tsh tags

Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4″ simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

Louis Neipris, M.D., a staff writer who has written many fine articles for myOptumHealth.com, recently wrote one article titled Adrenal Fatigue: Is it for real? It appeared on Upper Michigan News, TV 6 website on July 16th and is making the rounds on other sites. His answer to his own question?  “Not really”. He adds  “it’s not an accepted medical diagnosis.”

Oops.

Dr. Neipris, thyroid patients all over the world beg to differ, as do a growing body of colleagues in your profession. Adrenal fatigue, aka low cortisol, has been discovered on the back of a huge body of thyroid patients, wearing them down with  irritability, anxiety, shakiness, feeling dizzy or lightheadedness, sleep issues, sweating, salt craving, nausea in the face of stress, and a host of other symptoms unique to each individual with adrenal fatigue. My personal observation, as a thyroid patient activist, is that up to 50% of millions of thyroid patients all over the world, may have adrenal fatigue, or at the very least, a sluggish feedback loop.

Even worse, the widespread occurrence of adrenal fatigue, especially in thyroid patients, has caused problems when they try raising a far superior thyroid medication called desiccated thyroid. Because cortisol is needed to facilitate the move of thyroid hormones from the blood to the cells, the direct T3 in desiccated thyroid pools in the blood, causing low-cortisol-induced hyper symptoms like a pounding heartrate and irritability. The first-pass treatment then has to start with hydrocortisone like prescription Cortef from their doctors.

Why have such a large body of thyroid patients found themselves with adrenal fatigue and its low cortisol? It’s clear. The TSH lab test sucks, giving one a “normal” reading for years in spite of obvious clinical presentation of hypothyroid symptoms, and pushing one’s adrenals into overdrive with high cortisol and adrenaline to keep the patient going, and ultimately leading to adrenal fatigue.  On page 65 of the Stop the Thyroid Madness book, you’ll read about a 44 year old woman who went 15 years with a “normal” TSH result, in spite of obvious clinical presentation of hypothyroidism, and which led to her own low cortisol. This is not uncommon.

Second, the risk of adrenal fatigue is high due to the inadequate treatment of T4 medications like Synthroid, Levoxyl, levothyroxine, Eltroxin and other T4-only meds. They all leave patients with their own brand and intensity of lingering symptoms of a poor treatment, forcing the adrenals to kick in too long for many.

Even William Mck. Jeffries MD., who wrote the medical classic Safe Uses of Cortisol around 1984, understood the preponderance of adrenal fatigue even without the diagnosis of Addison’s, and the need for physiologic doses of cortisol treatment, or the amount needed by each individual.  And he would certainly be amazed by the explosion of adrenal fatigue that has occurred since then in thyroid patients thanks to the lousy TSH and synthetic T4-only ‘affaire de coeur’ with doctors.

Adrenal fatigue may not be an “accepted diagnosis” by many.  But medical professionals and doctors who think it’s not real or an acceptable diagnosis will have to face a huge body of patients globally who DO have real live adrenal fatigue. And adrenally-fatigued patients can get realllllly hostile and angry because of low cortisol, and be very impatient when you deny their reality.  (You’re going to see a lot of comments to this post which I highly suggest reading.)

P.S. Even desiccated thyroid like Naturethroid and the pre-reformulated Armour are not considered to be the standard of practice for treating hypothyroidism, yet thyroid patients all over the world are having lives CHANGED thanks to it.

***Want to be informed of my blog posts? Curious what’s on my mind? Use the Notifications to the left and right below the links.

***Read below why thyroid patients are not happy with Armour and switching to brand names like Naturethroid.

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.

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.

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I’ve been sitting back silently, reading all the backlash that started with Newsweek’s Best Life or Risky Advice May 30th article, a critical analysis of Oprah’s multiple program topics of Wish Away Cancer! Get A Lunchtime Face-Lift! Eradicate Autism! Turn Back The Clock! Thin Your Thighs! Cure Menopause! Harness Positive Energy! Erase Wrinkles! Banish Obesity! Live Your Best Life Ever!

And granted, some of the criticism seems justified.

Even thyroid patients winced and squirmed when Oprah stated that a month long Hawaiian vacation and eating fresh foods with soy milk were a great way to treat her thyroid condition.  Uh huh.   Patients equally gagged at her support of Dr. Christiane Northrup who made the the nutty insensitive comment that our thyroid problems were due to an “energy blockage in the throat region, the result of a lifetime of ‘swallowing’ words one is aching to say.”

But the ensuing array of blog posts and articles following in the footsteps of the Newsweek criticism of Oprah has presented quite an irony for thyroid patients whose lives have been changed thanks to natural desiccated thyroid. Adjectives and/or descriptions of Oprah in these blogs and articles have included:

* dangerous

* peddling alternative treatments that are ineffective

* failing to present scientific evidence

* failing to listen to bona fide, medical school trained,  medical professionals

* being too gullible about the so-called wisdom and knowledge of certain patients (ala Suzanne Somers)

* failing to give more attention to science-based, status quo, mainstream medicine

Any of the above sound familiar? Yup, it sure does.

How many times have thyroid patients been told that desiccated thyroid like Armour or Naturethroid was dangerous, or raising it by symptoms rather than the TSH was dangerous. Or it’s dangerous to use because you’ll get heart problems and osteroporosis. Yet thyroid patients on desiccated thyroid have their lives CHANGED, with stronger hearts and increased bone density.

How many patients have had their doctors tell them that desiccated was ineffective as an alternative out-dated product, yet these same patients started to LIVE again with relief from old symptoms from this ineffective “alternative” medication that grandma once used.

How many articles by medical professionals are there who claim that there’s no scientific evidence to prove that desiccated thyroid is effective, in spite of CLEAR observation and reports of a huge and growing body of thyroid patients and certain doctors around the world about relief from depression, lowered cholesterol, better blood pressure, weight maintenance, hair regrowth, better stamina, less sickness and a myriad of other improvements!

How many bona fide, medical school trained,  medical professionals told us ad nauseum that our symptoms were not thyroid related (when they were), that we are “normal” because the TSH lab test says so (when we were far from it), that desiccated thyroid is outdated, unreliable, ineffective, and a ten ton load of other ridiculous comments from bona fide, medical school trained,  medical professionals.

How many doctors have told patients that they should NOT listen to other patients on the internet or Stop the Thyroid Madness because patients can’t possibly have any wisdom or know what they are talking about. Yet, lo and behold, it’s been patients and what they have learned who have started a wide-reaching revolution for better thyroid treatment that works, and a growing body of doctors are listening!

And how many times has science-based, status quo, mainstream medicine completely ruined the lives of thyroid patients because many doctors are too lazy to dare question or think outside the pharmaceutical, medical school box.

Yup, Oprah has made some blunders, gaffes and misjudgments as outlined in the Newsweek article.  She has gushed too quickly when Northrup opens her mouth or Oz walks in with his surgical garb.  But isn’t it a bit ironic that some of the criticism by others towards Oprah are the same blunders, gaffes and misjudgments which most any thyroid patient has heard about their use of desiccated thyroid, and which has all been COMPLETELY wrong.

Bottom line, for every mistake and misjudgment Oprah has made–and CLEARLY she has done so in her understanding of thyroid treatment—she just might be opening the doors to medical truth, somewhere, somehow, between it all.

Janie