Hashimoto's Encephalopathy
Information from International Patient Advocate, Beverly Seminara

KEY RESOURCES

BEVERLY'S RESEARCH SITE
Hashimoto's Encephalopathy - A Complete List of Published Case Studies

HOME PAGE
Hashimoto's Encephalopathy Information Home Page

ARTICLES
 Introductory article on
Hashimoto's Encephalopathy http://thyroid.about.com/library/weekly/aa060900a.htm

In-depth article by Beverly Seminara on
Hashimoto's Encephalopathy, including
medical journal references: http://www.thyroid-info.com/hashimotos-encephalopathy.htm

THYROID DISEASE INFO
 Information on thyroid disease in general
(non H.E.-related):
http://www.thyroid-info.com

FREQUENTLY ASKED QUESTIONS
by Beverly Seminara

Listed here are Frequently Asked Questions (FAQ's) about Hashimoto's Encephalopathy.

FAQ - DIAGNOSED WITH HASHIMOTO'S THYROIDITIS

Introduction: - If you have just been diagnosed with Hashimoto's Thyroiditis (H.T.) also known as Hashimoto's Disease - I suggest you go directly to Mary Shomon's Thyroid Site. In addition, see the related Subjects and Links I have provided below.

If you or a loved one has indeed been diagnosed with H.E. - Hashimoto's Encephalopathy, I cannot stress enough how important it is for you to please join us an online support group.

If you have been diagnosed with H.T. or hypothyroidism - this does NOT mean you have Hashimoto's Encephalopathy or that you will get H.E. Just because the name:Hashimoto's - appears in both, does not necessarily mean one leads to the other. I strongly urge you to go to the links I have listed below.

Hashimoto's Thyroiditis and Hypothyroidism The following Links provide expert knowledge and much more information about Hashimoto's Thyroiditis and hypothyroidism than I can give. Even though I have both, I do not have the expert knowledge that Mary Shomon does about this Disease and this condition - just as Mary does not have the knowledge about H.E. as I do.

IMPORTANT:

Hashimoto's Thyroiditis (H.T.) also known as Hashimoto's Disease is a DISEASE.

Hypothyroidism is a CONDITION. Many people do not know the difference and use the term interchangeably.

Symptoms of Hashimoto's Thyroiditis, the main cause of Hypothyroidism, and Symptoms of Hypothyroidism itself, can be very similar to Symptoms for H.E.

This Disease and this Condition is not to be confused with H.E. - Hashimoto's Encephalopathy. I know this is confusing, but please read the information in the Links that I have provided and any/all information on Mary's Web Site.

Hashimoto's Thyroiditis/Disease vs. Hypothyroidism
http://thyroid.about.com/library.weekly/aa30802a.htm

Mary Shomon's Sites

Ms. Shomon is a leading and well-known Thyroid advocate. Her sites have the most current, accurate information related to Thyroid diseases. She is a 6 time published author. Her Site is a wealth of information about anything, everything related to thyroid diseases. http://thyroid.about.com
http://www.thyroid-info.com

I hope this clears up any confusion, or unnecessary fear and gets you directly to the place you need to be. You can subscribe to Mary's free newsletter

My PHILOSOPHY
by Beverly J. Seminara, Patient Advocate

To Everyone Affected by Hashimoto's Encephalopathy:

Those of us with H.E. (Hashimoto's Encephalopathy) typically share the same treatment - steroids, with the exception of people who do not respond well to steroids and receive the IVIG Treatment. We share many similar experiences with our Symptoms, yet some are diverse, all depending on which type of H.E. you have: Type I or Type II, one having more Stroke-like Symptoms vs. the other that does not. Though H.E. can be a combination of both. We come from all walks of life, from early teens to mature adults, there are as many men as there are women. This disease is not specific to females, nor is it rare in males. This disease knows no age. It can present at 15 or at 65. We know H.E. has no boundaries - we are coast to coast in the USA, in Great Britain, many other countries in Europe, all the way to Australia. Yes, we are growing.

All of us struggle everyday with this frightening illness knowing there is no Cure, but it is Treatable. We live with HOPE for a normal life and know we will have a normal life span. We know Studies indicate that long term prognosis is good with appropriate treatment. Our Mantra! We realize that if this disease goes untreated results in irreversible dementia, coma, nursing home and death.

We know H.E. is a Relapsing disease. Will we Relapse? When will we Relapse? Will we be fortunate to never Relapse, to go into Remission? We'll never know, each day we take one at a time.

We may feel helpless at times because of our lack of knowledge. We live in fear because there are so few of us with this disease and that the Medical Profession has little experience with recognizing, treating and following-up our illness. We have few choices but to learn as much as we can about H.E., everything we can about H.E.

We truly share the same feeling - always programmed to trust your Doctor, he/she is the expert on medical matters - yet - it is up to us to bring them all the medical literature about H.E. that we can find. I am aware of the number of Case Studies out there specifically about H.E., and doing everything I can to acquire them. I currently have 10 in the HELPS Information Packet. I have a complete list of Case Studies about H.E. that I am still diligently working on to obtain. They are listed by Publication, Title, Author, Date, Volume, and Page Number - so many more containing vital information.

Are we ever truly confident to fully trust our Physicians with our long-term care, when often they themselves have either treated a few cases of H.E., or we may be their only one? We must. We must work as a team with them, let them know how many more of us exist. That indeed, this disease is not so rare. H.E. is seriously underdiagnosed and misdiagnosed. There is no TEST for H.E. By giving our Physicians this knowledge, who knows - perhaps tomorrow, perhaps next week, next month, next year - that Physician will again encounter a Patient, difficult to diagnose - but with this shared knowledge he/she will diagnose them appropriately and treat them quickly. We are proof that H.E. is not a rare disease, our Group grows in number every day.

We must take an active, not passive role with our illness; it is in our best interest. We don't want to have to Research, Read, Understand the complexity of the Case Studies, but with repetition, a medical dictionary, a level head, we must understand and comprehend all we can. Ignorance is fear. We fear what we do not understand. The more we understand, the less we will fear. We need to comprehend the complexities of our disease in order to intelligently discuss our case with our Doctors. We must pass these Studies on to our Physicians, for their knowledge, so they can treat us appropriately. So they too, understand more about our illness. We are not in their Textbook, in anything they studied in medical school, or came across with frequency in their practice. But there are many of us, many more than anyone thought.

Other H.E. patients have described to me their own horrific beginnings with H.E. as well as the length of time everything took place. What tests they endured, what the results were, the disappointment with some Medical Professionals with their attitude, from our many misdiagnoses, to our final great relief finding a Doctor who recognized this disease as well as how to treat it. Even though we who had the recommended Treatment with High Doses of Corticosteroids (Steroids) still differed in our dosages and length of time on them - there still is no consistency with everyone receiving the exact same dosage, length of time, etc. Everyone is an individual. Everyone is different, some may not require such a high dose, and others may. It takes a long time, you are the Guinea Pig, the Lab Rat, you must endure the experiment, and nothing is cast in stone. But the reward is great.

Some of you reading this may have just been diagnosed with H.E. and are frightened, confused. You may be terrified by the Symptoms you are experiencing. Some of you may be beginning treatment and want to know what to expect, and when. Some of you have already gone through treatment and are doing fine. Many have gone through Treatment, and there is a variation with the dosage and length of time, who are doing fine.

One thing we all know that is vital, is for us to rely on our own inner strength, never to give in or give up. We need the support from our Physicians for the long haul, we have a long road ahead of us. We need the support from our Family, Friends, our Religion, our Work, if we still can. We need to feel cared-for, understood, loved, respected for our fighting spirit, our resourcefulness for drawing on strength we never knew we had to overcome sudden obstacles like performing simple tasks. We need to be creative on how to deal with these new obstacles. Never mind the biggest obstacle of all - living with and experiencing first hand, H.E.

We must never be discouraged no matter how hard our fight has become, or is. We are still the same person we were BEFORE H.E. We are more than this disease with which we struggle. Much more.

We must accept this different road that suddenly appeared before us, when we were very happy with the road we were on. We must retain a positive attitude no matter what Stage of this disease we are experiencing. We must realize that once this very long time of our life, The Beginning - The Treatment, to get us as well as we can be, the best Recovery we can achieve, will be a moment of such achievement, that we will adjust and be grateful to be one of the Lucky Ones - who was correctly diagnosed and treated. Because we all are survivors, fighters, against terrible odds. We made it.

We all persevere, we will be fine. We also must never be afraid to ask questions, ask for help, or for support when we need it. We also must never forget to re-pay the kindness of others who brought us through, who were always there for us. We must re-pay them and new people here gladly with our experience, understanding and our triumphs. Because now they too are in that very dark, terrifying place we had been - The Beginning of H.E. and/or the not so pleasant, but life saving, Treatment for H.E.

I was able to turn my life around 180 degrees, and much unexpectedly turn this disease into a positive force. My purpose is to do all I can so that no one goes through the horrors I did. No one should receive the horrific misdiagnoses I did. No one has to wait years for appropriate Treatment like I did. No one to be alone with this disease as I was. To do everything I can to get the word out about H.E. to the medical profession, to people who have been diagnosed with it and having no place to turn.

Consider joining an online support group. New people are always arriving, and you'll find many people who want to help.

Topica Email Group on Hashimoto's Encephalopathy

 Since my Symptoms began and to this day, my motto has always been - Tomorrow Will be a Better Day. Keep the candle burning and never forget no matter how good, well you are feeling today, right there is someone who is terrified, confused and just Beginning.

Listed below - as you scroll down - are some Frequently Asked Questions (FAQ's) about H.E.

Regards, Beverly J. Seminara, Patient Advocate

FAQ - DEFINITION OF HASHIMOTO'S ENCEPHALOPATHY - (H. E.)

Introduction: Through my research, I have found that there are over 60 Case Studies on H.E. The earliest is 1966. The rest are from the 1970's, 80's, 90's, and 2000 to the present. Each Case Study may contain 2 Patients, or 5 Patients, or 10 Patients with H.E. The Case Studies are from countries all over the world, including the USA.

The following definition is in a dictionary for Neurology. It is dated: 1991.

Hashimoto's Encephalopathy (H.E.) - A relapsing encephalopathy occurring in association with Hashimoto's Disease, with high titers of antithyroid antibodies. Clinically, the condition presents with altered consciousness, confusion, focal or generalized seizures, myoclonus, and episodes of stroke-like deterioration.
Source: Companion to Clinical Neurology, William Pryse-Phillips, MD. (Lond.) Professor of Medicine (Neurology) Memorial University of Newfoundland Faculty of Medicine, St. Johns, Newfoundland, Canada. Little, Brown and Company, 1991.


FAQ - IS IT HASHIMOTO'S ENCEPHALOPATHY - H.E.?

Introduction: Hashimoto's Encephalopathy, (H.E.) is difficult to diagnose. It can resemble many different Neurological disorders, as well as Acute Hypothyroidism. Through Extensive Neurological Testing, and Endocrinology Testing, normally a process of elimination must occur to rule out other illnesses. Too often patients are misdiagnosed at the Neurological level.

It is known that H.E. is underdiagnosed and misdiagnosed, meaning there are many more people with H.E. out there who are not being diagnosed properly or treated. It is known that if H.E. goes untreated results in irreversible dementia, coma, nursing home and death. Just ONE person being misdiagnosed is not acceptable, especially when there are so many resources available to assist in a proper diagnosis and appropriate treatment. It is known that H.E. is not Curable, but Treatable. It is known that with appropriate Treatment, long term prognosis is good.

Though there is no specific, diagnostic test for Hashimoto's Encephalopathy, (H.E.,) the following Test results may well indicate an H.E. Diagnosis. However, some patients MAY, some patients MAY NOT show the following results on some of these specific Tests. That is why the Symptoms presented, in combination with Elevated Thyroid Autoimmune Antibodies are so important for diagnosis.


NEUROLOGICAL TESTS

EEG - May show generalized diffuse slowing, slow wave activity or bilateral temporal and frontal spikes, or the test may be Normal.

CSF, SPINAL TAP - May show elevated Protein, Oligoclonal Bands, or may be Normal.

MRI - May show subcortical high signal lesions on T-2 weighted images, or mild cerebral atrophy with temporal predominance. Also may show lesions. Could show white matter abnormalities. White matter lesions can be reversible with clinical improvement involving Steroids. Or test may be Normal.

ANGIOGRAM OF THE BRAIN - This will be Normal.

ENDOCRINOLOGY TESTS - BLOOD TESTS

TSH - Thyroid Stimulating Hormone
T- 4 - Free Thyroxine

These Tests will confirm a diagnosis of Hypothyroidism. Or the patient may be Euythyroid - no Thyroid problem indicated - BUT - the patient still can have H.E. AND Elevated Thyroid Autoimmune Antibodies from results of the Tests listed below.

Thyroid Microsomal Antibody Titer (TMAb) - Thyroid Autoimmune Antibody Test

Thyroglobulin Antibody Titer (TgAb) - Thyroid Autoimmune Antibody Test

These are the Tests that will show Elevated Thyroid Autoimmune Antibodies.

FIRST - NOTES ON THYROID DISEASE

The Thyroid Antibody Tests above will also confirm a Diagnosis of Hashimoto's Thyroiditis, (H.T.) also known as Hashimoto's Disease and therefore the patient will also be Hypothyroid.

The main cause of Hypothyroidism is Hashimoto's Thyroiditis, (H.T.)

You can be Hypothyroid and NOT have Hashimoto's Thyroiditis, and with NO SYMPTOMS - NOT have H.E. Just be Hypothyroid.

You can be Hypothyroid, AND HAVE Hashimoto's Thyroiditis with NO SYMPTOMS - and NOT have H.E.


OBTAINING AN H.E. DIAGNOSIS

IMPORTANT - A patient may be Euythyroid OR Hypothyroid upon onset of H.E. Also patients that are Euythyroid or Hypothyroid will have Elevated Thyroid Autoimmune Antibodies.

That is why it is so important to have the patient, in addition to Extensive Neurological Testing, undergo thorough Thyroid Function Tests - with the Symptoms and Elevated Thyroid Antibodies a diagnosis of H.E. should be considered and Treatment for H.E. should begin.

If a person has unexplained episodes of: Myoclonus, Seizures, Neurological Deficits, Cognitive Problems, Psychiatric Disorder Symptoms and all Extensive Neurological Tests eliminate other diagnoses, has Elevated Anti-Thyroid Autoimmune Antibodies, H.E. should be seriously considered, and Treatment for H.E. should begin.

If the patient Tests with an abnormal EEG, Elevated Anti-Thyroid Autoimmune Antibody Titer, Elevated Proteins or Oligoclonal Bands in the Cerebrospinal Fluid (CSF, Spinal Tap) and an unrevealing Cerebral MRI, the patient should be diagnosed with H.E. Treatment should begin.

A patient may test Normal on all Extensive Neurological Tests, be Hypothyroid or Euythyroid, have Elevated Thyroid Autoimmune Antibodies and importantly, show some of the Symptoms as indicated, an H.E. Diagnosis should proceed with appropriate H.E. Treatment.

If a patient responds well, then a Diagnosis and Treatment for H.E. should proceed.

IMPORTANT - Even though clinical improvement (Symptoms improve) occurs in all patients treated with Steroids, or those who cannot tolerate Steroids and have IVIG Treatment, Thyroid Antibodies WILL remain elevated.

Source: "Hashimoto's Encephalopathy," Hubert C. Chen, MD, Umesh Masharani, MD, Division of Endocrinology, University of California at San Francisco. Southern Medical Journal, 93(5):504-506, 2000.


FAQ - TYPE I AND TYPE II H. E.

Introduction: Since we now have the clinical DEFINITION of Hashimoto's Encephalopathy, "FAQ - DEFINITION OF H.E.," we now must be aware there are TWO TYPES of H.E. TYPE I and TYPE II.

This should clear some of the confusion about why some of us have stroke-like symptoms and others do not. Each Type is distinguishable by their Symptoms. These Types may overlap in some Symptoms. Someone may primarily have Type I H.E., yet have some Symptoms from Type II, and vice versa. Also keep in mind that a person with H.E. does not have to have ALL of these symptoms. The symptoms may overlap particularly in the long term without Treatment.

TYPE II is believed to be more common than TYPE I. You will see this especially within our Group. That is why I ask for details about your Beginnings, and your Symptoms with H.E. Perhaps you would like to check off which symptoms pertain to you or your family member. You will then find out just how much in common you have with many others in the Group. Beverly - I have TYPE I H.E. - Stroke-Like Symptoms.

Before defining the two Types of H.E., it is necessary to first list ALL the Symptoms associated with H.E. Then, I will define which Symptoms indicate Type I H.E., and which indicate Type II H.E. The following is an excerpt from my Article: "Hashimoto's Encephalopathy, A Neuroendocrine Disorder," by Beverly J. Seminara. www.thyroid-info.com/hashimotos-encephalopathy.htm

H.E. Symptoms - In Addition to High Levels of Antithyroid Antibodies

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

TYPE I H. E.

Symptoms present as Stroke-like episodes. It can include epileptic like seizures, neurological deficits, cognitive impairment, aphasia, and ataxia. Myoclonus, tremors, confusion.

Stroke-like symptoms depend on the area of the Brain affected, as well as which hemisphere - Left or Right. Different areas of the Brain are involved in related but separate skills. Left controls the Right side of the body. Right controls Left side of the body. Each hemisphere also contains areas specific to bodily functions. Left side would cause disturbance in language - aphasia. For example: Wernicke's area helps us understand the words we read and hear. It also helps us formulate sentences, which requires the help of Broca's area. Also right-sided hemiparesis (partial paralysis) can occur.

Right side or hemisphere, could cause left-sided hemiparesis (partial paralysis.) Also movement problems such as weakness. Numbness can result in the side of a persons' face that is affected (Left or Right.) Same for the limbs - arm, leg, and the torso. Difficulty speaking or understanding speech. Dimness or loss of vision in one eye. Dizziness, unsteadiness, balance problems, and frequent headaches.

TYPE II H.E.

Symptoms present as dementia to a progressing dementia, psychosis, coma, cognitive deficits and impairment, psychotic episodes, altered consciousness, incontinence both urine and fecal. Seizures, hallucinations, myoclonus, tremors and confusion. In addition, some Symptoms listed above can also present in Type I H.E.

Type II H.E. is seen frequently in teenagers, adolescents and young adults. But can affect adults also.

Both Types are seen in females and males, ages 10 to 82 years old.

Sources: "Hashimoto's Encephalopathy," Hubert C. Chen, MD, Umesh Masharani, MD, Division of Endocrinology, University of California at San Francisco. Southern Medical Journal, 93(5):504-506, 2000

"Pediatric Manifestations of Hashimoto's Encephalopathy," Elza Vasconcellos, MD, Jesus Eric Pina-Garza, MD, Toufic Fakhoury, MD, Gerald M. Fenichel, MD. Department of Neurology; Vanderbilt University Medical Center, Nashville, TN. Pediatric Neurology, 1999;20:394-398.


FAQ - H.E. TREATMENT - HIGH DOSE STEROID TREATMENT

Introduction: What I have listed below is the Recommended Treatment for Hashimoto's Encephalopathy (H.E.) This is the Treatment for H.E. literally in ALL of the Case Studies. An alternative is a newer Treatment called IVIG Treatment. IVIG Treatment is fairly new and was realized AFTER the majority of the Case Studies were published. However, even in CURRENT Case Studies, they still call for High Dose Steroid Treatment for H.E.

Another FAQ is written explaining IVIG Treatment for H.E. I wanted to cover the High Dose Steroid Treatment as a separate issue since this is the Recommended Treatment for H.E. and to address the two Treatments as separate entities.

HIGH DOSE STEROID TREATMENT

Hashimoto's Encephalopathy, (H.E.) responds to Steroid therapy. People respond dramatically to this Treatment. They usually are asymptomatic (No Symptoms) in 1 to 3 days. Dosage varies from High Dose Intravenous Steroid Therapy, then released on estimate of 96 milligrams orally of Steroids such as Medrol (Methylprednisolone), Prednisolone, Prednisone or any such Corticosteroid.

Beverly's Treatment for H.E. -- The following is MY Treatment for H.E. this was co-written by my Physician who treated me, and I am still under his care. Dr. Mark Borchelt, Endocrinologist. The reason why I wanted Dr. Borchelt to assist me in preciously writing out MY Treatment is so any other Physician, no matter what specialty, will know that this was not written entirely by a layperson, that a Doctor clearly over-saw every word written here.

HIGH PULSE IV STEROID TREATMENT

"Patient was given High Pulse IV Steroid Treatment in the Hospital. 1 Gram Solu-Medrol IV, (Methylprednisolone) usually given in one hour or throughout the day.

This Patient was given this dosage in one hour, then off IV. IV given every day in the Hospital for 3 days. 4th day Patient was observed for side effects.

Patient's Symptoms of Aphasia, Ataxia, Right-Sided Hemiparesis were no longer present. Her speech was perfect, as was articulation, rhythm, her balance greatly improved, and she no longer needed her cane. Right-Sided Hemiparesis subsided. Patient no longer stated "feeling numb," on her Right Side. Patient was discharged on 48 milligrams of oral Methylprednisolone (Medrol) twice a day, total milligrams a day, 96.

Slowly decreased milligrams over a period of 2 - 4 months. Patient suffered serious case of rare side effect of Steroid Induced Myopathy. Home Health Care was required for Patient.

This Patient Relapsed at 3 milligrams, after 7 months of slowly decreasing Medrol. Decrease of Medrol was watched carefully to avoid Adrenal shock. Upon presenting symptoms of a Relapse, milligrams should be upped to dosage before Relapse, therefore correct dosage was realized to stabilize patient.

When/If Relapse occurs, either increase daily dosage by 2 milligrams or double daily dose of milligrams for 2 - 3 days to counteract Relapse, then back to original daily dosage. This depends on the clinical course of the Patient."
Corticosteroids are any of the Steroids I mentioned above. We did try Prednisone initially before the IV High Pulse Steroid Treatment. I reacted very badly. I had severe tremors, was extremely shaky, and a host of other problems. This is when it was decided to go with the Medrol (Methylprednisolone) since it is less harsh on ones' body. I responded well to the Medrol, besides all the horrible side effects of being on a high dose of any Steroid.

Per the Case Studies on H.E., some patients are and some are not given the High Pulse IV Steroid Treatment, but put on 50 milligrams to 150 milligrams of Steroids daily. Remember that each person is different. Someone may be able to tolerate a certain drug, or dosage and another may not. All are then slowly decreased over many months, depending on their clinical course. Rapid improvement can be observed within 1 to 3 days. This is true. But, overall it takes a very long time of slowly decreasing the Steroids to get optimum results.

Most patients (90%) stay in Remission even after Treatment has been discontinued. H.E. is a Relapsing condition.

If a Patient does Relapse, a pharmacotherapy plan should be in place under direct supervision of the Physician. This will vary per patient. In my case, my daily dosage was 4 milligrams per day, if I Relapsed I upped my dosage to 6 milligrams for 2 - 3 days - the Relapse was counteracted within 24 hours. I then would go to my original daily dose of 4 milligrams per day.

Patients should have follow-ups for up to 10 years or more. Few patients DO NOT RESPOND to Steroids. SEE: "FAQ - H.E. TREATMENT - IVIG."

Sources: "Hashimoto's Encephalopathy," Hubert C. Chen, MD, Umesh Masharani, MD, Division of Endocrinology, University of California at San Francisco. Southern Medical Journal, 93(5):504-506, 2000.


FAQ - H. E. TREATMENT - IVIG - INTRAVENOUS IMMUNOGLOBULIN TREATMENT

Introduction: The Treatment for H.E. that initially will be done by a Physician, will be the High Pulse IV Steroid Treatment. This was and still is the preferred Treatment for H.E. However, it has been discovered that people who do not respond well to the Steroid Treatment do have an option - IVIG Treatment, formally known as: Intravenous Immunoglobulin Treatment.

To explain briefly, (a more detailed description follows the Introduction,) this therapy is rather new. Its purpose is to replace Antibodies with donated Antibodies, after careful screening for any contaminates, into someone elses body via IV. In Autoimmune Diseases, for unknown reasons, the body's Antibodies attack the body’s own tissues and organs.

We have people in our Group with H.E., who are receiving this specific Treatment. They are doing well.

IVIG - INTRAVENOUS IMMUNOGLOBLULIN TREATMENT

Also known as IGIV, and Immune Globulin Intravenous (Human) (Systemic).

IVIG belongs to a group of medicines known as immunizing agents. It is used to prevent or treat some illnesses that can occur when your body does not produce enough of its own immunity to prevent those diseases. It is important that before this Therapy you inform your Doctor if you have any allergic reaction to intramuscular or intravenous immune globulins, or if you are allergic to any other substances such as foods, preservatives or dyes. You should inform your Doctor if you are on a special diet such as low-sodium or low-sugar diet. Make sure your Doctor is aware of any other Medical problems especially: Diabetes Mellitus, Heart Problems, Immunoglobulin A (IgA) deficiencies, Kidney Problems or Severe allergic reaction to any previous IGIV/IVIG. If you have recently received a live virus vaccine, you should wait at least 2-3 weeks before having IVIG Treatment, ask your Doctor since this depends on the vaccine you received. Also, wait 5 to 11 months after IVIG Treatment before receiving any live virus vaccines, also depending on the vaccine received.

This IV therapy replaces antibodies with infusion of donated antibodies. Antibodies - Proteins that help combat toxins and bacteria are extracted from the blood of hundreds of donors, then they are treated to remove contaminants and freeze-dried. The Antibodies are then mixed with a sterile solution and given intravenously. This Treatment usually is given on an Outpatient basis. The first Treatment may be done as an In-Patient in the Hospital to monitor for any side effects. The patient may go twice a week for the IV, and may take from 3 to 4 hours for each infusion. This Treatment continues monthly, usually from twice a week every month, to once a week every month, to once a month. It depends on the clinical response by the patient. Frequency of treatment depends on the individual. Usually the slower rate of infusion (IV Drip) the better. This could be from 4 to 6 hours. IVIG is delivered via IV and based on your weight. Remember - every one will react differently, and at different times to any procedure, any medication, and any dosage. Prognosis for IVIG is to go as long as possible between infusions and still feels well.

This Treatment is less toxic, and has fewer side effects than the High Dose IV Steroid Treatment for H.E. However, the recommended Treatment for H.E. is the High Dose IV Steroid Treatment (Immunosuppression.) IVIG is used only when someone DOES NOT respond to the Steroid Treatment. IVIG is used as a treatment for many other illnesses, such as: Guillain-Barre Syndrome, Lupus, Multiple Sclerosis, etc.

Source: National Institute of Health, Washington, D.C. Other Resources. Drug Information. Web Site: www.nih.gov/health.


FAQ - H. E. TREATMENT - PLASMA TRANSFER

Introduction: Plasma Transfer, also known as Plasma Exchange, and the formal name Plasmapheresis. This SHOULD NOT be confused with IVIG TREATMENT. This is a separate, different treatment. Also, most importantly - this is the LEAST USED Treatment for H.E. In fact, if I am correct, perhaps only 2 people in our Group have tried this Treatment, each time it had to be discontinued, and the IVIG TREATMENT was done. The Case Studies on H.E. rarely, if at all, refer to this as a possible treatment. I still wanted to address and define this for the Group because I know many of you have seen these words in many of the e-mails and I am sure are not aware of preciously what this is, or why it would be done. Keep in mind, the standard Treatment for H.E. IS: HIGH DOSE IV STEROID TREATMENT, as I outlined in that specific FAQ. If the patient does not respond to this, then the IVIG TREATMENT is done.

PLASMA TRANSFER, PLASMA EXCHANGE, PLASMAPHERESIS

This procedure consists of the patient's blood being filtered through a special machine to separate the plasma, the liquid portion of the blood, from the actual blood cells.

The plasma can be removed and replaced with another solution such as saline, albumin, or specially prepared donor plasma and the reconstituted solution may then be returned to the patient. Picture this: The IVIG TREATMENT is an IV that is given to the Patient. The Patient receives Antibodies that have been specifically separated from many blood donors, and prepared for the patient. With a Plasma Transfer - think of it as an IN and OUT procedure. One tube taking the patient's blood OUT going through a special process as explained above, then putting it back IN - OR putting in blood donor's plasma. These are two separate, different procedures. The KEY here is the way Antibodies are re-introduced with the Plasma Transfer procedure vs. the IVIG TREATMENT procedure.

If you have more questions about these Treatments, PLEASE refer to my SOURCE at the end of each FAQ.

Plasma Transfer, Plasma Exchange, Plasmapheresis - is increasingly used to treat autoimmune diseases, disorders such as Lupus, Multiple Sclerosis, etc. When the plasma is removed, it takes with it the Antibodies that have been developed against self-tissue, hopefully stopping the attack on the patient's own body. Another use of this procedure is to remove some of the blood cells when there are too many, as in Leukemia.

Plasma Transfer carries with it the same risks as any intravenous procedure, but is otherwise generally safe. The risk of infection increases with the use of donor plasma, which may carry viral particles despite screening procedures. The procedure is done in a clinical or a hospital setting.

Source: MedicineNet.com, National Library of Medicine. Medical Terms Dictionary. www.medterms.com


JOINING AN ONLINE SUPPORT GROUP

To join an online support group for H.E., visit the following page for more information on the list, how to join, and how to participate in the discussion.

Topica Email Group on Hashimoto's Encephalopathy



FAQ - IMPORTANT LINKS

Introduction: Often I am asked many questions, usually the same ones, over and over. Or ones I cannot answer, but know where that information is located. There are many Links, some are regarding your Thyroid, Thyroid Medication, Hashimoto's Thyroiditis, your Immune System, Medications, etc., etc. I have made a list of Important Links that will answer your questions - and also educate you.

Every one of us has to make an effort to educate ourselves about many issues and questions that arise. Most of your answers will be here. Listed below are those Links I believe are of importance. I strongly suggest everyone should go in and read them, and become familiar with their content. You will see the beginning of the List contains many Articles with information by Mary Shomon. Further on, are Links for looking up your Medication - know the side effects to expect, to Adrenal and Endocrine Sites. I've made it very easy - just click on the Link I have provided to bring you directly to the information you need to know or are looking for. All are relevant to H.E. and the many discussions we have here.

IMPORTANT LINKS

My Web Site - for H.E.
Which contains many Links there for your use and education)
www.thyroid-info.com/HELPS.htm

My Article: "Hashimoto's Encephalopathy: A Neuroendocrine Disorder," by Beverly J. Seminara
www.thyroid-info.com/hashimotos-encephalopathy.htm

Introduction to my Article by Mary Shomon. Thyroid Advocate, 6 time published Author and Guide for Top Rated Thyroid Site:
http://thyroid.about.com/library/weekly/aa060900a.htm

LINKS RELATED TO THYROID DISEASE

Mary Shomon's Thyroid Site -- About.com
Mary Shomon's Thyroid-Info.com Site

Excellent sources of information for anything and everything Thyroid related. See the Side Bar on the Left of her About.com page for a List of several Thyroid related illnesses and additional information.

You will see a list of Items to click onto. To name just a few: Hypothyroidism, Thyroid Drugs, Tests for Thyroid Disease, Thyroid Doctors by Area, Endocrinology, Related Conditions to Thyroid Disease, Adrenal/Addison Disease, Organizations/Groups for Thyroid Disease and Related Diseases, etc. You can subscribe to this free Thyroid Newsletter at this Site. I find it most useful and an excellent source that contains the most current, accurate and important information about your Thyroid and related diseases.

Thyroid Glossary
Mary Shomon's definitions for all the Thyroid related words we so often hear and see.
http://thyroid.about.com/library/glossary/blglossary.htm

Thyroid Disease 101: All the Basics - Mary Shomon
A must read for anyone either newly diagnosed with Thyroid disease, or even those who have Thyroid Disease.
thyroid.about.com/library/weekly/aa042100a.htm Thyroid Basics - Mary Shomon
http://thyroid.about.com/cs/basics_starthere/index.htm

Thyroid Disease Far More Widespread Than Originally Thought - 13 Million May Be at Risk - Mary Shomon
http://thyroid.about.com/library/weekly/aa022800a.htm

Genetics/Thyroid Link - Mary Shomon / Thyroid Diseases run in families.
http://thyroid.about.com/library/news/blneckgen.htm

All About Thyroid Drugs - Mary Shomon
http://thyroid.about.com/library/weekly/aa082900a.htm

Thyroid Drug Base - Mary Shomon
Complete database with information on Thyroid Replacement Drug Hormone. TRH - Thyroid Replacement Hormone.
http://thyroid.about.com/library/drugs/bl-drugs.htm

Find a Top Thyroid Doctor - Looking for a Great Thyroid Doctor in Your Area? - Mary Shomon
Looking for your first or a new Endocrinologist in your area? People have written from all over the USA recommending an Endocrinologist that they believe is great with treating Thyroid Diseases. They give the Doctor's name, and location.
http://thyroid.about.com/library/weekly/bldoc1.htm

Hypothyroidism Information Center - Mary Shomon
http://thyroid.about.com/cs/hypothyroidism/index.htm

Lab's Normal Thyroid Levels May Be Abnormal For You - Mary Shomon
http://thyroid.about.com/library/news/blnormalforyou.htm

Hashimoto's Thyroiditis/Disease vs. Hypothyroidism - Mary Shomon
Hashimoto's Thyroiditis (H.T.) also known as Hashimoto's Disease is a DISEASE.
Hypothyroidism is a CONDITION. Many people do not know the difference and use the term interchangeably.
NOTE: Not to be confused with H.E. - Hashimoto's Encephalopathy.
http://thyroid.about.com/library/weekly/aa30802a.htm

Studying the Autoimmune Disease Puzzle - Mary Shomon
http://thyroid.about.com/library/links/blautoimmune.htm

Autoimmune Hypothyroidism: A Mind - Body Exploration - Mary Shomon
http://thyroid.about.com/library/weekly/aa060901a.htm

Treating Patients Who Have Elevated Thyroid Antibodies But Have Normal TSH Levels - Mary Shomon
May help prevent full-blown Hypothyroidism. Researchers found that use of preventative Thyroid Drug treatment in patients who test positive for Hashimoto's Antibodies but who have a normal TSH (Thyroid Stimulating Hormone) may slow or prevent full-blown Hashimoto's Hypothyroidism.
http://thyroid.about.com/library/weekly/aa062901a.htm

Could Antibiotics Cure Your Hashimoto's Thyroiditis/Disease? - Mary Shomon
http://thyroid.about.com/library/weekly/aa042301a.htm

Seven Ways to Balance Your Immune System - Mary Shomon
http://thyroid.about.com/library/weekly/aa040901a.htm

Autoimmune, Adrenal or Endocrine Problems Information Center - Mary Shomon
http://thyroid.about.com/bl-immune.htm

Endocrine Information Center - Mary Shomon
http://thyroid.about.com/library/endocrine/blthyroid.htm

The Adrenal - Thyroid Connection - Mary Shomon
http://thyroid.about.com/library/weekly/aa052801a.htm

When Drug Side Effects Get Out of Hand - Mary Shomon
Read this article of what happened to Mary when she suffered from a rare adverse reaction to an antibiotic. I noticed she experienced similar Neurological symptoms as some H.E. patients.
http://thyroid.about.com/library/weekly/aa011102a.htm

YOUR ENDOCRINE SYSTEM - YOUR THYROID GLAND

Learn About Your Thyroid, Thyroid Diseases and Your Endocrine System

Here are two excellent Sites with much information that relates to your Thyroid. Including how this very important Gland plays a vital part with your body's metabolism and many other areas.

www.endocrineweb.com
www.glandcentral.com

MYOCLONUS INFORMATION

Myoclonus Research Foundation Web Site
www.myoclonus.com/index.htm

KNOW YOUR MEDICATIONS

Know Your Meds - Side Effects From Common to Rare, etc.

I have said over and over to KNOW about the medications you are taking. I have found other Web Sites are too general. Even the Information sheet you get from your Pharmacist is fine, however, this Site is the best one and gives the most detailed, easy to understand information about the medicines your are taking, or about to take. It is very important - to know what Side Effects to expect, if any. Knowing your medications will prevent any surprises. This Site is by the National Institute of Health, (NIH) Washington, D.C.

www.nih.gov/health

Once you are in this Site you will see a paragraph that says: "Drug Information." Under that is a place to click onto: "Drug Information." Once you have, you will see the alphabet. Click on the letter of the first letter of your medication - Example: P - for Prednisone. A list of medications that start with that letter will come up. Scroll until you find your medication. Click on that medication where the Link is for it, directly under the name.

The information is in easy to understand language. I highly recommend you print this out. It will give you more information than any other place I have found, including the Pharmacy. It was a lifesaver for me when I suffered from the Rarest of Side Effects. Because I knew what could happen - I was not alarmed when it did.

I hope these Important Links have helped you understand more about your Thyroid and other illnesses related to it that you might have. In addition, I hope you have learned how important your Thyroid is in relation to our body. Also, that you are aware of the detailed information related to any medication you are taking. I am sure these Links have answered many of your questions, and have given you access to the information you need.


FAQ - DEFINITIONS

Introduction: We come across many medical terms when learning about Hashimoto's Encephalopathy. I have made a list of the most common ones we tend to either read, see in our Doctor's notes, or perhaps in conversation with our Doctors and ourselves. Perhaps this list will help clarify many words and their meanings. Listed below, alphabetically, are frequently used words with their definitions. Many of you have either read these words in my Article: "Hashimoto's Encephalopathy - A Neuroendocrine Disorder," or in the Case Studies included in my Information Packet, or perhaps even in conversations with the HELPS Group. I am sure these will help you understand more clearly what is so often discussed.

1) ANTIBODIES - Protein manufactured by lymphocytes (type of white blood cell) to neutralize foreign protein in the body. Such as: Bacteria, Viruses. Antibodies help the body destroy invading microorganisms. Antibodies are also known as Immuglobulins. These proteins are produced by your body to promote a healthy immune system. When the immune system is challenged, Immuglobulins (antibodies) levels can drop. In some disorders Antibodies are formed against the body's own tissue or organs. This results in an AUTOIMMUNE DISORDER.

2) APHASIA - Disturbance of previously acquired language skills caused by Cerebral (Brain) dysfunction. Affects the ability to speak, handwriting difficulties, math difficulties.

a) BROCA'S (Expressive) APHASIA - Broca's Area of the Brain (Left Hemisphere - Brain) causes difficulty in expression of language. Speech is non-fluent, monotone, slow, labored, loss of normal rhythm.

b) WERNICKE'S (Receptive) APHASIA - Wernicke's Area (Left Hemisphere - Brain) causes difficulty in comprehension. Speech is fluent but because of impaired comprehension, its' content is disturbed, many errors in word selection and grammar. Writing is impaired and spoken or written commands are not understood.

c) NOMINAL APHASIA - Difficulty naming objects, finding words. The person is able to choose the correct name, but has difficulty saying it.

3) ATAXIA - Coordination problems, clumsiness. Affecting balance and gait, limb or eye movements, and/or speech.

4) ATROPHY - Shrinking or wasting away of tissue or an organ.

5) AUTOIMMUNE DISEASE - A disease where the body's immune system attacks the body's own tissues or organs. Also see: HASHIMOTO'S THYROIDITIS, also known as HASHIMOTO'S DISEASE.

6) AUTOIMMUNE THYROIDITIS - Hashimoto's Thyroiditis - H. T. Also see: HASHIMOTO'S DISEASE.

7) CSF - Cerebrospinal Fluid. (Often referred to as a Spinal Tap.)

a) LUMBAR PUNCTURE - SPINAL TAP - Important Test to diagnose many conditions affecting the Brain and Spinal Cord. This fluid contains dissolved Glucose, Proteins, Salts and some Lymphocytes (roving cells that are part of the Immune System) that are also found in blood.

8) CT SCAN ("CAT SCAN") - Computerized Axial Tomographic Scan. Numerous X-rays. Beams through the Brain from various angles and levels. Produces a 3-Dimensional picture.

9) CEREBRAL - Pertaining to the Brain. Also see: ENCEPHALOPATHY.

10) COMA, MYXEDEMA COMA - State of unconsciousness, unresponsiveness. No response to external stimuli.

11) CORTICOSTEROIDS - Hormonal preparations used as anti-inflammatories or as immunosuppressant agents that suppress the Immune System. Also see: STEROIDS.

12) DEMENTIA - General decline in all areas of mental ability. Most obvious feature is increasing intellectual impairment. Person may exhibit problems remembering recent events, lost in familiar environments, fail to grasp what is going on, and confusion. Sudden emotional outburst, failure in judgement, magnification of his/her unpleasant personality traits. Have unreasonable demands, accusations, paranoia, and delusions. Irritability, anxiety. Patient may progress to shallow indifference to words or feelings. Personal habits deteriorate.

13) EEG - Electroencephalography. Records electrical impulses of the Brain by attachment of electrodes.

14) ENCEPHALITIS - Inflammation of the Brain.

15) ENCEPHALOMYELITIS - Inflammation of the Brain and Spinal Cord.

16) ENCEPHALOPATHY - Any disease or disorder affecting the Brain, especially chronic and/or degenerative conditions.

17) EUYTHYROID - Thyroid Gland that is functioning normally.

18) GOITER - Means swelling or enlargement of the Thyroid Gland. This indicates the Thyroid Gland is not working properly and a sign of Hypothyroidism or Hyperthyroidism. A Goiter is also caused by an inflammation of the Thyroid Gland.

19) * HASHIMOTO'S ENCEPHALOPATHY - A Relapsing encephalopathy occurring in association with Hashimoto's Disease, with high titers of Antithyroid Antibodies. Clinically the condition presents with Altered Consciousness, Confusion, Focal or generalized Seizures, Myoclonus and episodes of Stroke-like deterioration.

20) HASHIMOTO'S THYROIDITIS (H.T.) - HASHIMOTO'S DISEASE - Is an AUTOIMMUNE condition where your Immune System begins to attack various organs and tissues in your body as it would a virus. In Hashimoto's Thyroiditis (H.T.) your Immune System attacks your Thyroid Gland. H.T. can be confirmed by a Thyroid Antibody Test. The test results will show elevated Thyroid Antibodies. H.T. is the most common cause of Hypothyroidism. Also see: AUTOIMMUNE DISEASE.

21) HEMIPARESIS - RIGHT SIDED OR LEFT SIDED - Partial paralysis. Could be Right Sided Hemiparesis or Left Sided Hemiparesis. A feeling of numbness on either side including face, leg, arm and torso.

22) HYPOTHYROIDISM - The Thyroid Gland produces too few Thyroid Hormones. The Thyroid Gland is underactive. The major cause of Hypothyroidism is Hashimoto's Thyroiditis (H.T.) also known as Hashimoto's Disease, and Lymphocytic Thyroiditis. Hypothyroidism slows down your body's functions. Metabolism slows, heart beats slower, muscles may weaken, difficulty thinking clearly and remembering.

Hypothyroidism itself has well known central nervous system complications. Symptoms such as: Dementia, Progressive Stupor, Coma, Ataxia, Psychosis, Seizures, and Myoclonus.

These are in addition to the more common Symptoms of: Tiredness, Dry Skin, Weight Gain, Feeling Cold, Coarse Hair, Hair Loss, Hoarseness, Constipation, Yellowish Skin, Enlarged Thyroid Gland (Goiter), Difficulty remembering things, Decreased Concentration, Depression, Irregular or Heavy Menstruation, Infertility, Muscle Aches, Lack of Coordination, High Cholesterol, Slowed Heartbeat, Low Body Temperature.

23) IMMUNOSUPPRESSION - Drugs that hamper the body's Immune System. Usually used to treat AUTOIMMUNE DISEASES.

24) IVIG - Intravenous Immunoglobulin Treatment - This is an intravenous therapy that replaces ANTIBODIES. Antibodies - Proteins that help combat toxins and bacteria are extracted from the blood of hundreds of donors, then they are treated to remove contaminants and then freeze-dried. The Antibodies are then mixed with a sterile saline solution and given intravenously. This treatment usually is given as an Outpatient. The patient may go twice a week for the IV, and it may take 3 hours or more with every visit. It all depends on the individual. This treatment continues monthly - again, depends on the individual. It is less toxic, and has less side effects than the High Dose Steroid Treatment for H.E. However, the recommended treatment for H.E. is High Dose (Immunosuppression) Steroid Treatment. IVIG is usually used only when someone does not respond to the Steroid Treatment. IVIG is used as a treatment for many other illnesses, such as: Gillian-Barre Syndrome, Multiple Sclerosis, etc. See separate FAQ - H.E. TREATMENT - IVIG.

25) LEVOTHYROXINE THERAPY - Synthetic Thyroid Hormone to treat Hypothyroidism, Thyroid Disease. Your Thyroid Medication.

26) MRI - Magnetic Resonance Imaging. Creates a strong magnetic field. The picture can then be seen slice by slice.

27) MYOCLONUS - Rapid, uncontrollable jerks or spasms of muscles occurring at rest or during movement. Can the entire body resemble a SEIZURE though the person never looses consciousness, is alert and totally aware. Also may be just upper body or just a limb, arm or leg. Also see: SEIZURE.

28) MYXEDEMA - Is sometimes used interchangeably with adult Hypothyroidism. Also see: HYPOTHYROIDISM, HASHIMOTO'S THYRODITIS, and HASHIMOTO’S DISEASE.

29) NEURONS - Nerve cells in the nervous system. Like the complex wiring of an electrical machine. Neurons signal/transmit electrical impulses.

30) SEIZURE - Sudden episode of uncontrolled electrical activity in the Brain. When confined to one area, the person may experience tingling or twitching of a small part of the body. If this electrical activity spreads throughout the Brain, consciousness is lost and a GRAND MAL SEIZURE results. Also see: MYOCLONUS.

a) GRAND MAL SEIZURE - Person may have warning symptoms and may cry out, fall to the ground unconscious and suffer from generalized jerky muscle contractions. This may last for a few minutes. A person may remain unconscious for a time and have no recollection of the seizure upon awakening. Also see: MYOCLONUS.

b) PETIT MAL SEIZURE - Person may have a momentary loss of awareness. Other people may think the person is daydreaming. These types of Seizures may occur hundreds of times a day or sometimes last as long as half a minute each. These Seizures are most often seen in children and adolescents.

31) STEROIDS - Drugs that are CORTICOSTEROIDS used to decrease inflammation or suppress the Immune System. There are many types of Steroids: Methylpredlisone (Medrol); Prednilisone; Prednisone; Nandrolone; Oxandrolone; Dexamethasone. Also see: IMMUNOSUPPRESSION.

32) STUPOR - A state of almost complete unconsciousness from which a person can be aroused briefly by vigorous external stimulation.

33) THYROXINE - The most important Thyroid Hormone produced by the Thyroid Gland. Its Symbol is: T-4.

34) TSH - Stands for Thyroid Stimulating Hormone.

SOURCES: The American Medical Association, Home Medical Encyclopedia. Volume One and Volume Two. Medical Editor: Charles B. Clayman, M.D. Random House. * Companion to Clinical Neurology. William Pryse-Phillips, M.D., 1991.



bevnew.jpg - 41632 BytesI hope all of the information above has answered your questions and helped you understand more about H.E.

Regards,

Beverly


 Beverly J. Seminara
International Patient Advocate for Hashimoto's Encephalopathy

Visit my Research Website, Hashimoto's Encephalopathy - A Complete List of Published Case Studies



All information presented on these web pages is for informational purposes only, and is not meant to diagnose, prescribe, or to administer to any physical ailments. In all matters related to your health please contact a qualified, licensed practitioner.