hashimotos Archives - Page 5 of 7 - Stop The Thyroid Madness Skip to content

Finally! The 2011 REVISED SECOND EDITION of the Stop the Thyroid Madness book!

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

  • 36 more pages, by and for patients, plus changes & additions in every single chapter
  • Much more detail on adrenal and HPA dysfunction and how to treat it
  • Recognizing and dealing with Reverse T3
  • Identifying and treating gluten issues as related to Hashimotos disease
  • Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
  • More details on labwork preparation, plus what to look for in your results
  • Why you need more than ferritin testing, and details on iron testing
  • Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
  • A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur. 🙂

“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!)

**********

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.

******************************

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.

*******************************

** 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/

How does your insurance deal with desiccated thyroid?

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

Wendy is one of those gals that tries to adhere to “natural” in regards to her medication choices. She switched over to Natural Desiccated Thyroid (NDT) from Synthroid about three months ago.

The transition was slightly trying, says Wendy. Her doctor didn’t believe her that she shouldn’t be on a low starting dose for more than a couple weeks without upping it. So she  went hypothyroid all over again. It’s a common mistake that many doctors make with NDT.

But after successfully upping the dose every few weeks, she will now shout that it’s been the BEST thing  in every way!  She tells folks that being on Synthroid was like having your hand amputated and replaced with a hook, while being on desiccated thyroid was like having it replaced with a fully functional prosthetic.  Her skin is softer, hair is not shedding, her mood has changed in a good way, memory has returned, fogginess has faded. She feels closer to her old self than she has in almost five years.

Now the bad news…

All this time, she only paid $15 for her desiccated thyroid at the local Walgreen’s. But as of April 1st, 2011, it became what is called a Tier 3 drug under her insurance plan–United Healthcare.  Exclaims Wendy in outrage and sadness:  “This means that the natural drug I love, that has restored my in so many ways that the synthetic t4-only drugs never could, will now cost 85 bucks! Who can afford that?!

And here’s the awful irony when it comes to her insurance plan: Synthroid, the worst medication ever thrust upon us in the treatment of hypothyroid, is Tier 2 (i.e. costs less), and generic T4-only is Tier 1 (costs even less).  i.e. if you are under this insurance, you have to pay big bucks to feel a thousand times better.  She has no clue why this is happening, but warns that it might start to happen across the board for others as well!

In the United States, most Tiers look like this (and some companies have three tiers, while others have five):

Tier 1 is for generic medications and has the lowest co-pay

Tier 2 is for “preferred” brand name medications, i.e based on “safety, efficacy and cost”, and is the second lowest co-payment. (I put the word preferred in quotes because it’s not based on what changes YOUR life as a thyroid patient.)

Tier 3 is for non-preferred brand name medications or preferred specialty drugs. It’s termed as those drugs which are not typically used as first line of treatment, and have a higher co-pay.

Tier 4 is for specialty medications, i.e those which require special dosing or administration. Highest co-payment.

In the United Kingdom, where the National Health Service (NHS) provides publicly funded health care, there are formularies which specify which medications are available…or not, and one can get Prescription prepayment certificates (PPC) .

In Australia, “Medicare — via the Pharmaceutical Benefits Scheme (PBS) — subsidises the cost of around 1,700 ‘necessary and life-saving’ medicines. In fact, most medicines available on prescription are subsidised under the PBS, so just by having a prescription filled you receive the benefit of the subsidy. https://www.justlanded.com/english/Australia/Australia-Guide/Health/Medicines-Chemists

Does your health insurance cover your desiccated thyroid?

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

How medical journals affect the prescription practice of your doctor: An interesting article on this found here. And here’s an article about how the author of a medical article fails to state his association with the pharmaceutical of the product he is writing about–one more conflict of interest and influence on your doctor!

Ridiculous! Basing “normal” for Hashimoto’s patients by the TSH, a pituitary hormone, NOT a thyroid hormone: Read it here and weep.

Vit. D can help you stay sharp: So many benefits from optimizing your Vit D, and here’s one with your brain.

Need to talk to others? See all your alternatives here.

How LDN, Baking Soda and ALA cured her cancer–very remarkable story!

I meet many amazing individuals via the internet who have struggled with thyroid problems and clueless doctors. And my latest internet thyroid friend is Francie.

Francie  is the owner of an Multiple Schlerosis group that uses LDN (Low Dose Naltrexone) in their treatment.  And besides having dealt with MS, she is a thyroid patient who had half her thyroid removed due to a cancer threat.  Afterwards, her doctors never suggested that her fatigue, feeling cold, and weight gain was anything except in her head while pushing SSRI anti-depressants on her. She asks “Why can we not keep it simple? Why do they think that we need powerful prescription drugs when a simple hormone can do wonders? “

But Francie’s story goes beyond her thyroid issue. She played a huge role in CURING HER UTERINE CANCER through the use of LDN, Baking Soda, and ALA (Alpha Lipoic Acid). I was SO amazed that she gave me permission to post it here. Read this!

I have found three cheap, easy and safe suggestions to combat cancer: LDN, Baking Soda and ALA.

LDN is Low Dose Naltrexone. I originally started to use it for my Multiple Sclerosis and it honestly gave me my life back. I kept reading about others who were using it for cancers (and other auto-immune diseases, too, like Hashimotos), but that did not affect me, so paid little attention other than to note that the treatment adds Alpha Lipoic Acid, which is a very powerful antioxidant, among other things.

Then in September, I was diagnosed with uterine cancer. Upon examination, it had apparently spread to the cervix, since that area was white and not good looking. Since I could not get an appointment for a couple of weeks (we have no insurance and the only option in this country was the University of Louisville teaching hospital) I decided to do all that I could to combat it during the wait.

I added the ALA (two 300mg capsules daily on an empty stomach) and along with that, infusions of baking soda in the uterus and then a soaked tampax next to the cervix. Within two weeks, the cervical lesions were gone.

Two weeks later, when I went to Mexico for surgery (I really did not need that uterus at age 62), the pathology showed that there was no evidence of cancer on the cervix or surrounding tissue. I attribute that to the constant sodium bicarbonate environment.

There was also no evidence of cancer in the adjacent lymph nodes or pelvic fluid. I attribute that to the LDN and ALA. It was obvious that the cancer predated my use of the LDN, which enormously improves the body’s own immune system, and there was no indication that it had metastasized outside the uterus. Inside the uterus is very hard for anything to penetrate as it is designed to be walled off from the body’s immune system, since it is made to hold what is recognized as a parasite to the host (baby in a mother.) So it is not surprising that the tumor was not killed in the uterus.

I also refused chemo and radiation. With the clean pathology, all of the Mexican doctors recommended that I take care of myself stay as healthy as possible. All of the US doctors recommended chemo at $10,000-15,000 per treatment. If they don’t recommend it and something happens, they can be sued. If they do recommend it and they kill you with it, they cannot be sued. That does not say much about my part in the equation.

There are excellent videos that explain these treatments. Doing a Google for “LDN ALA and cancer” will get lots of info. There is also a yahoo group called lowdosenaltrexone with more than 9000 members, including very knowledgeable doctors to help.

To do some research, one cannot do better than get Dr. Berkson’s book: “The Alpha Lipoic Acid Breakthrough”. He has cured even pancreatic cancers and has the scientific research to prove it. You can see his speech on YouTube here: http://www.youtube.com/watch?v=WqRwXEnPYKk

Like me, you probably want to really beat the bushes and use anything and everything that seems logical, makes sense and CAN DO NO HARM, especially when they are cheap as well. That is what baking soda, LDN and ALA all promise.

Not one of my US doctors suggested any of these, and yet there are people who know that they have cured or stopped the progression of horrible diseases with just these cheap and available products. Our American medical system is drug and money driven. We are sadly, not much healthier for it, in my opinion.

My best wishes to all,
Francie
http://LDN-for-MS.com

AND A FOLLOW-UP SHE MADE TO SOMEONE WHOSE GIRLFRIEND NOW HAS CERVICAL CANCER:

Changing the pH factor makes a huge difference in most living things on earth. We all live in a very narrow pH range.

For this reason, I am always shocked that people are willing to take expensive and life threatening drugs for toe nail fungus, like the one sold on TV for instance. Soaking the feet a couple of times per week in a vinegar solution (1/3 vinegar to 2/3 water) will kill it right away. It can take a year of soaking while the big toe nail grows back, but at least you are not taking powerful drugs in the whole body to affect a small area. Same thing with fingernail fungus. Just keep a pill bottle of diluted vinegar near where you work or sleep and dip the finger in each day or so.

So, it was no surprise that changing the pH factor might inhibit cancer. My main hesitation was the leap to believing that cancer is actually a fungus. I am not so sure that it is.  HOWEVER, I can imagine that fungus sets in with an unhealthy environment and I can also imagine that fast growing cells (cancer) would be more affected by a pH change than normal cells. So, I don’t have to even believe that cancer is fungus to give a change of pH a try. It is cheap and easy and the main question to me is, “why wouldn’t you?” We are talking your life. It is worth saving.

I think that cervical cancer and skin cancer would be the BEST ones to try and probably the most successful for exactly the same reason listed above. You are directly treating the affected area rather than having to change the whole body environment, like with brain or lung cancer.

The cervix is the opening to the uterus. So, if they said cervical cancer, then it is not the same as uterine cancer (I am hoping it is not both, as it was with me.)

If I were your girlfriend. I would douche with a sodium bicarbonate solution. In Mexico, it is sold in drug stores as bicarsol, which is a 5% sterile solution. This is what I had my doctors rinse the pelvic region out with before closing my incision from my hysterectomy.

I don’t think that you need sterile for douching. I used a much more concentrated solution, but after talking with a doctor that I trust, he feels that a VERY concentrated solution could burn the healthy tissue in such a delicate region, as opposed to on the skin, where I read that patients use a baking soda paste.  As a suggestion, I would dissolve a tablespoon full in a cup of water, which should give a nicely basic solution. After douching, do not rinse out the solution, but leave it with that high pH all day.

No matter what else the doctors recommend, you can still do this. My cancer was also in the uterus, so we did infusions of baking soda solution directly inside the uterus. We have medical backgrounds and were not intimidated by this, although I apologize to any who are offended by talking about private areas 🙂 . I don’t know if it helped there, as the tumor was already quite large and I only had a couple of weeks between diagnosis and the surgery to remove it.

I am personally opposed to chemo and radiation and was determined to not go that route. With my use of LDN and ALA (low dose naltrexone and alpha lipoic acid), I feel comfortable that I am doing more and living a healthier life than if I poisoned myself as recommended by western doctors. I believe that in future decades, we will look back on that practice with bafflement and horror, like we look back on bleeding people to cure the plague in the dark ages.

Don’t let your girlfriend be traumatized or intimidated by her doctors. I found the US doctors cavalier, haughty and offended that I had my own ideas and did not instantly treat them like gods. They were horrified that I would go to Mexico for surgery at 1/10th the price that they wanted to charge for the same thing. Not one of them offered something that I could do while waiting for them to wave their magic wands, as if they have any cure other than surgery, chemo and radiation. They did not mention healthy eating, pH factor or immune system improvement or anti-oxident supplementation. They were close minded and dogmatic.

Francie  http://LDN-for-MS.com

From Janie: please note that I am not posting this for you to take things into your hands, or to direct you against radiation or chemo. Each person, along with working with a trusted and good doctor, has to make their own decision. But I found it VERY impressive and worth educating you about.

You can read more about Low Dose Naltrexone here.

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. 

*****************

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.