2010 - Page 4 of 11 - Stop The Thyroid Madness Skip to content

Janie and Jimmy of The Livin’ La Vida Low-Carb Show

I had a fun interview by the vivacious and interesting Jimmy Moore of the Livin’ La Vida Low Carb Show. If you haven’t yet heard it, you can listen to Jimmy and I by clicking right here.

Jimmy Moore is a living success story about the benefits of a low carb diet–losing 180+ pounds in 2004 and regaining his health and vitality.  As I do about far better thyroid treatment,  Jimmy has been on a one-man mission to tell the whole world what livin’ la vida low-carb can do for them.

Eating low carb can be a very important strategy for those with hypothyroidism, especially while on desiccated thyroid and seeking to reverse the damage of being on T4 meds like Synthroid, et al.

And for those of you with adrenal fatigue, following Jimmy’s low carb life style can be very beneficial when you need to be on cortisol, which can cause weight gain for some, but is an important treatment for your low cortisol situation.

Have a great day!

Recall of T3 tablets — 5 mcg. by Paddock Laboratories

Though this page was written in 2010, it has been updated to the present day and time. Enjoy!

***************
After the turn of the century and within groups associated with Stop the Thyroid Madness, thyroid patients made a huge discovery–that many of them had an RT3 problem!

RT3 is the acronym for Reverse T3. Reverse T3 production is normal. It will occur if you have surgery, after a bodily accident, when having the flu and/or other stressful conditions. It’s your body’s way of moving out the excess T4 by converting it to more and more RT3, which in turn, lowers your metabolism.

But when thyroid patients have either low iron or a cortisol problem, up goes the Reverse T3. And why is that a problem? RT3 is not only inactive, but you might say it’s a T3 “antagonist”, binding to the same cellular receptor that T3 would have attached to, but now can’t. Thus, T3 will rise higher and higher in the blood–a condition we call pooling.

So what did patients learn to do? Find out the reason and treat it…and in the meantime, they lowered the RT3 by lowering the amount of T4 they were getting, or by being on straight T3.

And in 2010 came recall of one of the brands of T3 by Paddock.

PRODUCT
Liothyronine Sodium Tablets, USP 5 mcg, RX only, Net contents 100 tablets, NDC0574-0220-01, UPC code (01) 00305740220016. Recall # D-695-2010
CODE
Lot # 9C548
RECALLING FIRM/MANUFACTURER
Recalling Firm: Paddock Laboratories, Inc., Minneapolis, MN, by letter dated May 18, 2010.
Manufacturer: Metrics Inc., Greenville, NC. Firm initiated recall is ongoing.
REASON
The recall is being conducted due to a stability failure at the 12 month timepoint; the assay value of this lot was found to be sub-potent.
VOLUME OF PRODUCT IN COMMERCE
11,064 bottles
DISTRIBUTION
Nationwide including DC and PR

Luckily, as the years went by, there continued to be other brands of T3 and new brands.

 

  • Want to learn more about RT3 and the problems it can cause you?? You can read about it here on STTM’s Reverse T3 page, plus more details in the STTM book chapter on T3.
  • Have you Liked the STTM Facebook page? Great place of daily information and tips!
  • Like being informed?? Go directly to the STTM blog page and sign up for notifications at the bottom of any any page
  • Need other thyroid patients to talk to? Go to the Talk to Others page.
  • Have questions about what thyroid patients have learned? Check out the Question and Answers page.

Lesson learned: changing my high school reunion mindset

(To all my thyroid friends, I thought you might enjoy my off-topic post concerning my high school reunion, since many of you may be approaching your own.  Janie)

As my 40th high school reunion was approaching, I really wasn’t sure I wanted to go.

The 10th was certainly disappointing:  the former cliques just seemed to draw together like metal filings to a magnet. Zzzzzzzzzzuippp   And the image of “high school classmate A”  smacking away on her pink gum like a 28 year old teenybopper just put the proverbial exclamation mark on my disgust.

So when the 20th, and later the 30th arrived, I had sound excuses: I was moving into a new house not only during both years, but in the same months. Phooey on high school reunions.

So here it was approaching all over again: a high school reunion with the massive 40th in front of it.  There was no house relocation going on.  So my other excuses not-to-go flowed with ease: I don’t want to watch the clique-zzzuip.  I’ve lived away from Dallas for too long. My memories of high school were not too pleasant. I don’t have any strong connections to old classmates. My life has moved on. Yada, yada, yada.

But I got weak.

The first crack in my negative resolve was my realization that perhaps I just could form new friendships with former high school classmates as one adult to another.  That was an exciting thought. If I had come a long, long way since those secondary school days, so could others.

The second crack was the reality of deceased parents, a brother whom I never see, three sons living far away in three different directions, and the dreadlock, hug-a-tree hippie-dom of where we live, which had not proved to be the best place to find stimulating adult friendships with common backgrounds.

Besides, wouldn’t it be interesting, as the third and final crumble, to find out how everyone really is all these years later.  Facebook was already giving me a peek at that.  And this time, I was not planning on sitting around “watching”.  I was going to put my hand out, wear my genuine smile, and say “Howdoyado?” to as many as I could.

And I did just that.

I arrived at the Dallas Hilton hotel as excited as a peacock in full plume. And to make a full weekend of events short, my highest expectations were met.

  • I was proud to see certain classmates, who might have swum in bitterness about their challenging/lonely/miserable high school experiences, be right there with courage and glory in their own value as an equal adult.
  • I was impressed to see many former shy and quiet high school classmates be just as social and outgoing as their more demonstrative classmates.
  • I was in awe to discover how this person or that, who really didn’t stand out in high school, had in fact achieved some impressive career goals and financial rewards far above many of us.
  • I was relieved to discover how friendly many still were, or how friendly others had become in the maturity of adulthood.

Did I see those same old click-zzzuips?? Yup. There were still a few who needed to lock emotional arms against the crowd of other classmates. But those were the vast minority, as clearly, most “got it” that there were treasures to be had in getting to know other classmates.  I hope I made that clear in my social butterfly rounds, and it didn’t pass me by that several others did the same.  I appreciated you.

As others have expressed on Facebook, it was a weekend I didn’t want to end. I wanted more small gatherings so I could have a chance to find out where you lived, what you’ve been doing, who you are. And I wanted time to tell you the same about me. But it appears that will take more gatherings. And this time, I’m coming.

When it was all ending, and many of us were crippling back to our hotels rooms in the wee hours of the morning from the lounge on the 18th floor open after-party,  it certainly dawned on a few of us how MUCH people missed by not coming. And it dawned on me what “I” would have missed by not coming: renewing old friendships I had forgotten about, making new friendships that will mean a lot to me in the ensuing years, finding out how silly some of the past really was, and feeling really proud of what I have become, as well as what others have become.

Oh, and let me not hesitate to mention that there was a freeing and humorous benefit of going to one’s 40th reunion: that those Barbie doll and Fonzy bodies are practically no more. Yup, we all do share the fruits of time, whether it be those delightful under upper arm wings, sensuous sagging chins, happy bountiful bellies, cottage cheese thighs, and/or our own versions of Shar Pei wrinkles.   

I almost made a huge mistake by not coming. But thank goodness, like so many others, I had reached a pinnacle in my adulthood to know how important and worthwhile it might be to come back, as well as to take a pro-active stance to the entire event.  And I’m glad it did.

Love and warm thoughts to my high school classmates of Thomas Jefferson High School! RRREB-BBBEL-REB-BEL-REBELS!

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

STTM Epstein Barr Virus Garage Sale

Though this blog post was originally written in 2010, it has been updated to the present day and time, making it current.  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 treatment of T4-only treatment like Synthroid.  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,  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: acute 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).  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.  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, low iron, 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,  also called human herpesvirus 4 ( HHV-4) is an opportunistic virus that actually lies dormant in at least 95% of all adults over their 30’s. It’s what causes mononucleosis, aka “mono”, as a teenager,  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.  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.  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.  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),  Vit E as mixed tocopherals,  selenium (200 – 400 mcg), mushroom extracts, CoQ10, high dose B-vitamins, minerals plus plenty of healthy and raw foods.  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 read 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. 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!

Namaste Janie

*** Have you Liked the STTM Facebook page? It gives you daily tips, information and inspiration!

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

Screen Shot 2015-07-06 at 8.25.26 AM

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

*****************

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.