June 2010 - Stop The Thyroid Madness

Why you, as a hypothyroid patient, need to be aware of the Epstein Barr Virus

Though this blog post was originally written in 2010, it has been updated to the present day and time, making it current.Â Â Enjoy!

This past Saturday, while browsing at the next-to-last garage sale (one of my favorite Saturday morning events), my ears perked up like a bunny when I heard a gal chatting with the owner of the house.

I heard things like “sick for 5 years…fibromyalgia…a lot of pain all over my body…had to quit my job and live with my parents…in bed for two years…they had to bath me...” and more miserable images of something she was clearly glad to be over.

So, while my husband sat in the car with the patience of a saint, I lingered. When she finished chatting and was heading to her car, I walked towards her and said gingerly “I overheard your conversation. Can I ask you about the fibromyalgia and your experience??” I couldn’t help myself.

As a Thyroid Patient Activist who has stood up to the inane allopathic failure in the diagnosis and treatment of hypothyroidism, I knew that the majority of cases of “fibromyalgia” were due to undiagnosed or poorly treatment hypothyroidism, as well as the accompanying hell of adrenal fatigue, thanks to the garbage can TSH lab test or the inadequate treatmentÂ of T4-only treatment like Synthroid. Â Yet, here was a young woman, Mel, who was now the picture of health. What was her story??

Mel’s story was a tale of sudden onset followed by five years of misery, all over body pain, Â immense fatigue, utter helplessness, debilitation, and neck lymph nodes SO swollen that they looked like two huge goiters–right and left. It was also a scenario of no firm diagnoses, yet no hesitation by doctors to make stabs– from fibromyalgia to an unknown chronic fatigue disorder.

But I knew right away what she probably had: acuteÂ Epstein Barr Virus (EBV) reactivation.

I knew because I had the exact same malady which once took away more than a year of my life (as compared to Mel’s horrific five years). Â And like her, with the use of meditation (and in my case, intense imagery and homeopathics), I got well as if it never happened.

And we also shared a reason why the EBV virus became activated in our bodies in the first place: STRESS.Â Â For Mel, it appeared to have nothing to do with anything thyroid-related, but an extremely stressful helping-vocation that was eating her alive. For me, it was the stress of having to be where I didn’t want to be, feeling overtly powerless…and on top of being on the lousy Synthroid.

And for thyroid patients all over the world, including you, the risk of reactivation of the Epstein Barr Virus is a constant threat.

Reactivated EBV can result from one or more of the following biological stresses:

being undiagnosed thanks to the inadequate TSH lab test
being on a T4 medication like Synthroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine, etc
falling into low cortisol from adrenal fatigue
having chronic side issues pulling your body down such as gluten intolerance or celiac, lowÂ iron,Â poor digestion, or making mistakes in your treatment

Even worse, add life’s stresses as icing on the cake, and you’re a sitting duck for the risk of reactivated EBV.

What is EBV?

Epstein Barr Virus, Â also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actuallyÂ lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager, Â but you don’t have to have had mono to carry the dormant virus. Wikipedia states that it also probably has a primary role in many autoimmune diseases, including ” dermatomyositis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s syndrome, and multiple sclerosis.” i.e. this is one nasty virus!

Why do so many thyroid patients find themselves with reactivated EBV?

Millions of thyroid patients live their lives compromised due to being on T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, and other T4 med brands. Â Additionally, patients find themselves with poorly functioning adrenals, poor digestion and other conditions related to a poor treatment–all adding to a lowered immune system, which allows the opportunistic EBV virus to take ahold, especially in the face of extreme or chronic life stress.

What are symptoms of a reactivated EBV?

It can vary from patient-to-patient, but can include easy and excess fatigue, achiness, joint pain, all over body pain, swollen lymph nodes, slight fever, ringing in the ears, and a general I-don’t-feel-well–the latter all the more so after activity. When my EBV antibodies were acute, I would be in bed for 2-3 days after pulling weeds for just twenty minutes while seated. Â I couldn’t grocery shop; I couldn’t do housework. Nothing. Nada. I also had constant ringing in the ears and achiness.

How do I find out if I have reactivated EBV??

Ask your doctor to send you to a lab to be tested for it, and be sure you clarify that you are not asking for tests that show you were exposed it (most of us have). Instead you are asking for the testing which shows it has reactivated. Â Or you can order it yourself via the labs I have listed here.

How do I treat it??

It’s not easy. I personally benefitted from taking a prescribed anti-virus medication. Though that lessened my symptoms by 50%, it wasn’t enough. I then moved to homeopathic medications and some dedicated mental imagery to finally get rid of it, as well as lots of rest and the immune enhancing support of vitamins, minerals, supplements plus healthy strategies i.e. whatever it takes to nourish your immune system. Nourishing supplements include high dose Vit. C (2000 mg minimum), Â Vit E as mixed tocopherals, Â selenium (200 – 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods. Â There are also great natural anti-virals I would recommend exploring. And ultimately as a thyroid patient, being on a MUCH better hypothyroid treatment with natural desiccated thyroid is the key, besides treating one’s adrenal issues, gluten or digestive issues, low iron, and all other related conditions.

Bottom line, once you are adequately treating your thyroid problem (see the current Options for Thyroid Treatment), addressing potential adrenal fatigue, low ferritin, gluten issues, low B12, for example, and using good stress management in the face of pressures within your life, your risk of having a reactivation of the dormant EBV virus is very low.

I’ve readÂ that most all cases of hypothyroidism are due to EBV?

Not according to the experiences and intelligence of thyroid patients worldwide. Yes, there is some evidence that having reactivated herpes viruses like EBV could contribute to a hypothyroid state. But it’s rare, and is only one of many causes of hypothyroidism, not “the” cause. Far more common are genetic causes (numerous genes have been identified), as well as the well-researched organ-targeted autoimmune cause of Hashimoto’s. See this page.Â There are also studies that consistently show that reactivated EBV does not trigger Hashimoto’s or Grave’s–the latter also falsely stated.

Want more detailed information on EBV? Order the STTM ebook and become informed!

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June 27th 2010 90 replies

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

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

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

She stated “IÂ think everyone who has Hashimoto’s diseaseÂ should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though notÂ curable, is relatively easy to do….”

What is Hashimoto’s Encephalopathy (HE)?

Hashimoto’s Encephalopathy is a rare neuroendocrine disorder which wasÂ termed and recognized in 1966 and has a strong connection to the autoimmune thyroid disease called Hashimotos–a form of Thyroiditis. i.e. Â 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)

TheÂ 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?

StudiesÂ underscore theÂ need to first exclude “other toxic, metabolic and infectious causes of encephalopathy (disorder of the brain) with neuro-imaging and CSF examination”. Â 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.

WhatÂ kind of doctor might help me the most?

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

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

Around the world, you can click on the area you live, then see a list of Neurologists:Â 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. Â 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:Â Initial treatment is usually with oral prednisone (50—150Â mg/day) or high dose IV methylprednisolone (1 g/day) for 3—7 days.

Thanks to Bev for bringing this issue back up.

June 22nd 2010 70 replies

What do Jeffrey Dach MD and John O Wycoff DO have in common??

They both GET IT.

Jeffrey Dach, MD, who is founder ofÂ TrueMedMD clinic in Hollywood, Florida, has recently written just one more brilliant article titled Why Natural Thyroid is Better than Synthetic on OpEdNews.Â And patients can only derisively agree when Dach says “This nonsense really makes my blood boil and my eyes pop out of head” in response to articles on medical websites which still purport that synthetic T4 is a better treatment Â than natural desiccated thyroid.

John O. Wycoff DO graciously had me on his radio program a week ago, called Health and Wellness Solutions radio, which runs each and every Saturday morning in Michigan or live streamed. And I couldn’t help but be impressed by this warm, friendly, and caring doctor who runs the Wycoff Wellness Center in East Lansing, Michigan. He definitely seemed to understand the use of desiccated thyroid and adrenals. Michigan patients are lucky to have this man.

And frankly, there seems to be a growing body of doctors who are GETTING IT, making the large body who still don’t look like medical cavemen and health ostriches. Â Natural desiccated thyroid is a FAR better treatment, and millions of changed lives prove this over and over. 🙂

Both Dach and Wycoff will go down in history as being part of the founding members of doctors who really GOT IT in the first decade of the 21st century and have played a huge role to STOP THE THYROID MADNESS!!

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UPCOMING PROGRAM with Janie: You will be able to listen to me on Jimmy’s Moore’s Livin’ La Vida Low-Carb program on Thursday July 22nd, 2010 for what Jimmy has dubbed “The Truth About Thyroid Week.” As I see it, each time I’m on a variety of radio and internet podcasts like this, it’s going to mean reaching MORE folks about why they have depression, rising cholesterol or blood pressure, fatigue, hair loss, dry skin or hair, osteoporosis and more as a result of either the TSH lab test, or being on T4 meds like Synthroid! Â I’ll announce this closer to the event, as well.

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MORE ABOUT MAGNESIUM: As I wrote about recently here, I found myself very low in my RBC Magnesium levels–the very bottom of the range. I am even lower than a friend who has Celiac disease, which affects digestion!! Â No wonder I’ve had issues with muscle cramps for so long, as well as what I saw as a worsening of my MVP (mitral valve prolapse). Â Since then, I’ve been on Magnesium Oil and a particular brand of buffered Vit. C which contains a good amount of magnesium. And lo and behold, I have found out that taking magnesium when you are deficient is like drinking water when you are dying of thirst–your body TAKES IT IN faster than you can give it to yourself. Â So it’s important to take as high a dose as you can take in, and be patient for it all to level out. Â And by the way, I’m already noticing an improvement in my huffin’ and puffin’ when I go out walking. Â I do it less!!

June 20th 2010 4 replies

Do you know someone who is defensive, paranoid and/or frequently anxietal??

(This page was updated to the present day and time. Enjoy!)

It happens often–someone will join a patient group, and right off the bat, you notice they are one or more of the following (or you notice it in yourself):

very defensive about certain subjects
know-it-all
argumentative
hot-headed
condescendingly overbearing
paranoid
highly emotional
over-reactive

They may quickly fly off the handle. Â They might see implications in words that were never there. They can also be childish in their reactions, obsessive about certain topics or people, mistrustful of others, forgetful, combative, and/or jittery.

Even worse, combine someone with intelligence and a way with words along with all of the above, and you’ve got a royal pain in the butt.Â And the worst part? Â Most have no idea how badly they are manifesting the above.

It’s called adrenal fatigue, also known as adrenal insufficiency or hypocortisolism.

It starts out with excessively high cortisol, then falls to low cortisol with a basket full of consequences when it comes to coping and interacting with life and people. i.e. those with adrenal fatigue can have several of the above list or more. . And having a cortisol problem is unfortunately very common among thyroid patients thanks to being left undiagnosed due to the lousy TSH lab test, or being put on T4-only medications like Synthroid, levothyroxine, Extroxin, etc. Both situations cause the adrenals to work far too hard, then become sluggish.

It’s also unfortunately common for many doctors to deny the existence of low cortisol as we tend to have it,Â or be clueless on how to treat it.

And to get well, we have to become informed ourselves

Why? Because patient experiences and wisdom are far ahead of most doctors, and we have to be prepared to guide them. You can read about this condition here. Then the adrenal wisdom we’ve gain on treating adrenal issues.Â Some of the BESTÂ details are in Chapters 5 and 6 in the Stop the Thyroid Madness book. The last Chapter in the STTM II book does a bangup job explains biologically how we end up withÂ low cortisol in the first place. A must read.

There appear to be a huge body of thyroid patients with this condition–at least 50% or more–and it’s a topic that needs understanding and a condition that needs the right treatment.