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This and that–an array of interesting info for your thyroid pleasure

I’ve been distracted the past week, having to do extensive research and traveling to find the perfect “new used car”.

Then I caught a cold from hell–rare for me.  I was taking zinc and Vit. C. But a good friend reminded me about Vit. D and it’s immune enhancing effect. OMG, I forgot about it!  So later last night, I took what I thought was 12,000 IU on the first night of being sicker than a dog.  They say to take 1000 mg per 10 lbs of weight. Turned out the gel caps were not 1000 IU each, as I thought, but 2000 IU each. So I ended up taking 22,000 IU.  lol. But the long and short of it is this: though I woke up this morning quite tired and weak, I’ve slowly gotten better all day!! My congestion has hugely improved.  Read this: http://pandemicsurvivor.wordpress.com/2009/11/28/eliminate-the-common-cold/

Love your green powder drink? Just a word of caution: much of what is in many of those powdered greens are goitrogens, which inhibit thyroid production, such as wheat grass, barley grass, broccoli, spinach,  cabbage, maca and spinach, plus much more. But that doesn’t mean you can’t use the green powder. You’ll just have to be sure to use it in moderation, and not consume too many other goitrogen foods each and every day. Or, raise your thyroid meds.

Dr. Peter Gott can give even better information to readers. I noticed that a column on the Tulsa website by Peter Gott, MD of the Newspaper Enterprise Association  could have given different information to a distressed reader who couldn’t find Armour anywhere.  He recommended to this reader, who already stated that Synthroid is not a well-handled treatment, to see if her physician could “alter the Synthroid dosage to find a level”  that could be tolerated.  Actually, there are far better options during this backordered time, which I have compiled here, and includes Erfa’s Thyroid and more.

Naturethroid is appearing in pharmacies! Yup, patients are reporting it! No, it’s not all pharmacies. But you might want to call and see if YOUR local pharmacy has it. Otherwise, it’s coming.  For options during the current natural desiccated thyroid shortages, go here. To see why we are where we are today, read this.

Is there research to prove having a free T3 in the upper quarter of the range when on desiccated thyroid?? A gal emailed me, wanting studies to show her doc. But unfortunately, the answer appears to be no. Instead, this is what patients all over thyroid groups discovered from their lab results when they were feeling fabulous again with no lingering symptoms.  So we simply spread the word. Patient experiences DO count for something.  P.S. Here’s an ongoing list of research that DOES prove some things patients KNOW first hand.  And by the way, when you have a high free T3 and continuing symptoms, time to do labs for ferritin and adrenal fatigue.

By using a code, you can save on labs from HealthcheckUSA. I was informed from HealthcheckUSA that many patients were forgetting to mention the discount code. So look again, and be sure and use it from the Recommended Labwork page.

Janie on radio shows, and a great guest for the upcoming Talkshoe Thyroid Patient Community Call. Can’t say much more, because it’s in the works. Watch for announcements soon.

A new way to be informed of these thyroid posts. The former Notifixious notifications went out of business. But we have a new and GOOD one, referring to the notification as a newletter, and you can sign up free and with no strings attached.  See on left below on the links. :)  Also, there are many more important posts right below this.

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Confessions of an Undercover Thyroid Advocate

The following guest blog post is written by Amy McMullen, who had undiagnosed & symptomatic hypothyroidism for 20 years due to the sole use of the TSH, resulting in multiple health problems. She is now treating per the guidelines on STTM including T3 for thyroid hormone resistance, adrenal support, and desiccated thyroid.

I found her story below as an undercover advocate fascinating,  and think Amy is caring and committed,  in spite of severe restrictions! Bless you, Amy.

I spend an inordinate amount of time these days contributing to a well-known online thyroid disorders forum I’ll call “Thyroid Health Forum” (not its real name).

It’s a tricky forum with draconian rules: they don’t allow you to post any links to resources, talk about where you get your online labs done, include quotes from studies, or post any names of thyroid advocates. You can’t use a username you’ve used on any other forums and you can’t mention using their personal messaging system.

I’ve received a few “infractions” from the ever-vigilant board “administrators” and “moderators” (never could color inside the lines, I guess) and have been warned to never, under any circumstances, use the words “Stop the Thyroid Madness” or any references to this website or book in my posts.

At more than one point I was ready to walk away and just give up on it.  How can you share your experiences when there were so many rules that seemed designed to inhibit a free flow of information, to the point of not being allowed to mention the title of a good book by name or type in the word Google?

But I would read the following posts submitted by desperate people and this would keep me coming back to try, somehow, to help:

  • “Hi, my doctor says my labs are all normal but I’ve got so many symptoms, I can hardly function…”
  • “My doctor says that free T3 and free T4 testing is not useful, that my TSH is normal and that unless my TSH is high he won’t order any antibody tests…”
  • “My doctor says that my TSH is too low and wants me to cut back on my thyroid hormones, but I know I will start feeling bad if I do this… Help!”
  • “I am taking Synthroid but I feel terrible and my hair is falling out and now my doc wants me to take an antidepressant…”

You see, I was in this very same boat for far too many years. About 20 years back I started noticing symptoms:  fatigue, depression, menstrual irregularities, and dizzy spells. I went to see my doc who did the usual TSH test and when it came back “normal”, prescribed antidepressants. The antidepressants did help, but my menstrual problems intensified and other symptoms increased until I finally underwent a hysterectomy for dysfunctional uterine bleeding. Shortly thereafter, I collapsed with heart irregularities and autonomic nervous system dysfunction in the fall of 2006.

I went to over 10 different specialists spending thousands of dollars for medical bills with no real answers–just a lot of shrugged shoulders and a fibromyalgia diagnosis.

It wasn’t until my mother was hospitalized and routine blood testing came back with a TSH of over 6 that I looked again at my own thyroid. My TSH was never above 3. I had one free T4 test done following my initial collapse but, again, all tests were flagged “normal” and thyroid was passed over once again.

But a search about TSH lab ranges led me to Mary Shomon’s About.com articles, and while she seemed to be stuck on the idea that 3 was an acceptable number for the top of range for TSH, based entirely on the American Association of Clinical Endocrinologists recommendations, I finally found the Stop the Thyroid Madness site and learned otherwise.

It was here that I learned about other testing like free T3, free T4, thyroid antibodies, vitamin and ferritin levels and, very importantly, that the TSH should be the LAST test done for diagnosing hypothyroidism instead of the ONLY test. I finally caught on to how the medical establishment has failed miserably to adequately diagnose and treat hypothyroidism. I felt both incredibly empowered and very, very angry.

I quickly delved into the thyroid forums to share what I’d learned and to learn from others. The first forum I found was the aforementioned  “Thyroid Health Forum”, and since this is one of the best-known, it is where many of the newbies, like me, find themselves. There were both natural and synthetic hormone proponents on the board and the advice ranged from very good to quite bad. I soon found there were better forums like Realthyroidhelp and the natural thyroid hormone Yahoo groups that had really smart people who were happy to share resources and information that was truly useful. I spent a lot of time on these and learned a great deal.

But for some reason I couldn’t seem to leave the “Thyroid Health Forum”. The people who stumbled on there seemed so lost and I felt compelled to impart what I had learned to them. I would offer alternatives to the synthetics and explain why natural desiccated thyroid (NDT) was a superior treatment option and, more importantly, that they did have an option for their treatment, despite what their doctor told them. I’d relay what I had learned from other boards about access to NDT during the shortages.

When I figured out I had adrenal fatigue and later thyroid hormone resistance as a result of being undiagnosed for so long, I started relaying information about these issues to the many who were having difficulties getting optimized on their hormone replacement therapy. I found it to be both rewarding and enormously educating for myself as I would spend time researching questions that were asked about supplements, lab tests, and studies. I was not allowed to post links so had to summarize things I had learned and this taught me even more. The main messages I pushed were (and are):  get the right labs done, learn how to interpret them correctly, be your own advocate, know your treatment options, and don’t implicitly trust doctors.

I will continue to contribute what I’ve learned to the “Thyroid Health Forum”. So far I’ve managed to fly under the radar and play, however grudgingly, by their rules. I figure if I can get just one or two people to question the present thyroid clinical guidelines, as written by our friends at big pharma, I’ll be more than satisfied. I actually believe that by getting good information out there to as many sufferers as possible, we may create a groundswell of people who will no longer accept being dismissed as depressed complainers by their healthcare providers. And this is one more way we can help enact real change to the currently abysmal medical practice of thyroid diagnosis and treatment. Well worth it in my book!

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Latest news from RLC: Shipments of Naturethroid are beginning Monday, January 4th and the first two weeks with backorders going out ASAP.  Medco should have some by the end of January. Their Patient Information Line: Naturethroid/Westhroid: 877-600-4752

Thyroid  patient guest posts can be read about here: /writing-a-guest-blog-post-on-sttm/

Want to honor someone who has helped you?? See the blog post below and thank someone.

NOTE: if you were receiving email notifications about these posts,  the company doing them is out of business. Instead, use an RSS Feed.

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Oprah leaves her show behind in 2011, and also leaves millions of thyroid patients in the dust

opraharmsupThe news this morning about Oprah made me pause.

Yes, it’s being announced today that there will be no more Oprah Winfrey Show on CBS after Fall of next year.  She’s saying goodbye. And the rumor is that she will move her talk show to The Oprah Winfrey Network, which replaces the Discovery Health Channel. We’ll see when she formally announces it today on her show.

But the change sure does shine a bright spotlight on a colossal and complete failure by Oprah and The Oprah Winfrey Show for hundreds of millions of thyroid patients. Though she had her own bout with thyroid disease (and may still be dealing with it when you consider her weight issues), we all winced a year ago when she stated that a month long Hawaiian vacation and eating fresh foods with soy milk (a goitrogen) were a great way to treat her thyroid condition. Yikes.   We equally squirmed in our seats when Dr. Christiane Northrup made the 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.” Double yikes.

And since then, we have watched nothing, zilch, zero from Oprah and The Opray Winfrey Show about a horrendous 55-year medical scandal of thyroid treatment that has negatively affected the lives of hundreds of millions of thyroid patients worldwide. T4-only meds like Synthroid, the darling medication of the medical community for hypothyroidism treatment, has left hundreds of millions sick.  The TSH lab test has equally sent us to hell.  Because we have been forced to live with continuing symptoms of hypothyroidism, we’ve endured much more testing and have been put on many other medications to bandaid our continuing symptoms. And a majority of us have had to deal with the additional burden of adrenal fatigue thanks to all the above.

It’s been hell, Oprah. But you never listened.  So for me personally, I could care less what you do now. You’ve let millions of us down.

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On a far better note:  Last night’s Thyroid Patient Community Call on Talkshoe was excellent. From thyroid/adrenal patient Valerie Taylor, who is absolutely one of the most knowledgeable patients in the world about adrenals and RT3, we gained good information how it raises its ugly head when you have high or low cortisol, low B12, low ferritin and other untreated issues, and how to treat it. You can go back to Talkshoe and listen to the broadcast, which was Episode 7.  See my blog post right below this. As far as future Talkshoe Community Calls: they will always be announced here first.

Below that, you’ll read how cellulose as a filler just may be a huge problem in natural desiccated thyroid meds. But we are also discovering that a good desiccated thyroid like Naturethroid, even with its cellulose, can seem even worse if we have undiscovered and untreated issues like low B12, low Vit. A, low ferritin, low Vit. D and other conditions common with hypothyroidism.  Make sure you have tested for these.

*HO HO HO! Have a STTM book sent to someone  you care about as a CHRISTMAS or HOLIDAY present. All the work is done for you!

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Reverse T3–do you have this problem in excess? Let’s talk!

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This blog post has been updated to the current day and time. Enjoy!

Most thyroid patients have heard about T4…the thyroid storage hormone, also called a pro-hormone. You’ll see it in literature as “thyroxine” or “l-thyroxine”–the latter as the name for a man-made T4.

And many know about T3…the active thyroid hormone which rids us of hypothyroid symptoms.

And as patients become more informed, they learn that the body not only converts T4 to T3 through what is called deodination, it also provides some of that T3 directly. That is an important distinction! The latter fact can be why thyroid patients report getting far better results with natural desiccated thyroid (NDT) like Naturethroid, NP Thyroid or other brands.

Patients might also learn that there are actually five thyroid hormones made in your body, which is also what’s found in NDT: T4, T3, T2, T1 and calcitonin.

Reverse T3

But in every individual, whether a thyroid patient or not, a thyroid can also convert T4 to the inactive RT3 (reverse T3).  RT3 is an inactive thyroid hormone, as compared to T3 as the active thyroid hormone. And converting to RT3 is a natural and necessary process, even if there are consequences.(1)  The body might convert T4 to RT3 as a way to clear out excess T4, or as a way to reduce your metabolic rate.  It can happen if you go through any of the following:

  • surgery
  • a major physical accident
  • certain heart problems
  • intense chronic stress
  • restrictive low carbohydrate diets (2)
  • chronic inflammation

When Reverse T3 is a problem

Unfortunately, many thyroid patients make far too much RT3, as well, and patients with their open-minded doctors have been making cutting edge discoveries about this fact.  Many patients have seen that their high levels of RT3 can be found with the following conditions:

  • high cortisol
  • low cortisol
  • low iron levels
  • possibly low B12
  • lyme disease
  • gluten intolerance or Celiac
  • other undiscovered and untreated underlying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is problem? That excess RT3 is making itself lazily comfortable on your thyroid cell receptor sites, preventing the active T3 thyroid hormone from doing its job on that same receptor to get you out of your hypothyroid state.  It becomes akin to a clogged up drain to your organs and cells. So you stay hypo and symptomatic, in spite of seemingly “normal” other labwork.

The solution

Informed patients discovered they needed to discover and treat all the reasons contributing to their body converting to excess RT3.

Want to read more? All the below is based on patient experiences and wisdom to share and work with your doctor:

For those with the revised Stop the Thyroid Madness book, there is also more good detail in Chapter 12 called T3 is the Star of the Show, page 155, to continue your education. This is all good information to take into your doctor’s office.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

(1) http://press.endocrine.org/doi/abs/10.1210/jcem-41-6-1043

(2) http://press.endocrine.org/doi/abs/10.1210/jcem-42-1-197

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Ten reasons you may still feel bad: health is like a chocolate cake

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(This post has been updated to the present date and time! Enjoy!)

I frequently bake chocolate cake for birthdays in my family. Of course, part of it is so I can lick the beaters and bowl. **blush** But in my family, we are chocolate lovers. So any cake I bake is THE BEST cake in world.

Why? Because of the combination and/or amounts of several important ingredients that make any cake “great”… by anyone. Leaving out any of those specific ingredients, or putting in too little or too much, could result in a cake less than great.

And your health and feel-goods as a thyroid patient are like a good cake: the combination of ingredients and amounts that you have to get right.

Below are ten healthy “ingredients” to investigate to make sure the “chocolate cake of your life” is great!

1) INGREDIENT: The right amount of thyroid hormone medication

One of the most common mistakes made by patients and their doctors is simply not raising high enough to find the right amount. I have a friend who was stuck on 3 grains of Natural Desiccated Thyroid out of habit. Now 3 grains might be right for some, but it wasn’t for her–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. That will also push the TSH very low…and without a problem. So she did raise, and it finally did the trick. She now had the perfect chocolate cake of health!

2) INGREDIENT: Optimal B12

Sammy felt like she was doing great on her thyroid meds, but something was off. She had occasionally weakness, a tingling in her fingers, fatigue, and sometimes walking problems. Turns out her B12 levels were not optimal, which can be common for those undiagnosed hypothyroid or on T4-only. She got a B12 test, learned where patients are optimal, and corrected it.

3) INGREDIENT: Optimal iron

Did you know that like most nutrients, being “in range” has nothing to do with anything?? It’s “where” you fall that counts. And thyroid patients who’ve been undiagnosed, undertreated due to being held hostage to the TSH, or treated with T4-only, tend to acquire inadequate levels of iron. Symptoms can include fatigue, depression, weakness, achiness, breathlessness or others.  Learn all about iron and where iron is optimal.

4) INGREDIENT:  The right amount of stomach acid via ACV or lemon juice

Hypothyroid patients can have low hydrochloric (HCL) stomach acid levels. That not only contributes to acid reflux (yes, reflux can be because of LOW iron), it means you don’t absorb nutrients well (including low B12 and iron mentioned above). As a result, it’s crucial to give that acid back to yourself.  A tablespoon of Apple Cider Vinegar or lemon juice 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.

5) INGREDIENT: Optimal levels of B-vitamins

Did you know that when you become healthier due to the right thyroid treatment, your demand for B-vitamins can increase? Yessiree. B-vitamins along with CoQ10, help drive the production of your internal cellular energy. Though a variety of foods give B-vitamins, patients will often supplement with a good whole food B-vitamin or one brand or kind of their choice.

6) INGREDIENT: Avoidance of gluten

Now, patient experiences have revealed that not everyone needs to remove gluten from their diet. But a very high percentage of Hashimoto’s patients (the autoimmune version of thyroid disease) find they do a great deal better if they do. Why? Gluten can raise one’s antibodies, as well as damage your stomach lining and intestines, thus reducing absorption of many key nutrients. If you have Celiac disease, removal of gluten is also important.

7) INGREDIENT: 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. That’s why many thyroid patients also treat their hormonal levels, if needed, to feel better.

8) INGREDIENT: Iodine plus other minerals

Turns out that not only are your thyroid hormones in need of iodine to even exist, patients have reported iodine supplementation to help them feel better. Women like using it to rid themselves of fibrocystic breast disease. We do recommend doing on Iodine Loading Test to first see if you need it, though. Most do, but some may not. Other minerals are important too, like magnesium, potassium, sodium and more.

9) INGREDIENT: A good doctor

Yes, we certainly know how hard it can be to find an informed and open-minded doctor. And because of that, some patients are forced to self-treat, and we don’t begrudge that choice at all. If you do want to find a better doctor, here’s a page to help you do so. It may not always be easy where you live, but can be possible.

10) INGREDIENT: Knowledge

This is where Stop the Thyroid Madness (STTM) comes into play. STTM is the flagship of patient experiences and wisdom, ready for you to absorb all its excellent information and regain your health and well-being again, besides help teach your doctor. There are now TWO STTM books to learn from, too.

P.S. My real chocolate cake: I think cake mixes are just as good as homemade. I use Devils Food Cake a lot, but have used all the varieties for fun. 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 in a liberal amount of sea salt. Add two tsp. vanilla.  Beat, beat.  Taste. Modify as needed. YUM. There are other great icings you can make! 

JanieSignature SEIZE THE WISDOM

** Come join the STTM Facebook page for daily inspiration and wisdom!

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