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Children with Hashimoto’s disease

Daughters both

I, Janie Bowthorpe, am lucky. My children grew up to be adults without a thyroid problem or Hashimoto’s.

But not all parents and loved ones of children get that lucky. Some children are outright born with a thyroid problem. It’s called Congenital hypothyroidism. The Merck Manual states it occurs in about 1 out of 2000-4000 live births. And about 10 to 20% are inherited.  The usual reasons involve dysgeneis of the thyroid gland (absence or underdevelopment) or dyshormonogenesis of the thyroid (abnormal thyroid hormone production).

Then comes children who acquire a thyroid problem during their childhood years.

For most children, that acquired problem is Hashimoto’s thyroiditis. It’s the autoimmune version of hypothyroidism. Symptoms can be similar to adults, such as vacillating between hypo- and hyper- symptoms because of the attack on the thyroid, dry hair, easy fatigue or poor stamina, weight gain for some, or weight loss for others, constipation and more.

I’d like to introduce you to Cindy Kennedy.

Cindy Kennedy and her daughters

She’s a mother of two young children – both of whom have Hashimoto’s. She’s also the author of Help! My Child Has Hashimoto’s and owner of Nutrition Navigator, a Nutritional Medicine Practice in Grafton, NSW of Australia.  As a qualified Nutritional Medicine Practitioner as well as a mother, she is passionate about raising awareness in the community on the plight of families living with invisible illness and helping people overcome their autoimmune and thyroid disease. She wrote the following just for readers of Stop the Thyroid Madness….

How doctors may not get it

Aching legs?? Oh they’re just growing pains?.
Constipation?? Oh that’s normal in children?.
Food intolerances?? She might grow out of it?.
Fatigue?? She’s probably just about to have a growth spurt?.

Sound familiar?  These were the early warning signs that something wasn’t quite right’ with our daughter, and the ‘excuses’ used to fob us off.  It wasn’t until she ended up in hospital just after her 8th birthday after not passing a bowel movement in over a month that they took my concerns seriously.  That’s when she was finally diagnosed with Hashimoto’s.

How Hashimoto’s finally became common

According to Michael Friedman ND, diseases of the thyroid were not common in 1967. However, by 2015, it’s one of the most common things in medical practice.1

Daughter 2

Hashimoto’s is most prevalent between the ages of 45 and 65 years and is more common in women than in men, with female predominance in a ratio of 10:1 to 20:1.  Although it is primarily a disease of older women, it can occur in children and is a major cause of nonendemic goiter in children.2

Studies by Hunter et. Al. have estimated rates of hypothyroidism in people younger than 22 to be between 0.113% – 0.135% and they note that these values are at least twice those of previous estimates3 showing a marked increase in frequency as is seen among most autoimmune conditions over the past 50 years.

Children with Hashimoto’s

Autoimmune hypothyroidism is still considered relatively uncommon in children, to the point where I had one doctor say to me Oh no, she can’t have Hashimoto’s – children don’t get it.  The look on his face was priceless once he checked her notes to see her pathology and medications! 

This lack of awareness also extends into the community.  While many women have been living with the condition for years, they are often shocked to find out that both of my young daughters, now aged 10 and 13 have it.  This lack of awareness has been our biggest hurdle over the past 2 and a half years, as peer support from other families is vital when you are facing a chronic childhood illness.  While my girls are fortunate in that they don’t have to have daily injections like a diabetic child, they do have to have blood tests at least every 12 weeks, attend a continual onslaught of doctors’ appointments, take medications and supplements and live with the many and varied symptoms on a day to day basis. 

Daughter 1

As with adults, Hashimoto’s manifests in a myriad of ways in children.  Some have weight gain while others struggle to put weight on.  Fatigue, along with joint and muscle pain are common, as is thin, brittle hair and brain fog.

We have been exceptionally fortunate in that we have had full support from both of their schools.  We have actively involved their teachers and principals every step of the way to let them know what is going on – especially with regards to school attendance.  Other families have turned to homeschooling to provide a more individualized and supportive learning environment for their child.

Finding your new normal as a family

As a family, I think the most important thing is to find your new normal.  You need to be able to support their additional needs without fussing too much and smothering them.  They still need their independence and to live a normal childhood – just with a few modifications.  For our youngest, this means only attending school 4 days a week, so that she can stay home on Wednesdays to rest.  For our 13 year old, it means making sure she eats properly, gets adequate exercise, and drinks enough water.  Like anyone living with a chronic illness, it’s about figuring out their individual needs and catering to them.

A book about Hashimoto’s in children

If you would like to know more about autoimmune hypothyroidism in children, feel free to check out my book (available on Amazon http://amzn.to/1MCYAGG).  I wrote it to help spread awareness that thyroid disease affects children, and to provide some much needed support to other families walking this journey, It not only tells our story, but I’ve also tried to include all the tidbits of information I wish we had known at the beginning.  All the little things that no-one ever tells you.

Thank you so much to Janie and Stop the Thyroid Madness for allowing me to share my family’s story and to help spread the message that hypothyroid kids and their families need support too!

From Janie Bowthorpe of Stop the Thyroid Madness: I strongly recommend her book if you suspect or know your child has Hashimoto’s disease.

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Hashimoto's: Taming the Beast
Check out the book for adults with Hashimoto’s!!
https://laughinggrapepublishing.com

Do you love being inspired??

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Dear THYROID FRIENDS,

Here’s a most stunning and inspirational CHRISTMAS CARD video created by Thyroid Patient Julie! It warms your heart and gives you the most important part of the season: HOPE!!

Here’s wishing you a wonderful holiday season and may you Seize the Wisdom, Thyroid Warriors! CLICK BELOW:

https://vimeo.com/115031541

 

P.S Join in us the Stop the Thyroid Madness STTM Facebook page: https://www.facebook.com/StoptheThyroidMadness

Gee golly bazooka: guess who started a conversation with me?

SumoWrestlersYesterday, I was meandering through a small biking/river runners store, exchanging a vest I got my son for Christmas that turned out to be too large, and looking intently for a replacement gift he’d like.

The only other shopper left—a tall, dark and handsome young man. And almost as quickly, he re-entered,  approached me, and asked if that was my car out there.

“My car?” I replied. “Yes, why?”

“I’m curious about the sticker you have on your back window,” he stated with a friendly but curious smile.

The sticker is of Calvin peeing on the word of a particular T4-only medication.  I give these away free if someone requests it with their current order of the STTM book.  And this was not the first time I’ve been asked about that attention-getting sticker.

So I proceeded to tell him that I’m a Thyroid Patient Activist, owner of Stop the Thyroid Madness, about the history of T4, how lousy many patients have reported doing on it for nearly 60 years with their own variety and intensity of lingering hypo symptoms, and how much better natural desiccated thyroid has been for patients all over the world.

I then innocently asked: “Are you on Synthroid?” I just knew I had one more victim of this treatment who needed enlightenment.

“Nope”,  he said with a confident and defiant air.  “I have until recently been a pharmaceutical rep with Abbott Labs.”

THWACK.   Standing before me stood a mighty well-trained Big Pharma champion for Synthroid who was going to reveal and defend his propaganda like a master. And that led to the most heated and piercing give-and-take I’ve ever experienced, right in front of the chagrined and wide-eyed sales person at the checkout desk. We were like sumo wrestlers butting our words against each other.

When I explained the slew of continuing symptoms reported by patients worldwide who have been on T4, and no matter how high they raised it…his response?  “Those symptoms can be the result of many issues other than hypothyroidism.”

I responded: “Well isn’t it odd that those who are hypo and on Synthroid, and who get on desiccated thyroid, find those symptoms completely removed.”

His reply?? “Heroin can do the same thing”.  Groan. I simply had to laugh at him. How many times have we heard the same kind of baloney.

He proceeded to tell me in great detail with each point he made that:

  1. He has worked with many patients and they do well on Synthroid (A rep has worked with many patients? And what in the world does “well” mean?)
  2. Clinical trials have proven that Synthroid works. (Ah! You mean those financed by Abbott Labs and which are contrary to the reported experience of millions of patients around the world? Those??)
  3. The TSH lab test gives proof about the efficacy of T4 (Funny how patients all over the world have proven by their continuing symptoms that the TSH lab test for the diagnosis and treatment of hypothyroidism belongs at the bottom of a trash heap)
  4. There are many differences in the efficacy of T4 brands to explain any issues in patients (Funny how not ONE brand of T4 has been exempt from leaving continuing symptoms according to the global rexperience of a huge body of patients) 
  5. Blaming T4 for the amount of adrenal fatigue that “supposedly” some T4-treated patients find themselves with is silly since there can be other reasons for it. (Another laugh on my part.  Clearly, when someone isn’t adequately treated on T4, something has to kick in to keep them going, and voila–it’s those trusty dusty adrenals which eventually just poop out thanks to T4 and the TSH.)

There were much more machine gun stances between us, but that would make this blog post far too long.

One truth we did agree on? That “some” patients do get benefit from using T4. He specifically referred to the elderly. And my quick response? Why accept “some” when patients all over the world report getting rid of that “some” with desiccated thyroid (and especially for certain ones who also treat their low cortisol, low ferritin, and other issues most likely related to an inferior treatment.)

Clearly, we were each deadlocked in our positions.  And he concluded, looking at the sales associate, that neither of us were wrong; we just represented two sides.

And I turned my head, looked him straight in the eye, and said:  Uhhh, no. YOU are completely and totally wrong.

P.S. After he left, the sales gal said she was totally in tune with what I was saying, and wrote down the name of this website. lol lol

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See the blog post below about favored Canadian pharmacies, plus many more comments by patients.

What the heck is going on with desiccated thyroid and current shortages? Read about it here.

How’s your weight?? 6 Holiday Facts for Thyroid Treatment from Stop the Thyroid Madness

(Though this post was originally written in 2008, it has been updated to the present day and time and still applies to TODAY’S holiday! 🙂 )

With the holidays here and all the goodies, it can make us all shudder as we deal with all that great food!

I admit it: At Christmastime, I LOVE the easy Gingerbread Boy Cookies recipe I used when the boys were little, the Microwave Fudge recipe to die for, my world famous Chocolate Chip Meringue Cookies which I color red and green, my mother’s wonderful Pralines which I occasionally try to make myself,  and Grandma’s Fruit Cake–yeah an actual fruit cake I LOVE, which I order EVERY SINGLE YEAR at this time.

And it’s hard not to gain weight! Is that you, too?? So let’s go over 6 HOLIDAY FACTS about thyroid treatment with desiccated thyroid or T3:

1) WP Thyroid, NP Thyroid,  Naturethroid, T3, etc or any other excellent thyroid medication is not meant to be a Christmas weight loss pill. Desiccated thyroid medications consist of thyroid hormones: T4, T3, T2, T1 and calcitonin. They simply give you back what your own thyroid is not giving you…the same five hormones which give you a stronger immune system, a normal body temperature & improved metabolism, better energy, healthier hair and skin, less aches & pains, emotional happiness, better lipid profiles like cholesterol, stronger bones…and on and on.  But even with all that benefit, and even though it does improve your metabolism, desiccated thyroid, or even adding T3 to that T4, is not meant to be a weight loss pill.

2) NDT or T3 can only do its holiday job if you have strong adrenals or adequate cortisol treatment. Because cortisol is needed for thyroid hormones to move from your blood to your cells, you can only benefit optimally from desiccated thyroid during the holidays if you are lucky enough to have strong adrenals, or if you are giving yourself back the cortisol you need based on stable temps, blood pressure, and removal of most low cortisol symptoms.  So don’t forget that cortisol right now, and definitely consider adding a stress dose of cortisol if things get rough with the in-laws. (See Chapter 6 in the STTM book for even more details about stable temps, blood pressure, and stress dosing)

3) Don’t drink that NDT down with Egg Nog! Calcium is a known binder of thyroid hormones in your stomach, keeping you from benefiting from some of those health-giving thyroid hormones.  So if you swallow your desiccated thyroid or T3, get the water.  Or even better, do it sublingually.

4) Don’t expect NDT to keep you from looking like Santa Claus: you still gotta exercise & watch what you eat! It’s true: the optimal use of desiccated thyroid does raise your metabolism and eats those extra calories up like PacMan.  But if you’re like me, you can still have a tendency to put on those love handle butter pounds if you eat your fill of holiday foods.  ho ho ho. To curtail the gain, add exercise to your holiday regime, or increase what you already do. I try to aerobically walk a LOT during the holidays. And when I’ve eaten a Christmas stocking full of goodies, my next meal will be nothing but high protein, like  turkey, cheeses and nuts. Or, you can also balance your intake by choosing one meal a day to be low glycemic to somewhat balance out the high glycemics you know you are going to eat later. For example, I make my breakfasts only eggs and nitrate-free bacon, or plain yogurt with berries, nuts, and Stevia.

5) Building a holiday snowman outside?  Consider an extra 1/4 grain of NDT. It’s a fact that prolonged exposure to cold increases your demand for energy, which in turn can increase your demand for more thyroid hormones. As a result, many patients find that adding an extra 1/4 grain of desiccated thyroid to one’s daily amount helps meet the demands of Frosty the Snowman or that holiday sprinkling of lights all over your house in the cold air.  Talk to your doctor.

6) Give a gift of the STTM book to a loved one. There are other good thyroid books on the market, but unlike all of them, this is the bible of patient experience on successful thyroid treatment. You’ll find volumes of information that patients all around the world have learned. A true patient-to-patient guide to feeling wonderful again.  Go here to order.  And the publishing company is extending the time you can order a book to be sent DIRECTLY to your loved one.

HO! HO! HO!

JanieSignature SEIZE THE WISDOM