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Tag: thyroiditis

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

Dr. Melnick discusses alarming article from Harvard about the use of the TSH and thyroid treatment!

(Note: if you are reading this via email notification, do NOT reply to the email if you want to comment. Click on the title of the blog post, which will take you directly to the blog post. Scroll down to comment there.)

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P4089852Dear STTM Blog readers, I am so fortunate to talk to many wonderful individuals because of Stop the Thyroid Madness. And recently, I had a conversion with the very insightful Dr. Hugh Melnick of New York City.

Dr. Melnick brought my attention to a very disturbing article titled “For borderline underactive thyroid, drug therapy isn’t always necessary” that came from the Harvard Health Letters in October 2013, You can see it here: http://www.health.harvard.edu/blog/for-borderline-underactive-thyroid-drug-therapy-isnt-always-necessary-201310096740.

This conversation between Dr. Melnick and I may be of great interest to STTM readers, besides alarming once you see what is being stated in this article and suggested as treatment guidelines. It’s simply Thyroid Treatment Dark Ages!

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JANIE: Hello Dr. Melnick. I’m so glad to chat with you! Can you tell our readers a little about yourself?

DR. MELNICK: I am a reproductive endocrinologist who has been in medical practice since 1976. As the medical director of Advanced Fertility Services In Vitro Fertilization Center in New York City, I have always been impressed by the large number of  infertile women that I have seen over the years, who are symptomatically hypothyroid, and who conceive after treatment with thyroid medication.

Although I did my medical training at a point in time when the TSH test and Synthroid were just being introduced into clinical practice, I was trained by one of the most widely respected endocrinologists of that era, Herbert Kupperman, MD, Ph.D. to diagnose and  treat patients with potential thyroid issues according to their symptoms, rather than solely by their blood test results.  His vast clinical experience, and subsequently mine, as well, is that treatment with Natural Desiccated Thyroid (NDT) gives far superior symptomatic improvement for the vast majority of patients. Furthermore, the dosage of thyroid medication should always be based upon a patient’s clinical symptoms and not the TSH level.

JANIE: That greatly impresses me when I learn of doctors like yourself who understand the efficacy of Natural Desiccated Thyroid as well as the problems with using the TSH lab test.  You recently brought my attention to what was written just a few months ago by Heidi Godman, the Executive Editor of Harvard Health Letter (see introduction above). Can you expound on what Ms Godman meant by “borderline underactive thyroid”? 

DR. MELNICK: Actually, Ms. Godman is mistakenly defining hypothyroidism by TSH levels, rather than by a patient’s clinical symptoms. It is obvious that there are many symptomatic and genuinely hypothyroid individuals, who have normal TSH levels, and who experience relief when given a proper dose of the appropriate thyroid medication. The TSH level only diagnoses a type of hypothyroidism that is due to failure of the thyroid gland itself, or a failure of the pituitary gland.

In my experience, the most common form of hypothyroidism is called subclinical because the TSH levels are in the “normal range.” It is a genetic condition, usually passed through the mother and manifests itself later in adulthood. In subclinical hypothyroidism, the individual’s cells need more active thyroid hormone–T3–than their bodies are able to produce in order to function properly. Therefore, supplementation with a thyroid medication containing T3, in the proper dose, will relieve the troubling symptoms and allow the cells to function optimally.

Again, basing the dosage of thyroid medication on TSH levels is incorrect. When treating hypothyroidism, we are not treating a condition like diabetes, in which the insulin dose is based upon the patients’ blood sugar levels. Although they are both endocrine disorders, they are vastly different conditions and cannot be treated in the same fashion, although many endocrinologists still insist on doing so!

JANIE: In the article, Godman quotes that prescriptions for levothyroxine have increased from 50 million in 2006 to about 70 million in 2010, and a similar increase has occurred in England and Wales. She then calls this increase in treatment “pretty risky business”, citing irregular heart rhythms, insomnia, and loss of bone density”. What is she implying there?

DR. MELNICK: I think that the observed increase in the use of the thyroid medication Synthroid is due to the fact that hypothyroidism is a very common condition, affecting at least 35% of the female and 10% male population.  Considering the population estimates for 2013 is 317 million people in the U.S.A. and the population of the United Kingdom is estimated to be 70 million, 28% of the population in the U.S.  and 23% of the population in England, (assuming one prescription per year per individual patient) are being treated for hypothyroidism. This is actually a bit less than the estimated incidence of hypothyroidism in this country. I also believe that more cases of hypothyroidism are being found because people, in general, are more informed about the symptoms of hypothyroidism and seek treatment.

In my opinion, Ms. Godman erroneously categorizes treatment of hypothyroidism a “pretty risky risky business”. The risks of not treating hypothyroidism is, in fact, more potentially injurious to a patient’s health! 

For example, the increased risk of heart disease in untreated hypothyroid individuals is a solid example of why hypothyroidism needs to be treated. The examples that she cites, namely, irregular heart rhythms and insomnia, are found in many people with hypothyroidism before treatment and are cured by adequate thyroid treatment. The symptoms that she mentioned are not exclusively associated with hyperthyroidism. The loss of bone density claim comes from studies of hyperthyroid individuals, who because of their hyperthyroidism and excessively high metabolic rate, may develop osteoporosis.

JANIE: The next part of this article is alarming. It refers to a particular “clinical practice guidelines” authored by Endocrinologist Dr. Jeffrey Garber, an associate professor of medicine at Harvard Medical School. These guidelines come from a task force representing the American Thyroid Association and the American Association of Clinical Endocrinologists. The first guideline is as follows, and goes completely against what informed thyroid patients know to be wise. Can you comment? 

1) The best way to check for hypothyroidism is to look at the level of thyroid stimulating hormone (TSH) in the blood, and when the TSH level is above 10 mIU/L, there’s uniform agreement that treatment with levothyroxine is appropriate. 

DR. MELNICK: Firstly, clinical practice guidelines are merely suggestions that have been developed to help physicians with limited experience diagnose and treat medical issues. Clinical guidelines are like a cook book, which describes a recipe that makes a simple meal, but not necessarily a complex and elaborate feast. That said, it is quite obvious that the way in which I diagnose and treat hypothyroidism is quite different than that which is suggested by the above referenced societies.

Although I do perform a complete battery of blood tests, including antithyroid antibodies, iron, vitamin B12 and vitamin D levels, I believe that a clinical approach – listening to a patient’s symptoms and treating a patient accordingly – is, in some ways, more important in diagnosing and properly treating patients suffering with the symptoms of hypothyroidism. If a physician only looks at a patient’s blood tests, without listening to the patient’s symptoms and asking them appropriate questions, many people who legitimately need thyroid medication will be denied proper treatment. That is precisely the reason that so many people come to me suffering with all the classical symptoms of hypothyroidism and tell me that their doctors have tested their thyroid and found them to be “within normal limits”.

It is not surprising when these very same patients experience symptomatic improvement when treated with adequate doses of NDT. I rarely treat patients initially with Synthroid. The primary reason is that Synthroid, being a synthetic T4 (a weak thyroid hormone- not chemically identical to human T4), must be converted into T3, the potent form of the hormone that enters every cell in the body and makes the cells of the body function normally. Unfortunately, many individuals are unable to successfully convert T4 into T3, so the patients’ symptoms remain, yet the TSH level is normal.

Natural desiccated thyroid (NDT) is made from the thyroid glands of pigs, which produce thyroid hormones chemically similar to that found in humans and does contain T3. Porcine (pig) thyroid gland also contains other thyroid hormones and proteins, which, in my experience are much more effective in relieving the symptoms of hypothyroidism than synthetic T4.  Who can argue that a natural treatment, if availble, is to be preferred over a synthetic one.

JANIE: I loved the analogy above to a cook book, Dr. Melnick! Garber’s second most-emphasized guideline is the following, and I would love for you to comment on this as well, as informed thyroid patients would find this very disturbing, as well: 

2) If the TSH level is between 4mIU/L and 10mIU/L, treatment may still be warranted in various situations:  

  • if the levels of actual thyroid hormones in the blood–known as thyroxine (T4) and triiodothyronine (T3)–are abnormal
  • if the bloodstream contains anti-thyroid antibodies that attack the thyroid. These antibodies would indicate a hypothyroid condition called Hashimoto’s disease, in which the immune system mistakenly attacks the thyroid.
  • if there is evidence of heart disease or risk for it. 

Garber is next quoted as saying “Use thyroid hormone for a brief period of time.”  and “If you feel better, you can continue with treatment. If not, then stop.”  That recommendation is quite alarming as well, as it fails to understand that it may not be about stopping thyroid medication, but moving over to a far better treatment with natural desiccated thyroid, which informed thyroid patients know should have been the first treatment of choice anyway. Can you comment? 

DR. MELNICK: In my clinical experience, 99% of patients with TSH levels over 4.0 are quite symptomatic, if questioned about their symptoms properly. Therefore, treatment is absolutely mandatory, both to relieve “quality of life symptoms” as well as to prevent heart disease, lower blood pressure, normalize blood sugar and cholesterol levels, if they are found to be elevated.

Dr. Garber’s recommendations about using thyroid medicine for a short period of time and continuing it if improvement is noted omits two essential factors. The first is that since he treats his patients only with Synthroid, a significant percentage will show no improvement because their symptoms are not relieved because they cannot convert T4 into T3. The second factor is that by following TSH levels in the blood, a patient may not actually be taking a high enough dose of thyroid medication, yet  will show low TSH levels in the blood. The level of thyroid hormones circulating in the blood-whether they are bound or free- only indicate absorption of the medication and give no indication as to the amount of T3 entering the cells. When an individual gets enough T3 into their cells, their symptoms will improve.

The only way to measure the correct dose of thyroid medication, in addition to noting improvement in symptoms, is by measuring the Basal Body Temperature and by the measurement of nerve conduction velocity (Thyroflex Test). This is a noninvasive test  which gives a good indication of dosage adequacy. The slower the patient’s nerve conduction velocity, the higher the dose of thyroid medication that is required.

One main point that must be noted is that thyroid medicine may take up to twelve weeks in order to experience some degree of symptomatic relief. The other is that the patients’ dosage should be increased gradually and in divided daily doses until symptomatic relief is  experienced. The dose should be reduced if the patient experiences rapid or irregular heartbeat, shakiness or anxiety. These symptoms will resolve in several hours and are not harmful.

Hashimoto’s or autoimmune thyroiditis is a much more complex clinical condition, in that symptoms in many individuals may vary, from hypo to hyper from time to time. Treatment with thyroid hormone is usually needed, but some patients, in the early stages of thyroid autoimmunity, may be fairly asymptomatic.  As the condition progresses, symptoms will eventually be experienced. The levels of antithyroid antibodies do not correlate with the severity of a person’s symptoms.  Antithyroid antibodies never disappear and will always be detectable in the blood.  There may also be gluten sensitivity in some instances, so dietary factors may be important. When an infertility patient is found to have antithyroid antibodies, whether they are symptomatic or not, I always treat them with NDT since it does help them to conceive and seems to reduce the incidence of miscarriages.

JANIE: Heidi Godman then states the following about individualized treatment for hypothyroidism, which informed thyroid patients know by years of experience is a recipe for disaster: “That requires measuring TSH four to eight weeks after starting treatment or changing a dose, another TSH test after six months, then every 12 months.”  

DR. MELNICK: I respectfully disagree with both Ms. Godman’s  formula as stated above, as well as with Dr. Garber’s method for diagnosing and treating hypothyroidism. Although the Harvard Medical School is a very prestigious institution, and that the information that they published cited the work of a physician of professorial rank, it is quite contrary to my own clinical experience and that of the many untreated or inadequately treated individuals who suffer with the many debilitating and disturbing symptoms arising from thyroid hormone deficiency.

I say this in jest, but if a patient follows the treatment protocol advocated by Ms. Godwon, they are more like to die of old age before their symptoms of hypothyroidism begin to show signs of clinical improvement .

JANIE: Your last sentence was excellent, Dr. Melnick. Your sage observations and wisdom jive with over a decade of successful patient experiences and wisdom! And we must push AGAINST the guidelines suggested by Dr. Jeffrey Garber. Informed thyroid patients know how disastrous they can be!

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38 replies

Check out this photo, about Vitamin D, 64 symptoms removed, and life after thyroid cancer~

OOPS. THIS GAL’S DOCTOR WAS A BIT CLUELESS…

Look carefully at the photo to the left. You will see the actual outline of this woman’s thyroid. It’s obvious. It’s swollen. A swollen thyroid is called a goiter, and can be due to an autoimmune attack of the thyroid called Hashimotos, aka thyroiditis.

Yet, this woman’s doctor insisted she just had a throat infection, gave her penicillin for 12 days, and the outcome?  It’s still inflamed and sore. Jeez, doctor!! WHAT were you thinking!  She states: I always feel something pressing down on my neck and food gets stuck and then I’m having a chocking session. CLEAR thyroiditis and a blind doctor!

Thanks to this gal’s participation in the Stop the Thyroid Madness Facebook groups, she knows the truth, is empowered, and is going to try and get the RIGHT labs and treatment this time! Her biggest challenge is where she lives–the UK with a very dark- ages medical system that worships T4-only and doesn’t get the efficacy of Natural Desiccated Thyroid. It’s not a pretty picture in the United Kingdom or a lot of European countries if you have thyroid disease.

VITAMIN D–DON’T DISMISS THIS IMPORTANT VITAMIN FOR YOUR THYROID HEALTH!

Vitamin D is considered a steroid plus a prohormone, i.e. it’s not yet a hormone, but has affects on real ones. And your body can get it from sunshine exposure, or you can supplement with it. Why is it a great vitamin? It helps balance out your calcium levels and bone density, can help lower stress and blood pressure, and promotes a good immune system.

Vitamin D is found in two forms: cholecalciferol (vitamin D3) which is made via skin exposure to sunlight, or ergocalciferol (vitamin D2). D3 is the natural form and why it’s often preferred for supplementation over D2. After vitamin D3 is formed in your skin or taken as a supplement, it is then metabolized into two different substances: 1) 25-hydroxyvitamin D (25(OH)D), known as calcidiol and your storage Vitamin D, and 2) 1,25-dihydroxyvitamin D (1,25(OH)2D3), known as calcitriol. The former is the Vitamin D you measure via blood.  Good information on both can be found in the abstract here.

So why bring it up?  First, it’s important for your thyroid, i.e. it has to be in sufficient amounts for thyroid hormones to work in your cells. And second, a huge body of thyroid patients find themselves with low levels of this important vitamin! How to raise it? It can take 10,000 IU’s of D3 daily. Some doctors even prescribe more and sometimes once a week in these very high amounts. Add an acid to the drink you use to swallow your Vit. D–like one tablespoon Braggs Apple Cider vinegar, or lemon juice. It will promote better absorption.

SHE ELIMINATED 64 SYMPTOMS THANKS TO NDT AND TREATING HER LOW CORTISOL!! 

Next time you hear that NDT is not good, think twice. Her name is Mary, and you should check out the 64 symptoms she eliminated thanks to NDT, here.  You will see that she’s still working on a few more, but the difference is stunning!

A TESTIMONY FROM A COLLEGE STUDENT OF HOW NDT CHANGED HIS LIFE AFTER THYROID CANCER (even more than being on T4 with T3!)

I’m a male college student and in 2008 I was diagnosed w/ thyroid cancer. Cancer aside, I was placed on Cytomel followed by Synthroid. When I asked my doctors for natural options they said there were no such meds. For four years I was a prisoner in my own body. I had rapid mood swings, I was always cold, had a lack of energy and worst of all dry skin. The dry skin became so bad that I started to develop cystic acne covering my entire back and many on my face–I had no confidence and work out 5x a week yet I was scared to take off my shirt. I knew that there had to be a solution being that I didn’t have any of these symptoms prior to getting my thyroid removed so I began to research. This website, Stop the Thyroid Madness, got me in the right direction as far as understanding the role o f T3 and T4. After many lies, and doctors who denied to write for Armour or Naturethroid, I finally found a woman who knew about the “madness”. I have only been on Naturethroid for one month and my TSH, T3 and T4 levels may be off but I feel like the old me again! I have energy, I have steady moods, I have less brain fog and my skin is finally producing oil again and my acne is almost cleared 100%! Thanks for your work your site had changed my life for the better!

DID YOU KNOW THAT THE STTM BOOK IS AVAILABLE IN ENGLISH, SWEDISH AND GERMAN?? A perfect gift for your friend or loved one who speaks any of those languages. Go here.

5 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.

 

 

70 replies