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One more kooky & hilarious video! Plus more about bipolar, pregnancy, mistakes patients make.

HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

  1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
  2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.
Remember: Stop the Thyroid Madness, aka STTM,  is a patient-to-patient informational site meant to educate and inspire you with that information. Talk to your doctor about what you have learned; use the STTM revised book right in the office, and push for what you believe in, and you can go a long way to feeling MUCH better.
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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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Dr. Lowe wants to talk to you more directly this Thursday–post your questions here!

Dr.JohnCLowe

Please note: Dr. Lowe is NOT an MD or DO who see’s patients and can prescribe. He’s a thyroid and fibro “researcher” with good knowledge about T3,  fibro, metabolism, supplements etc. Many questions have been coming in which are already answered on STTM, or are more targeted to a practicing physician, not a researcher. FYI.
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1-14-08: COMMENTS with your QUESTIONS ARE NOW CLOSED TO POSTING.  There are more than he can answer right now. See you tonite!

On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th.  Join us for Part 2!

Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal www.thyroidscience.com as well as his own www.drlowe.com

And this time, Dr. Lowe is going to spend more time answering  your specific questions. Check out his websites above to get an idea what his expertise is, which includes the use of T3,  Hashimotos autoimmune thyroid disease, iodine, fibromyalgia, the tyranny of the TSH lab test, good supplements, the FDA, and more.

So here’s your chance: think of one or two questions you’d like to hear him answer. Please, if you have more more than two,  narrow them down to the two most important, and keep them brief.  No exceptions. Two max only, and brief.  Then use the Comments below to post them.  Be sure and check out if your questions have already been asked in other comments.

I’ll be collecting the questions ahead of time and will let him preview them. He wants to give you his best.

TIPS ABOUT TALKSHOE: Some reported being booted off and having to quickly rejoin. One step that may help is to download the Talk Shoe Live Pro ahead of time (takes 25 minutes for some) and use that software during the call, since it gives you far more stability.  Also, make SURE you have everything else closed and/or not running on your computer at the same time you are in the Talkshoe call. I will also be chatting with Talkshoe support and will get more ideas.

Also, don’t wait until the call occurs to mention your question. We found it difficult to try collecting them on the Chat. Ask now!!

Yes, you can also call in live during the Call, but it’s good to first let me know your question here.

And finally, at a certain point of those who join (after 300 on chat), Talkshoe participants are automatically unable to post on the chat. You can listen, but no chatting. So if you want to chat, join as soon as the Call opens up, which is 15 minutes before the actual audio begins. Times for the audio are 9 pm Eastern, 8 pm Central, 7 Mountain, and 6 pm Pacific.

The Stop the Thyroid Madness Talkshoe page: http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc

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See the blog post below those about Lowe for a very insightful Guest Blog Post by Amy about her role as an Undercover Thyroid Advocate. Below that, you can read how I was wrong about what it was like to be thyroidless, and several great comments.

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Jane Pauley: hives, depression & bipolar may be more connected to a poorly diagnosed and treated thyroid condition?

JanePauleyThough this post was originally written in 2009, the principles and information are still applicable today!

You might have already known about her, but it was only a few days ago when I found out that the effervescent Jane Pauley, former host of the The Today Show and Dateline NBC, has had certain medical struggles in her lifetime. They have included hives (treated with steroids), depression (treated with an anti-depressant), a bipolar disorder (treated with lithium), and the autoimmune thyroid disease called Hashimoto’s (treated with Levoxyl).

Hives are sudden small raised bumps which can mass into patches, and are often itchy and miserable.  Bipolar, also called Manic Depressive Disorder, involves swings between extreme mania (excited, energetic) followed by depression (extreme sadness or lowered response to life).

And all the above four issues made me pause.  Consider the following:

1. Hives have not only been linked to hashimoto’s disease for some, they have both been successfully treated with the most brilliant medication for hypothyroidism ever created: natural desiccated thyroid. That healing connection was revealed by the beloved Dr. David Derry of Canada here.  Hives is also mentioned as a lingering hypothyroid symptom while on T4 meds which went away with desiccated thyroid.

2) Depression is all too common for those with undiagnosed hypothyroidism (thanks to the lousy TSH lab test) or undertreated thyroid disease (thanks to the lousy T4-only meds like Synthroid which promotes depression and other lingering symptoms). Many patients report a resolution of their depression with desiccated thyroid if they understood that it’s about “optimal” doses. See the green graphic here.

3) Bi-polar can often be a misdiagnosis for Hashimotos disease, since the latter can cause the same swings. Even without Hashi’s, bipolar and other mental health issues can be a common manifestation of low cortisol aka adrenal fatigue, also caused by undiagnosed hypo because of the TSH, or undertreated hypothyroidism with T4.  At the very least, bipolar can be a common manifestation of a hypothalamus-pituitary—adrenals (HPA) axis dysregulation, again common with those undiagnosed or undertreated hypothyroidism.

4) Lithium, ironically, is a known cause of hypothyroidism if taken in high doses, only making one’s thyroid situation worse, as well as promoting potential adrenal fatigue and low cortisol.

Now granted, Jane’s big four of hives, depression, bipolar, and thyroid disease could be coincidental.  But there’s so much connection in one way or another between them that you are left wondering if she’s been a victim of misdiagnosis and undertreatment just like hundreds of millions of us thanks to labs and medications which do not work. And she may need a good doctor to be reevaluated, besides put on desiccated thyroid and discover what patients have learned about better treatment.

And on another note: I fear it’s going to take someone just as powerful, and as stricken with health issues which could be related,  as Jane Pauley is, to FINALLY break open the profound and destructive media silence about this scandal of thyroid treatment diagnosis and treatment which has left hundreds of millions SICK with profound stories,  and is the very reason Stop the Thyroid Madness exists. Do we dare hope? We’ll see.

Do you have a similar story of mental health issues that ended up being connected to your thyroid and/or adrenal state? Use the Comment form and let’s talk. Who knows–maybe Jane will see this, ponder, and become far better educated like we’ve had to become!

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Psoriasis, rosacea and hypothyroidism–did you know there’s a connection?

STTM red noses(This page was updated in 2015. Enjoy!)

A thyroid patient and mother of two just informed me that her daughter’s psoriasis on her body completely went away thanks to being on desiccated thyroid, and all that’s left is some on her head. And, her son’s psoriasis completely went away thanks to desiccated thyroid.

Connection? Pretty obvious, isn’t it. Here are three skin conditions that can be related to your thyroid issue:

Psoriasis

Psoriasis is an autoimmune skin disease that appears on the skin chronically due to an immune system going awry. It results in red scaly patches with a white dead-cell buildup. You can often see it hand-in-hand with Hashimotos.

Rosacea

Rosacea is another skin problem, though not autoimmune, that causes a redness of the skin, including the cheeks and nose, or the forehead and chin.

I personally had rosacea on my nose for years—my oh-so-romantic “clown nose”.  But just like the mother’s son and daughter with psoriasis, my rosacea eventually went away, as well, after I had started on desiccated thyroid and raised it high enough to remove my hypo symptoms—the latter which did not totally happen on Synthroid and got worse the longer I stay on.

Pretibial Myxoedema

Another condition called Pretibial Myxoedema, also called thyroid dermopath, can present itself with either hyperthyroidism like Graves or hypo. It often affects the feet with swelling, lumpiness or lesions, or you can have it on other places on your skin. It’s caused by excess hyaluronic acid.  It can also be associated with autoimmune thyroid disease.

Chronic skin disease is just another reason to be adequately treated with desiccated thyroid, or at the very least, add T3 to your T4—a much better option than being only on the latter.

Namaste Janie

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