Skip to content

Tag: scandal

Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

24 replies

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.

4 replies

I met hundreds of millions of women today…in one woman

bunny Michelle, 40-or-50-something, came over to my house today to go over some paperwork. I hadn’t taken my Armour yet, and I said “Excuse me, I need to pop my thyroid meds under my tongue.”

“Oh, I take thyroid meds, too.  Synthroid” she explained as she was writing on the papers with her pencil.

Now when I hear something like that, being who I am, I’m like a bear in a china cabinet who suddenly smells honey.  So as not to overwhelm,  I casually say “Oh, I used be on Synthroid.” And after a long pause while we are going over the paperwork, I say “Did you know there’s a worldwide patient revolution going on against medications like Synthroid?”

At the point, she raises her head in curiosity.

I then stick my paw in the honey: “You and I and millions have been put on meds like Synthroid and then told we are “normal” because the TSH says so. But all of us have continuing symptoms of hypothyroidism.  It’s a lousy medication. “

And when I laid out what those continuing symptoms were, her eyes got as big as saucers and she was shaking her head up and down in recognition. “Depression, rising cholesterol and blood pressure, easy weight gain, fatigue, less stamina than others, dry hair and skin, feeling cold, etc”, I told her.

And the most profound aspect of Michelle? She lives her life like the Energizer Bunny, going and going and going. She told me she often doesn’t get home until 6 pm doing her job, and she clearly has a lot of professional responsibilities.

But does an active Michelle mean that Synthroid works and is just as good a thyroid treatment as desiccated thyroid? You know the answer. She revealed that she’s quite tired when she comes home, wishes she had more energy, and still has issues with her weight, even though she lost some when she got on Synthroid.

And reading between the lines, it was clear that Michelle is probably on an anti-depressant, a statin, and a blood pressure medication.  And…she clearly has an adrenal problem that’s only going to get worse. She has a terrible time falling asleep at night (high cortisol), and is very sensitive to light and noise (high or low cortisol).

Suddenly it dawned on me. I am sitting across hundreds of millions of women, and some men. I am listening to how millions live their lives–making a living, maintaining a home, loving their spouses and children, interacting with people.  But underneath it all, it’s not a pretty picture. They cope, and they cope again.  And they dish out their money for more medications to treat the very symptoms caused by an inferior medication. And as they age, they’ll pay each of their millions of prices, just as my mother did, and as I was headed.  Energizer bunnies with faulty batteries.

P.S. Barack Obama has a health care reform plan. Will it change the lives of those 50 million with thyroid disease in the US, or will it only continue this T4-only travesty and health care scandal?  Are we headed in the same insane direction as the UK when it comes to T4-only?  Express your opinion.

15 replies

Join the OPRAH WINFREY LETTER-WRITING CAMPAIGN

oprah-at-theoscars-in-2007-updated(This blog post was originally written in 2007, and informed thyroid patients at the time were disappointed in Oprah for not being informed or a good spokeswoman about the horrific way hypothyroid was being treated. Nothing changed. So we as patients just kept trodding along, chatting with each other.)

I have had many folks email me about their concern that Oprah is not only failing to get the message about her thyroid issue, but thyroid advocates and interviews are not sending the message about what information is needed out there…and the media has STILL not caught on to this HUGE treatment scandal of the use of T4-only meds and the TSH lab. So, by request, I have created a letter template that you can use to be part of a massive letter-writing campaign to Oprah.

Yes, I’m sure she’s very distracted by the heartsick tragedy of her Leadership Academy for Girls in South Africa, but it may also worsen her thyroid condition, as well as create a potential adrenal problem. So THIS is the TIME to make a MOUNTAIN in her mail room. Go here: www.stopthethyroidmadness.com/letter-to-oprah-winfrey/

Please note that you can also use the above template letter to email her, but if we can ALSO send REAL LIVE letters as outlined in the above page, that can make a HUGE VISUAL difference as to what we are trying to tell her.

9 replies