IT'S OVER...FINALLY

Why did even try to reconcile? Why?...I’ve finally had enough, It’s over…She will not get custody or visitation rights of my thyroid, I am through… FOREVER!

OK, long story short, here’s what happened:

·   Referred to Endo over 8 years ago.

·   Endo recommended Radio Active Iodine or (RAI).

·   Got RAI, but was then prescribed T4 only (I accepted this, even 
     though I did not feel well, because I did not know any better).

·  Divorced Endo years later, after suffering for so long, realizing I 
    could have tried a T3 drug that would perhaps make me feel 
    better.

·   Went to another MD who tested my T3. My T3 was off and
    started taking T3 right away.

·  However, the new MD didn't accept insurance and the
    appointments were getting to be too costly.

·  Reconciled with my old doc, but told her the only way I would
   come back is if she prescribed T3.

·  Old Endo said yes and prescribed T3 for several years.

·  A few months ago, I called my old Endo and said for some
    reason my thyroid meds were making me sick to my stomach (I
    let her know I had been eating a very very clean diet at the
    time).

·  She took me off T3 and Levoxyl and put me on Tirosint (a T4 
   only drug without dyes and preservatives). 

·  I reluctantly agreed with the treatment plan at the time, but
   then I started to feel horrible, the same way I felt nearly 8 years
   ago, without T3.  I told her I wanted back on T3 or at the very
   least test my T3 to see if my body needs it.

· She refused, without explanation…I didn’t bother asking,
   because I know she never wanted to give me the T3 in the first
   place, needless to say I was done.

So there you have it… that was the last straw! Time to leave this abusive relationship! It made me realize this Endo doesn’t care about me; I am just another troublesome-TSH-testing-T4–only- thyroid patient in her aesculapian assembly line.  I mean come on doc… it is just a test, not like I was asking you to come over and do my dishes.

Anyway…enough about her. I found the Holy Grail of providers. She is a nurse practioner with prescriptive authority, which means she can prescribe medications and tests (T3 tests, reverse, free..etc. NOT just TSH). This woman reeled me in hook, line and sinker when she said “Carol, the TSH test is just a small piece of the puzzle, it doesn’t tell the whole story, I’ll run a full workup on you and if you need T3, I’ll give you T3.”

I gushed…I think this is the one…she’s a keeper!

The Crazy Thyroid Lady

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

VACATION TIPS FOR THE THYROID SUFFERER

 

My husband came home the other day with a lovely surprise.  “Honey, we are going to Mexico for our 20^th wedding anniversary,” he said.  I was so excited.  Yea! I’ve never been to Mexico…Oh wait a minute…have I?

Isn’t it a shame, that I must think really hard about something like that? 

But with thyroid disease, comes a chalk full of symptoms, affecting various areas of the body, READ fellow thyroid activist, Hypothyroid MOM’s blog post and symptom list.  Symptoms can be far worse for some and not that bad for others…For example, for some, the fatigue is almost unbearable; for others, it is the joint pain.

As for me, without a doubt, hands down…it is my memory and brain fog.  Alright, so let me see…Hmmm, OK…I used to work for an airline… and I was able to fly for free…have I been to...?? Ummmm nope, I’m pretty sure I’ve never been to Mexico. Yippee!  We are going to have fun!

Since my brain cells have decided to take their own permanent vacation, I have had to come up with five tips to help make all my excursions more memorable:

 

1.  Say CHEESE! Of course this is the obvious – take many pictures and shoot video footage, if you can. Don’t be too annoying that you make this a stressful event for everyone involved.

2. Play games! A great way to spend some quality fun time. Laughter can stimulate parts of the brain promoting a better memory. 

3. Scrap it! Collect/save brochures, ticket stubs, maps etc… then make a scrap book when you return.  It makes for a nice keepsake and it will help you recall certain adventures of your trip.

4. Find a happy medium! Don’t schedule too many guided tours, however you want to do a little planning.  If you rely on spontaneity throughout your entire trip, you may not do anything and conversely, If the vacation is too action packed, it becomes one big blur.  Those are the types of vacations where you need a vacation, after the vacation.

5. Save the best for last! A sunlit walk on the beach, dine at your favorite bistro or visit the attraction you’ve always wanted to see.  Psychologists say we are more likely to remember events which occur at the end of something. Ahhh, that moist, delicious icing on the cake!

If I don’t do some or all of these tips, my time away becomes, well…just a time away.  It was great at the moment, but many many years from now I could be saying…Hmmm let me see, have I ever been to Mexico?

Crazy Thyroid Lady

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

YOU KNOW YOUR THYROID HORMONE LEVELS ARE OFF WHEN...

Top ten ways, you know your thyroid hormone levels are off:

1.  You are watching a television show and during the commercial break, you totally forget what television show you are watching. Hmm…what do I have on… Downton Abbey or CSI?

2. Your arguments with your significant other end in… “Oh whatever.” Because you can’t think of anything else to say.

3. You can’t remember if or when you took your thyroid medication(s), the same medication that will likely help get you back to your normal levels.

4.  You are no match intellectually with your children (or any household pets).

5.  It doesn’t matter what is the forecasted weather, you know, you will either need to wear a parka (hypo) or anything sleeveless (hyper) to work.

6.  You are sleepy in the morning, after coffee, before lunch, during lunch, after lunch and when the sun goes down.

7.  Forgetting something is taken to a whole other level…it is not like something normal like forgetting where you placed your keys. It is like forgetting your address, the ages of your children or the make/model and color of your car.

8.  You are looking, looking…I mean seriously looking…tearing the house apart. You are putting a lot of effort into this organized bloodhound and rescue type-search. This search has been going on for the past 60 minutes…then suddenly on the 62^nd minute, you forgot what you were searching for (time for a nap).

9. You look at a simple word like “THE”…cock your head sideways and say, “Is that how you spell that word?”

10.Your train of thought is like the little engine that couldn’t.

 But of course, for me…most of these thyroid hormone-related issues hardly ever happen… because, well… my Endo says my TSH is primarily “within normal range.” (sarcasm)

Crazy Thyroid Lady

What!? You haven't purchased my thyroid book yet? Do it now, it is a quick and easy read. Wow Your Mom Really is Crazy

WHICH ANIMATED CHARACTER DID/DO YOU RESEMBLE?

An undiagnosed or a mismanaged thyroid condition can have a person not acting like themselves. In fact, when I was at my sickest, the mood swings I would experience were unbelievably dramatic…like, cartoon character dramatic. Looking back on it, I have not doubt in my mind that at one point in time close family members, friends and co-workers said to themselves…”Ooookkkkkkkkk, why don’t we give Carol some space.”

          Examples of my animated alternating personalities

Brain Fog

Hyperthyroid

Irritability

Depression

 

Mega Brain Fog

Paranoia

Pretty much all the time

Weepy

Hypothyroid (with the hair loss)

But there was one animated character that at NO time during this cartoon carousel from Hell did I ever resemble:

I am sorry to say, my house is still a mess, since my diagnosis almost 10 years ago!

I want to hear from you, which cartoon character (s) did or do you relate to the most, when it comes to your thyroid disease?

Crazy Thyroid Lady

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

WHAT COLOR IS YOUR LUNULA?

Hi thyroid family! How’s it going? I hope all is well with your health. If you are like me… when all is quiet with my health…for example, no wild blood level swings, no colds, no headaches or freaky maladies, sometimes the “Negative Nelly” in me wonders when the other shoe is going to drop…, because, well…we know the thyroid affects so much.

With my autoimmune thyroid disease, I try to stay proactive with my health, by being vigilant. I feel this is important because going from well to ill can happen in a blink of an eye. While you are on the phone making plans with your friends, “Sure I’ll go shopping with you this weekend, I’ve been feeling great!” Your body on the inside is saying, “Muwwwahhhhh, shopping… that is what she thinks!”

It is hard to know what the inside of your body is doing, however there are several things to check for on the outside….. Remember my poop post? Checking your poop to determine your health, is one way, but if you have an aversion to excrement examinations, then there is a more dainty way: examining your nails.

Lunula – The white crescent shape at the base of your fingernails. If it is discolored, missing or non-existent it could mean nutritional deficiencies.

Nail pitting and ridges – Psoriasis, dermatitis, alopecia, kidney disorders anemia or arthritis.

Nail Clubbing – Inflammatory bowel, lung, cardiovascular or liver disease.

Spoon Nails – Anemia, Liver condition, heart disease or hypothyroidism.

Terry’s Nails (your nails look opaque, but the tip has a dark band) – liver disease, congestive heart failure or diabetes.

Beau’s Nails (indentations that run across the nails) – Zinc deficiency, high fever, pneumonia, circulatory diseases, peripheral vascular disease, malnutrition or diabetes.

Nail Separation – Psoriasis or thyroid disease.

Warning: Now that you have this knowledge, you may become a nailstalker. I caught myself starring at everyone’s nails at a board meeting the other day. But, it did make the otherwise boring, somewhat tolerable...

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

HIS BRAVE BATTLE--FIREFIGHTER STRICKEN WITH THYROID CANCER POST 9/11

Located in the Bedford Park section of the Bronx, Ladder Company 37 is one of the busiest firehouses in New York City. Stationed with Engine Co. 79 and Battalion 27, collectively, these fearless firefighters respond to over 11,000 calls per year.

One fateful call came on September 11, 2001 around 9:00 am, reporting that two Boeing 767 passenger planes crashed into one of the largest structures ever assembled, the World Trade Center. Dubbed by the media as Ground Zero, now almost twelve years later, that single event of terror is still impacting lives of the men and women who responded to the grisly scene.

A life forever changed by that horrific event is former New York fire department’s seasoned veteran Jim Reilly’s. Jim loved performing the duties required of his arduous job. So much so, that despite being off duty on 9/11, he still rushed to the scene of destruction and mayhem without hesitation. Jim was trained to save lives, thinking of others not himself was his sole focus.

Selfless acts like these are what many in the fire department do instinctively. What could happen is not on the minds of these brave men and women, but the unfortunate consequences are oftentimes inevitable.

So, it was not a total shock to Jim when a routine check-up for a cold turned into a discovery of a lump on his neck. It was thyroid cancer. The “C” word had been bandied about amongst the firefighters several years after 9/11 as a large number had already been stricken with various types of cancer, with thyroid cancer amongst the most common diagnosis. In fact, Jim’s partner with whom he worked alongside during the recovery efforts at Ground Zero, was diagnosed with thyroid cancer, as well.

Not only were the workers exposed to blazing infernos, they also had to trudge through flying debris, toxic chemicals, ash, smoke and thick dust. The scene was a noxious mixture with which many spent weeks in close proximity, in an effort to clean, save and restore what evil had done.

As a result:
**99% of exposed firefighters within one week complained of at least one new respiratory illness.

**Within six months three percent had the “WTC (World Trade Center) cough”.

**The number of sarcoid (inflammatory nodules on multiple organs) cases increased.

**263 new cases of cancer were reported from September 11, 2001 – 2008

Source - http://www.nyc.gov/html/doh/wtc/html/rescue/know.shtml

Unfortunately, Jim is one of the 263 that received a cancer diagnosis. His disease was one of the worst cases amongst his peers, because the cancer had spread into his lymph nodes. Soon after diagnosis, he underwent a total thyroidectomy and radiation. He fully expected to return to what he loves, his passion, but because the cancer had spread, part of his neck had to be removed causing extensive nerve damage in his neck, shoulder and arms. The Chief Medical Officer had to deliver Jim the bad news: “Your firefighting days are over”.

Jim was stunned! He believed he could rehab his way back and retire on his terms.

Staying on active duty was not to be however, and so, the extensive process of retirement began in November 2011, nearly 10 years to the day of the attack. Then, on August 1, 2012, Jim met with the State Board of Directors who finally declared Jim a retired New York firefighter.

Today, Jim says ”I am still having a few side effects from my surgery. I am not able to lift my left arm because of nerve damage, and my whole left side of my neck is numb. This makes it very difficult for me to move my neck to the left. I will not give up on getting better. Every day I work at getting stronger, and hope that someday it will pay off”.

It is evident to me, when talking to Jim that he loved being a firefighter and retiring early was not a part of his plan. Jim has no regrets, though, despite contracting the cancer that ended his career. He knows adjusting to his new life is not going to be easy, nevertheless, if you ask Jim if he would have dashed to the scene of a terrorist attack again on his day off, his response was as swift as his actions on 9/11…”I would do it all over again”.



**On August 14, 2006 former governor of New York signed into legislation expanding health benefits to the workers with cancer and respiratory diseases, presuming that the cause came from working at ground zero. The legislation was called The Zadroga Act

**On January 2, 2011 President Barak Obama, signed this act into law.

**Nearly a year later after the act was signed the New York Health department conducted a study and is claiming that they “have found no clear link between cancer and the dust, debris and fumes released by the burning wreckage of the twin towers.”
For more info about this latest setback for the ailing firefighters you can click here:

Crazy Thyroid lady

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

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