That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before.  As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed.  Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing.  That is contrary to making panicky negative predictions about desiccated thyroid,  rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets.  All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place!  And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity!  Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

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

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.

*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.

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.

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 worse over time.  Horribly worse.  Nearly twenty years after I had started on a T4-only medication, and was told by one doctor after another that my problem was not my thyroid, I was going to apply for social security disability.

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 stress. But remaining hypothyroid, as we all do on the sucky t4-only medications, had made it far worse. And I proved it. When I switched to Armour 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 Armour has not taken his MS away, it allowed him to move from this wheelchair to a walker! That is impressive.

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

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

“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.

But the elderly are also wide open targets of the scandal of  the use of the TSH test to diagnose hypothyroidism.

My father-in-law was stout, tall and healthy as an ox his entire life.  For the first eighty-eight years of his life, life was active and grand. Oh did I love him.

Yet as he was nearing ninety, fate became fickle. He became like a Rip Van Winkle,  sleeping more than being awake the final three years of his life.  He slept in the mornings, he slept after lunch, he slept before dinner, and he went to bed early.  And he seemed depressed.

Family concern (mine) prompted his doctor to test his TSH,  widely used by clueless doctors to ascertain thyroid function. The family doc proclaimed “Normal”

Sad. Because I had to watch him waste away in his fatigue until he died.

Hypothyroidism increases with age,  and many of our elderly fall victim to it. Using most any search engine on the net, you’ll find numerous articles on thyroid and the aged. But I suspect it’s an even greater problem that most any article can relay, since most of them are talking about the TSH and thyroxine. So the elderly, just like us,  suffer due to the infinitely lousy TSH lab, just like my dear father-in-law.

Read my latest article on OpEdNews titled “TSH: Thyroid Stimulating Hooey and the Loss of Wisdom” (Yup, the first part is the same title of Chapter 4 in the STTM book) : http://www.opednews.com/articles/TSH-Thyroid-Stimulating-H-by-Janie-Bowthorpe-090205-60.html

Have you noticed suspicious hypothyroid symptoms in your grandma or grandpa, or your own elderly patients? Tell your story by commenting on this blog post.

Today I baked a chocolate cake for my son’s birthday. It was excellent. Why? Because it was the result of several important ingredients. Leaving any of them out would have resulted in a cake less than great.

And your health and feel-goods as a thyroid/adrenal patient, including your ability to successfully get off HC,  is like my son’s cake: a combination of ingredients that you have to get right. Below are ten “ingredients” to investigate and find out which may not be right in you for good health and feel-goods.

1) The right amount of cortisol: Too little cortisol or too much cortisol has its consequences. Too little results in thyroid hormone still pooling, continued hypo symptoms, plus hyper in some. Too much can mean easy bruising, rising blood pressure, fluid retention, a round face, etc.  And both can increase anxiety, feeling poorly, etc.  Watch for symptoms and compare your daily averaged temperatures. Also, have you checked your aldosterone?

2) The right amount of desiccated thyroid: I have a friend who was stuck on 3 grains Armour out of habit. But she continued to have hypothyroid symptoms out of habit. I finally convinced her to talk to her doctor. Labs showed her free T3 was just a few points over mid-range, and having a free T3 towards the top seems to work better for most. So she did raise, and it finally did the trick.

3) Optimal B12 levels: Since hypothyroid patients can have digestive/absorption issues, B12 levels can be lower than optimal. Symptoms include fatigue, weakness, feeling faint, breathless, bruising, heart palps or others. Don’t take a chance. Get a B12 test. You want the result to be at the top of the range.

4) Plenty of Ferritin (storage iron): Low ferritin means you have no iron in storage to draw upon. And it also means you are probably anemic.  Additionally, low ferritin adversely affects the conversion of T4 to T3. Symptoms include fatigue, depression, weakness, achiness, breathlessness or others.  Have a ferritin test.  Optimal is 70-90.

5) Good digestion: Hypothyroid patients can have low hydrochloric (HCL) stomach acid levels. That not only contributes to acid reflux because of the overgrowth of bad bacteria, it means you don’t absorb nutrients well (including low B12 mentioned above). As a result, it’s crucial to give that acid back to yourself.  A tablespoon of Apple Cider Vinegar mixed in water and taken twice day helps many. Or try taking Betaine, which is HCL in pill form, or any other quality HCL or digestive product.

6) Recognition and treatment of Gluten intolerance: Some thyroid patients lack a particular digestive enzyme, intestinal glutaminase, that helps digest gluten in various food products. As a result, they don’t absorb nutrients well. Symptoms include bloating & gas, aches, stiffness, fatigue, burning or numbness in arms or legs, rashs or hives, worsened allergies & others. Your chance of have a gluten problem is higher if you have Hashimotos disease. If you suspect a possible problem, eliminate all gluten from your diet. Also consider having your doctor run a Celiac antibodies blood test.

7) Controlled EBV: At least 90% of adults have the Epstein Barr Virus (EBV) sitting dormant in their bodies. EBV is what causes mononucleosis, but you don’t have to have had mono to carry the virus.  Because hypothyroidism lowers your immune system, it’s not uncommon for thyroid patients to have activated EBV. I did, and my symptoms included extreme easy fatigue, ringing in my ears, achiness and some swelling of my lymph glands. Some may have a sore throat return and other symptoms.  Ask your doctor to test EBV. You’ll then need to ask about treatment options, which include beefing up your immune system.

8 ) Sex hormone balance: When your thyroid or adrenals get out of balance, your sex hormones can follow suit, from estrogen dominance to low testosterone.  When estrogen dominance occurs, you can feel depression, fatigue, and sore breasts.  Low testosterone can equal lower energy and mood. Ask your doctor to test all your sex hormones.

9) Taking plenty of supplements: There are a variety of good supplements everyone with thyroid or adrenal issues should take for good health. They include high potency B-vitamins, Vit. C (1000-3000 mg. or to tolerance), Selenium (around 200 mcg), minerals including magnesium, probiotics, Vitamin D (1000 iu), iodine, and others.  In addition to these, I also take CoQ10 (for heart and blood pressure health), and my favorite: a green powder which I stir in my orange juice.

10) Exercise: If you are a couch potato, you’re going to feel like one. Instead, do what it takes to get moving, which promotes all sorts of good health. If you have adrenal fatigue, keep it very light and easy.  If you just have hypothyroidism, get out and walk.

P.S. My chocolate cake: I think cake mixes are just as good as homemade. I use Devils Food Cake. But the icing is ALWAYS homemade: cream one stick butter, add about 4 cups powdered sugar, 1/2 cup cocoa, then cream or half-n-half.  Shake some sea salt in. Add two tsp. vanilla.  Beat, beat.  Taste. Modify as needed. YUM.

STTM has created lab profiles in partnership with MyMedLab, a direct-to-consumer lab facility which has expanded to provide services to nearly the entire United States

This lab facility promotes the empowerment of patients in their own care, similar to STTM’s focus on educating the patient and expecting a partnership when you walk into the doctor’s office. Empowerment!

You will find a combination of both in-home collected tests (saliva cortisol) and those performed at LabCorp collection sites across the US.   Take a Peak: STTM Lab packages (be sure and click on the green What’s Included icon on the lower right. You get a lot!)