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Category: Thyroid treatment

A continuing MEDICAL SCANDAL which is just too close to home and I grieve. WAKE UP DOCTORS!!

Tonight was a beautiful night to do my aerobic walking. It had poured this afternoon for 30 minutes, so the early evening air was slightly cool and very clean.

And on the last leg of my journey, I stopped and said to Carlin as she was walking out of her front door “Where you have been lately? I haven’t seen you out walking with your husband.”

Carlin and her husband Clint are probably in their late 70’s–both vibrant individuals and frequent walkers in the same area.

“Well”, she said wistfully as she glanced down the street I had just walked, “I have to go in Monday for a Pacemaker.”

Turns out she has fibrillations and other heart issues, and even walking from her bedroom to her living room can exhaust her. I told her how well my mother-in-law has done with her pacemaker. She told me she’d be in the hospital for at least 3-4 days for the surgery and observation.

And as we were chatting over the low white fence, I couldn’t help but notice the scar on her neck–the same scar my own mother had from the removal of her thyroid years ago. And the rest of Carlin’s story, and the reality of her story, made me want to punch the nearest electrical pole in disgust.

Carlin’s thyroid was removed over 40 years ago. She remembers being on “2 grains of something”–clearly it was desiccated thyroid. And she says she felt really good. But she wasn’t on it long, as her doctor removed it and put her levothyroxine over 30 years ago. You know, that “new and modern” T4-only CRAP which doctors fell for like the blind following the blind beginning in the 1960’s until today. (The story behind the introduction of T4 onto patients in the early 1960’s is in Chapter One of the STTM book)

So I knew. Her heart troubles could be one of the many side effects of the inferior treatment of T4-only medications (which also include Synthroid, Levoxyl, Eltroxin, Oroxine…all of them). My own mother suffered the same fate while on Synthroid her entire life. And patients chat about this all the time on thyroid groups–heart issues while on T4.

I started probing. She has had issues with high blood pressure. Another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She has had issues with depression–another typical side effect of the crap T4-only medication, and which is removed with desiccated thyroid. She talked bitterly about the slew of medications she’s had to be on for years to counter all her problems, and which had given her bad side effects.

And the next worse thing she told me? She had acid reflux so bad a few years ago that they did surgery on her stomach. She had surgery for a condition which is VERY common with thyroid patients who are on T4 meds–low stomach acid from a lower metabolism, which causes acid reflux. i.e. a symptom of continued hypothyroidism which is CORRECTED when on desiccated thyroid.

It was hard to contain myself. Here was this vibrant, life-loving, intelligent woman who has been on T4-only for over 30 years and has endured health problems, surgeries, side effects from all sorts of money-grubbing pharmaceutical pills, and now, has to go in Monday for a pacemaker. And in all probability, most of what she has gone though could have been prevented if some doctor had been WISE enough to keep this woman on desiccated thyroid.

I am livid and sick to my stomach.

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  • Are you chewing up your Armour or Naturethroid? It will make the treatment far better, as it will release the desiccated thyroid from the excess cellulose. If you are on compounded, you need to tell the pharmacist to stop using cellulose as a filler. On Erfa? You can do it sublingually.
  • If you are reading this right on STTM’s blog, and would like to be notified of each blog post, just sign up to the left and under the links.
  • Have you done labs and found yourself with high RT3? Get off Selenium for the time being, as it can help convert T4 to the RT3 along with the other reasons you make too much.
  • Want to spread the word about far better treatment? T-shirts and bumper stickers are here.
9 replies

FDA’s Safe Use Initiative–think they will listen to our cries about T4-only meds?

EarplugsAs a thyroid patient who was profoundly harmed by the use of Synthroid and Levoxyl in the treatment of my hypothyroidism, and as an activist who sees this same harmful truth with potentially millions of other patients, I find this recent news interesting.

But you gotta wonder if they will be wearing noise reduction headsets and ear plugs…or not…when it comes to the scandal of synthetic T4-only medications. Will they?

Just today, the U.S. Department of Health and Human Services and the Food and Drug Administration (FDA) announced the Safe Use Initiative, “a program aimed at reducing the likelihood of preventable harm from medication use”.

Statements I gleaned from this initiative include:

1. Today, tens of millions of people in the United States depend on prescription and over”the”counter (OTC) medications to sustain their health–as many as 3 billion prescriptions are written annually. Too many people, however, suffer unnecessary injuries, even death, as a result of preventable medication errors or misuse.

2. Although FDA and many other stakeholders have been working to improve how the healthcare system manages medication risks in the United States, it is widely recognized that more needs to be done to protect the public from preventable harm from medication use.

3. Medications offer great benefit, but they come with risks. Whenever medications are not used optimally, risks of harm can increase significantly.

4. FDA proposes to identify, using a transparent and collaborative process, specific candidate cases (e.g., drugs, drug classes, and/or therapeutic situations) that are associated with significant amounts of preventable harm.

This initiative is actually far broader than what I gleaned above, and also involves self-abuse, exposure of dangerous medications to children, dire side effects, and more. Five areas are also specifically targeted: Consumer medication information (CMI), Medication dosing devices, Acetaminophen toxicity, Alcohol-based surgical preps, and Medications in vials. You can read more in the fact sheet.

But if the FDA is going to do their job with this initiative, or do their job overall, you have to wonder if they will listen to and include the problems associated with being treated with a T4-only medication as experienced by millions of patients worldwide. Continuing symptoms of hypothyroidism while on this inadequate treatment is widespread and damaging for many, causing hands reaching deep in pockets to pay for numerous doctors appointments, besides antidepressants, anti-anxiety meds, blood pressure meds, statins, cortisol meds for adrenal fatigue, and other medications which we would have never needed, and would have been preventable, if we had been on natural desiccated thyroid like Naturethroid or Westhroid in the first place.

Many patients on thyroxine, T4-only medications will also report actual hospital visits due to the side effects of a poor treatment.

In other words, thyroxine aka levothyroxine aka T4 treatment has been an unsafe and harmful treatment, causing millions to suffer unnecessary injuries and side effects for over 50 years of its useless and popular use. It fits the Safe Use Initiative. Or at the very least, it calls for the FDA to listen to patient experience with this lousy choice to treat hypothyroidism.

Listen to us, FDA. Listen and be wise.

P.S. See the blog post below about a genetic reason why so many do lousy on T4.

4 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

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.

1 reply

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.

3 replies