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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

http://amzn.to/1MCYAGG).

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

61 replies

“Are Endocrinologists just DETERMINED to be stupid?” ask some thyroid patients.

(Though this was originally written in 2011, it has been updated to the present day and time. Enjoy!)

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Will it ever end?

A very troubling article

On March 21st, 2011, from the Endocrine Today website, comes the article Hypothyroidism only partially responsible for decreased quality of life in Hashimoto’s thyroiditis. And this article has so many troubling comments and wording that it has made some thyroid patients question whether their Endocrinologist can really help then.

For example, the article notes that there seems to be a “higher symptom load and the lower quality-of-life scores in the group of patients with increased anti-TPO levels”, which can include “Chronic fatigue, dry hair, dysphagia, irritability and nervousness”.

Yet, the article states, these patients have

    • “normal thyroid function”
    • are “euthyroid”
    • have an “ideal biochemical response to thyroid hormone replacement therapy.”.

Are you kidding me, say many thyroid patients???  Euthyroid technically means “the state of having normal thyroid gland function.” Yet, chronic fatigue, dry hair, dysphagia (difficulty swallowing), irritability and nervousness are far from normal, besides being classic hypothyroid or Hashimotos symptoms, as well as having potential adrenal issues from having poorly treated hypothyroidism!

And of course, most informed thyroid patients know that ” euthyroid” and “normal” and “ideal” in the mind of poorly-trained doctors refer to an ink spot on a piece of paper called the TSH lab result and NOT cellular receipt and/or use of thyroid hormones. The TSH is a pituitary hormone, not a thyroid hormone. The TSH lab test has failed patients for decades, just as has T4-only like Synthroid, levothyroxine, Eltroxine, etc!

Also mentioned is a particular Austrian study involving 426 women aged 19 years or older who were undergoing surgery for benign thyroid disease. When patients come on thyroid groups and report Endocrinologists who want to remove their thyroids simply because they have the treatable Hashimotos disease, you have to wonder why 426 women were having surgery for “benign thyroid disease”…

But in spite of all the above, there is hope!

Hashimoto’s patients have become wise and informed. To read all the ways patients have learned to adequately treat Hashimotos, go here.

To find out if you now have an adrenal problem, go here. This is important to know because it can be problematic in raising NDT if you have low cortisol, or high cortisol. Thus, the need to treat it first.

To find a good doctor to work with, and/or teach while you are working with, go here.

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Do you look back and wonder about the fact that your thyroid was taken out?  Let us hear your story by commenting on this post. What has been your experience with an Endocrinologist? Tell us about it.

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** Have you Liked the STTM Facebook page? It provides daily information and inspiration just for thyroid patients!

** Check out recommended patients groups on the internet.

** Stop the Thyroid Madness is available in TWO different books! //www.stopthethyroidmadness.com/comparing-the-sttm-books/

26 replies

If you have Hashimoto’s, you may want to become aware of Hashimoto’s Encephalopathy

Screen Shot 2015-07-06 at 8.25.26 AM

Though this post first came up in 2010, it has been updated to the present day and time. 

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I got an email from a sweet thyroid friend and advocate, Bev, aka Thyro-butterfly, whom I’ve known for several years. And Bev has had two relapsing and unnerving bouts with a condition that’s not common, and  under-diagnosed: Hashimoto’s Encephalopathy (HE).

She stated “I think everyone who has Hashimoto’s disease should know that this exists because the symptoms are so similar to severe neurological problems. And the treatment, though not curable, is relatively easy to do….”

What is Hashimoto’s Encephalopathy (HE)?

Hashimoto’s Encephalopathy is a rare neuroendocrine disorder which was termed and recognized in 1966 and has a strong connection to the autoimmune thyroid disease called Hashimotos–a form of Thyroiditis. i.e.  just as antibodies attack your thyroid, there are rare cases where it can attack and destroy your brain cells. Having a high thyroid peroxidase (TPO) antibodies lab result is common with Hashimoto’s Encephalopathy, and can accompany high anti-thyroglobulin antibodies, as well.

Researchers have also coined other names for this condition:

  • Steroid Responsive Encephalopathy Associated with Thyroiditis (SREAT)
  • Encephalopathy Associated with Autoimmune Thyroid Disease (EAATD)
  • Non-vasculitic Autoimmune Inflammatory Meningoencephalitis (NAIM)
  • Autoimmune Encephalopathy (AE)

The U.S. National Institutes of Health’s Office of Rare Diseases Research refers to it as Hashimoto’s Encephalitis.

Wikipedia states:

Up to 2005 there were almost 200 published case reports of this disease. Between 1990 and 2000, 43 cases were published. Since that time, research has expanded and numerous cases are being reported by scientists around the world, suggesting that this rare condition is likely to have been significantly undiagnosed in the past. Over 100 scientific articles on Hashimoto’s Encephalopathy were published between 2000 and 2013.[2]

What are symptoms that can make one suspicious of having HE?

Those with HE can share many symptoms, or can have unique symptoms from each other. They include:

  • tremors
  • seizures
  • jerking
  • language difficulty, whether speaking, writing or reading
  • confusion
  • limited attention span or concentration
  • poor memory and retention
  • dementia diagnosis
  • disorientation
  • restlessness
  • convulsions
  • symptoms similar to a stroke
  • poor coordination (walking, fingers, hands, etc)
  • partial right-sided paralysis
  • headaches
  • fatigue
  • sleep problems
  • psychosis
  • coma

Women are more prone to HE than men.

What tests might my doctor do to confirm this?

Studies underscore the need to first exclude “other toxic, metabolic and infectious causes of encephalopathy (disorder of the brain) with neuro-imaging and CSF examination”.  The latter is examining one’s cerebrospinal fluid. But when there are quite high levels of antithyroid antibodies like TPO (thyroid peroxidase), that alone can be a strong enough clue to diagnose Hashimoto’s Encephalopathy. High TPO antibodies can accompany high levels of thyroglobulin antibodies, as well.

What kind of doctor might help me the most?

Many of the published articles on HE have been done by Neurologists from the Mayo Clinic.  If you live in Arizona, Florida or Minnesota, here’s a list of Neurologists associated with Mayo: http://www.mayoclinic.org/departments-centers/neurology/sections/doctors/drc-20117077

Here’s a list of Neurologists by states in the US: http://www.healthgrades.com/neurology-directory

Around the world, you can click on the area you live, then see a list of Neurologists: http://www.wfneurology.org/member-societies

How is HE treated?

Luckily, treatment is fairly straightforward and dramatic against symptoms: steroid use, which is why it’s also termed “steroid-responsive encephalopathy associated with autoimmune thyroiditis (SREAT)”.

Says Elaine Moore in her article titled Hashimotos encephalopathy: A Treatable Form of Dementia:

Patients with SREAT show a good response to corticosteroids such as prednisone and related immunosuppressants because of the ability of these medications to reduce thyroid antibody production and reduce inflammation. Researchers in India report a case of SREAT that did not respond to corticosteroids but showed a very favorable response to plasma exchange, a technique used to remove circulating antibodies.” Doses of steroid can vary from individual to individual, but some do well on 4-6 mg cortisol for a few days. Others may need more.  Remission is the norm for most. You’ll have to watch for relapses. Since misdiagnosis is common, it’s important to talk to your doctor about this potential disorder, testing, and treatment if you have Hashi’s and symptoms similar to any of the above.

Wiki also states: Initial treatment is usually with oral prednisone (50—150 mg/day) or high dose IV methylprednisolone (1 g/day) for 3—7 days.

Thanks to Bev for bringing this issue back up.

 

 

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Chronic Fatigue Syndrome could be UNTREATED or UNDERTREATED hypothyroid!

Though this post was first created in 2006, it’s been updated to the current day and time! Enjoy!

On Thursday night, Nov. 2nd, 2006, I was concerned.

NBC News had a short segment by Robert Bazell, their Chief Science and Health Correspondence. And Mr. Bazell and NBC news announced that there’s a “mystery illness that afflicts more than one million people in the United States, especially women”. And they confirmed that the government (Centers for the Disease Control aka CDC) is telling doctors: it’s real. And it’s called Chronic Fatigue Syndrome…or Myalgic encephalomyelitis, abbreviated as ME, in Europe.

I remember when the term CFS was coined in 1988, even without a specific cause or marker. I remember when they surmised it was due to Epstein Barr Virus. I listened when Mayo Clinic stated that CFS was a “complex disorder”. I have listened when Georgetown University Medical Center stated that “chronic fatigue syndrome (CFS) may be rooted in distinct neurological abnormalities that can be medically tested” and may be a “legitimate, neurological diseases and that at least part of the pathology involves the central nervous system.” I also listened when CDC stated that CFS was “unexplained fatigue of greater than or equal to six month’s duration.”

For years, I have listened to the symptoms of CFS/ME with openness and great sympathy. I listened when I read that small outbreaks of similar fatigue disorders have been described in the medical literature since the 1930s

And I personally  KNOW that unrelenting and debilitating fatigue is real. I know that incapacitating fatigue is real. I know symptoms can be variable, individual, and fluctuate in severity, and that friends and family may not really get how sick they are. I have also lived with chronic, debilitating fatigue, as have millions of others whether they were classified with CFS/ME or not.

BUT….to say that it’s a mysterious illness highly concerns me… for thyroid patients. We’ve had too many doctors proclaim CFS/ME when we presented our fatigue, yet the reality has been poorly treated hypothyroidism or Hashi’s, not a mystery.

And here are interesting facts for hypothyroid or Hashimoto’s patient who get this CFS/ME diagnosis.

1) Chronic Fatigue Syndrome as the label for a mysterious disorder seemed to make it’s appearance within the decade after the lousy but highly acclaimed TSH lab test was created in the mid-1970’s, and during a time when most all patients had been switched from the successful desiccated thyroid to thyroxine-only treatment..the latter which patients now know have been huge failures in the treatment of hypothyroid.

2) Most of the symptoms listed as belonging with CFS are the VERY same symptoms reported by patients who were on inadequate T4-only medications and who were dosed by the TSH. Also, those are the same symptoms that other patients had when they were told they had NO thyroid problem (due to inadequate testing and evaluation of those tests). Additionally, all the symptoms were eradicated when the patient was optimally treated on Armour.

3) Many of the symptoms listed as being those of CFS are the exact same symptoms related to having low functioning adrenals—a VERY common condition that accompanies hypothyroid is a large majority of hypothyroid patients, and which doctors ROUTINELY know NOTHING about. For example. the following symptoms are listed as CFS symptoms, but are ALSO symptoms that hypothyroid patients with low cortisol often have: allergies and sensitivities to noise/sound, fainting, fever, dizziness, balance problems, night sweats, sensitivity to light, anxiety, panic attacks, personality changes, mood swings, unrefreshed sleep…and others.

I am BOTHERED BY THE SIMILARITIES ABOVE!!

I am bothered by the fact many hypothyroid patients who come onto the many thyroid-related discussion groups state they had the diagnosis of Chronic Fatigue Syndrome when they once were on T4-only medications and were dosed by the lousy TSH.

I am bothered when CFS is classified as a “real illness” when these very same patients on these sites lose ALL those symptoms when they dose high enough with desiccated thyroid, ignore the TSH and instead, dose by the free T4 and free T3, and/or treat their low cortisol if it’s confirmed to exist.

I am bothered by the fact that many CFS sufferers are told they have no thyroid problem, when in fact, the hypothyroid-free diagnosis is usually based on very lousy labs called the TSH and T4…and often with no thyroid antibodies labs, which doctors routinely state is “unnecessary”. And if the doctor did do a free T3, he proclaimed the patient “normal” just because the number was “in range”. We, as thyroid patients, have learned that “in range” means squat.

I am bothered by the fact that several listed CFS symptoms are also those of low Ferritin, which leads to anemia, and which is a common condition with hypothyroid patients.

Now in all due respect to patients who have the diagnosis of CFS/ME, or those who suffer from debilitating fatigue–I have been there. I know there are REAL diseases, real conditions, which produce REAL fatigue that may or may not be related to having a diseased thyroid. I once had acute Epstein Barr Virus for a full year, and understand the deep misery and debilitation of fatigue. And I understand that there are other causes for chronic fatigue which include, but are not limited to, mito problems, viruses, enteroviruses, retroviruses, Herpes Viruses, Lyme, Mold and Candida albicans. I can also ascertain that some fatigue has unknown causes.

But I am deeply concerned that the “millions” that CDC is now stating as suffering from a “real disease” might in fact contain a large body who are suffering from untreated or poorly treat hypothyroidism or Hashi’s..

I want to make it clear that I am not saying that “everyone” who is classified as having CFS/ME has undiagnosed or undertreated hypothyroid. The world is not that black and white. But I do suspect, based on the information given above, that many in that “millions” possibly DO have undiagnosed or poorly treated hypothyroid, and/or adrenal insufficiency…and have not done the correct tests or the right treatment to confirm it, and to help RELIEVE them of their misery. The evidence is simply too compelling.

11 replies