Skip to content

An open letter to Mary Shomon

shakinghands2Hi Mary.

You know, I really don’t think this is a time for us to be separate, Mary, in our advocacies. Seven years ago, I went a different direction that I felt was important, and still strongly do, as an activist. That will continue because I believe in what I am doing. You don’t have to agree with my stance, but we can make the choice to work together in what is common between us–supporting the use of desiccated thyroid and helping others with the shortage.

As I see it, Mary, we each have a wonderful legacy. You will always be appreciated for your work as much as many appreciate my work. That will never be taken away.

So why not be united in this fight, Mary, working together to support patients during this shortage. Thyroid patients need us.

Janie

Yes, Jessica Terry, it’s weird to have to self-diagnose, but thyroid patients have had to do the same thing!

Jessica Terry is an 18 year old student at Washington State high school in the Bay Area who had years of problems which doctors couldn’t figure out: vomiting, diarrhea, weight loss and stomach pains. Doctors said she had irritable bowel syndrome or colitis, and said her intestinal tissue was just fine according to slides.

Yet, she just knew that wasn’t correct.

So she took some of her own intestinal tissue to her Biomedical Problems class, and voila…she diagnosed her own problem: granuloma, and specifically, Crohn’s disease, an inflammation of her intestines.

Sound familiar??

Yup, thyroid patients have had to do the exact same thing–self-diagnose– for almost ten years because of continuing symptoms of hypothyroidism which doctors have routinely dismissed, pooh-poohed or blamed on something else. It’s all been a horrific, wide-reaching and damaging 50 year medical scandal by the medical establishment upon thyroid patients.

And why has this calamity occurred? Because doctors have always been hoodwinked by their medical school training, continuing education and Big-Pharma-financed-research in believing that T4-only thyroxine medications like Synthroid, Levoxyl, Levothyroxine, Eltroxin, et. al. were from God Almighty, and the TSH lab test was just as holy.

And thanks to thyroid patients around the world who had the gall to use the internet and join patient groups, we figured out it’s all because those medications and labwork have not worked, and what has worked. Additionally, it was patients who discovered they had adrenal fatigue and/or low ferritin and how to treat it, and patients who have succeeded in beginning a wave of change around the world in the treatment and diagnosis of hypothyroidism (except for the UK, who has gone backwards to the dark ages).

You can read Jessica’s story first reported in the Sammamish Reporter, and only recently reported to a wider audience in the Bay Area News newspaper. She also spoke to a CNN affiliate.

Thanks to Kem on NTH for informing me of this news.

P.S. Do ya think that any newspapers or major news outlets like CNN are going to finally get what a huge story thyroid patients have given them?? We’re still waiting……

*Want to be informed of Janie’s blog posts? Curious what’s on her mind? Just use the Notification link to the bottom left of the links.

Thyroid Patients sending a big KISS to this British Doctor!

kiss2

I recently discovered a very humorous and appropo medical blog on the net, written by a United Kingdom General Practitioner who wisely stays incognito. His blog is called The Jobbing Doctor.

And his most recent and humorously brilliant post is titled Hairy legs are better than blood tests! He describes his occasional confusion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The textbooks teach that the level of circulating thyroid hormones (which are called T3 and T4) are inversely related to the Thyroid Stimulating Hormone (TSH). If your T3 and T4 are low, your TSH will be high: this suggests an underactive thyroid gland. If the T3 and T4 are high and the TSH is low, then you have an overactive thyroid gland. That’s easy, huh!”

But his confusion sprang forth when a patient’s labs showed “a highish TSH, T4, and a normal T3.” Yet apparently her symptoms didn’t imply there was any problem, so he chose to do nothing as far as changing her treatment.

A month later at her next appointment, this patient expressed her approval that he didn’t change anything…because her leg hair and eyebrows were coming back.

And his conclusion? “Pah! Who needs blood tests!”

Jobbing Doctor, you are discovering what thyroid patients have been learning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT labwork. Sure, we love our labwork. They can give clues to areas where our bodies are screaming for help. But they definitely do NOT tell the whole story.

Look at the ignoramus TSH lab test. Countless patients have walked into their doctors offices with clear and obvious hypothyroid symptoms–and desperate for a diagnosis–yet the ink spot on the office piece of paper called the TSH lab result proclaims they are “normal”. And that dubious “normal” diagnosis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thyroid medication, patients will have a lamebrain “normal” TSH lab result, yet will continue to have their own brand and degree of continuing hypothyroid symptoms which the clueless doctor dismisses as an hysteric female interpretation, motherhood, stress, a need for psychological help….or just “something else”. Uh huh.

In fact, Jobber Doctor, patients have learned that when they are optimal (on desiccated thyroid), along with optimal ferritin and cortisol), they will generally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symptoms of hyperthyroidism. That is general, and there can be some exceptions, but overall, it has spoken volumes to patients on how inadequate thyroid lab tests can be. i.e. being in the “normal” range—anywhere in the normal range–can be mean squat.

Thanks for a great post, UK Jobber Doc. And P.S. Desiccated thyroid is an even better treatment than thyroxine. 🙂

*Want to be informed of these blog posts? Curious what’s on my mind? Just use the Notifications at the bottom left of the links.

I have a dream

As Susan Boyle of the UK had a dream which came true, I too wish from the deepest place in my heart that someday soon, SOMEONE from the mass media will FINALLY get smart and do a wide-reaching story for the hundreds of millions who are still on T4 meds like Sythroid, Levoxyl, Levothyroxine, Eltroxin, Oroxine…and who have depression or a myriad of other lingering symptoms of a sucky, laughable and shameful treatment. This video inspires me today just as it did a few weeks ago. Enjoy and dream with me. http://www.youtube.com/watch?v=bFzS0wgwyW4&annotation_id=annotation_179773&feature=iv 🙂

Janie

*Want to be informed of my blog posts? Curious what’s on my mind? Just use the Notification on the left at the bottom of the links.

*See below on how being on T4 meds can affect your liver. And below that–why I’m handing my promise ring back to Forest Pharmaceuticals.

Multiple sclerosis, Dysautonomia, you name it…ALL made worse from hypothyroidism or being on a T4 med

Screen Shot 2015-08-04 at 2.30.58 PM(This post has been updated to the current day and time. Enjoy!)

Before my thyroid disease of hypothyroidism was discovered, I had horrific and debilitating consequences from exercise or any activity. You can read about it in even more detail in the Introduction of the patient-to-patient Stop the Thyroid Madness book.

When my so-called “borderline hypothyroid” was discovered by age 30, I thought whoo-hooo, I’ll finally get rid of this strange nightmare whenever I tried to do ANYTHING. I was put on Synthroid and my anticipation for a better life was profound.

But my hope was dashed.

Not only did my body continue to overreact to activity, it got much worse over time. Horribly worse. I got to where I couldn’t even grocery shop without paying horrible prices in fatigue and other miserable symptoms.

Nearly twenty years after I had started on a T4-only medication, and had even raised it. I was told by one doctor after another that my problem was not my thyroid. I was forced to start the process of applying for social security disability–a low, low time for me.

But they were all dead wrong.

Sure, turns out I have a form of Dysautonomia, a malfunction and overreaction of my autonomic nervous system, causing my body to far overreact to activity or stress. But remaining hypothyroid, as so many of us do on t4-only medications, had made it far, far worse. And I proved it. When I switched to natural desiccated thyroid in 2002 and raised it according to what patients have learned, a miracle occurred. My severe autonomic reactions made an almost complete turnaround.

And my experience of change or improvement when it comes to other diseases or conditions has been shared by others.

Last week, I received an email from a man whose brother has MS–Multiple Sclerosis. And though natural desiccated thyroid has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is quite impressive.

So I am left wondering: what other conditions or diseases, which are unique in themselves, are worsened being either undiagnosed or dosed the lousy TSH lab test range…or due to the inadequate treatment of Synthroid, Levoxyl, levothyroxine, Eltroxin, Tirosent and all other T4-only medications for all to many like myself? It’s awful to think about it.

JanieSignature SEIZE THE WISDOM

* Learn about the problems with T4-only right here.

* Join the STTM Facebook page for daily tips, information, and humor!

* Get the STTM books here, because you have to become informed in order to get well: www.laughinggrapepublishing.com