THYROID ADVOCATES UNITE- Let YOUR voice be heard

Hello and Happy Thyroid Awareness Month!

I hate long blog posts because of my attention deficit; therefore I try to keep mine short….This one isn’t…BUT it is very important. I am asking my fellow thyroidians to take a little bit of your time and go to the facebook pages of the AACE (American Association of Clinical Endocrinologists) and the ATA (American Thyroid Association) let them know how you feel about the current standards for thyroid testing (TSH only).

Here is what other thyroid advocates posted on AACE and ATA’s facebook site:

Michele T Bickford, from Thyroidchange.org - A serum thyrotropin is the single best screening test for primary thyroid dysfunction for the vast majority of outpatient clinical situations. The standard treatment is replacement with L-thyroxine. The decision to treat subclinical hypothyroidism when the serum thyrotropin is less than 10 mIU/L should be tailored to the individual patient."
The above caption has created a culture that believe the TSH reveals all cases of hypothyroidism, and that Synthroid is the cure.
REALITY: My physician will not test my Free T3 even though, my symptoms are no longer alleviated with T4 only
treatment. Why? My TSH is fine. It can't be my thyroid. Thankfully, I did not listen. After a few months on natural thyroid extract, I feel better than I have in 25 years. That is unfair.
PLEASE hear our pleas for revised guidelines.

Paul Robinson, Author of Recovering with T3 - I was diagnosed with hypothyroidism over 25 years ago. I was given thyroxine and after 6-9 months all my blood tests became regarded as being 'normal'. TSH was according to your new guidelines normal. Unfortunately, I still had the majority of the symptoms that I had originally complained of. This continued for 7 years and I lost my career and many other things resulted from this that have been life changing.

Eventually I was given treatment with Liothyronine Sodium (T3) and after much effort and the removal of any thyroxine (T4) from my treatment I became well again.

I have been on Liothyronine (T3) for over 15 years and now have NO FAITH WHATSOEVER in thyroid hormone blood test levels of TSH as any indication of whether someone is suffering from poor thyroid hormone function at a cellular level. I am totally well on this treatment. This non-standard treatment. I have repeatedly retested Thyroxine (T4) and it continues to make me ill within days.

Your guidelines might work for a lot of patients but MANY FALL THROUGH THE CRACKS,.

Your guidelines imprison many endocrinologists and family doctors. You HAVE to provide some guidelines on what to do when these guidelines FAIL. They will FAIL for some thyroid patients. Please do not condemn some people to permanent illness and a changed life as a result of not dealing with this issue thoroughly.

Many of us - MANY - would be willing to work closely with you to find a fundamental process change that would deal with the people who fall through the cracks. I would for one.

Please .... please consider this and the other testimonies here. We are not psychologically imbalanced. We have just seen the process of falling through the cracks first hand and know what it feels like.

I am holding out a hand in the hope that someone in your organisation will grab it

Carol Gray, Author of Wow Your Mom Really is Crazy - The minimal amount of testing currently being done on thyroid sufferers is deplorable, especially for those who have the autoimmune component. A broader testing protocol could help the thousands of people who still complain of life changing symptoms even after they have been told their TSH is “normal”. I am taking the time to write not just for myself, a thyroid sufferer but for Judy Kirby who is spending 215 years in prison for driving the wrong side of the road on a highway, resulting in a crash killing others. She had severe brain fog-almost dementia like symptoms because her MD mismanaged treatment of her thyroid condition. I am a thyroid advocate who doesn’t just believe in testing for T3 or the “free’s”, I am a proponent of testing brain function, hormones and vitamin and mineral levels on a regular basis. I mean come on… the thyroid control just about every cell in the body! Why is this one little test (the TSH) the baseline for this all too important gland? The medical community failed Judy Kirby. After that tragedy, her life was in the hands of a jury who failed her. Judy’s defense attorneys argued that a mismanaged thyroid condition was the cause of her slow reaction time and odd behaviors leading up to the accident,( but ultimately the jury did not understand how a thyroid disorder could possibly cause someone to act so spacey and came back with a guilty verdict). If more testing is done on the body for thyroid disorders, perhaps it would offer more education to the public as to why thyroid sufferers have so many symptoms both physically and mentally….and this type of education could have freed Judy Kirby. Better yet, it could have prevented the car accident in the first place, and seven lives could have been saved on March 25, 2001

Suzanne Adair - Author of many award-winning historical suspence books - When did doctors quit being scientists and become politicians?

"There is no evidence that desiccated thyroid has any advantage over synthetic T4 and it may make the precise adjustment of thyroid hormone replacement difficult." This is political lobby balderdash, if ever I've heard it, exactly the opposite of the truth. Dessicated thyroid from pigs contains T4, T3, T2, T1, and calcitonin, just like what you find in humans with normal thyroid function. Since dessicated thyroid is a natural product and cannot be patented, drug companies can't grab it and make billions on it every year. So they spread the lie that their synthetic products are better. Synthetic T4 only works for thyroid patients who don't have underlying adrenals problems or low iron. That's very few thyroid patients.

"A history of symptoms, a physical examination and laboratory tests that measure the amount of thyroid-stimulating hormone (TSH) in your blood are the first steps." The TSH is almost worthless and has, in fact, been used to *misdiagnose* thousands of thyroid patients. The TSH is a measure of pituitary gland function and only indirectly measures the thyroid function. You'd get a more accurate picture by testing the antibodies, the Free T3 and Free T4 and, if the patient has been on synthetic T4 any length of time, the Reverse T3 to see how badly the synthetic T4 has plugged up thyroid receptors. And even if a patient has "normal" TSH, FT3, and FT4 results, you could still be looking at hypothyroidism, because those tests measure what's in the blood, not what's in the cells. And plenty of things impair transport of thyroid hormone into the cells. Like synthetic T4.

How do I know more than doctors about thyroid disease? Because my thyroid disease was repeatedly misdiagnosed for several years, and taking a bunch of de$igner drug$ that I didn't need while the thyroid disease rampaged damaged me internally. If I hadn't learned on my own and gotten the correct treatments, I'd be dead by now.

Come on, doctors. Quit sucking up to Big Pharma. Learn how this stuff works. Help your patients.

Dana Trentini, Thyroid Blogger (Hypothyroid Mom) - In 2009 I miscarried a baby when TSH far above the recommended safe range of 2.5 in your Guidelines for the Diagnosis and Management of Thyroid Disease During Pregnancy and Postpartum. My doctors were not aware of the 2007 Endocrine Society's clinical guidelines for the Management of Thyroid Dysfunction during Pregnancy and Postpartum which recommended a TSH level not higher than 2.5 in the first trimester. My doctors were Ivey-league trained and top awarded doctors in NYC yet they didn't know the thyroid guidelines for pregnancy. My hope is that you find a way to better spread the word about your guidelines to doctors. Babies' lives are in danger from this lack of awareness.


***We are all thyroid advocates, do your part what you say matters!

Crazy Thyroid Lady

THYROID SURVEY RESULTS

Thanks to all who filled out my survey a year ago. I had promised to include these survey stats in my book, but my editor advised against it…said it did not fit in the book. So, I am posting on my blog, for thyroid awareness month. HERE ARE THE RESULTS!

1. I am extremely frustrated because I believe I have a thyroid disorder, but the tests do not confirm this.

Yes - 16%
No – 84 %

2. Have you ever been diagnosed with a thyroid disease or disorder?

Yes-96%
No-4%

3. If Yes, when was your diagnosis

a. 0-5 years ago- 54%
b. 6-10 years ago- 20%
c. 10-15 years ago- 10%
d. More than 15 years-16%

4. How old are you?

a. 0-18-4%
b. 19-40-33%
c. Over 40-63%

5. Were you diagnosed with have Hashi’s, Graves’ or Cancer?

a. Looks like the majority said Hashi’s

6. Were you diagnosed with another thyroid disease than the three mentioned above?

Yes-14%
No-86%

7. I have/had a goiter.

Yes-50%
No-50%

8. I live…

a. East of the Mississippi
53%
b. West of the Mississippi
47%
c. One person said they literally live on the Mississippi.Cool!

9. I have suicidal thoughts and firmly believe this is due to my thyroid disorder.

Yes-37%
No-63%

10. I have had RAI. (Radioactive Iodine)

Yes-29%
No-71%

11. I have had a thyroidectomy.

Yes-17%
No-83%

12. I am frustrated with my doctor with regard to my thyroid care or lack thereof.

Yes-67%
No-27%
N/A-6%

13. Please tell me your worst thyroid disease symptom.

The number one answer….DRUM ROLL PLEASE…

FATIGUE!

A NEW YEAR, A NEW NORMAL-THYROETRY

Another year is almost gone

Time for a new year, a rebirth, a dawn

The pain, the past…dust it all off

Leave it behind

Thyroid sufferers open your mind

To healing

To de-stressing

To nutrition

To exerise

You are embarking on a new normal

The limit…For you fellow thyroidian is in the skies

Were you diagnosed with Bipolar Disorder, Depression, Anxiety or other disorders but feel your thyroid is to blame? Thyroid disease isn’t just about your weight. Do you have thyroid disease and want tips on how to cope? Are you tired of those dry, boring hard to read medical books about your thyroid disease? If so, get your copy of Wow Your Mom Really is Crazy. Buy it online today.

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DISEASES OFFER A SPEC-TACULAR VIEW

This is a Blog Repeat or Blepeat

This week’s blog is dedicated to my Father who passed away in June of 2011 of cancer. I love and miss you daddy!

My father, a former military man, had a wife and two daughters. He did not want any of his girls to be sick, hurt or in pain-EVER! Scrapped knees, infections and menstrual maladies all had to be suffered in silence. Not because dad was merciless, he believed that talking about your illnesses was a sign of weakness.

In my late thirties, when I was diagnosed with an autoimmune thyroid disease, my father would scoff at me for lamenting about things like fatigue, or joint pain. This was after he would call me to ask, “Hey, how are you doing?”…but then not wanting to hear (or deal with) the truth, he would say, “You feel GREAT, stop saying you are tired.”

It wasn’t like I was a complainer; he just NEVER wanted to hear me say I was anything other than fantastic.

On Christmas in 2010, the chemotherapy treatments had taken a toll on my father. He said to me, “I realize now what it means to have a chronic illness, baby girl, and I apologize for ever down-playing what you had been going through."

This meant the world to me because I wasn't seeking attention, I wanted understanding.

He went onto say, “But you know, we are blessed to have the opportunity to view the world with a different set of glasses than the pair we had on before.”

Some would say, “blessed” doesn’t seem like the word most fitting, but oh… I knew exactly what he meant.

The best way I can describe it…it is like being fitted with a special pair of glasses, not the 3-D variety, where everything is distorted, not bifocals where everything is magnified, not UV where things are blocked out, and definitely not rose-colored. They are just real, authentic glasses. Glasses that help you see what is important.

With these new pair, it is easy for me to identify with the cliche “Don’t Sweat the Small Stuff". I feel this mantra deeply within my soul, because, truth is, I can’t sweat it. I can't afford to spend the strength or energy on the trivial.

This truly is a blessing!

My dad’s new pair of glasses meant he could accept both of our diseases because it was reality…Good, bad or ugly.... It is life. Acceptance, understanding, and loving what life has to offer is much easier than distorting, blocking and making things bigger than what they are.

Battling an illness is not easy, however experiencing life with real glasses is. Eyeglasses that help us see what’s most important, during this holiday season and throughout the year, which is-Faith, Family and Friends…the rest is...well, small stuff.

Oh...and the great news is..as for the big stuff...the major stuff in life. I don't need glasses, God is carrying me through those times. I have blind faith that everything will work out for the good.

MERRY CHRISTMAS EVERYONE!

From The Crazy Thyroid Lady!

It is not too late!! Get your copy of Wow Your Mom Really is Crazy before Christmas. I have gotten a lot of feedback, that this book is an excellent quick read for your friends and family to help them better understand what you are going through with your thyroid disease. This book is available on Amazon, Barnes and Noble, Kobo and iBooks.

BRAIN FOG

A few weeks ago I was captivated by the beauty of the fog outside. The misty cloud-like blanket covering trees, streets and structures made that morning drive into work a pleasant one.

On the elevator, I joked with someone that it looks like my brain isn’t the only thing foggy this Monday morning. We both laughed.

But then when I sat at my desk staring at the computer for ten minutes trying to remember passwords, what I was supposed to do for the day and who I needed to call…I thought to myself, this is not a laughing matter.

I hate brain fog!

And just like outdoor fog, (sometimes visibility is 10 miles and sometimes a few feet) there are varying degrees of brain fog.

If you’ve read my book Wow Your Mom Really is Crazy, you know of my Googling habits, so, trying to understand fog and how it works both meteorologically and cerebrally… I took to the internet.

Weather –

Fog is made up of condensed water droplets which are the result of air being cooled where it can no longer hold the water vapor it contains. –Source weatherquestons.com

Brain –

(Umm…This is where it gets foggy)…I couldn’t find a good explanation as to what exactly is going on in the brain during brain fog. IS THERE A SCIENTIST IN THE HOUSE?

But I did find causes – Here are five common causes of brain fog

1. Hormonal imbalance
2. Dehydration
3. Diseases
4. Food or Chemical allergies
5. Drugs

We throw the term Brain Fog around, however it is not technically a diagnosis or a medical term used by doctors. This is unfortunate because chronic or severe brain fog can produce a wide range of issues anywhere from immense personal insecurities to dangerous situations causing bodily harm. I’m sure it costs businesses billions of dollars globally due to unproductivity. (I am still trying to remember my work password).

Here are five key techniques to help with brain fog.

1. Eat a healthy diet-The brain needs a lot of nutrients to function properly.
2. Get adequate rest.
3. Stay on your doctor-If your quality of life is affected by brain fog, don’t settle for this.
4. Stay hydrated-Drink the recommended 8-10 glasses of water per day.
5. Exercise-Exercise increases the flow of oxygen-rich blood to the brain.

Good luck, here’s hoping the only time you experience fog is when it is weather related.

The Crazy Thyroid Lady

WHICH DOCTOR DO YOU HAVE?

Fortunately many have the luxury of “firing” bad doctors if they want to. However, often some don’t have the advantage of picking and choosing from a large pool of these professionals. Because of where they live, insurance restrictions, or financial concerns, many patients can’t control who they have as their primary care physician.

Who have you chosen as your doctor and/or who are you sort of “stuck” with?

Dr. House –Poor bedside manner, an enigma but can seem to solve all of your medical mysteries.

Dr. Frankenstein–Scary and creepy. The hair on the back of your neck stands up when they place their stethoscope on you.

Doc Baker (From the television show Little House on the Prairie)–The sweetest, most kind and gentle soul. Listens to you and is willing to try any method of treatment.

Dr. Jekyll and Mr. Hyde–You have no idea which person will walk through the office door to treat you-the good person or the bad person.

Dr. Oz-Full of knowledge, very helpful, but the information given to you can be a little overwhelming.

Dr. Evil-Mean, surly, you get the feeling you are a nuisance to them.

Dr. Van Helsing-Money hungry doc. Seems to get great pleasure “sucking” your wallet dry.

Dr. Cyclopes-Arrogant, condescending, dismissive. Makes you feel really small.

Dr. Who-Sweet but absent-minded, has to familiarize themselves with your patient chart at EVERY visit.

Over the years my autoimmune thyroid disease has brought forth a myriad of symptoms and throughout my struggle I have encountered many of the aforementioned MD personalities. But, I’ve discerned in the latter years of my disease, that even though I may encounter a difficult doctor, I still should conduct myself as the same kind of patient.

It is important for me to:

**Understand that an MD is a human being, not God.

**Understand we live in a society with more environmental pollutants and undesirable food choices than ever before.

**Understand that with a wonky thyroid, our bodies may not be behaving the way it should both physically and mentally, and getting it to functional may take time, patience and research on my part. It is after all, my body.

**Understand that most MD’s practice medicine and “medicine” in most countries is considered what your respective government has deemed “safe and effective” to treat a disorder or disease.

**Understand that many MD’s are restricted from prescribing a certain medication to a patient per their government or the insurance company.

**Understand that I know better than anyone on the planet if something is wrong with me.

**Understand that a joint collaboration or partnership with my MD is how the relationship should be considered – not parent and child, strangers, or adversaries.

**Understand that getting healthy via nutrition, exercise and closely monitoring vitamin and mineral intake can take a long time.

Happy Thanksgiving my fellow thyroidians

Don'to forget to order my thyroid book Wow Your Mom Really is Crazy now so it will be here in time for Christmas or download my book now as it is available for your Ipad or Kindle.

Crazy Thyroid Lady

THYROID POETRY (THYROETRY) - THE COLD

November has made its entrance.

Time to pull out coats, hats and long pants.

Cold weather to a suffering hypo.

Can turn a person psycho.

No matter what you do, you can’t get warm.

Fitted with layers upon layers, you looked deformed.

But warmth is what a hypo seeks.

Because being chilled to the bone is painful and bleak.

Stay warm my thyroidians

Crazy Thyroid Lady

Don't forget to get your copy of my thyroid book Wow Your Mom Really is Crazy