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Two doctors who are listening, and an interesting documentary

This post below was originally written in 2010, and the same holds true today–that if you can find a doctor who is positive about Stop the Thyroid Madness, you at least are a step ahead of most doctors.

BUT….be prepared that you will still have to guide most any doctor, which is why you need to learn from the books and website. Read! Study! Learn!! If a doctor can’t be guided, you’ve got a dud. 

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Just within the last few weeks, I’ve been informed by patients that their doctor has outright recommended the patient-to-patient Stop the Thyroid Madness website or book in their newsletter, and agreed with what patients have learned. That is huge!

This also underscores the difference YOU can make in your doctors office, even when you’re not sure you did.  You wouldn’t have even seen these kind of newsletters two years ago, and it means we’ve come a long way, baby. Though many doctors still lag behind, the following two doctors deserve our praise for LISTENING:

1) Allan Lieberman, M.D. Dr. Lieberman is the Medical Director of The Center for Occupational and Environmental Medicine in North Charleston, South Carolina. He has practiced medicine for 51 years, specializing for the last 33 years in Environmental Medicine and Toxicology.

He wrote about and recommended the STTM book in his August 19th newsletter and after a patient had given him the STTM book. You can read what he wrote here.

2) David Edelberg, M. D. is board certified in Internal Medicine and founder of Whole Health Chicago in Illinois. He is nationally recognized as one of the pioneers of integrative medicine which combines conventional medicine with alternative therapies.

 He wrote about STTM in his Sept. 14th newsletter, and it was written after a particular patient spoke “loud and clear” against a bias she felt he had, and strongly recommended STTM to him. You can read what he wrote here.

NEED MORE DOCTOR IDEAS??

Go here: http://stopthethyroidmadness.com/how-to-find-a-good-doc

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DO YOU QUALIFY TO BE IN THIS DOCUMENTARY??

I have been notified by a production company that they are working on a documentary about people who have reversed symptoms of Alzheimer’s and dementia such as memory loss and cognition problems through natural means.

But they are also interested in interviewing thyroid patients who have had severe memory and cognitive issues before their thyroid was corrected, and which went away afterwards. The key here is “severe”, then the use of natural desiccated thyroid.

i.e. If you are someone who had severe brain fog which went away with natural desiccated thyroid, you can contact them at ddvideoproductions@gmail.com or call either Patricia Tamowski at 914-582-3194 or Alan Scott Douglas at 914-482-8208.  They will then email you full details of the documentary to see if they would like to participate. This would be a good place to mention your patient site Stop the Thyroid Madness.

UPDATE: I never found out if this documentary was completed. But, there is a book out you should read with breaking information to counter Alzheimers. It’s called The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline by Dale Bredesen–information which might apply to any form of dementia or memory loss….

If you have Hashimoto’s, you may want to become aware of Hashimoto’s Encephalopathy

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Though this post first came up in 2010, it has been updated to the present day and time. 

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I got an email from a sweet thyroid friend and advocate, Bev, aka Thyro-butterfly, whom I’ve known for several years. And Bev has had two relapsing and unnerving bouts with a condition that’s not common, and  under-diagnosed: Hashimoto’s Encephalopathy (HE).

She stated “I think everyone who has Hashimoto’s disease should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though not curable, is relatively easy to do….”

What is Hashimoto’s Encephalopathy (HE)?

Hashimoto’s Encephalopathy is a rare neuroendocrine disorder which was termed and recognized in 1966 and has a strong connection to the autoimmune thyroid disease called Hashimotos–a form of Thyroiditis. i.e.  just as antibodies attack your thyroid, there are rare cases where it can attack and destroy your brain cells. Having a high thyroid peroxidase (TPO) antibodies lab result is common with Hashimoto’s Encephalopathy, and can accompany high anti-thyroglobulin antibodies, as well.

Researchers have also coined other names for this condition:

  • Steroid Responsive Encephalopathy Associated with Thyroiditis (SREAT)
  • Encephalopathy Associated with Autoimmune Thyroid Disease (EAATD)
  • Non-vasculitic Autoimmune Inflammatory Meningoencephalitis (NAIM)
  • Autoimmune Encephalopathy (AE)

The U.S. National Institutes of Health’s Office of Rare Diseases Research refers to it as Hashimoto’s Encephalitis.

Wikipedia states:

Up to 2005 there were almost 200 published case reports of this disease. Between 1990 and 2000, 43 cases were published. Since that time, research has expanded and numerous cases are being reported by scientists around the world, suggesting that this rare condition is likely to have been significantly undiagnosed in the past. Over 100 scientific articles on Hashimoto’s Encephalopathy were published between 2000 and 2013.[2]

What are symptoms that can make one suspicious of having HE?

Those with HE can share many symptoms, or can have unique symptoms from each other. They include:

  • tremors
  • seizures
  • jerking
  • language difficulty, whether speaking, writing or reading
  • confusion
  • limited attention span or concentration
  • poor memory and retention
  • dementia diagnosis
  • disorientation
  • restlessness
  • convulsions
  • symptoms similar to a stroke
  • poor coordination (walking, fingers, hands, etc)
  • partial right-sided paralysis
  • headaches
  • fatigue
  • sleep problems
  • psychosis
  • coma

Women are more prone to HE than men.

What tests might my doctor do to confirm this?

Studies underscore the need to first exclude “other toxic, metabolic and infectious causes of encephalopathy (disorder of the brain) with neuro-imaging and CSF examination”.  The latter is examining one’s cerebrospinal fluid. But when there are quite high levels of antithyroid antibodies like TPO (thyroid peroxidase), that alone can be a strong enough clue to diagnose Hashimoto’s Encephalopathy. High TPO antibodies can accompany high levels of thyroglobulin antibodies, as well.

What kind of doctor might help me the most?

Many of the published articles on HE have been done by Neurologists from the Mayo Clinic.  If you live in Arizona, Florida or Minnesota, here’s a list of Neurologists associated with Mayo: http://www.mayoclinic.org/departments-centers/neurology/sections/doctors/drc-20117077

Here’s a list of Neurologists by states in the US: http://www.healthgrades.com/neurology-directory

Around the world, you can click on the area you live, then see a list of Neurologists: http://www.wfneurology.org/member-societies

How is HE treated?

Luckily, treatment is fairly straightforward and dramatic against symptoms: steroid use, which is why it’s also termed “steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)”.

Says Elaine Moore in her article titled Hashimotos encephalopathy: A Treatable Form of Dementia:

Patients with SREAT show a good response to corticosteroids such as prednisone and related immunosuppressants because of the ability of these medications to reduce thyroid antibody production and reduce inflammation. Researchers in India report a case of SREAT that did not respond to corticosteroids but showed a very favorable response to plasma exchange, a technique used to remove circulating antibodies.” Doses of steroid can vary from individual to individual, but some do well on 4-6 mg cortisol for a few days. Others may need more.  Remission is the norm for most. You’ll have to watch for relapses. Since misdiagnosis is common, it’s important to talk to your doctor about this potential disorder, testing, and treatment if you have Hashi’s and symptoms similar to any of the above.

Wiki also states: Initial treatment is usually with oral prednisone (50—150 mg/day) or high dose IV methylprednisolone (1 g/day) for 3—7 days.

Thanks to Bev for bringing this issue back up.