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PROGRESSION OF TREATMENT

 

HASHIMOTO’S ENCEPHALOPATHY

 

1960’s to 2005

 

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TREATMENT FOR H.E. – 1960’s to 2000 - 2002

 

According to the Case Studies, the course of Treatment for H.E. has been as follows, and primarily in this order.

 

·        Oral Corticosteroids and Levothyroxine for Thyroiditis

 

 

·        High Pulse IV Steroid Treatment and Levothyroxine for Thyroiditis

 

                  Per the Case Studies, after High Pulse IV Steroid Treatment is completed, the H.E. Patient was discharged on oral Corticosteroids – Prednisone or Medrol.  Prescribed milligrams of oral Corticosteroids fall within the range of 60 mgs. to 100 mgs. Daily.  This course of Treatment involves a slow wean down from the high Steroid dosage.  This time period should take 10 -12 months in order to reach elimination of Steroid medication.   

 

                  H.E. Patients taken down within a time frame of 3 - 6 months are known to have severe Relapses with their H.E. Symptoms.  Due to the high oral dosage of Steroids, Patients should also be prescribed a proton pump inhibitor (PPI) to block the production of acid by the stomach due to the high dosage.  In addition, Patients should receive 1,500 I.U. of Calcium with Vitamin D (OTC) while on Corticosteroids.

 

 

NOTE:   High Pulse IV Steroid Treatment is outlined in detail in my FAQ under the same title. This is the Treatment I received for MY H.E.  I was discharged on 96 mgs. orally of Medrol (Methylprednilisone.)   I had difficulty tolerating Prednisone, therefore, since Medrol is known to be ‘easier on the body’ than Prednisone, my Physician prescribed Medrol which I was able tolerate.

 

The FAQ mentioned above, was written by my treating Physician, my Endocrinologist. 

 

 

·        IVIG  - Intravenous Immuglobulin and Levothyroxine for Thyroiditis

 

                  According to the Case Studies during this time frame, they clearly indicated that IVIG should be administered only if the Patient is unable to physiologically tolerate Steroids, or High Pulse IV Steroid Treatment, or if Corticosteroid treatment was ineffective in treating their H.E. Symptoms.  A slower rate of infusion (IV Drip) works best for the Patient.

 

                  IVIG is obviously administered intravenously.  It too falls in the group of immunizing agents.  Its purpose is to replace antibodies in the system via infusion of donated and carefully screened antibodies from hundreds of individuals.

 

                  Frequency of IVIG infusions depend on the clinical response of the H.E. Patient. 

 

 

·        Plasmapheresis (Plasma Transfer/Plasma Exchange) – and  Levothyroxine for Thyroiditis

 

                  According to the Case Studies during this time frame, Plasmapheresis would be considered rarely.  However, in a few Patients it was used successfully.

 

                  Plasmapheresis, also known as Plasma Transfer or Plasma Exchange, differs from IVIG.  The Plasmapheresis procedure consisting of the Patients’ own blood being filtered, separating the plasma from blood cells, or the plasma once removed can be replaced with albumin or specially prepared donor plasma and the reconstitution solution is returned to the Patient.  When the plasma is removed it takes with it the Antibodies that have developed against self-tissue.

 

                  Frequency of Plasmapheresis depends on the clinical response of the H.E. Patient. 

 

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TREATMENT FOR H.E.  2002 - 2003 – 2004

 

Treatment for H.E. now included Combinations of Immunosuppressant medications.

 

Individuals diagnosed with H.E. were still receiving the Treatments mentioned above.  However, there were additional medications now being prescribed - a Combination of Immunosuppressant medications in addition to Levothyroxine for Thyroiditis. 

 

This had not occurred prior to 2002.

 

In the beginning, Combinations of Immunosuppressant medications depended on the individuals’ geographical location. 

 

 

For example:  Some people from the United Kingdom were on Combinations of Immunosuppressant medications such as:  Imuran (Azathioprine) and Cytoxan (Cyclophosphamide) and sometimes the addition of a Corticosteroid and Levothyroxine for Thyroiditis.  In the USA, this Combination approach had not yet begun. 

 

 

Within a year, some H.E. Patients in the USA were being treated with Cellcept (Mycophenolate Mofetil) and Levothyroxine for Thyroiditis more frequently vs. Corticosteroid Treatment.  Also, some people in the USA were being treated with a Combination of the following Immunosuppressants:  Imuran AND Cellcept, and Levothyroxine for Thyroiditis. 

 

In the USA and Europe many H.E. Patients were still receiving High Pulse IV Treatment, including Levothyroxine for Thyroiditis. 

 

 

·        IVIG Treatment for H.E. was increasing vs. Corticosteroid Treatment, including Levothyroxine for Thyroiditis. 

 

·        Plasmapheresis also increased as Treatment for H.E., including Levothyroxine for Thyroiditis.

 

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CONFUSION AMONG H.E. PATIENTS REGARDING TREATMENT 

 

During the time mentioned above, published Case Studies increased in volume.  This corresponded with the increase of people diagnosed with H.E. who joined:  HELPS – Hashimoto’s Encephalopathy Loved Ones and Patients Support Group, as well as the increase in private emails I would receive from people regarding the Diagnosis and Treatment of their H.E. or of a loved one (family member.)  In addition, both increases within HELPS and within the private emails I would receive remained consistent. They generated from all over the USA and the World.

 

 

IMPORTANT:  Many of the private emails I would receive from individuals regarding an H.E. Diagnosis and Treatment chose NOT to join HELPS.  Therefore, there are so many others with H.E. NOT included in published Case Studies, and NOT in the number of people within HELPS. 

 

 

Often there would be confusion within the Group for H.E. Patients in the USA since H.E. Patients in the United Kingdom would explain they were on a COMBINATION of medications such as:  Cyclophosphamide and Azathioprine to treat their H.E., and Levothyroxine for Thyroiditis.   Just as Patients in the United Kingdom did not recognize the names Imuran or Cellcept; Patients in the USA did not recognize the names Cyclophosphamide and Azathioprine.  It became apparent that European and Mediterranean Countries would use the Generic Name for a medication vs. the Brand Name that a Patient in the USA would recognize.

 

In order to clarify Pharmaceuticals as well as different Medical Health Systems, it became necessary for me to explain to the USA Patients that the Medical Health Systems in other Countries were not like ours.  I did the same with Patients from other Countries explaining our medical system to them.  I also emphasized that many Pharmaceutical medications in European and Mediterranean Countries were not available here due to the (Federal Drug Administration) FDA requirements for approval regarding the release of medications for the public.

 

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TREATMENT FOR H.E.  2004 – 2005

 

Presently the Treatment for H.E. still follows the Treatments outlined in:  Treatment for H.E. – 1960’s to 2002   indicated above.  European, Mediterranean, Asian Countries were the first to use Combinations of Immunosuppressants, in addition to Levothyroxine for Thyroiditis, regarding Treatment for H.E.  North America (USA including Canada) then followed this progression with Combinations of Immunosuppressants. 

 

 

These Combinations include: 

 

 

·        Cellcept and Levothyroxine for Thyroiditis

 

·        Cellcept (Mycophenolate Mofetil) and Prednisone or Medrol, and Levothyroxine for Thyroiditis

 

·        Cellcept (Mycophenolate Mofetil,) and Medrol and Plasmapheresis, and Levothyroxine for Thyroiditis

 

·        Imuran (Azathioprine) and Cytoxan (Cyclophosphamide) and Levothyroxine for Thyroiditis

 

·        Imuran (Azathioprine) and Cytoxan (Cyclophosphamide) and Medrol or Prednisone and Levothyroxine for Thyroiditis

 

 

Medical Professionals within the USA and all over the World are still following the Treatments as outlined in: 

Treatment for H.E. – 1960’s to 2002  indicated above.  In addition, many Medical Professionals within the USA and all over the World are now prescribing Treatment for H.E. with Combinations of medications that perform the same/similar function of Corticosteroids - Immunosuppressants. 

 

 

Corticosteroids – Prednisone, Medrol and Dexamethasone suppress the immune system.

 

 

Cellcept (Mycophenolate Mofetil); Cytoxan (Cyclophosphamide); Imuran (Azathioprine) also are Immunosuppressants. 

 

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BOTTOM LINE 

 

 

·        COMBINATIONS of Immunosuppressant medications as mentioned above, were and are being prescribed, and Levothyroxine for Thyroiditis, for the Treatment of H.E. 

 

 

·        Cellcept and/or Imuran in addition to Corticosteroids, and Levothyroxine for Thyroiditis were and are being prescribed for the Treatment of H.E.

 

 

·        Treatments as outlined in:  Treatment for H.E. – 1960’s to 2002   indicated above, were and are being prescribed and Levothyroxine for Thyroiditis, for the Treatment of H.E.  

 

 

·        Which Treatment or COMBINATION of Treatments is best for H.E., depends on the clinical response of the H.E. Patient.

 

 

IMMUNOSUPPRESSION IS A CONSISTANT APPROACH FOR THE TREATMENT OF H.E.

 

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ETIOLOGY OF HASHIMOTO’S ENCEPHALOPATHY

 

Per the Case Studies, Medical Professionals all across the Globe are still undecided regarding the etiology of Hashimoto’s Encephalopathy.

 

 

 There are three Hypotheses:

 

 

·        H.E. is related to the Thyroid due to the commonality of H.E. Patients exhibiting Elevated Thyroid Antibodies.  H.E. Patients can be Hypothyroid, Hyperthyroid or Euthyroid 

 

·        H.E. is an Autoimmune Disease all onto itself  

 

·        H.E. is an Autoimmune Cerebral Vasculitis 

 

            ALSO:

 

·        There are some Medical Professionals who claim there is:  “No such thing as H.E.”

 

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Only Research and Time will tell.  Hashimoto’s Encephalopathy falls under the category of being an “Orphan Disease,” and a “Rare Disease,” since less than 200,000 people have been OFFICIALLY diagnosed. 

 

 

However, as stated over and over again in the majority of Case Studies, there is a general consensus that H.E. is certainly “Underdiagnosed.”  This means there can be and likely have been, THOUSANDS of people with H.E. NOT being Diagnosed or Treated.

 

 

It is a disheartening reality, that any hope for discovery of the true etiology, exact Treatment and the Prevention of H.E., may never be realized.

 

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