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A clinical trial in progress to investigate T3 in the treatment of fibromyalgia

Oh the heels of my last blog post (see right below this if you are reading right on the site) comes something VERY interesting, and which thyroid-patients-in-the-know have already known about for a good ten years!

Namely, Dr. Ian Carroll, MD, MS, and Dr. Jarred Younger, PhD of the Stanford Systems Neuroscience and Pain Lab are currently enrolling patients for a clinical trial investigating T3 for the treatment of fibromyalgia. (Fibromyalgia is a chronic syndrome which causes widespread musculoskeletal pain and debilitating fatigue, also aching, twitching, burn sensation, joint issues).

Of course, patients who switched to desiccated thyroid the past ten years (or have used synthetic T3 in their treatment) already KNOW the truth from experience (which is usually always pooh-poohed by clinical-trial-worshipping, clinical-presentation-ignoring, medical professionals.).

Namely, fibromyalgia is usually the result of undiagnosed hypothyroidism (due to the inane TSH lab test) and undertreated hypothyroidism (due to the worst medication ever thrust on patients, aka T4-only, or Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, etc.) i.e. you need direct T3, the most powerful thyroid hormone, to adequately treated hypothyroidism.

i.e. we’re all kinda going duhhhhhhhh here.

But, if a clinical trial is needed to prove what we already know (and so has Dr. John C. Lowe known it for many years), it’ll be just one more underscore of the truth. Go to the following to read more and/or enroll:  http://snapl.stanford.edu/t3/

P.S. the Bobbsey Twins of the failure of the TSH labs test and treating with T4-only:  Fibromyalgia and Chronic Fatigue Syndrome.

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Does your inner ear itch?? Got an email from a gal who was on Synthroid for 7 years, and for the last 5, had torturous deep inner ear itching. And guess what?? It went away just two days after switching to desiccated thyroid. Yup, another long and pathetic symptom of a poor treatment. (If you still have it on desiccated thyroid, see what mistakes in your treatment you need to identify and change, which is also Chapter 11 in the STTM book with a little more details added.)

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Yippee!! Direct Labs is the third lab facility to partner with STTM in offering the kind of labs that patients who frequent STTM know are important in their quest to feel better and educate their doctors.  Unfortunately, they don’t offer saliva like the other two, which are Healthcheck USA and MyMedLab, but they have all the other labs you may be interested in. You can view them by going to STTM’s Recommended Labwork page.

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10 THYROID TIDBITS that just may enlighten you!

Thyroid tidbit #1 COCONUT OIL: Thyroid patients continue to report that the daily use of Coconut Oil (extra virgin is good) caused an increase in metabolism and even weight loss in  somewho wanted the latter. How much daily? It varies from 2-4 T. but be careful, as too much can cause diarrhea.

Thyroid tidbit #2 GRASS FED DESICCATED THYROID: Are you worried what the pigs were eating before the thyroids became desiccated?? If so, try Dr. Lowe’s Thyro-Gold, which is actually from cow who are pasture-fed. Then report back to STTM on the Contact Me page and tell us how it works for you as a treatment, or not work. I will compile information and report it here.

Thyroid tidbit #3 ALZHEIMERS DISEASE: Improving your thyroid function just may lessen your chance of getting dementia. But research has also found a Leptin connection: http://www.webmd.com/alzheimers/news/20091215/more-leptin-may-mean-less-alzheimers

Thyroid tidbit #4: ASHWAGANDHA: If you have sluggish adrenals and are on cortisol, adding the herb Ashwagandha can be an excellent and natural additional support for your adrenals. Even without adrenal fatigue, it’s also good in the face of excess emotional stress, and is an anti-inflammatory.

Thyroid tidbit #5 REVERSE T3–IS YOURS TOO HIGH? The body naturally converts T4 to RT3 as a way to clear out excess T4. But you can also make too much when your ferritin is too low, your adrenals are stressed, B12 is low, in the presence of diabetes, and other chronic issues. High levels of RT3 can cause a pounding heartrate, continued hypo, and just a feeling that you aren’t feeling great yet. To learn more, go here.

Thyroid tidbit #6 BI-POLAR: Have you been diagnosed with bi-polar disease? If so, you might want to do the right tests for hypothyroidism, since there can be a strong connection between the two, and you can either be undiagnosed thanks to the wrong test, or undertreated thanks to Synthroid, Levoxyl, Eltroxin or other T4-only medications. Read more here plus more detail in the STTM book.

Thyroid tidbit #7 GREEN POWDER: Don’t like green veggies but want to be healthy? Look into the different varieties of “Green Powder” that you can stir into your favorite juice or water. Read the labels, tho, and avoid those with soy. Note: if you use too much, you are also consuming oxalates. So moderation is key.

Thyroid tidbit #8 YOUR GRANDMA: Thyroid function will naturally go downward in the elderly.That’s why grandma starts wearing that purple sweater in weather you are sweating in.  But putting those over 65 on T4-only thyroxine is not the answer, as a recent study showed.  That’s why YOU AND I are lucky to be on desiccated thyroid with its direct T3, or even those of you who are on T3 only.

Thyroid tidbit #9 EGGS ARE A BIT SCARY RIGHT NOW: Not necessarily for thyroid folks only, but you should be aware that with the recent recall of huge amounts of eggs in the US, there are reports of a four-fold increase in Salmonella Enteritidis infections since May 2010 because of eggs and health officials fear the worst may be yet to come. Why? Because the same eggs have been used in other products. Scroll down this page to see list of recalled eggs. P.S. if you get salmonella and are on cortisol for adrenal fatigue, you should discuss with your doctor about using OTC cortisol cream, since you may not be able to hold down the pills. 1/4 tsp equals 10 mg cortisol.

Thyroid tidbit #10 FLU SHOTS vs. VITAMIN D: Just when you are making progress treating your hypothyroidism and/or adrenal fatigue comes the season for the flu. And if you google the same same title of this tidbit, you’ll see numerous articles about the efficacy of taking Vit. D rather than the flu shots.  How much? General recommendation are 1000 IU’s daily at the minimum. Others point to more. Do your research.

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A continuing MEDICAL SCANDAL which is just too close to home and I grieve. WAKE UP DOCTORS!!

Tonight was a beautiful night to do my aerobic walking. It had poured this afternoon for 30 minutes, so the early evening air was slightly cool and very clean.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her.  I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3-4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago.  And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago.  She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

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  • Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose.  If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
  • If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
  • Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
  • Want to spread the word about far better treatment? T-shirts and bumper stickers are here.
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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!

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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

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