Skip to content

Author: Janie Bowthorpe

“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! https://stopthethyroidmadness.com/comparing-the-sttm-books/

26 replies

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.

64 replies

A legendary soccer player with hypothyroid who was forced to quit, plus one creative YouTube video.

A guy posted about this one of the STTM Facebook groups, and I found it hauntingly familiar. When I was in my early 30’s, I was forced to quit my beloved career as a well-trained and talented fitness instructor due to hypothyroid complications causing debilitating dysautomia reactions thanks to T4-only medications. It was very grievous and hard.

But famous Brazilian soccer football player Ronaldo, who was the all-time leading scorer at the 2006 World Cup, has had to retire because the game rules FORBID him from taking the hypothyroid meds he needed, even if they have been the lousy T4-only levothyroxine meds. i.e. the rules see taking thyroid hormones as against the anti-doping rules.

What a shame. He’s young, 34 years old, and could have continued with a great career. But you also have to wonder how long he would have lasted at that, because Brazil doctors are still putting people on T4-only medications like so many other clueless doctors around the world.

You can read about it on CNN here. Did you identify with losing a career or hobby thanks to hypothyroidism? What’s your story?

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

I get really interesting emails from folks, and one arrived last week from Brian, the creator of a YouTube video called Our Holy Miracle of the Infallible TSH Test that he wanted me to view.

I confess that when I first saw it, I thought it was quite bizarre! Wasn’t sure what I thought of the humor with the female as she was dressed. But the more I thought about it, I also see it as extremely creative, a good sense of humor, and a pertinent message. In fact, it may strongly appeal to younger folks because of it’s intentional hip irreverence. So, go there with an open mind and sense of humor, and you just might like the message as I do and others are! http://www.youtube.com/watch?v=tOb2POQGE6g

Note: if you are reading this via the Blog Notification and want to comment, click on the title of this post, which will take you directly to the blog and where you can leave your comment.

* The hip (cough) Stop the Thyroid Madness t-shirts are slowing running out, so before they do, you can order yours from here.

* Prefer talking one-on-one? You can schedule a paid consultation with Janie at the bottom of this page.

* If STTM has helped you, make a donation to the hosting fees here. The popularity of this site has resulted in much larger fees and your help is very appreciated.

15 replies

Recall of certain batches of Armour–US, Belgium, UK

If you have 1/2 grain (30 mg) tablets, a label error caused some one grain tablets (60 mg) to be labeled as 1/2 grain tablets (30 mgs). That would mean you could be overdosing yourself if you are taking 1/2 grains. Both sizes need to be returned to your pharmacist with this information and exchanged. i.e. COPY THIS when you take them back.

NOTE: they would be Lot #: 1077413 with an expiration of 9/30/2011 This is what your pharmacist would need to know.

PRODUCT

Armour Thyroid (thyroid tablets, USP), 1/2 grain (30 mg) , each tablet contains 19 mcg levothyroxine (T4) and 4.5 mcg liothyronine (T3), 100-count bottle, NDC 0456-0458-01. Recall # D-231-2011
CODE
Lot #: 1077413, Exp. 9/30/2011
RECALLING FIRM/MANUFACTURER
Recalling Firm: Forest Pharmaceuticals Inc., Earth City, MO, by telephone and letters on October 6, 2010.
Manufacturer: Forest Pharmaceuticals Inc., Cincinnati, OH. Firm initiated recall is ongoing.
REASON
Labeling: Label error on declared strength; some bottles are mislabeled as containing 1/2-grain tablets but actually contain 1-grain tablets. The entire lot is being recalled even though some bottles are labeled correctly because bottles of 1/2-grain and 1-grain could be shrink-wrapped together.
VOLUME OF PRODUCT IN COMMERCE
31,172 bottles approx.
DISTRIBUTION
Nationwide, PR, Belgium and the United Kingdom

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm242808.htm

  • See my post to a very, very thankful individual, here.
  • Have you switched from one brand to another? Tell us how you did here.
  • Has STTM made a difference in your life? Make a donation to the hosting fees here, as they have become quite large due to the popularity of this site:
  • Need to talk to other patients, or want a one-on-one consultation with Janie? Go here.
1 reply

Change is slow: the everlasting frustration of thyroid patients, and this one in particular

In the daily emails I get from folks, some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

Her email today was titled OMG, THANK YOU!!!!!!

She explains that for twenty years, she has been sick, fired doctors, had them fire her for being “uncooperative in my treatment”, and more. And today, after finding STTM, she wants to cry, laugh and “talk out loud to all those charlatans who call themselves doctors”.

And I completely identified with her. I remember those 20 years myself where I went from doctor to doctor to doctor, enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful–all in the attempt to find out WHAT WAS WRONG WITH ME.

Today, after finding STTM, she exclaims: “the relief of finally being vindicated after all those years!”

She continued: “Most of the time they didn’t even have enough integrity to admit they didn’t know…they would just look at the paperwork and say,”well, the lab work looks fine.” Then would come the implication that it was all in my head.”

She spent hours and hours of online research (boy does that sound familiar) and her breakthrough after too many years of poor doctors came with a single old school family doctor who ordered the cortisol test. And finding the patient-to-patient STTM was the final victory.

I wish I had had something like STTM, once upon a time. But so be it. The kind of long term suffering I endured, as well as many others, is the reason STTM was compiled and created, and patiently sits there, waiting for each and all who are STILL in the same boat to find it.

She ended her email with “Thank you! Thank you! Thank you!” And all of us who have been there, and have finally found our sweet spot thanks to PATIENT WISDOM as outlined on STTM, say “You’re welcome”.

24 replies