in a general manner someone - on German?  That would be nice....”

 

In German: 

 

(Date)  “23.09.2004 23:58:00 MWG   zum Thema: Hashimoto-assoziierte Enzephalopathie   leider nur in Englisch Quelle:

 

Schilddruesenforum  (Thyroid Forum) – H.E. Article Link:

 

http://www.thyroid-info.com/hashimotos-encephalopathy.htm  

 

Zeitschrift:”

 

English Translation:  

 

(Date – September 9, 2004)  “23.09.2004 23:58:00 MWG.  To the topic:  Hashimoto associated Enzephalopathie unfortunately only in English source:

 

http://www.thyroid.info.com/hashimotos-encephalopathy.htm

 

magazine:”

 

English Translation:

 

“Thyroid-Info Latest Update: September 23, 2004

 

“SEARCH SITE Hashimoto’s Encephalopathy A Neuroendocrine Disorder By Beverly Seminara.” 

 

Beverly Seminara is a writer and Hashimoto’s Encephalopathy patient herself. Recognizing that there is not much information disseminated about this rare condition, Beverly has formed HELPS: The Hashimoto’s Encephalopathy Loved Ones & Patients Support Group. Sharing information and support, Beverly welcomes other Hashimoto’s Encephalopathy patients who wish to share information and support. Please see the HELPS website at:

 

HELPS Link:

 

http://www.thyroid-info.com/helps.htm 

 

“ * * * Hashimoto’s Encephalopathy is a very rare and potentially deadly autoimmune disease with symptoms that can mimic many different neurological disorders. It is a treatable disorder -- if doctors figure out what it is in time and begin treating it. It is critical for the patient that doctors, neurologists and endocrinologists recognize this disease as soon as possible. When properly diagnosed and treated, patients begin positively responding within two weeks from the horrifying and most frightening symptoms.

 

“Hashimoto’s Encephalopathy is a disease that may have a connection to Hashimoto’s Thyroiditis. However, many patients were euthyroid (normal thyroid range) or hypothyroid upon onset. It must be made absolutely clear that just because someone is has Hashimoto’s Thyroiditis or another thyroid problem, that does not mean that the individual is destined to develop Hashimoto’s Encephalopathy - this condition is quite rare.

 

“Hashimoto’s Thyroiditis was named after the Japanese physician Dr. Hakaru Hashimoto, who first described this condition in 1912. Hashimoto’s Thyroiditis is the most common cause of hypothyroidism in the U.S., and is an autoimmune or chronic lymphocytic type of thyroiditis. Hashimoto’s Thyroiditis is not uncommon. The thyroid gland typically becomes and the antibodies the body normally produces to protect the body and fight foreign substances such as bacteria, are found to ·attack· their own thyroid tissue. Thyroid antibodies are present in 95% of Hashimoto’s Thyroiditis patients and the thyroid autoimmune antibody test serves as a marker for Hashimoto’s Thyroiditis.

 

“Treatment is basically the treatment for hypothyroidisim - thyroid hormone replacement drugs. Hashimoto’s Encephalopathy is quite a different situation. There are some conflicting views by researchers as to Hashimoto’s Encephalopathy being a type of autoimmune cerebral vasculitis, a neuroimmunological syndrome, a neurological encephalopathy, a condition that develops due to Hashimoto’s Thyroiditis, or perhaps a disorder that should be classified separately.

 

“What is known is that it is a neuroendocrine disorder - meaning it affects both the endocrine system, and the neurological (nervous) system. Hashimoto’s Encephalopathy is underdiagnosed - it is likely that more cases exist than are actually properly diagnosed. It is also a treatable condition, but not curable, however, long term prognosis is good with proper treatment.

 

“It is also a relapsing condition, and a steroid responsive disorder, treatable with oral corticosteroids (Prednisone or its derivatives.) Hashimoto’s Encephalopathy typically have high antithyroid antibody titers as do patients with Hashimoto’s Thyroiditis, and all patients with Hashimoto’s Encephalopathy eventually are diagnosed with Hashimoto’s Thyroiditis as well.

 

“As with Hashimoto’s Thyroiditis, antibodies attack the thyroid gland, but with Hashimoto’s Encephalopathy, antibodies also attack neurons in the brain. The neurological symptoms frequently lead to mistaken neurological diagnoses. Many symptoms can occur.

 

“Some patients experience many of these symptoms, others may show some but not all of the symptoms listed here. Symptoms include: Confusion Disorientation Psychosis Coma Tremors Convulsions Concentration Problems Attention Span Problems Difficulty Retaining Information Short Term Memory Problems Seizure Activity Monoclonal Jerks - Involuntary Muscle Jerks Dementia Fatigue Coordination Difficulties Headaches Episodes of Stroke Episodes of Stroke-Like Deterioration Right Sided Hemiparesis - Right Sided Partial Paralysis Aphasia - Speech Difficulties Articulation Difficulties Word Finding Difficulties Fine Motor Movement Problems - Coordination of arms, hands, fingers. It’s easy to see how, with these types of symptoms, a patient could easily be misdiagnosed with many other neurological disorders…”

 

____________________________________________________________________________________

 

 

 


 
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