• +Audience
• desiccated thyroid
• Janie's experience
• Related conditions due to hypo
• t4
• Thyroid treatment

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.

It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

1. Heavy-handed control over your medication: You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
2. Ignorance about adrenal fatigue and treatment: You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
3. Dismissing the Ferritin test: You want to know what your ferritin is, but the doctor’s nurse underscores that they’ve already checked your iron levels, so there’s no need for more testing.
4. Dismissing you: You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
5. RT3 huh? You have strong suspicions that your Reverse T3 is too high thanks to adrenal fatigue, low ferritin, undiagnosed gluten issues, or other reasons, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet any or all of the above and below occurs with him/her or his “trained” associates.
7. Continued worship of the TSH lab test:  Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match.
8. Pharmaceutical addicts: You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understand that these are ALL side effects of poor treatment or undiscovered issues.
9. The country you live in: The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail.
10. Reformulations and Big Pharma apathy: Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose , causing a massive return of symptoms in many, sooner or later. RLC also reformulated their Naturethroid, and though some patients still do well on it, others do miserably, and we are left wondering WHAT to take. (Thank God for Erfa’s Canadian “Thyroid”, but will we be able to continue with this fabulous desiccated thyroid product?)

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so. I refuse to condemn them for exactly the reasons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you consider all the above.

All-in-all, we still have  a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.

(Monday April 5th Postscript to my blog post below: One of the patients interviewed by this reporter states the following: The report left the impression that we (desiccated thyroid users) are a teeny little group on the fringes of medicine, rather than a ground swell of well researched patients trying to improve our health (and every aspect of our lives) with rational, common sense alternatives. We are still voices crying in the wilderness, and ignored by the mainstream medical professionals. C’est la vie.)

Finally.

After years of near-complete silence by the mass media about the profound 60-year medical scandal of T4-only treatment like Synthroid, as well as lives changed due to natural desiccated thyroid, we have some progress.

A few weeks ago, I was contacted by health reporter Pauline Dakin of CBC (Canadian Broadcasting Corporation) Radio. She was preparing a report on thyroid treatment and desiccated thyroid, asking for names of Canadian patients and doctors who might speak of their own experiences. Among others, I got her in touch with Canadian thyroid patient Theresa Roberts, who has reminded me of this report.

And, Pauline Dakin’s report on desiccated thyroid will be presented TODAY, Easter Sunday, on CBC Radio One on “The World This Weekend” at 6:00 pm Eastern Time (5 pm Central, 4 pm Mountain and 3 pm Pacific). It’s a comprehensive 1/2 hour news program that airs nationally on weekend evenings and takes an in-depth look at current issues.

And even if you aren’t in Canada, you can listen to this program on CBC Radio One live at http://www.cbc.ca/worldthisweekend/ , or you can download the podcast (which may require free subscription).

HIGH FIVE to Pauline Dakin and the Canadian Broadcasting Corporation.

The 60-year use of T4-only medications like Synthroid, Levoxyl, Eltroxin and other brands has NOT worked for hundreds of millions worldwide, resulting in each patient’s amount and degree of lingering symptoms of hypothyroidism as well as the added misery of adrenal fatigue.

We have also been bandaided with anti-depressants, statins, pain meds, high blood pressure meds and more, all the while being told by our clueless doctors that we are schizophrenically ‘”normal” because the also-lousy TSH test says so.

Or, like my own mother, we have been subjected to Electric Shock Therapy because of depression caused by T4 meds and their inadequate treatment.  You can read about my mother here.

Stop the Thyroid Madness™!

P.S. Sign up for the “newsletter notification” of this blog–see right below the links to the left. Or you can use your RSS feed page.

(Side note: I feel so stupid. If you have signed up to receive notification of STTM’s blog posts (see signup on left below links), I have inadvertently failed to check a particular box for the emails to go out. I won’t make that mistake again. See the two posts below, which you weren’t notified about when they came out. )

I recently chatted with Sheila Turner, a thyroid patient advocate in the UK who runs the website Thyroid Patient Advocacy–United Kingdom.

And she has become absolutely disgusted at what is happening in the UK–disgusted enough to stop being polite and to ask direct and pointed questions on the home page of her TPA-UK website.

What spurred her tough new stand?  Says Sheila, “The RCP (Royal College of Physicians), BTA (British Thyroid Association) et al are doing everything they can to boycott all T3 containing products and their latest ‘Statement’ on the diagnosis and management of primary hypothyroidism is banning general practitioners from prescribing T3 at all.“.

And, explains Sheila, it’s gotten to the point where most any General Practitioner is completely afraid to prescribe T3 or any T3-containing product like natural desiccated thyroid for fear of being reported. “The ONLY people allowed to recommend that T3 be prescribed are “accredited endocrinologists”, says Sheila. (And how many patients have experienced how close minded Endo’s can be towards desiccated thyroid.)

And here are her brilliant, in-your-face questions with links, which are pertinent for ALL of us, whether in the UK or not:

1. WHY do the GMC, the RCP, the BTA et al. deliberately choose to ignore the scientific evidence that has been available for over 40 years ?
2. WHY are medical associations ignoring the 13% failure rate of T4-only therapy for the past 50 years? Why are patient’s complaints dismissed?
3. WHY has there been no correction to the RCP statement when there are patients who are counterexamples to the validity of T4-only therapy?
4. WHY is the confusion of two definitions for ‘hypothyroidism allowed to continue?
5. WHY are guideline authorship and concise guidance to good practice protocols ignored?
6. WHY are individual symptoms of hypothyroidism stated to be “non-specific” when Baisier found groups of these symptoms may be quite specific?
7. WHAT further investigations for non-thyroidal causes are recommended as relevant to the symptoms of hypothyroidism when pituitary and thyroid GLAND function tests are biochemically normal – Levels of fT3, rT3 and adrenal levels?
8. WHY are the studies by Das (2007) and Lewis (2008), which found that patients could be successfully treated with thyroid extract being ignored?
9. WHY is medicine ignoring false negative test results?
10. WHY do doctors refuse to explain and/or justify their decisions, thereby withholding information necessary for valid consent to treatment?
11. WHY does the NHS refuse to take steps to protect human rights when sufferers are put at risk through a disregard of the demand that patients should be treated with fairness, respect, equality, dignity and autonomy?
12. WHY are laboratory discrepancies in serum testing being ignored?

I appreciate the tough stand Sheila is taking. We HAVE to take a strong stand in light of the worldwide ignorance about 60 years of patient suffering on T4 meds like Synthroid, Eltroxin et al, about better treatment with natural desiccated thyroid and T3 products, and about the lousy TSH lab test!

In fact, in light of practically NO mass media attention to this huge worldwide thyroid treatment scandal, we have to shout it wherever we can and hope that some WISE reporter or media personality gets this and will shine a media light at the idiocy going on out there towards thyroid patients. Stop the Thyroid Madness!™

And now that I have your attention, here’s the answer straight from the mouth of Kenny Soejoto, Chief Operating Officer of the only North American maker of desiccated porcine natural thyroid powder (American Laboratories): a firm NO!

“We have amply supply and so do the distributors for compounding pharmacists”, underscores Soejoto when I chatted with him today.

He also added in response to the recent shortages:  “We didn’t spare an expense to push it along”.  i.e  “American Laboratories have caught up with all backorders, with the exception of one major company which has tight specifications, but they should be caught up by the first quarter in 2010″, explained Soejoto.

So what about specific rumors we keep hearing??

1. My compounding pharmacy said they weren’t able to get it. Kenny explained that a small compounding pharmacy often can’t afford the minimum order that American Laboratories requires, nor does the smaller pharmacy want that much, which is an 110 lb drum of powder.  So, says Soejoto, they need to contact their distributor, who is the middle man between a compounding pharmacy and American Laboratories. “The distributor for compounding pharmacies, “ explained Kenny, “will buy the larger amounts, make smaller packets, and then sell those to the compounding pharmacies”.
2. American Laboratories can’t be the only North American makers of powdered thyroid because my compounder told me a different name. The different name you heard is the middle man mentioned above–a distributor for the thyroid powder to the compounding pharmacy. But that distributor got their supply from American Laboratories.
3. My regular pharmacy said there is a supply issue for the brand I wanted. Again, Kenny explains there is no supply issue–they have plenty. Any pharmaceutical company that makes desiccated thyroid has to have ongoing credit worthiness and documentation before AI can sell to them. Also, we are simply experiencing continued demand being greater than supply, and it can take time to catch up.  i.e. there may be more to the story than you hear under any comment about a supply issue problem.

In conclusion, Kenny Soejoto said they simply got into trouble from the growth of interest in desiccated thyroid the past few years, and they are much better prepared. Even Europe is inquiring more about it, he said. And my response to him?? Get ready, because you are doing millions of potential thyroid patients a HUGE favor by making it,  and we’re going to continue to spread the world about natural desiccated thyroid. 

Check out posts below about other important issues, including more from Erfa, plus the problem of cellulose in compounded and regular desiccated thyroid.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. A card will be included, and the book will be in an envelope with a red bow!! Save money the more you buy!