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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

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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